Infertility is a medical condition that often requires medical treatment. Infertility has wide-reaching consequences for individuals, families and society.
Infertility is a medical condition that often requires medical treatment. Infertility has wide-reaching consequences for individuals, families and society.
We believe that all Ontarians should have the opportunity to build a family. Infertility is a medical condition that prevents some Ontarians from doing so. These medical problems often require medical treatment(s) to overcome infertility. Right now in Ontario, one in eight couples is struggling with infertility. One in six couples has experienced infertility at some point in their lives. Both male and female infertility are on the rise. And many other Ontarians – same-sex and single people and people with illnesses like cancer or HIV – need help to start a family.
Access to assisted reproduction services should be free from any discrimination.
Every year, tens of thousands of Ontarians turn to assisted reproduction and other services like acupuncture and naturopathic medicine to help them conceive. Thousands more never seek help.
People who have experienced fertility problems or who have sought help told us about the barriers they face.
Ontario can do better. Ontario must do better. The status quo is not acceptable. We see a province where all Ontarians have the information they need to protect their fertility, where they are confident that they are receiving safe, high quality care, and where other barriers – such as cost, geography and stigma – do not keep them from getting the services they need.
To be the best place to create a family, Ontario must act now.
Janet and Philippe were graduate students in their mid-20s when they met and married. They wanted to finish their education and work for a few years before starting their family. When they started trying to conceive, Janet was in her early 30s. After six months of trying without success, they were concerned. They talked to their family doctor who advised them to keep trying for another six months. Seven months later, Janet returned to the doctor who referred the couple to a specialist. After several months of investigations and cycle monitoring, the specialist diagnosed a male infertility problem.
The doctor recommended in vitro fertilization (IVF) as the best treatment. But when the couple learned that it would cost $10,000 per cycle and that their employers’ health plans didn’t cover the treatments or the drugs, they decided to try several cycles of intrauterine insemination (IUI) with washed sperm instead – because they would only have to pay for the sperm washing. When the IUI wasn’t successful, the couple decided to try IVF. They also contacted an agency to ask about adopting a child, but were told that they would have to wait until they had finished all their fertility treatments before they could begin the adoption process.
Because of the high cost of treatments, Janet and Philippe could only afford two IVF cycles. To pay for it, they used money they were saving to buy a home. They still had to borrow money. During the treatments, Janet had to have her cycles closely monitored. She was often late for work. She didn’t feel comfortable discussing her medical problem with her manager, so she tried to work around it. This was very stressful for her. The drugs that Janet had to take to stimulate her ovaries were very hard on her, both physically and emotionally. The financial pressure, combined with the effects of the drugs and the couple’s sense of shame and failure, took a toll on their marriage. They were stressed and tense with each other. They found it very difficult to talk about their situation with each other or with others. Many members of the family and close friends did not know what they were going through.
Because they knew they could only afford two IVF cycles, the couple asked to have more than one embryo transferred. During the second IVF cycle, Janet became pregnant. When they discovered that they were going to have twins, they were elated. However, the multiple pregnancy was very difficult for Janet. She developed hypertension and gestational diabetes. She had to be hospitalized late in her pregnancy. Her babies were born at 32 weeks. Each weighed less than 2,500 grams and their lungs were under-developed. They had to spend almost two months in a neonatal intensive care unit.
Janet and Philippe are delighted to have their babies – a girl and a boy–- home now, but they are aware that their children may have health problems later in life because of being born prematurely. They wonder if some of the family’s stress and health problems could have been avoided if they had sought help earlier or if the cost of treatments had not been such a big factor in their choices.
Five Principles for Monitoring Fertility:
Canadian Fertility and Andrology Society, Guidelines for First Line Physicians
Knowledge IS power. The more people know about their health, the better able they are to make informed decisions – to improve their health, to manage their fertility and to seek help early, when it’s most likely to be successful.
Age is the single most important factor affecting the ability to conceive. Both male and female fertility decrease with age. Lifestyle factors – such as smoking, alcohol and the use of some recreational drugs – affect fertility as do an unhealthy weight, some medical treatments and other health conditions.
Fertility monitoring can help people to make informed choices about their fertility, including when to start a family and when to seek help with fertility. It can also facilitate timely referrals to fertility specialists.
To give people the information they need to protect their fertility and make informed decisions, we recommend:
Currently, about one in eight Ontario couples is struggling to build a family. Female infertility – problems producing eggs, blocked Fallopian tubes or endometriosis – is responsible for about 51% of fertility problems. Male infertility, including low sperm counts and abnormally-shaped or slow-moving sperm, accounts for another 19%. About 18% of infertility is a combination of male and female factors, and 12% is unexplained.70
A woman’s fertility can be affected by many factors, including:
For most women, fertility begins declining around age 30 – even for women with healthy lifestyles. This is because:
Many women are not aware of how they can be proactive in protecting their reproductive health.
A man’s fertility can be affected by many factors, including:
"I did not realize that age played such a significant role in fertility, and
infertility hadn’t even crossed my mind."
It is important for primary care practitioners to discuss the relevant factors for infertility with their patients. Ontarians should know how to best protect their fertility, but also be aware that no amount of prevention can reverse age-related fertility decline. Where there are no other fertility problems, leading a healthy lifestyle (e.g., maintaining a healthy weight, not smoking) may help to increase the chances of conceiving, but it cannot change the fact that fertility declines with age.
Early fertility education can help Ontarians to make informed decisions about their reproductive health and childbearing decisions. Also, the sooner that Ontarians are aware they may have a problem with fertility, the sooner they can be referred for treatment.
The goals of a provincial fertility education and monitoring program should be to ensure that:
One of the best ways for Ontarians to learn about any risks that might affect their fertility is to talk to their family doctor, nurse practitioner, naturopathic doctor or other primary health care provider. Primary care providers can and should play a key role in fertility education and monitoring. Primary care providers see patients at all ages. Women in their teens, 20s and early 30s are more likely than men to go for regular checkups. In 2006, 33% of 28 year-old women saw a family doctor for a general assessment compared to 13% of 28 yearold and 17% of 35 year-old males.73 Family doctors should be supported in incorporating fertility counselling into routine preventive health care.
Family doctors can help to educate their patients on ways to protect their fertility. Other providers also can do this. For example, the practices of naturopathic medicine, traditional Chinese medicine and homeopathy focus on treatments designed to balance hormones, increase blood flow and preserve fertility.
"I thought that people with health conditions
and in their late 30s had problems, and
that young, healthy people did not have
fertility issues. We are both very healthy
and didn’t think it would happen to us."
According to our survey of Ontarians who have used infertility services, only about one in four said that their doctor initiated a discussion about fertility with them before they were trying to start a family. Few received any fertility counselling before they experienced fertility problems. Those who did usually had a health problem that affected their fertility, such as pelvic inflammatory disease, obesity or PCOS.
Right now in Ontario, we are concerned that fertility is discussed and assessed too late. By the time many people have “the talk” with their primary care givers, they are already over 30 or experiencing trouble conceiving. Under the current OHIP fee schedule, physicians can bill for fertility counselling under a common counselling code. But there is no distinct billing code number, so there is no way to track how many Ontarians are receiving fertility counselling.
That said, Ontarians should also be given enough time to try to conceive naturally. After a year of trying to conceive naturally, about 90 percent of couples will conceive.74 A good fertility monitoring program would give younger Ontarians time to conceive naturally before referring them on to a fertility specialist.
We’ve heard that single heterosexual people, lesbian women and gay men are less likely than heterosexual couples to receive fertility education and monitoring. This gap in preventive care is an issue because – like the rest of the population – a proportion of single heterosexual people, lesbian women and gay men will have fertility problems.
The Government of Ontario has made a commitment to make fertility monitoring available to women earlier in life. But women are not the only ones who suffer from infertility. We recommend that men as well as women be educated about fertility and that men be offered fertility monitoring when their partners are being monitored or assessed.
Age is the single most important factor affecting the ability to conceive. Both female and male fertility decline with age – although at different ages and at different rates.75
Source: Reproductive Ageing: Guidelines for First Line Physicians for Investigation of Infertility Problems (Canadian Fertility and Andrology Society, 2004).
Although the concept of a biological clock is not new, many women think they can beat the clock by staying in good physical shape (“But I’m a young 40!”). This is not the case: ovaries continue to age regardless of how fit or active women are, or how careful they are about what they eat. Although the rate at which fertility declines is different for every woman, as the ovaries age both the number and quality of eggs deteriorate.76
Most women start becoming less fertile around age 30 and the process speeds up at age 35.77 In their 20s, women have a 20 to 25% chance of conceiving with their own eggs in a given month.78 By age 40, they have a 5% chance. By age 45, if she has not yet had any children, a woman’s chance of getting pregnant with her own eggs is virtually zero.79
"It never occurred to me that it could be a male issue."
Men start becoming less fertile around age 40 as sperm
count and sperm quality deteriorate.80 The risk of
miscarriage, stillbirth and fetal abnormalities increases
with the father’s age.81 A 35 year-old woman trying to
conceive with a 40 year-old man is twice as likely to miscarry as a woman of similar
age who conceives with aman under 40.82 When the father is over 40, the
risk of having a child with birth defects, such as Down’s
syndrome, abnormalities of the extremities and nervous system, and multiple malformations, doubles.83
Age is also a factor in the success of assisted reproduction. The chances of becoming pregnant, carrying to term and giving birth decrease with age, even with assisted reproduction.84 The younger women are when they seek treatment, the more likely that treatments will be successful. Currently, the average age of women seeking treatment is over 35 years.85 Assisted reproduction can only partly compensate for age and age-related decline in fertility,86 thus a good fertility education and monitoring program would facilitate the early referral of people who want help to fertility specialists.
Most Ontarians will be able to build a family on their own and will not need fertility monitoring. Most Ontarians will not want to go through fertility testing without good reason. To ensure health resources are used wisely, fertility monitoring should be offered only when there is evidence – such as the person’s age or past health problems – that testing is appropriate.
We recognize that primary care practitioners should always be able to make clinical decisions that best support their patients. We also recognize that decisions about undertaking testing and treatment always rest with the individual.
That is why we are recommending education for everyone in their 20s and testing/monitoring for all women in Ontario who are age 28 and older (and their male partners) who have not been able to get pregnant after one year of trying to conceive naturally.
Because a woman’s fertility declines more quickly over age 30, we are also recommending that all women age 30 and over who want to start a family have the opportunity to have their fertility monitored right away – and NOT be encouraged to try to conceive for a year before being tested. We estimate that providing fertility monitoring tests (see below for the tests to be used) to these women and their partners – where appropriate – would cost the Province approximately $1.6 million per year.
