Infertility: A Disease Uncovered

Guest Post: Samantha Sullivan

80 million people worldwide are affected by an illness called infertility,  (Tara M. Cousineau PhD. (Senior staff psychologist), 2007) despite that fact, there is very little public knowledge or awareness about it. 7.3 million women in the U.S. have sought treatment for infertility (Iris G. Insogna, 2018) but, for many reasons the treatment has not yet been included in most healthcare insurance plans. Even though Infertility has been “unequivocally defined as a disease state by the World Health Organization, (WHO) and is now fifth on the list of serious disabilities in women”  (Iris G. Insogna, 2018), it is still not receiving the necessary care and coverage that it deserves.

I was first introduced to infertility in 2013 with the loss of my first spontaneous pregnancy (natural conception). After that devastating loss, we tried for a year to conceive naturally again, to no avail. It was then that I was subjected to a barrage of blood tests, pelvic scans, oral medications and injections.  This was followed by praying over urine-soaked sticks, and ultimately feeling defeated when the result was negative. I was lucky my insurance covered the tests leading up to my diagnosis, however everything that came after was paid for by my husband and me. It took three cycles of expensive hormones, and trigger shots, and early morning ultrasounds to conceive my first son. My second son took another year to conceive start to finish and included multiple losses, but again, I count myself lucky as only about half of infertile people are able achieve a live birth at all (Tara M. Cousineau PhD. (Senior staff psychologist), 2007). Each of my boys were conceived with some scientific intervention.  I look at my them and I am so thankful for modern medicine, without which they would not be here.  I am even more thankful that I did not need to go through IVF (in-vitro fertilization), as I would not have been able to afford it.

            Infertility or impaired fertility affects one in eight women, it affected me, and it affected many of my loved ones. I compiled a questionnaire to help quantify the strain and weight of this process. Three brave women have shared their stories and struggles with me. One of these women detailed that the burden of her illness cost her over $100,000 as her insurance refused to cover even basic diagnostics or medications. She endured 1 failed IUI (intrauterine inception) cycle and 2 failed IVF cycles. She writes “I am eternally grateful for my mother helping us financially as we could not have done it on our own. The guilt of having to ask for more money every time it failed was horrible.” (1, 2019). Two of the ladies had to seek help from relatives to cover the astronomical costs. The third was fortunate enough to have a doctor who cared so much that he donated some of the necessary medications to help keep costs down, still she and her husband paid around $17,000 for the birth of their second child (3, 2019).  The least amount paid of the three was $12,000 for one successful IUI cycle. It is almost as if you are buying a child a new car or house before they are even born. In my questionnaire, I asked the women to describe the emotional process they went through during their experiences, one eloquently states “We feel that we went to the end of the earth and back to have them here with us. They were worth every single tear, dollar, and injection, hope, and prayer. They will forever remind us that hard work and relentless dedication to a dream can lead to amazing things that can change your story forever.” (3, 2019). Another described her experience, saying; “It was also exciting, disappointing, stressful, upsetting, and excruciating. I was basically on the biggest roller coaster on the face of the planet and the process took over my planet.” (2, 2019). This illness truly takes over a person’s entire life, from countless early morning appointments that amass to hours lost at work (hours that are needed to afford treatment). Setting constant reminders on your phone alerting you of which medications to take at which times of day to optimize conception. It takes over your marriage, your mental health, your wallet, and still each of these women said that they would do it all over again in a heartbeat.

            One of the biggest difficulties that this issue faces is public education about the topic. When most people hear the word infertility, they think almost exclusively about IVF, which has garnered the most attention as a new medical advancement. However, infertility is defined as the inability to conceive after having unprotected intercourse for one year. There are many ailments that fall under the infertility diagnosis; including fibroids and blockages in the fallopian tubes, inability to ovulate on one’s own, poor quality or quantity of eggs, and many more. The treatments for these ailments can range from oral medications and injectables, to minor surgeries to repair damaged or blocked organs, to other more invasive treatments, such as IUI and IVF. Because insurance companies can exclude anything related to a fertility struggle, they can deny coverage of any of these treatments. For example: if a woman has a fibroid in her fallopian tube that can cause ectopic pregnancy or miscarriage, the insurance can still deem the procedure to be “not medically necessary”, causing the patient to have to pay for the surgery out of their own pocket.  Fortunately, 15 states now require insurers to cover at least diagnosis, and in some cases treatment for infertility (NCSL, 2018).  However, infertility is a “disease with billable codes that physicians can use when charging patients and their insurance companies”  (Iris G. Insogna, 2018)(World Health Organization) for diagnosis and treatment leaving many couples paying out of pocket.

