Surviving Intertility

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by Sandra Dill
Fall 2005

I had no sooner arrived at IAAC than I received a “Welcome!” call from Sandra Dill in Australia. Knowing Sandra as I do now, I should not have been surprised! A warm and caring person, mother to the world, she was calling to offer encouragement and support in our Canadian endeavours.

In terms of patient support groups, Sandra is our shining star: the one to whom patient leaders worldwide look for guidance and direction – always ready to lend an ear or a helping hand. I am very proud to call her my friend, after participating on several committees with her. If I have one aspiration, it would be to be as worthy a patient support leader as Sandra has been in her community, her country and her world.

Most people take for granted their ability to have a child. In fact, however, between 13 and 24 percent of couples are unable to conceive, and for these couples the difficulties in having a child can be very painful to manage.1 Infertility is an extremely isolating experience because, like miscarriage or stillbirth, it is a taboo subject. As a society we have difficulty in dealing with these sad experiences. For those who remain without children, infertility has lifelong implications.

When I was a child, I was told that I would get married, become a mother and have a husband to take care of me. I did marry and I have a husband, (we take care of each other), but I didn’t become a mother. I became aware of my infertility problem at the age of 28, after two years of marriage. I was referred for a second opinion and began the usual workup.

In the following years, my husband and I endured the well-meaning but thoughtless comments from friends and acquaintances:

“It’s not the end of the world, it’s just that you can’t have a child.”

“You’re lucky – having children isn’t easy.” (Neither is being in love. But no one advised me to avoid that!)

“It’s all for the best.” (I wonder if these people would say that to the parents of a young child with leukemia.)

After three years, we were referred for IVF. We had eight IVF treatment cycles – and an IVF miscarriage in the second trimester. This loss left me feeling guilty, rejected and stunned. It seemed so cruel to have our hopes dashed after nine years of trying so hard to bring life to a child. I don’t like to remember that night, but I can still vividly recall every detail many years later. I will always be grateful for our infertility specialist, who came to the Emergency Room long after midnight to speak with us, and for two close friends who visited me at three in the morning.

As those who have gone through this will understand, perhaps the most obvious difficulty is the sense of loneliness and isolation one feels as time progresses - the almost constant feeling of failure and pain. After a while, family and friends don’t understand why assisted conception hasn’t “worked,” and most of them have difficulty in dealing with that.

After 12 years of investigating various options, my husband and I were forced to confront the harsh reality that we would never have a child. It was the death of our dream of becoming parents. Nothing had prepared us to live with this eventuality, and it proved to be extraordinarily difficult to deal with – not least of all, discovering how others viewed my childlessness.

I sought counselling to help me deal with the grief and sense of failure that seemed to overwhelm me. If I had my time over, I would avoid being so narrowly focused – a difficult task when treatment takes up so much of your time. But I would try to participate in something outside of my infertility paradigm, or at least plan for other goals and be ready to move to implement them when faced with the prospect of ceasing treatment. That way I think that the sense of failure might not have been so pervasive.

For a time, I went to work and did all those things one does, “on automatic.” I felt numb. I felt like I had died. I tried returning to university to complete my Commerce degree but withdrew when exam time came, as I couldn’t bear to face the prospect of any more failure – even though I’d not failed previously. I questioned my judgment for pursuing our wish for a child so assiduously, with nothing to show for it.

Eventually I began to find joy in everyday things again. A good feeling! I am now enthusiastic about goals other than children. I could not imagine doing that before. I now look to the future with hope. When I graduated from university, I felt as if it was the first major goal of personal importance that I had completed in many years. It was almost as good as a positive pregnancy test! I am now studying for a master’s degree.

I know that my peers will soon be delighting in becoming grandparents but these events, while poignant and wistful for me, will not catch me unaware. So perhaps my experience has taught me something about how to manage the pain of infertility and childlessness.

Some critics in our community have questioned the wisdom of our choice, and that of others trying to have a child, to pursue our goal through IVF. But sometimes you need to find the courage to attempt things because they are important to you, even when success cannot be guaranteed. The costs – emotional, physical and financial – were very high for us. However, ours was a personal choice, and today we are still grateful to those who provided the technology that enabled us to make that choice.

All of us make choices about things we would like to pursue in our lives, and most of these achievements come at a cost. We are prepared to meet those costs because we believe the goals we choose to pursue are worthwhile.

This journey has also taught me something about the needs of others in similar circumstances. Not having a child is a personal sadness I will always live with. But it also has an ongoing social context, as I have learned.

Involvement in the local support group at the clinic where we were having treatment led to my establishing a national patient association, ACCESS, in 1993; the International Consumer Support for Infertility (iCSi) network in 1999 (which today brings together patient leaders from 36 countries); and the ESHRE Patient Leader Forum in 2004. It is also my privilege to serve as Chair of the Assisted Conception Taskforce (ACT), a unique group of patients and health care professionals providing a public voice to promote awareness and education of conception difficulties worldwide.

We are honoured to have Beverly Hanck from Canada, who serves on the ACT Steering committee, and chairs an iCSi committee as well. Her talent and commitment contribute significantly to our work.

Reimbursement remains a major barrier to accessing quality treatment at an affordable cost. Governments worldwide have been reluctant to acknowledge that infertility is a disability or medical condition. In most countries, infertility treatment is considered an elective procedure and therefore not deserving of reimbursement. The need for access to health care is balanced against the need for governments to responsibly manage scarce resources and to distribute them justly and equitably for the good of the whole community.