"My doctor thought it was too early for concern. I was 32. "
Furthermore, we believe that women age 30 and over should be referred to a fertility specialist if they have tried to conceive naturally for six months without success.
In our opinion, by providing education and fertility monitoring, more Ontarians will be aware of potential fertility problems they may encounter when trying to conceive, and the people who need assisted reproduction services will have a greater chance of success because they will be younger.
To be able to talk to their patients about fertility and provide high quality, consistent fertility monitoring services, primary care providers will need evidence-based clinical guidelines.
There are tests currently available to estimate ovarian reserve, the Follicle Stimulating Hormone and Antral Follicle Count. The semen analysis test is used to estimate fertility potential in the male partners of women undergoing testing. These tests are currently funded through OHIP, but are used to help diagnose infertility once people have already identified that they are having trouble conceiving.
About Fertility Screening tests
The Follicle Stimulating Hormone (FSH) blood test, taken on day one, two or three of the menstrual cycle, measures the level of a protein in a women’s blood that stimulates follicles (egg sacs) to produce and release eggs. The level of this hormone increases as a woman’s egg count (ovarian reserve) declines. Birth control pills and other hormones can affect the accuracy of this test, so it doesn’t work for women who are taking the pill or hormone birth control.
The Antral Follicle Count (AFC) uses an ultrasound camera inserted into a woman’s vagina to measure the actual number of follicles growing at that moment in her ovaries. The accuracy of this test depends on the skill of the person doing the ultrasound as well as timing. The test must be conducted during the first five days of a woman’s menstrual cycle.
The Anti-Mullerian Hormone (AMH) test measures the level of a hormone in a woman’s blood and is a good way to assess egg supply. The level of AMH in a woman’s blood is unaffected by birth control pills and other hormones. This test is not yet licensed for use in Canada.
Semen Analysis measures the quantity and quality of a man’s sperm, including how much semen a man produces, the number of sperm in each semen sample, as well as the movement and shape of the sperm – all of which reflect on male fertility potential. The analysis must be conducted within one hour after the man provides the semen sample.
Currently approved and funded tests to estimate ovarian reserve and fertility potential are limited in what they can assess. The tests for female ovarian reserve can help estimate how many eggs a woman has, but they are not able to determine the quality of those eggs or whether a woman will have trouble conceiving or carrying to full-term. The tests do not work if a woman is taking birth control pills or other hormones. They work best on women who are older or more likely to experience a sharp decline in ovarian reserve.
The test available to assess men’s fertility is more helpful in identifying men who may experience infertility.
Despite the limitations, these are the tests that are currently licensed for use in Canada. These tests are effective when used along with the other diagnostic assessment tools available to physicians (e.g., hysterosalpingogram is used to image and assess the uterus and the Fallopian tubes) to diagnose fertility problems. They can also be used to get a better understanding of fertility potential when used in a fertility monitoring program on the appropriate people.
We are aware that more accurate tests to identify overall fertility potential are being developed and we encourage Ontario to adopt these tests as soon as they are approved for use in Canada.
All three tests – the follicle stimulating hormone, antral follicle count and semen analysis – are currently being used across the province, but with not enough consistency on how to conduct the tests and how to interpret the results. Laboratories and providers need standards, guidelines and training to ensure that tests will be conducted and interpreted in the same way across the entire province.
To help Ontario implement a comprehensive, evidence-based fertility education and monitoring program, we recommend that:
1.1 The Government of Ontario should ensure that all primary care practitioners are educated about fertility and related issues including: the impact of age on fertility, male and female infertility, and the important risk factors that affect fertility; the reproductive needs of nontraditional families; and the complementary services available to enhance fertility or treat infertility.
1.2 All primary care practitioners – including naturopathic doctors and doctors of traditional Chinese medicine – should make fertility education/counselling a routine part of care for all patients, beginning in their 20s. This includes males and females, those in a relationship or single (including those who are not trying to start a family), regardless of sexual orientation.
1.3 The government should ensure that printed and web-based educational materials are developed and made available to primary care practitioners to share with their patients.
1.4 The government should adjust the Ontario Health Insurance Plan fee schedule to allow physicians to identify counselling services that are provided specifically for infertility so that practitioners can make the time for this in their busy practices and the government can understand how many Ontarians are receiving this information.
1.5 All primary care providers, obstetrician/gynecologists or fertility specialists should offer fertility testing/monitoring to:
Anyone who, based on fertility monitoring, appears to have a fertility problem should receive a timely referral to a fertility specialist (e.g., women under 30 should be referred after 12 months of trying to conceive naturally without success; women aged 30 and older should be referred after six months).
1.6 Clinical practice guidelines for fertility education and monitoring should be developed that include:
1.7 The government should continue to fund existing tests (i.e., Follicle Stimulating Hormone, Antral Follicle Count, Semen Analysis tests) and introduce newer tests (i.e., Anti-Mullerian Hormone) that are more accurate and easier to use as they become available and are approved.
Each year, tens of thousands of Ontarians turn to medical procedures, such as in vitro fertilization and intrauterine insemination – to help them build their families.
Source: Canadian Institute for Health Information, Provincial Health Planning Database, Ontario Ministry of Health, 2006.
Assisted reproduction services are provided in 14 specialized clinics and several fertility centres and private physician offices in Ontario. Most of the 14 are private, free-standing clinics located in the Toronto, London and Ottawa corridor. Three receive some funding from MOHLTC, two of these are public clinics located in hospitals and the other is not located in a hospital.87
The clinics and physicians’ offices that provide assisted reproduction services are not required to be accredited and information about their practices and success rates is not easily available – so it is difficult for Ontarians to make an informed choice about where to go for care or to be confident that their care is safe.
Assisted reproduction can be a safe and effective way to build a family. However, the way services are currently used in Ontario means that there are risks – both to the women and the babies conceived using assisted reproduction – when the procedures result in multiple births (e.g., twins, triplets or more). The good news is these risks can be avoided.
To ensure Ontarians have access to assisted reproduction services that are safe and meet current clinical best practice guidelines, we recommend:
There is a wide range of assisted reproduction services available to help people build families, including drug treatments to induce or regulate ovulation, surgery to clear blocked tubes or remove fibroids from the uterus, intrauterine insemination, in vitro fertilization, technologies like egg retrieval that help people preserve their fertility, counselling, and complementary therapies, such as acupuncture.
In our work, we focused specifically on treatments and other services where there were issues related to safety, appropriate use, cost and/or access, including:
In IUI, washed and filtered sperm are injected into the uterus when a woman is ovulating. IUI is used mainly when:
Source: Adapted from information provided by the Ministry of Health and Long-Term Care from fiscal year 2003-07.
IUI may be used alone or with controlled ovarian stimulation (COS). COS involves the woman taking medication to help her produce more than one egg in a menstrual cycle and then timing the insemination to her ovulation. COS can increase the chances of conceiving through IUI by making more eggs available for fertilization by the sperm. IUI requires frequent blood tests and ultrasounds to identify when the woman is ovulating. It may also require sperm washing, a process that uses a centrifuge to separate the best sperm from seminal fluid.
The use of IUI is increasing over time: over 22,000 IUI procedures were done in Ontario in 2007.
|Advantages of IUI||Disadvantages of IUI|
|Does not involve surgical or other procedures nor require women to take much time away from work (i.e., minimally invasive).|| Lower success rate per cycle of treatment than IVF.
Because it is inexpensive, used even when IVF would be more effective.
|Relatively inexpensive (most costs covered by OHIP).||Cannot be used for women who have blocked tubes.|
|Effective option for women who do not have fertility problems but who require donor sperm.||When COS is used, there is a high risk of multiple conceptions (i.e., doctors cannot control the number of eggs that are fertilized).|
IVF is a process by which a woman’s eggs are fertilized outside of the body. With IVF, the woman usually takes medication to help her produce more eggs (COS). The eggs are then removed from the woman’s ovaries and fertilized in the lab using either her partner’s or a donor’s washed sperm. One or more of the resulting embryos are then transferred to the woman’s uterus.
Source: Canadian Fertility and Andrology Society
IVF is used for cases of both male and female factor infertility and for people who require donor eggs. As with IUI, a woman going through IVF must have frequent blood tests and ultrasounds in order to monitor the effects of the drugs and to schedule the procedures at the right time in her cycle.
Currently, in 50% to 70% of cases, IVF is used with intracytoplasmic sperm injection (ICSI), which involves using specialized tools to select a high quality sperm and inject a single sperm directly into each egg. Although ICSI is only recommended in cases where men have severe male factor infertility, more Ontarians opt to use ICSI because it improves the chances of fertilization. This increases the chances of having an embryo that will implant and grow, and of having embryos available to freeze.
Some people who go through IVF will freeze and store excess embryos and use them the next time they want to try to get pregnant. Freezing and storing embryos means the woman does not have to go through the drug treatment and egg retrieval process again. In 2006, 8,278 cycles of IVF – with or without ICSI – were started at clinics across Canada. Over half of these cycles – 4,321 – were done in Ontario.
|Advantages of IVF||Disadvantages of IVF|
|For people with certain indications, IVF is the only option for building a family through assisted reproduction services.||Invasive and requires women to take time off work.|
|High cost causes people to transfer more than one embryo (which increases the multiple pregnancy rate) or to use ICSI when it is not necessary.|
|Can reduce risk of multiple births (because the number of embryos transferred can be controlled).|
|Advantages of ICSI||Disadvantages of ICSI|
|ICSI is the only way to overcome severe male factor infertility or male sterility.||Increased risk of sex chromosomal abnormalities in male children.|
|Expensive, as it must be done as part of IVF (not covered by OHIP).|
|Advantages of Freezing and Storing Embryos||Disadvantages of Freezing and Storing Embryos|
|Woman will not have to go through as many egg retrievals and fewer fertility medications are required.||Ethical issues that arise if all frozen and stored embryos are not used by the woman.|
|Reduces the risk of multiple births by using frozen embryos and implanting one or two frozen embryos each time.||Cost (not covered by OHIP) so use of these services is very low.|
|Cost of a frozen embryo transfer is lower than the cost of a fresh embryo transfer.|
Eggs, sperm and embryos can be frozen and stored to preserve fertility for people who are going through treatments for illnesses that might affect their fertility, such as women and men having radiation therapy, surgery or chemotherapy for cancer.
The two most effective methods of preserving fertility are sperm and embryo freezing. Eggs are more viable when they are fertilized and frozen as embryos.88 However, some women who want to preserve their fertility may not have a partner to provide the sperm, and they may choose to either have their eggs frozen or use donor sperm.
