It’s time for advocacy when it comes to infertility, says Dr Mark Trolice

By Mark Trolice

By now you all know the numbers and concerns – one in eight couples, 6.1 to 7.5 million in the US, the biological clock, egg freezing. You know them because this is the time of year that infertility is prominently appearing in all health sections of news and social media.

Articles review the history and achievements of advanced reproductive technology (ART), share patient success stories, and try to predict future directions of our field. Over the years, the field of ART has contributed to some extraordinary developments with in-vitro fertilization (IVF) such as preimplantation genetic testing for chromosomal abnormalities or genetic diseases, the use of testicular sperm, and increasing options for fertility preservation.

Yet, this is the time for advocacy

Infertility is a disease and a disability, as designated by the World Health Organisation and as known by every person who has experienced this life changing challenge. It’s a disease with the same psychological devastation as a cancer diagnosis. A disease with the same pain as other chronic pain conditions; just think endometriosis. A disease that endures multiple oral and injectable medicines, minor and major procedures. A disease without a true cure. There’s no vaccine, no gene therapy, no surgery that will allow a heterosexual couple or LGBTQIA+ patient, couple to conceive the way they want and the way in which they believe they should, i.e. naturally or as natural as possible.

Infertility is in a unique category of diseases where the consideration of treatment is as much, if not more of, an obstacle and burden as the actual diagnosis. Patients struggle with their disease while simultaneously hoping for one saving grace – to have as little treatment as possible. No other area of medicine, arguably, has patients who are as staunch advocates for natural methods as infertility. Why? Because assisted reproductive treatments are viewed by many of them as a self-proclaimed failure to realise their purpose.

While a successfully treated infertility patient, typical of all parents, adore their child, deep inside many lament their inability to have become pregnant like the other 88 per cent of couples – at home rather than a doctor’s office.

Once diagnosed, many patients pursuing fertility treatment have a sense of feeling broken. Their dreams, to date, have been shattered. They also feel isolated, vulnerable, insecure, overwhelmed, and, most inappropriately, a failure.

Many infertility patients have endured the uninvited “instructions” of their fertile counterparts. Yet their disease provides them a unique opportunity and experience that is enviable:

  1. They don’t experience an “oops” pregnancy; their babies are cherished from the womb onwards;
  2. When planning a family, they don’t leap before they look. By the very nature of their disease they are forced to consider and reconsider whether they are truly prepared to have a child after they review all emotional and financial factors;
  3. By accepting the options of donor egg, donor sperm, donor embryo, and adoption, they realize the true meaning of love and family beyond biological relation;
  4. They know that “Only if you have been in the deepest valley, can you ever know how magnificent it is to be on the highest mountain.” (quote of former US President Nixon)

Now, more than ever, this is the time for advocacy

We must unite as a specialty of reproductive healthcare providers and all those affiliated to relieve the financial burden of our patients and ensure appropriate insurance coverage. For far too long, our patients have had to follow the idiom to beg/borrow/steal to afford expensive ART. And, for far too long, the disease of infertility has not been recognized and respected for what it is – a disease and a disability.

Fortunately, the US is slowly beginning to increase insurance coverage for infertility, albeit slowly, through the tireless efforts of RESOLVE and their advocates. While we are a long way from winning the battle of coverage in all US states for infertility and fertility preservation, our patients deserve our relentless pursuit of this essential goal.

Fertility CARE: The IVF Center and RESOLVE: The National Infertility Association will recognise National Infertility Awareness Week, April 24 through April 27, joining millions of women and men fighting the disease of infertility, healthcare professionals, mental health professionals, and other thought leaders to promote greater awareness about infertility.

Following NIAW, Advocacy Day will be taking place on  15-16 May 2019 

This year RESOLVE’s Advocacy Day will be in partnership with the American Society for Reproductive Medicine (ASRM). Advocacy Day is a RESOLVE event where the infertility community comes together in Washington, D.C. to talk to Members of Congress about important issues, like increased access to family building options and financial relief. RESOLVE holds this annual event so you have a chance to make your voice heard.

To learn more about Advocacy Day, how you can make a difference and deliver a message that people with infertility matter visit here

About RESOLVE: The National Infertility Association:  Established in 1974, RESOLVE: The National Infertility Association is a non-profit organization with the only established, nationwide network mandated to promote reproductive health and to ensure equal access to all family building options for men and women experiencing infertility or other reproductive disorders. One in eight U.S. couples of childbearing age has trouble getting pregnant or sustaining a pregnancy. RESOLVE addresses this public health issue by providing community to these women and men, connecting them with others who can help, empowering them to find resolution, and giving voice to their demands for access to all family building options.  For more information, visit RESOLVE.org.

About National Infertility Awareness Week (NIAW):  Founded by RESOLVE: The National Infertility Association, NIAW is a movement that raises awareness about the disease of infertility and encourages the public to take charge of their reproductive health.  Each year the infertility community comes together for one week to focus on ensuring that people trying to conceive know the guidelines for seeing a specialist when they are trying to conceive; enhancing public understanding that infertility is a disease that needs and deserves attention; and educating legislators about the disease of infertility and how it impacts people in their state. In 2010, NIAW became a federally recognized health observance by the Department of Health and Human Services.  For more information, visit Resolve.org/NIAW.

Mark P. Trolice, MD, FACOG, FACS, FACE is Director, Fertility CARE, The IVF Center and Associate Professor, UCF College of Medicine.

To learn more about Dr Mark Trolice visit Twitter, Facebook, and Instagram

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