For those who need medical assistance to form their families, the difficulties they experience in conceiving cause immense suffering. The impact on millions of couples worldwide who experience such suffering can be profound. The challenge for these patients, as consumers of assisted conception services, is to persuade governments that infertility treatment addresses a medical disability with major physical, psychological and social costs, and as such is worthy of inclusion in their national health plan. This is one of the objectives of the iCSi network. The question is not whether infertile people have a right to reimbursement for assisted conception treatment, but rather why they should be discriminated against in being denied access to appropriate health care services that will help them to bring life to a child.

The UN Declaration of Human Rights recognizes that “Men and women of full age, without any limitation due to race, nationality or religion, have the right to marry and found a family.”2 This is supported by the European Convention on Human Rights, which guarantees respect for family life and the right to found a family.3 It can be argued that these provisions create a positive right to access assisted reproductive technologies (ART) to achieve these goals, which are taken for granted by fertile people in the community.

Our understanding of the suffering caused by infertility has galvanized the global family of in-fertility patient associations to continue to lobby government authorities about the needs of our constituents. Our goal is to ensure that those we represent are treated with the dignity enjoyed by others in the community. Infertile people, as citizens and taxpayers of our respective countries, seek to claim our right to equal access affordable quality health care and appropriate recognition of ART as a standard, proven treatment for infertility.

Some two million children have been born worldwide through assisted conception treatment. Many have reached voting age, and are very interested in how their elected officials value their existence.

In Australia, a significant factor in the success of negotiations with government over regulation and reimbursement has been the commitment   of consumers and ART providers to work in partnership to achieve common goals. This has proved to be a powerful tool in the political arena, and it has provided a model for similar efforts in other countries. In the late 1980s this coalition of consumers and physicians successfully lobbied the federal government for recognition of infertility as a medical condition. In 1990 Prime Minister Paul Keating announced provisions for reimbursement of ART procedures through Australia’s national health plan. Today, the ongoing participation of consumers in public policy and the regulation of IVF clinics are reassuring evidence of openness by health ministers, physicians and bureaucrats toward ensuring transparency and quality in the delivery of infertility services.

This paradigm shift from consumers as passive participants to partners has been difficult for providers and government officials in some countries, but the benefits can be significant. These partnerships are also appropriate as they recognize that consumers of assisted conception services must live with the consequences of policy and treatment decisions.

At the first world congress of the International Alliance of Patient Organisations in London this year, Harry Cayton, National Director for Patients and the Public of UK Health, highlighted a principle which consumers of assisted conception services will actively take to their governments:

Nothing about us without us: because it is the sensible way forward.

Nothing about us without us: because it is the right thing to do.

The challenge for consumers is to ensure that all stakeholders have confidence in our integrity, professionalism and ability to work with the medical profession, government ministers and senior public officials. This may not always be an easy task. But the suffering of those who come to all of us for support compels us to commit to nothing less.

1.   H. Page (1989), “Estimation of the prevalence and incidence of infertility in a population: A pilot study,” Fertility and Sterility, vol. 51, no. 4, pp. 571–77; E. Greenhall and M.Vessey (1990), “The prevalence of subfertility,” Fertility and Sterility, vol. 54, no.6, pp. 978–83; A. Templeton, C. Fraser C and B. Thompson (1990), “The epidemiology of infertility in Aberdeen,” British Medical Journal, vol. 301, pp.148–152.

2.   United Nations General Assembly, Universal Declaration of Human Rights, Resolution 217 A (III) (December 10, 1948), Article 16.1. Available on line at http://www.unhchr.ch/udhr/miscinfo/carta.htm.

3.   Council of Europe, Convention for the Protection of Human Rights and Fundamental Freedoms as amended by Protocol No. 11 (Rome, November 4, 1950).

About the author: Sandra K Dill, AM, BComm, is Chair of International Consumer Support for infertility (iCSi), Co-ordinator for the ESHRE Patient Leader Forum, Chair of the Assisted Conception Taskforce (ACT), CEO of the ACCESS Australia Infertility Network and a board member of the Fertility Society of Australia and the IVF Medical Directors’ Group.

Sandra’s experience over 12 years of medical treatment has included eight IVF attempts, IVF miscarriage, facing a decision to cease treatment and living with involuntary childlessness. Since 1986 she has represented consumers on several national and state government working parties reporting to Health Ministers on Assisted Reproductive Technology, and has brought patients’ perspectives to the Australian Medical Association, the Plunkett Ethics Centre (Australian Catholic University) and the infertility treatment authorities of South Australia, Victoria and Western Australia. She has also been invited to appear before scientific, governmental and patient associations around the world, including the World Health Organization; the European Society of Human Reproduction and Embryology; the Japan Society of Fertilization and Implantation; the Bertarelli Foundation; the Centers for Disease Control and Prevention (US Department of Health and Human Services); and RESOLVE, Washington, DC.

Sandra is currently studying for a master’s degree in Law; her major research project examines surrogacy, bioethics and the law. She lives in Sydney with her husband, Brian, and her “fur babies,” Mozart and Tara.

In 1996 Sandra Dill was appointed a Member of the Order of Australia for community service as an advocate in the area of infertility.