“I did acupuncture to get my body in order and feel better and use it as a
stress release. This helped me feel like I was getting healthy again. – ”
Many Ontarians are turning to complementary therapies, such as acupuncture, naturopathy and traditional Chinese medicine – either with, or as an alternative to, assisted reproduction. Naturopathic and traditional Chinese medicine are regulated professions in Ontario and both offer treatments that are intended to promote overall health and well-being, promote fertility and treat infertility.
According to our online survey, almost half of the people who responded used some kind of complementary services. The most common was acupuncture, followed by naturopathic and traditional Chinese medicine. Many others reported using massage and other forms of physical therapy. Respondents reported that they used acupuncture mainly to reduce stress, help them relax and improve their mental and physical health while undergoing assisted reproduction services.
At the current time, IVF clinics and fertility centres are not required to be accredited – although reproductive endocrinologists, nurses, most counsellors and other health professionals who provide assisted reproduction services are all members of regulated professions and are required to meet the standards of practice set out by their regulatory colleges. Clinics can be accredited by Accreditation Canada on a voluntary basis. Not all Ontario clinics are accredited. Without mandatory provincial accreditation, there are no common provincial standards for clinic operations, the services they should offer nor the prices that clinics should charge for their services.
As an Expert Panel, we support Quebec’s position. We believe that Ontario should be responsible for regulating its assisted reproduction services, and that the costs of accrediting clinics should be borne by the Province.
In 2004, the Canadian Government passed the Assisted Human Reproduction Act (AHRA) which sets out rules for assisted reproduction services. Most of the regulations for the Act have not yet been drafted or enacted but, when they are, they will apply to all assisted reproduction clinics in Canada. As we were writing our report, the Government of Quebec had challenged this law, arguing that provinces and territories should be responsible for regulating assisted reproduction clinics – as they are for all other aspects of their health care systems. The Quebec Court of Appeal upheld the Quebec challenge. Several other provinces joined Quebec in this challenge, as it has now been appealed to the Supreme Court of Canada. A decision is expected imminently.
This means that, if the Supreme Court overturns the Quebec Court of Appeal judgement and the law is upheld, Ontario clinics will be regulated based on federal standards and the federal government will be responsible for covering the costs associated with licensing and regulating the clinics. Regardless of the court decision, we believe that Ontario should take an active role in the accreditation process to ensure that clinics and practitioners are providing safe, high quality care for Ontarians.
Assisted reproduction is still a relatively young science and clinical practice. It is only 31 years since the first baby was born using IVF. Since then, knowledge, procedures and success rates have improved significantly. For example:
While the overall success rates for assisted reproduction have improved, the success rates of individual clinics vary and depend on a number of factors, including the age of the women being treated and the skill of the practitioners and embryologists. Currently, clinics voluntarily submit their clinic-specific data (e.g., success rates, multiple rates) to the Canadian Fertility and Andrology Society (CFAS). The data for all Canadian clinics are combined and used to educate providers and the public on the status of IVF in Canada. The information reported is for all of Canada. There is very little information available for Ontario to learn about what services are offered in the province and how each of our clinics is doing.
This means that there is little information for Ontarians seeking assisted reproduction services about what is available, where it is available and which clinic is best for them. There is currently no consistent, clinic-specific information about success rates to help people make an informed decision about which clinic is right for them. This clinic-specific data would help to support Ontarians in making choices about assisted reproduction services that are best for them, help physicians to exchange knowledge and be used to hold clinics accountable to high standards of safety and quality.
We believe that Ontario should require all IVF clinics and fertility centres to be accredited in order to provide assisted reproduction services. Regardless of the Supreme Court of Canada’s decision on the AHRA, the government should identify a provincial body to accredit clinics and centres and hold them to the highest standards. This will help to protect the health and well-being of Ontarians using assisted reproduction services.
Assisted reproduction has been shown to be safe for women and their children. In 2006, there were over 1,500 babies born in Ontario from IVF. Babies born through all assisted reproduction now represent about 1% to 2% of live births in Ontario.
Canada and Ontario have not consistently followed children born through assisted reproduction to assess the impact of the procedures on their long-term health and well-being. However, we do know that when children are part of a multiple birth or born to older mothers, they are more likely to have health problems than babies who are naturally conceived or than single babies. Multiples are also more likely to experience developmental delays.
Despite slightly greater use of health services, children born through assisted reproduction do not have any significant developmental delays compared to children conceived spontaneously. Being born through assisted reproduction does not appear to affect children’s motor or cognitive development.
We also know that children conceived using IVF-ICSI for severe male factor infertility have a higher rate of sex chromosomal abnormalities than those conceived naturally or by IVF alone.91 These abnormalities may affect the normal development of the genitals in boys.92 We believe that it is important for Ontario to collect information on the development of children born through assisted reproduction to provide more information on the long-term impacts of these procedures.
Women who use assisted reproduction also face risks including the effects of fertility drugs (e.g., ovarian cyst formation) and a low risk associated with the egg retrieval (e.g., infection or bleeding). Women who take fertility drugs but do not get pregnant also have a greater chance of developing breast cancer or uterine cancer later in life.
Independent of the use of assisted reproduction, the risks of pregnancy increase with age. Women over age 35 are more likely to miscarry and experience complications during their pregnancy.93 They are also more likely to have gestational diabetes or high blood pressure or require caesarean delivery.94 Children who are born to women over age 35 are more likely to require special medical care when they are born.95
The multiple birth rate from:
Twins occur naturally in 2% of spontaneously conceived pregnancies.
The single greatest risk to both children’s and mothers’ health associated with assisted reproduction is from multiple births. There is a much higher incidence of multiple births with assisted reproduction than with unassisted pregnancies.
When COS is used with IUI, about one in four births (21% to 29%)96 will be multiples (e.g., twins, triplets). Of the 1,500 IVF-related births in 2006, 70% were singletons and 30% were multiple births (two or more babies).97 According to the Canadian Institute for Health Information, the use of fertility treatments results in a multiple birth about one-third of the time.98 In fact, Ontarians using assisted reproduction are 10 times more likely to have a multiple birth than those who do not. Babies born through assisted reproduction represent about 1% to 3% of all singleton (one baby only) births in Canada, 30% to 50% of twin births and more than 75% of higher order multiple births.99
Multiple Births Put Children at Risk
We recognize that there are healthy twin and triplet babies born in Ontario each year. However, we believe that the chance of poor health outcomes for multiples is so high that Ontario must act to help provide the best start in life for children born from assisted reproduction.
The risks of hospitalization and other health problems are much greater for children who are part of a multiple birth than for singletons. More than 50% of twins and 90% of triplets are born prematurely (< 37 weeks gestation) and have a low birth weight (<2,500g).100 Premature infants are often born with immature lungs, which can lead to a chronic lung disease that will affect their health for the first 10 years of their lives.101 Babies born with low birth weight (i.e., <2,500 grams) are more likely to die during the first year of life and are at higher risk of having learning disabilities, developmental disabilities, and visual and respiratory problems than children who are born a healthy weight.102 With better medical technologies, more pre-term babies are surviving. However, they are more likely to have health problems throughout their lives than full-term babies.
Multiple Births Put Mothers at Risk
Multiple births are hard on mothers. Women pregnant with multiple children are three to seven times more likely to have complications, such as anemia, hypertension, and gestational diabetes.103 They are also more likely to go into premature labour and to require a Caesarean section.104After the babies are born, they are more likely to experience problems like endometriosis, bleeding, infections and mental health problems (e.g., depression, social isolation) than mothers of singletons.105
Multiple Births are Costly for the Health Care System
On average, low birth weight twin babies will cost the health care system about one million dollars each over their lifetime.
Because both babies and mothers are at risk of complications, the financial cost of multiple births is high – during pregnancy, at delivery and later in life.106 Women who are pregnant with twins or other multiples require more prenatal visits. They are more likely to be hospitalized during a pregnancy and more likely to need a Caesarian section, which is a more costly delivery than a vaginal delivery. Babies who are part of a multiple birth are more likely to remain hospitalized longer after birth and need neonatal intensive care services. Babies with long-term health problems and development delays also cost the system more over their lifetime.
Concern over the high rate of multiple births – and their effect on children’s and mothers’ health – has led many jurisdictions to limit the number of embryos transferred. In IVF, policies limiting the number of embryos transferred are now preferred practice.
It Works in Other Jurisdictions
Ontario Can Do More to Reduce Multiple Births
In guidelines developed by the Society of Obstetricians and Gynecologists of Canada, IVF programs are encouraged to develop embryo transfer policies that minimize multiple births while maintaining pregnancy and birth rates.
|Woman's Age||Prognosis||Recommendation Fresh Cycles|
|Under 35 years||Excellent||Single Embryo Transfer|
|Favorable||No more than two embryos transferred.|
|35-37 years||Favorable||One to two embryos transferred in first or second cycle.|
|Other||No more than three embryos transferred|
|38-39 years||Favorable||Two embryos in first or second cycle.|
|Other||No more than three embryos transferred.|
|Over 39 years||Favorable||Three embryos transferred.|
|Other||No more than four embryos transferred.|
|Exceptional Cases (regardless of age)||Very poor/multiple failed attempts||Transfer of more embryos than recommended above (physician discretion).|
Note: Excellent/favorable prognosis is defined as undergoing first or second cycle, previous successful pregnancy, good quality embryos.
Note: In donor egg cycles, the age of the egg donor should be used to determine the number of embryos to transfer.
Despite these guidelines, the number of single embryo transfers done in Ontario remains low (just over 2% of cycles) and our multiple birth rate is 27.5% – much higher than in Australia (11%), Sweden (5%) and Belgium (7%).
A successful policy that would reduce the number of multiple births resulting from assisted reproduction requires the support of physicians, counsellors and other providers. It is essential that these providers are aware of the health, psychological and emotional impacts of multiple births on children, women and families.
Although the vast majority of our multiple births (95%) are twins (indicating that Ontario physicians are not transferring a large number of embryos) – we can and must do more to protect the health of women and children.
Ontario Should Do More to Reduce Multiple Births
We believe that to protect the health and well-being of the children born from assisted reproduction, the Government of Ontario should require – as a condition of accreditation – clinics and fertility centres to reduce their multiple birth rates. The examples set by other jurisdictions lead us to believe that a reduction in multiple birth rates to 15% within five years and 10% within 10 years is possible in Ontario. The government should work with the appropriate medical organizations to develop the guidelines and other supports the clinics and fertility centres will require to achieve this goal.
By following our recommendations, we estimate that Ontario would reduce the number of low birth weight babies born from assisted reproduction by 2,625 over the next 10 years. We feel strongly that this recommendation should only be implemented in conjunction with our recommendations on funding (please see page 118). The success of this recommendation depends on the public funding of IVF and the education and support of providers and patients.
IUI Procedures Also Contribute to Multiple Births
As discussed earlier, whenever an IUI procedure is done along with controlled ovarian stimulation (COS), it is very difficult to limit the risk of a multiple pregnancy. The current multiple birth rate from IUI is similar to the multiple birth rate of IVF. The only way to reduce the chance of a multiple birth is to monitor the number of eggs produced and convert the procedure to an IVF cycle if there are many eggs produced.
In order to reduce the chance of a multiple birth from IUI, we believe that the government, in collaboration with the appropriate medical organizations, should ensure that guidelines are developed on when to convert a funded IUI procedure to a funded IVF cycle.
The Use of Fertility Medications Contributes to Multiple Births
Some Ontarians who experience fertility problems do not require IUI or IVF. Many people require fertility medications alone to overcome these issues. Fertility medications often lead to multiple births because they stimulate the production of many eggs in a single month. We believe that injectable fertility medications should never be prescribed without cycle monitoring.
There Are Other Ways to Protect the Safety of Women and Children
In addition to reducing multiples, there are other ways that the safety and well-being of the children, women and men using assisted reproduction can be protected.
It Is Important to Know When to Start – and When to Stop – Treatment
It is not always safe for some women to get pregnant, with or without assisted reproduction services. Certain factors (e.g., a woman’s age, clinical history) may mean that it is not in the best interests of a woman’s health for her to begin or continue assisted reproduction services. Similarly, there should be safe practice guidelines regarding when to stop treatments. It may be difficult for patients who have had treatments fail to make this choice – and therefore physicians should be provided with guidelines that will support them in protecting the health of their patients.
It Is Essential to Have the Right People Delivering Care
Fertility services are offered by different providers. IVF is offered in the 14 IVF clinics in Ontario, while other services (e.g., IUI) are offered in fertility centres or by community gynaecologists. We believe that all providers should be held to standards and guidelines.
To protect the safety of Ontarians using assisted reproduction, it is essential to hold the providers of these services to the highest standards. We believe that Ontario should ensure that only appropriately qualified people are permitted to provide the full range of assisted reproduction services.
There are many other providers who support people using assisted reproduction services (e.g., family doctors, acupuncturists, naturopathic doctors who specialize in fertility, counsellors). It is essential that all of these providers are given accurate, appropriate, current information so they are best able to support their patients. We believe that Ontario should support these providers by providing them with this information so the people who are using their services know they are receiving high quality, professional care.
Our report and all of our recommendations are based on the research and technologies available today. As with other medical technologies, there are fast-paced advances in assisted reproduction services that mean the way that providers deliver care is constantly changing. In order to provide safe, high quality reproductive services, it is essential that Ontario examine the state of these technologies at least every five years and update policies and practices to reflect current capabilities.
To create a world-class system of assisted reproduction services in Ontario, it is essential that the Province have the tools to measure success and identify where we need to improve. Ontario must also be aware of the newest technologies and practices. We believe that by creating an academic centre of excellence for assisted reproduction, the government would ensure that providers, clinics and centres are held to the highest standards and supported to provide world-class care. This centre of excellence should be responsible for conducting research, highlighting best practices in assisted reproduction within Ontario and across the world, and reporting advances in technologies to ensure public policies are timely.
To ensure that assisted reproduction services in Ontario protect the health and well-being of all people involved, we recommend that:
2.1 The Government of Ontario should identify a provincial body to provide a mandatory accreditation program for clinics and fertility centres in Ontario.
2.2 All clinics and fertility centres should be required to be accredited within five years in order to provide assisted reproduction services in Ontario. The cost of accreditation should be paid for by the Province.
2.3 To maintain their accreditation, fertility clinics and centres must reduce their annual multiple birth rate to less than 15% within five years and to less than 10% within 10 years.
2.4 To help clinics meet this target, clinical practice guidelines should be developed that set out:
2.5 Providers should be given information to inform them of the negative impacts of multiple births and the benefits of transferring fewer embryos for children, mothers and families.
2.6 To control for multiple births and protect the safety of the children and women using assisted reproduction, clinical practice guidelines should be developed on the safe prescribing of all fertility medications.
2.7 As a condition of accreditation, clinics should be required to collect and report on:
2.8 To support physicians in providing the best possible care, Ontario should collect aggregate and anonymized data on outcomes of:
2.9 To reduce the risks for children, intracytoplasmic sperm injection should be provided only for individuals where:
2.10 Clinical practice guidelines should be developed by a panel of andrologists and reproductive endocrinologists that clearly define “severe male factor infertility.”
2.11 Clinical practice guidelines should be developed to identify:
2.12 Ontario should examine the state of assisted reproduction technologies every five years and update policies and practices to reflect current capabilities.
Centre of Excellence
2.13 An academic centre of excellence for assisted reproduction should be created to work with the medical and research communities and service providers to:
A few years after Eva and Rudy were married, they tried to start a family but were unsuccessful. They did not have a regular family physician, so it took some time for them to find someone who would refer them to a specialist. The fertility clinic was several hundred kilometers from their home, so every visit cost them in travel and accommodation, as well as in lost work time – she from her cashier’s job in a local supermarket and he from his job at a gas station. They were diagnosed with a combination of female and male infertility, and the specialist recommended IVF. Rudy had some health benefits from his work, but they did not cover either the treatments or the medications they would need. Although they desperately wanted to have children, they decided they simply could not afford the treatments. Three years later, they are now on a waiting list for adoption with their local children’s aid society. While they are looking forward to adopting, they are concerned that assisted reproduction is only an option for families with higher incomes.
Currently in Ontario, publicly-funded assisted reproduction services include IUI for all women and up to three cycles of IVF for women whose two fallopian tubes are completely blocked or absent (not as the result of voluntary sterilization). Complete blockage of the fallopian tubes accounts for only 2 0% of the need for IVF treatments. Even for these insured patients, the costs of treatment can still be out of reach.
Despite the fact that infertility is a medical condition, most assisted reproduction services – including ancillary services such as sperm washing for IUI and ICSI for male factor infertility – are NOT covered by our universal health insurance plan.
As a result, Ontarians who need to use assisted reproduction to build their families face high costs: up Even for those who can afford IVF, the to $6,000 (not including medications, lost work time or process can be financially devastating. travel costs for people in communities that do not have
The average cost of a single cycle of IVF a clinic) for each cycle of IVF. These costs put assisted is $10,000 including medications – reproduction – particularly IVF – out of the reach of almost 14% of the median family income most Ontarians. According to the Infertility Awareness in Ontario. Association of Canada, the real need for IVF treatment is much higher than the number of people actually using IVF. Because of the cost, many people who could benefit from IVF are not accessing these services.
Even for those who can afford IVF, the process can be financially devastating. The average cost of a single cycle of IVF is $10,000 including medications – almost 14% of the median family income in Ontario.
But the lack of public funding for assisted reproduction isn’t just hard on individuals – it is hard on our health care system – because it is contributing to high rates of multiple births. The low number of single embryo transfers done in Ontario is driven, in part, by a lack of patient choice. Faced with costs of over $10,000 per IVF cycle (including medications), many Ontarians are willing to risk having more embryos implanted and using ICSI, even when it is not clinically indicated, in order to have a greater chance of getting pregnant and taking home a baby. Many cannot afford to do otherwise.
However, as we discussed in the previous section, multiple births cost the system tens of thousands of dollars more than singleton births to care for the women during pregnancy and delivery and for the babies at birth – not to mention the long-term health and social costs. In our view, Ontario cannot afford to NOT fund assisted reproduction services. At the same time, we believe that health care resources should be used wisely and the publicly-funded health care system should only fund assisted reproduction when there is a reasonable chance of success.
We recommend that:
The government fund up to four cycles of intrauterine insemination, including sperm washing, for women age 41 years +12 months and younger.
Ontario fund up to three cycles of in vitro fertilization – including ICSI when clinically indicated, the freezing and storage of embryos, and frozen embryo transfer – for women age 41 years + 12 months and younger.
Women who have two or more good quality frozen embryos be required to undertake publicly-funded frozen embryo transfer before another publicly-funded fresh IVF cycle is provided.
Clinical practice guidelines be developed by a panel of andrologists in consultation with fertility specialists to assess conditions which indicate “severe male factor infertility” and require ICSI.
"We didn’t want to get into debt, and then have a baby and not be able
to pay for daycare or education for the child. I would have done IVF if it wasn’t
so expensive. I took it off the table because of the cost."
For many Ontarians, there is no public funding for assisted reproduction services. This means that in 2009, for every cycle of IVF, people must pay about $6,000 for treatment alone – around $8,000 if ICSI is also required. Even for patients whose treatment is covered under OHIP, costs range from $1,500 to $5,000 per cycle (depending on whether they go to a public or private clinic). Ontarians who need IUI, a funded service, must still pay hundreds of dollars for sperm washing and administrative fees. These amounts do not include all of the other costs necessary for treatment – medications (which may cost just as much as IVF itself), travel, accommodation and time off of work – which add thousands more to the cost.
Range of Cost for Insured Patient
Range of Cost for Uninsured Patient
|Embryo Thawing and Transfer||$650-$1,250||
|Embryo Freezing/Storage for One Year||
Note: Prices are representative of the clinics who report their fees online only.
Only 80 of 3,758 women in 2006 (2.2%) and 112 of 4,022 (2.8%) in 2007 who received IVF agreed to have a single embryo transfer. The unwillingness to have a single
embryo transfer is due to a number of factors, including:
• The cost of IVF treatment in Ontario, which means that patients want to increase the likelihood of becoming pregnant each time.
• Patients having the option of reducing a multiple pregnancy (i.e., selective fetal reduction).
• Many people considering twins an ideal and benign outcome of treatment.
The high cost of assisted reproduction leads people to make choices that may not be good for their health, the health and well-being of their children or the sustainability of the health care system. Cost is contributing to inappropriate treatment and higher rates of multiple births. For example:
Cost is also a key factor in Ontarians’ decision to seek care outside the country. A number of people who responded to our online survey reported that they chose to purchase assisted reproduction services from clinics in other countries. The main reasons for leaving the province for assisted reproduction services were lower costs and higher success rates.
It Costs More to Care for Multiple Births than to Prevent Them
The cost of treatment makes it very difficult for Ontarians to accept single embryo transfer. As a result, the health care system is now spending hundreds of thousands of dollars a year dealing with the consequences of an unacceptably high rate of twins being born.
|Hospital Costs (Delivery and Post-natal)||
|Vaginal Delivery - $2,700||Caesarean Delivery - $4,600||
|Caring for a Normal Birth Weight Baby - $795||Care for a:Low birth weight baby - $12,354 • Baby weighing less than 750 grams at birth - $117,806||
|Admitting a baby to the neonatal intensive care unit - $9,700||
The average hospital cost to care for multiple births is consistently higher than caring for singletons.113Multiples are 17 times more likely to be born pre-term,114 and being pre-term is a key factor in how much a child will cost the health care system.115 Multiple births are more likely to require caesarean delivery, which is more expensive than a vaginal delivery. Also, multiple births are more likely to have low birth weights and require specialized, intensive care at birth.
These high costs can continue through life as a number of multiple birth children struggle with neurological problems such as cerebral palsy, as well as physical and developmental disabilities.116 On average, over the lifetime of a low birth weight baby, health care and education costs exceed $1 million.117
Modified from original source: Omebelet, W, De Sutter P, Van der EJ, Martens G. Multiple gestation and infertility treatment; registration, reflection and reaction - the Belgian Project. Human Reproduction Update 2005; 11(1)
Ontario is out of step with a number of other jurisdictions that fund IVF – including Belgium, Netherlands, Sweden, Denmark, Finland and Australia – all of whom have lower rates of multiple births than Ontario. The decision to fund IVF is usually driven by the desire to reduce multiple births and their health and social costs. By paying for procedures like IVF, countries have been able to reduce the risk of people having twins or triplets while still containing health costs and maintaining the number of live births. The Government of Quebec has recently announced that it will soon fund three cycles of IVF and other associated medical services for its citizens.118 In the meantime, Quebeckers will continue to have access to a 50% tax credit for offsetting the costs of assisted reproduction.
Reducing multiple births is an essential step in protecting the health of Ontarians and ensuring the best use of public spending on healthcare. We feel strongly that these recommendations must be implemented with a government commitment to fund IVF. As demonstrated in other jurisdictions, public funding is the key component of a successful strategy to reduce multiple births. We believe that it is the right thing to do and that it makes good economic sense.
Funding IVF will reduce hospital and other health care costs and improve the health of mothers and babies across the province. We estimate that by following our recommendations, Ontario could save $400-$550 million over the next 10 years by reducing multiple births born from assisted reproduction. The Province would see another $300-$460 million (2009 dollars) in savings that would have been spent on these children over their lifetimes.119 The savings in health costs could be used to offset the costs of providing assisted reproduction services.
Babies born from assisted reproduction make up 1% to 2% of all live births in Ontario, but – because of the high rate of multiple births – they account for 20% of all the babies admitted to the neonatal intensive care unit (NICU) each year. It is very expensive to care for babies who require NICU services. There has been an increasing need for NICU beds in Ontario over the past few years. In 2008, MOHLTC announced $7 million in funding to provide 28 new NICU beds over the next two years.120 By following our recommendations and reducing the multiple birth rates of clinics and fertility centres, some of the high costs of increasing the number of NICU beds across the province would be avoided.
The reality of an ageing Ontario population also means that having more babies makes economic sense. By funding assisted reproduction services, we estimate that, over the next 10 years, Ontario would have 7,042 more babies born than if the current situation remains unchanged. More importantly, these babies would be more likely to be single, healthy babies – giving them the best beginning in life.
While we support public funding for assisted reproduction, we do not want to place an unreasonable burden on the public health care system. We believe assisted reproduction services should be publicly funded only when safe and there is a reasonable chance they will be successful.
Source: “Birth Rates and Cycle Probabilities”
The success rate with assisted reproduction – that is, the proportion of people who will become pregnant and take home a baby – is affected by the age of the woman, her eggs and, possibly, her partner. IVF can make up for about half the births lost by postponing pregnancy from age 30 to 35,121 but only one-third of the births lost by the time women are between the ages of 35 and 40.122 Women who are over 42 have less than a 7% chance of becoming pregnant.123The lower success rates are largely dependent on the number and quality of a woman’s eggs – which deteriorate with age. The success of IUI – which is also dependent on the quality of eggs – also declines with age. Currently, most women who use assisted reproduction services are already 35 or older.124 Ontarians who need assisted reproduction services should seek treatment as early as possible.125
We believe that Ontarians should have access to assisted reproduction – when there is a reasonable chance of success and when the risks of pregnancy and delivery are lowest. In looking at the success rates of assisted reproduction in Ontario, the current data show that IVF rarely works for women age 42 and older.126 Considering the pregnancy-related risks, it also appears that women age 42 and older are at greater risk during pregnancy and delivery. This data should be reviewed periodically to account for changes in technologies. However, to limit the financial burden on the health care system and ensure safety, we believe, at this time, that publicly funded IVF and IUI should be available only to women under the age of 42 years.
Jurisdictions that do fund IVF often limit their funding to women up to a certain age, based on the evidence of low success rates for women in their 40s, and limit their funding to a certain number of IVF cycles, based on the fact that more cycles don’t necessarily lead to more success.
The following table lists the limits or restrictions that other jurisdictions put on public funding for assisted reproduction.
|Sweden||One to three cycles of IVF/ICSI depending on the county.||
Single embryo transfer unless prognosis is poor. Age limit of 38 for women to be eligible for publicly-funded IVF.
|Denmark||Maximum of three cycles of IVF/ICSI.||
Woman must be childless. Limit on the number of embryos that can be transferred based on age. Age limit of 40 for women to be eligible for publicly funded IVF.
|Finland||Maximum of three to four cycles of IVF/ICSI at public clinics.||
No limit on the number of embryos but customary practice is maximum one to two embryos – three in exceptional circumstances.
|Belgium||Maximum of six cycles of IVF/ICSI in a lifetime.||
Limit on the number of embryos based on age and # of cycles. Age limit of 42 for women to be eligible for publicly funded IVF.
|Australia||Unlimited number of IVF/ICSI cycles. Up to 80% of costs are covered.||
Limit on the number of embryos that can be transferred based on age. Age limit on women who are eligible for publicly funded IVF – set by clinics and ranges from 43 to 51.
For women under age 42, there is a very good chance – as high as 71% for women under 35 years – that they will have at least one live birth after three cycles of IVF.127 If a woman has not been able to get pregnant after three cycles of IVF, her chances of becoming pregnant are less with each additional procedure.128
Similarly, for people using IUI, more procedures do not necessarily equal more success. A woman who undergoes four cycles of IUI without success is less likely to conceive with more cycles.129
We believe that, to be responsible, publicly-funded access to assisted reproduction should be limited to a maximum number of cycles. We believe that three funded cycles of IVF and four cycles of funded IUI procedures are appropriate.
It costs a lot less to freeze and store good embryos, then thaw and transfer them, than it does for a fresh IVF cycle. The chances of a woman becoming pregnant using a frozen embryo are quite high. To reduce the cost to the health care system and give Ontarians more opportunities to have a healthy baby through assisted reproduction, people must be willing to have fewer embryos transferred in each cycle. We believe that the costs of freezing and storing any extra embryos from an IVF cycle and costs of a frozen embryo transfer should be covered by the government. This will make it easier for Ontarians to agree to transfer fewer embryos in each cycle – because they know they will have up to two frozen embryo transfers to increase the chances of conceiving with each IVF cycle.
Women with extra, good quality frozen embryos should be required to have up to two frozen embryo transfers before the system will pay for another fresh IVF cycle.
All clinics would be expected to follow evidence-based guidelines on how to identify good quality embryos that would be eligible for freezing and transfer. Provincial guidelines should be developed to guide IVF clinics.
While we do want to limit the unnecessary use of ICSI, it is the only way to overcome severe male factor infertility. It is an essential procedure that should be funded to ensure that assisted reproduction services are available to all Ontarians, regardless of the source of the fertility problem. ICSI should only be used in the situations as described in the previous section.
The Physician Perspective
The Chair of the Ontario Medical Association Section on Reproductive Biology conducted a survey of the section members early this year to provide a physician perspective on funding of assisted reproduction services in Ontario to the Expert Panel. According to the survey, the fertility specialists of Ontario believe that infertility is a medical condition that deserves the same funding as other conditions. The survey results indicated:
According to the survey results, there is strong support among physicians for increased public funding for assisted reproduction services.
Ontario has the opportunity to become a leader in the support of assisted reproduction in Canada and join a group of countries that are setting the standards for the world.
We believe that Ontario should fund safe assisted reproduction. Not only is this the right thing to do, but it will also protect the health and well-being of the children, women and men who use the services and save the Province money by reducing the financial burden that high-risk pregnancies and multiple births have on the health care system.
That said, we recognize that we do not have the resources or expertise to construct a specific model to deliver funding for these services. However, we believe that, to be effective, a funding model for assisted reproduction should limit costs to patients, be flexible and allow clinics to maintain some autonomy
– while also ensuring clinics are accountable to patients and government. We recommend that the government consider a flexible course of care model that would give Ontarians access to assisted reproduction services and include other necessary services (e.g., counselling).
We appreciate that there needs to be careful thought given to the number of fertility specialists that would need to be trained to meet increased demand that public funding would create. And clinics would need time to increase their capacities to serve more people and give them the opportunity to manage their costs to ensure that they are able to offer these services efficiently. It is essential that there is collaboration between the government, the Ontario Medical Association and providers in moving to public funding of IVF.
Funding assisted reproduction services will be cost-effective and help to protect the health and well-being of the Ontarians using the services. Therefore we recommend that:
3.1 The Government of Ontario should fund up to three cycles of in vitro fertilization for women ages 41 years +12 months and younger. The following ancillary services should be funded when provided for a funded cycle of in vitro fertilization:
3.2 A patient must undergo frozen embryo transfer using good quality embryos before another publicly funded fresh in vitro fertilization cycle is provided.
3.3 Up to four cycles of intrauterine insemination should be funded for women ages 41 years + 12 months and younger. Sperm washing should be funded for intrauterine insemination procedures.
3.4 Clinical practice guidelines should be developed:
The cost of procedures is not the only expensive part of assisted reproduction. Many Ontarians need medications – either in combination with assisted reproduction procedures or alone – to help them overcome fertility problems. Also, counselling, which helps people make informed choices about assisted reproduction can be difficult to access for a number of reasons, including cost.
We recommend that:
Fertility medications can make up almost half of all costs in a cycle of IVF.
“ As increasing numbers of women enter the workforce, and the importance of
a company’s image as family-friendly becomes an ever greater selling point
to talented upwardly mobile young adults, we appear to have the convergence of many
positive messages about the benefits and realities of infertility coverage.”
Infertility Coverage is Good Business
Joseph C. Issacs
Fertility and Sterility, May 2008
About 9.8 million Ontarians have some form of drug coverage through work or through private drug plans.130 For employers, offering extended health and drug coverage is one way to attract and retain employees.
The insurance companies that manage drug plans do include fertility medications in the list of drugs that can be covered. However, it is up to individual employers to decide whether or not they will purchase that coverage for their employees. Many employer drug benefit plans have a maximum that an employee can claim for drug coverage (e.g., up to $15,000 per year) and/or some limits on the drugs that are covered. Many plans do not include fertility drugs – employers tell us that this is because they think it will be too expensive.
Based on what we’ve learned, it appears that coverage for fertility medication is not a priority for many Ontario employers. At the current time, there appears to be a perception by some employers and employees that infertility is the result of the employees that infertility is the result of the employee’s choice to delay childbearing, rather than a medical condition. This may be due to the highly personal nature of the issue and the unwillingness of many people who experience the problem to discuss it openly or to advocate for coverage in the workplace. According to our survey, many people do not want to discuss their assisted reproduction treatments with their employer and fear that taking the time off work required for appointments will affect their jobs and/or their opportunities for promotion.
According to a recent survey of employers in the U.S., those who provide fertility benefits generally experience improved retention and recruitment of valued employees, higher staff morale and reasonable related costs.131Among those companies that do offer this coverage for employees:
For these companies, providing coverage for fertility medication costs was a business decision designed to improve their image and attract and maintain a positive and loyal workforce.
Employer Education Can Make a Difference
When employers are aware that covering fertility medications could help them compete for and retain good employees – and that the costs can be manageable – they may be more likely to include the medications in their plans. We believe that one component of a public awareness campaign should be focused on making employers aware of the advantages of including fertility medications in employee benefit plans.
Some of the options for offsetting the costs of fertility medications that we considered were:
The Ontario government already has a number of mechanisms in place to offset the cost of expensive medications for its citizens, including providing medications free of charge for people being treated in hospitals, and covering the cost of drugs for people with low incomes and people whose drug costs exceed a certain portion of their income. Quebec is now using a tax credit to help families offset the cost of fertility drugs.
We urge the government to consider all of its options for offsetting the financial burden of fertility medications on Ontarians trying to build their families. Because the cost of fertility medications is out of reach for many Ontarians, we believe that finding a way to offset these costs is invaluable to facilitating access to assisted reproduction. We believe that a 50% refundable tax credit, similar to the approach taken by Quebec, should be used to offset the costs of fertility medications for Ontarians. We found it very difficult to cost this recommendation as there is little information available on the number of people who require fertility medications in the province. Referring to other jurisdictions, we estimate that this recommendation could potentially cost the Province approximately $2 million per year and would go a long way in helping Ontarians access assisted reproduction services.
" [Infertility] eroded my self confidence, it made me question my value and
my value to my partner."
The descriptions of assisted reproduction services may sound straightforward, but the experience is not. The ups and downs of the treatment process are very difficult. People are very hopeful at the beginning of a cycle only to have their hopes dashed if a procedure fails. Ontarians who have been through assisted reproduction find the process extremely stressful. They say it affects every relationship in their life: with their partner, their family and their friends.
For many people, counselling helps them cope with the psychological stress of treatment, including the sense of grief and loss over not being able to have a baby on their own, the stigma and sense of failure associated with infertility, and pressures on relationships.
Only 37% of people who responded to our online survey reported receiving counselling in any form and only half of the people who were interviewed said they sought counselling. Few respondents used counselling because these services are either not available or they are too expensive.
We recognize that for many people using assisted reproduction – but not all – having professional emotional support is important. At the same time, there are many people – for example, same sex couples who are using assisted reproduction as family planning services – that do not feel they need “infertility counselling”. We believe it is very important that these services are available and appropriate for any Ontarians who wish to use them.
We believe that, as part of the informed consent process, the Government of Ontario should mandate and fund counselling services for all third party reproduction.
Counselling can help people going through assisted reproduction understand the physical or emotional risks We believe that, as part of the informed of treatment. For those who are considering freezing consent process, the Government of and storing eggs or embryos, counselling can help them Ontario should mandate and fund explore the ethical issues. For those who are using third counselling services for all third party party reproduction, it can provide an opportunity to talk reproduction. about the ethical and emotional issues and about having and raising a child who is not genetically related to them.
At the current time, Victoria, Australia is the only jurisdiction that has made counselling mandatory for all people going through assisted reproduction: it is considered an essential part of informed consent. Currently in Ontario, each clinic has its own counselling policies and counselling services are not consistently available.
Like Australia, the federal AHRA makes counselling mandatory as an important part of the informed consent process. This means that some counselling will be required by law for all people using assisted reproduction services. The regulations that will outline the details of mandatory counselling have not been publicly announced yet. To reduce financial barriers to treatment, we believe that any counselling services made mandatory under federal legislation should be funded by the Province.
There are other financial costs to accessing assisted reproduction services in Ontario which should not be allowed to act as a barrier to accessing treatment. We recommend that:
3.5 The Government of Ontario should develop an awareness campaign that:
3.6 The government should consider different options to help control the cost of fertility medications.
3.7 The government should introduce a 50% refundable tax credit with a ceiling of $20,000 for Ontarians to help offset the costs of fertility medications.
3.8 All Ontarians undergoing assisted reproduction services should be offered one funded counselling session.
3.9 The government should fund any mandatory counselling required by the federal government under the Assisted Human Reproduction Act. In the absence of federal legislation, all Ontarians undergoing third party reproduction should be required to participate in counselling as part of the informed consent process, and the government should cover the cost of this counselling.
3.10 All health care providers – including primary care practitioners – should be knowledgeable about where to refer patients who would need counselling services relating to fertility, infertility and using assisted reproduction services.
3.11 Educational materials on counselling – for fertility, infertility and assisted reproduction for all types of families – should be developed and made available to all professionals who may provide these types of services.
We believe that all Ontarians should have opportunities to build families free from discrimination based on socio-economic status, geography, reproductive health needs, marital status or sexual orientation. In our surveys and interviews, Ontarians told us about many other barriers that must be removed if Ontario is going to be the best jurisdiction to build a family.
To ensure that all Ontarians have access to assisted reproduction, we recommend:
Time off work:
Employers be made aware of their responsibilities under the Human Rights Code regarding pre-and post-natal care.
Personal emergency leave under the Employment Standards Act be interpreted to include assisted reproduction services.
The impact of distance from a fertility clinic be minimized by extending access to the Ontario Telemedicine Network to all fertility clinics and maintaining access to the Northern Health Travel Grant for Ontarians living in the north.
Access to third party reproduction:
Stigma and discrimination:
Concurrency in using assisted reproduction and adoption services:
Timely access to fertility preservation services:
Capacity to provide fertility treatments for people with HIV:
"You have to choose between work and having a family. You can’t work
at full capacity and pursue and advance your career when you are doing the treatments.
It is too stressful. You just do enough work to get by and go unnoticed. You are
certainly not giving 100%."
Fertility investigations and treatments take time. Women must have their hormone levels and cycles monitored daily for several days. The process of egg retrieval and transferring embryos takes more time. If a woman has to go through several cycles, the impact on her work life can be career limiting. If the baby is born pre-term or low birth weight – or there are complications from the pregnancy or birth – the parent(s) may require more time off work.
In our surveys, we heard about employers and individual managers who were extremely supportive. We also heard about people who felt they lost their jobs or were overlooked for promotions because they were trying to deal with a medical problem.
Not all employers may be aware of their obligations under the Ontario Human Rights Code. The Code, which sets out employers’ responsibilities, has a policy on pregnancy and breastfeeding. The policy states that employers must accommodate special needs during the pre-and post-natal period, and acknowledges that this may include infertility treatment. Employers can accommodate their employees in a number of different ways, including providing a flexible work schedule to accommodate medical appointments.
"Lost hours is lost income."
The policy is designed to protect women from discrimination in the workplace related to pregnancy and to make women aware of their right to equal treatment in employment and accommodation. We believe that many employers and most women may not be aware of their obligations and rights under the Code.
Currently, employees who work in companies with at least 50 employees have the right to take up to 10 days of unpaid job-protected leave each year for illness, injury or other emergencies. As assisted reproduction services are necessary medical treatments, we believe that they should be eligible for personal emergency leave in the Employment Standards Act.
4.1 In a public awareness campaign, employers should be made aware of their responsibilities under the Human Rights Code to accommodate employees’ special needs during the pre- and post-natal periods.
4.2 The definition of personal emergency leave in the Employment Standards Act should be interpreted to include assisted reproduction services.
The IVF clinics in Ontario are located in: Brampton, London, Markham, Mississauga, Ottawa, Scarborough and Toronto.
Geography – where people live in the province – should not keep Ontarians from getting assisted reproduction services. The relatively small number of fertility clinics across the province makes it difficult for people who live in rural, remote and northern communities to get services. Ontarians who live a long distance from a clinic may not be aware of the services, or they may not be able to take the time required away from their daily responsibilities to attend appointments or go through a procedure like IVF. Right now, many women cannot receive the daily blood tests and ultrasounds to monitor their cycle within their communities, so they have to spend up to 16 days staying near the clinic. For many, it’s a question of both time away from work and family, and travel costs.
Some Ontario fertility clinics have established satellite affiliates and are using the Ontario Telemedicine Network (OTN) to make it easier for Ontarians in the rural and remote communities to get care and monitoring, without having to travel. The OTN uses cameras, monitors and tele-diagnostic instruments – such as digital stethoscopes and high resolution patient examination cameras – to connect practitioners in smaller communities with specialists at the clinics. Access to the network should be extended to all clinics, in order to reduce the barrier of distance and still provide high quality monitoring and care. In order for this to be effective, the government should ensure that the monitoring tests and technician services are available as needed outside major centres. With the OTN, patients would only have to travel to clinics for the egg retrieval, fertilization and embryo transfer, which would significantly decrease their time away from work and family as well as their travel costs.
To be eligible to the join the OTN, most organizations receive a significant portion of their operational funding from MOHLTC. This is not currently the case with the province’s fertility clinics but, based on our recommendations, that should change. In the meantime, clinics can apply and their application will be reviewed on a case-by-case basis.
The Northern Health Travel Grant is designed to cover some travel costs for people in Northern Ontario who have to travel to receive medically necessary care.
Northern Health Travel Grant Benefits
For people living 100 kilometers (one way) from the nearest specialist/facility:
To be eligible for the travel grant the patient must:
The advantage of the Northern Health Travel Grant is that it reduces travel costs and helps people in the north receive more timely, appropriate care. The disadvantages are:
We believe that people living in Northern Ontario who are referred to a fertility clinic should be eligible for any supports that are currently provided for other medical treatments, and that Ontarians should have the option of choosing the clinic which best meets their needs.
4.3 The Government of Ontario should extend the Ontario Telemedicine Network to all fertility clinics.
4.4 The government should ensure that the monitoring tests required for intrauterine insemination and in vitro fertilization (e.g., sonography, lab technician services) are available as needed in designated medical centres outside Southern Ontario.
4.5 The government should extend eligibility for the Northern Health Travel Grant to all people in Northern Ontario who have to travel for assisted reproduction services.
In third party reproduction, the person or couple receiving assisted reproduction services needs donor eggs and/or sperm, and/or someone to carry the embryo for them (i.e., a gestational carrier) in order to build a family.
Mark and Greg had been partners for four years when they decided to build their family. Their son, Lars, was born using donor eggs and Greg’s sperm. At first, they had trouble getting referred to a fertility clinic by their primary care provider. Once referred, the IVF clinic arranged for the donor eggs and Mark and Greg found someone who was willing to be a gestational carrier for them. The egg was fertilized and implanted using IVF.
When Lars was six, Mark and Greg returned to the clinic to ask for help to have a second child. However, they learned that the laws governing third party reproduction had changed. It is no longer legal to pay for donor eggs in Canada or to compensate someone who agrees to be a gestational carrier. These new rules make family building much more difficult.
Third party reproduction services are used by:
IUI is often used in cases of donor sperm. IVF is used with donor eggs and gestational carriers.
Advantages of Third Party Reproduction
Disadvantages of Third Party Reproduction
Allows people to have a baby who otherwise would be unable.
Can be difﬁcult to ﬁnd donor eggs and sperm or gestational carriers.
No legislation that clearly spells out the rights and responsibilities of donors and intended parents.
Federal legislation – the Assisted Human Reproduction Act – makes it difﬁcult to obtain donor sperm and eggs and to ﬁnd a gestational carrier, because it makes reimbursement for these services illegal (see below for more information).
We believe that Ontario should be responsible for regulating assisted reproduction in this province. Any recommendations that we are making regarding action under the AHRA should be considered to be sub-optimal options.
Before the AHRA, many people who needed third party reproduction services had access to many professional services. We have heard from a number of professionals that the Act will make it difficult for Ontarians to continue to use third party reproduction to build their families.
The Act makes it illegal to pay for sperm, eggs or surrogacy. Intended parents – the people who will raise the baby – will be allowed to pay for some costs of the pregnancy (e.g., travel expenses, fertility medications), but not all. This law is forcing some Ontarians to use dangerous alternatives and to use services outside of Canada.
Included in the Assisted Human Reproduction Act is a clause that requires the federal government to review the law after three years. This review is overdue. We encourage the federal government to review this law and Ontario to take an active role in the process.
The Act also makes it illegal to act as an intermediary – a person or company who finds potential surrogates and matches them with people who need them – which means more people will have to find surrogates themselves. Before the Act, intermediaries helped people to find surrogates who would be a good match for them. Not only is it now difficult for people to find a surrogate at all, it is difficult to know if the surrogate is a good choice.
We believe that – should the AHRA be upheld – there will inevitably
be a Charter challenge against the criminal provisions of the Act.
We recommend that the Province join or support any Charter challenge of this kind.
Health Canada has proposed guidelines for what would be allowed to be paid for by intended parents. Some groups, like the Canadian Bar Association, have developed a response to these guidelines, making suggestions about costs associated with donation and surrogacy that should be included. There has been little formal response from the medical community on these guidelines. We believe that it is important for providers of assisted reproduction services – through professional organizations like the Ontario Medical Association or the College of Physicians and Surgeons – to develop a response to these guidelines.
Under the federal legislation, it will be very difficult to access any third party reproduction services. We mentioned earlier that Quebec is currently challenging the law. We believe that, should the law be upheld, Ontario must develop a system that would support Ontarians needing these services – for example, through developing provincial regulations governing third party reproduction and establishing a province-wide donor and surrogacy bank. It is our belief that this will be difficult under the strict laws of the AHRA, but every effort should be made to best facilitate access.
Our Views on the Assisted Human Reproduction Act
While our report addresses some of the barriers posed to those seeking assisted reproduction in Ontario by the Assisted Human Reproduction Act, we feel compelled to offer further commentary.
We share, as a point of principle, the belief that those engaged in activities related to third party reproduction face unique issues and circumstances and that these may require special consideration in policy, and in law.
Nevertheless, we have grave concerns about the prohibitions within the Act and their implications for Ontarians seeking, or facilitating, third party reproduction services.
As currently defined, the AHRA’s criminal sanctions and prohibitions on third party reproduction serve not only to severely limit the options of Ontarians seeking to create a family, but force this segment of the community to turn to prohibitively expensive, unethical and/or dangerous alternatives.
It seems reasonable to us to accept that the legislation was forged with the intent to shield Ontarians engaged in third party reproduction activities from harm. However, in our opinion, given the supposed protections of the current law in place today, the community is exposed to far greater potential risk now than ever before.
The unintended consequences of criminalizing third party reproduction have put Ontario’s women, men and babies at risk and the AHRA has fomented a thriving underground economy; created dangerous legal and social ramifications; and jeopardized the health and well being of its citizens.
Intermediaries who assist in matching a gestational carrier or gamete donor with intended parents may not charge for this service. In addition, fearing prosecution, legitimate physicians, lawyers and counsellors are reluctant to assist or have stopped assisting Ontarians in third party reproduction cases, leaving them to seek solutions with little guidance and fewer protections.
In this unsupported environment, those seeking third party assistance are turning to the Internet and other unreliable sources; many are forced to pursue treatment outside the province incurring tremendous expenses and subjecting themselves to inferior medical and ethical care; alternatively, many are seeking ‘low-tech’ home solutions, such as home inseminations without medical, legal or psychological protections, or traditional surrogacy in which the birth mother is also the genetic mother, a potential legal and ethical minefield.
Rightfully afraid of criminal sanction and unable to pursue legal recognition of intended parentage, these citizens (including the child) are living ‘underground’ in a situation not unlike that of illegal immigrants – without a legal connection between the child and at least one of the parents, there are a host of estate consequences, identity, passport and parental authority issues. Those participating in third party reproduction are vulnerable in black market or underground conditions and are exposed to levels of fraud and unparalleled risks of exploitation.
Arguably drafted to protect the reproductive rights of its citizens, the legislation has ironically made Ontarians more vulnerable; seeking treatment today with less medical, psychological and legal protection than ever before.
Our mandate as the Expert Panel on Infertility and Adoption is to make recommendations from which Ontario can become the best jurisdiction in which to build a family. Among the principals guiding these recommendations, our advice is motivated by a desire to protect the safety of Ontarians; to encourage access to assisted reproduction; to ensure that care is timely and evidencebased; to demand accountability; and, to pursue social responsibility.
It is against these principles which we have measured our recommendations; and, against these principles, the Assisted Human Reproduction Act fails to measure up.
Currently, Health Canada requires any donor sperm to be frozen and stored for six months (called quarantine). The donor must be then re-tested for any medical issues that may make him an inappropriate donor. This rule applies to any donor who is not the sexual partner of the woman being inseminated, even if she knows the donor (e.g., a good friend or a partner’s family member). Under the same rules, if a woman would like to use a gay man as a sperm donor, the doctor must get special permission from Health Canada. Consequently, gay men using a gestational carrier must also abide by these rules. We’ve learned that these rules mean that people feel forced to lie about their relationships with donors, which puts both physicians and patients in undesirable positions.
We believe that a better method for assessing and screening donor sperm should be developed. Ontario should ensure that the guidelines on the safe insemination of women using known and anonymous donor sperm protect the safety of women and children.
Alberta, Quebec, Newfoundland and Labrador, and Yukon have laws that deal specifically with the legal parentage of children born through AHR. Only Alberta and Quebec have provisions dealing with the legal parentage of children born to same-sex couples, and with surrogacy.
When a baby is born without the use of third party reproduction, legally establishing parentage is fairly easy. Parents complete the statement of live birth, and then a birth certificate is issued for the child with their names as parents. It is not as easy for parents who have a child through third party reproduction.
The current laws on how to establish parentage are outdated. Most were created before assisted reproduction was common practice. A time-consuming, sometimes costly court procedure is often necessary to be named the legal parent of a child. While the courts have been very helpful in making this process easier for intended parents, this approach means that people using third party reproduction are sometimes unnecessarily treated differently than other parents. We believe that, wherever possible, people using assisted reproduction should be treated similarly to other parents.
We believe that an intention-based approach to parentage – for everyone using third party reproduction, even surrogacy – should be used in establishing parentage in Ontario.
The Joint CCSO (Coordinating Committee of Senior Officials)-Family Law – ULCC (Uniform Law Conference of Canada) working group has drafted recommendations on establishing parentage that attempts to:
Additionally, there is no law in Ontario that protects donors, surrogates and the intended parents. Donors and surrogates need protection so that it is clear that they do not have any parental responsibilities for the child that they helped to create. Parents need protection so that it is clear that a donor or surrogate cannot claim parental rights over the child. Currently, intended parents and donors face expensive legal costs to draft contracts that will protect the rights and responsibilities of everyone involved. Other jurisdictions have developed legislation that protects intended parents and donors that limits the need for individual contracts. We believe that similar legislation is needed in Ontario.
Ontario needs legislation that reflects the many ways that Ontarians build their families. We believe that an intention-based approach should be taken to establishing parentage, regardless of the genetic link, and that provincial legislation should protect the rights and responsibilities of those using third party reproduction services. The Uniform Law Conference of Canada has developed recommendations on these issues (see Appendix D for the full list of recommendations). We endorse their current approach and – assuming that they do not change significantly – we believe that Ontario should review and implement their recommendations once they are finalized.
4.6 When the overdue review of the Assisted Human Reproduction Act is undertaken by the federal government, Ontario should participate actively in this review.
4.7 The Province should join or support any Charter challenge pertaining to the Assisted Human Reproduction Act.
4.8 A provincial regulatory framework for clinics and assisted reproduction services, including third party reproduction, should be developed under the equivalency provisions of the Assisted Human Reproduction Act.
4.9 An altruistic, province-wide donor sperm, egg and embryo bank and surrogate database should be established, operated at the clinic level and regulated by and accountable to the government.
4.10 Ontario should ensure that the guidelines on the safe insemination of women using known and anonymous donor sperm protect the safety of women and children.
4.11 The government should review the process for establishing parentage to accommodate assisted reproduction services wherever possible, and to ensure that no intended parents are discriminated against on the basis of sexual orientation or reproductive needs.
4.12 Once they are finalized, the government should review and implement the Uniform Law Conference of Canada’s recommendations on declaration of parentage.
Should the federal Assisted Human Reproduction Act be struck down, we recommend that Ontario establish a provincial regulatory framework for third party reproduction that facilitates access to services rather than prohibiting them while protecting Ontarians from exploitation.
Currently families are told they must “finish” infertility treatments prior to beginning the adoption process, grieve their losses and prepare themselves for their potential lives as adoptive parents. We understand how important it is for families to be physically and emotionally ready for adoption – particularly after unsuccessful assisted reproduction treatment. However, the current unwritten policy is not based on sound evidence or current social realities.
The current parental training and homestudy processes can help Ontarians identify what is right for them as a family and what might help them be the best parents for children. We believe that with proper support, families can make good decisions about their ability to explore assisted reproduction and adoption at the same time, and that people should not be forced to investigate only one option at a time. See page 78 for our recommendations on this issue.
When Ruth and Emily wanted to start a family, they approached a fertility clinic. The first clinic they went to was not welcoming. All the forms and questions were designed for heterosexual couples. The clinic insisted that Emily go through a full fertility investigation, even though there were no signs that she would have a problem getting pregnant.
For the couple, the main expenses were the cost of purchasing sperm from the United States and the sperm washing. The IUI procedure was covered by OHIP. To help ease the cost, the two women thought about asking a friend to provide sperm. Their first child, Eliza, is now three and Emily is expecting their second child.
In 2006, almost one-quarter of all people in same-sex relationships were 34 years of age or younger.132 People in same-sex relationships who would like to have families through assisted reproduction services are not necessarily struggling with infertility. They need access to egg and sperm donation and do not necessarily need invasive procedures.
People from the Lesbian, Gay, Bisexual, Transgendered and Queer (LBGTQ) communities say that their needs are often not recognized or met. We’ve heard that some providers do not use gender neutral language during assessments, clinic forms assume male/female relationships and non-traditional families are not depicted in the clinic brochures or posters.133It is even more difficult for LGBTQ clients to find health care providers sensitive to their needs outside of Toronto.134
Clinics and providers should strive to be aware of and sensitive to the reproductive needs of all Ontarians. This includes using gender neutral language, providing cues that the clinic is a positive space and allowing women to make choices about procedures that reflect the fact that they’re not infertile.135
We recognize that there are specific barriers to assisted reproduction services experienced by the LGBTQ communities and encourage the government to continue to work with LGBTQ communities and advocacy groups to develop policies that will reduce discriminatory practices and social barriers to assisted reproduction services.
Like same sex couples, single women and men who would like to build a family through assisted reproduction services face barriers. Single women need access to donor sperm and single men need donor eggs and a gestational carrier. In addition to these barriers, single people may also experience stigma because they are not in a relationship. We heard from some single people that primary care givers did not talk to them about their fertility or family building options because of their marital status.
We believe that all Ontarians who could benefit from assisted reproduction services should have access to these services – regardless of marital status. Ontario should develop policies that will reduce social barriers to assisted reproduction services.
" We never talked about it, but once you start to talk about it, others do
as well. It is a taboo topic."
There is shame and stigma associated with infertility that means some people never seek assisted reproduction services. Many people are embarrassed or ashamed to admit that they are struggling with infertility. They may not be aware of how many other people are struggling with infertility right now: one in six couples has struggled with infertility at some point in their lives.
" You feel like there is something wrong with you, that there is a sticker on your forehead that says you’re infertile. You don’t want to be with people because you are depressed." – Interviewee
There is also a stigma associated with infertility. This stigma makes it difficult for some people to seek treatment or feel supported. We believe that the first step in breaking this stigma is to acknowledge infertility as a medical condition and treat assisted reproduction that is used to treat infertility like other medical treatments. Ontarians should be aware of how many people are struggling with infertility and that infertility is not a choice.
4.13 The government should ensure that social barriers to assisted reproduction are removed and legal barriers minimized for services to members of the Lesbian, Gay, Bisexual, Transgendered and Queer communities.
4.14 The government should ensure that social barriers to assisted reproduction are removed from services for single Ontarians.
4.15 A public awareness campaign on infertility and assisted reproduction should focus on reducing the shame and stigma attached to infertility.
Ontarians who must have treatment for a medical condition that could affect their fertility – like cancer or an autoimmune disease – need timely access to a fertility specialist who can arrange to have their eggs, sperm and/or embryos frozen and stored.136 However, many Ontarians are not being offered these services.
Maria was diagnosed with cancer when she was 26. Because her cancer treatments could affect her fertility, her oncologist referred her immediately to a fertility clinic. She had a small window of opportunity before her treatments began to have some of her eggs harvested and frozen so she could use them when she recovered from the cancer. Even though everyone did the right thing, the process and the choices were not easy for Maria. OHIP does not cover the cost of retrieving, freezing and storing eggs – nor would it cover the cost of IVF for Maria once her cancer treatments were over. Faced with the prospect of a long illness, Maria wasn’t sure she could afford these services, but her parents offered to pay.
Maria also struggled with some serious ethical issues. Frozen embryos store better than eggs, but Maria wasn’t in a committed relationship. Should she ask her current partner to donate sperm or should she take a chance on freezing unfertilized eggs? What would she do with her frozen eggs if her cancer treatment wasn’t successful? The situation caused her a great deal of emotional stress at a time when she was also faced with a life-threatening illness. She was grateful that there were services in Ontario to help preserve her fertility, but she wished there weren’t so many barriers.
Demand for fertility preservation is growing. According to Fertile Future, a group which advocates for the fertility preservation needs of cancer survivors, in 2005, 10,000 individuals between the ages of 20 and 44 were diagnosed with cancer in Canada, and about 80% survived. Thousands of people who survive their battle with cancer will go on to lead full and healthy lives and would benefit greatly from fertility preservation services.
The freezing of eggs, sperm and/or embryos must happen before cancer treatment begins. For most people, that means a small window of opportunity. Some cancer treatments begin immediately, but others may have a couple of weeks before starting treatment or surgery, or between the initial surgery and treatment. If referred to a fertility specialist, this time could be used to discuss fertility preservation options and – if the person would like to do so – collect the sperm or eggs before treatment begins. While egg freezing is still somewhat experimental, sperm and embryo freezing are proven to be successful and safe.
According to the American Society of Clinical Oncologists, many oncologists either do not discuss the possibility of treatment-related infertility with their patients or they do not do it well.137 Many have had little education on the methods of preserving fertility or the physical and psychological effects.138Other providers may be unaware of the impacts of a medical condition on fertility or that there are fertility preservation options for their patients.139 It is important for health care providers to be aware of these services: the likelihood of someone using fertility preservation services is highly dependent on a referral from their specialist.
4.16 All specialists caring for people with a medical condition or providing treatment for a medical condition that can affect fertility should be aware of the availability of services to help preserve fertility and make timely referrals to these services.
4.17 The Government of Ontario should fund the freezing and storage of eggs, sperm and embryos for fertility preservation.
4.18 Clinical practice guidelines should be developed on how long sperm, eggs and embryos can be stored at public cost.
Within the last decade, antiviral therapy has changed the natural history of human immunodeficiency virus (HIV) infection significantly. People affected with HIV are now living longer and experiencing better quality of life. It is estimated that 25% of the people in Canada living with HIV are women and many are in their reproductive years. Studies of HIV-positive women suggest that the desire and the intent to parent children are strong.
There are three main issues that need to be considered for HIV-infected people and their partners when it comes to pregnancy planning and counselling.
Advances in antiviral therapy have made it safer for these women to conceive – with assistance – and have a healthy baby. These therapies have almost eliminated the risk of a mother passing along HIV to her baby and there are procedures available that reduce the risk of HIV being passed between partners during conception.
Despite the fact that many HIV-positive individuals and couples wish to have children, there is a scarcity of HIV-friendly fertility clinics outside of southern Ontario. People with HIV need advice on the management of HIV during pregnancy planning and services such as sperm washing, (used to remove the HIV viral particles from the sperm), intrauterine insemination and in vitro fertilization.
We believe that Ontario needs a comprehensive approach regarding the reproductive needs of HIV-infected individuals.
4.19 The Government of Ontario should develop a comprehensive approach to reducing barriers to assisted reproduction services for HIV-infected people.
4.20 Development of resources (including education programs) should be supported to allow safe access to these services in Ontario.
Ontarians build their families in different ways and many have to choose assisted reproduction out of necessity. Infertility is a medical condition. The medical treatment of infertility should be paid for publicly. Ontarians who need assisted reproduction, either because of infertility, because they are single or in a same-sex relationship, or because of a medical condition, should have access to safe, effective medical treatments and not be denied access based on income, geography, marital status or sexual orientation.
We know that the Ontario we are living in is a very different place than it was 50 years ago. We have made a lot of progress – but some of this progress has come at a price. Ontarians are delaying childbearing to pursue education, careers and personal goals. With little information about fertility available to them, many are struggling to make informed choices about family building.
The reality is that while Ontario has changed over the past fifty years, so have the technologies available to us. Assisted reproduction services have improved substantially – even over the past decade. There are many options available now to Ontarians who are struggling to build their families.
The way Ontario’s assisted reproduction system is currently operating is not acceptable. The cost of services means that treatments are out of reach for many people. Social and legal barriers limit access and, in some cases, force people to use less than ideal alternatives. Ontario’s multiple birth rates resulting from assisted reproduction services are too high. We know that – to provide the best opportunity for Ontario’s children to reach their full potential – we must reduce these rates and ensure that the health of each and every child born through assisted reproduction is protected.
Ontario has the opportunity to become a leader in assisted reproduction in Canada and join a group of “family-friendly” countries that are setting the standards for the world.
To be the best jurisdiction to build a family, we believe Ontario should:
We imagine an Ontario where people are given information on fertility and assisted reproduction, those who need assisted reproduction are not limited by what they can afford to pay, and where the services they receive are safe and effective. We are grateful to the government for providing us with the opportunity and resources to thoughtfully consider how to improve assisted reproduction services in this province. We anxiously await the government’s next steps on making our vision a reality.