Another hurdle for lack of coverage, is lack of representation. “In the United States, specialists who study infertility have noted that infertile couples are one of the ‘most neglected and silent minorities.” (Tara M. Cousineau PhD. (Senior staff psychologist), 2007)(A.D. Domar, M.M. Seibel). Additionally, studies have shown that women facing infertility have depression and anxiety levels that are twice that of women from a normative sample, and that their mental state was indeterminate when compared with patients of cancer, HIV, hypertension, myocardial infarction, or chronic pain. Reports show that as many as 13% of women who experience a failed IVF cycle have thoughts of suicide. In some developing countries, many women choose suicide over the torturous life of infertility as their social status and marriages depend almost entirely on producing children. Aside from fearing social ostracism, many associate childbearing as an essential part of their adult identity, the inability to do so can cause one to feel as though they are an incomplete adult (Tara M. Cousineau PhD. (Senior staff psychologist), 2007, p. Psychosocial effects of infertility). Many women who are infertile, even in developed countries such as the U.S., also find the diagnosis to be shameful and choose not to come forward, further impeding the fight for the rights to coverage. 

One might also argue that becoming a parent is a choice and treatment for becoming one is unnecessary, and while it is a choice to become a parent, it should not be a choice that is only available to the wealthy. Wealth does not make a better or worthier parent, and the lack of wealth should not be what stands in the way of a person obtaining the family that they desperately want. It is easy to say that a person should leave these choices to god or nature or whatever they believe in, until you are the one faced with a struggle against your own body. Imagine if your body was unable to do something that it was supposed to do, that others’ can do easily and sometimes unintentionally. There are many medical procedures now to help people with conditions that they could learn to live with, but given the choice, they would seek treatment or surgical options. Some great examples are: breast cancer survivors and reconstructive surgery, hip and knee replacements, hearing and vision surgeries, and many more. These are all ailments that patients could learn to live with, but most of us can agree that they shouldn’t have to. Why should infertility be any different (Strauss, 2018)? “Just 30 years ago, most insurance companies didn’t even cover obstetrics. It was all out of pocket.”(Strauss, 2018)(Paulson).  This is an argument about basic human rights, the right to affordable healthcare, and the right to have a family, no matter your socioeconomical standing.                 

            Currently in the U.S. there are 13 states: Arkansas, Connecticut. Hawaii, Illinois, Louisiana, Maryland, Massachusetts, Montana, New Jersey, New York, Ohio, Rhode Island, and West Virginia with laws that require insurance companies to provide coverage for infertility diagnosis and treatment and two more states (California and Texas) which only require companies to offer coverage. Some of the states have their own stipulations, for example: California and Louisiana have laws that specifically exclude IVF (NCSL, 2018).  Since this website was updated Delaware has been added to the list of states with full coverage (Strauss, 2018).  New York’s law originally excluded IVF until this year, when it was amended to not only include IVF for infertile couples, but also for lesbian couples, and there is work being done to be inclusive of gay couples as well (Silberstein, 2019). Delaware and New York’s laws both contain clauses to ensure that cancer patients who may become infertile after chemotherapy are able to freeze their eggs, a procedure that without coverage has crippling costs associated, especially when a person is also looking at the cost of beating cancer (Strauss, 2018) (Silberstein, 2019).  These 16 states are leading the way for the right to reproduce and the remaining 34 states need to follow suit.

It has been 40 years since the first IVF procedure, and 80 million births later it is hardly an experimental procedure, so why are we still treating it like one (Strauss, 2018)?  For so long, infertility patients have remained silent and hidden in the background, it has been a taboo topic and thus the right to treatment has not received the attention and representation that it needed. In 2019, it is not shameful or taboo anymore, and it is time to acknowledge that reproductive rights are human rights.  With the arguments in our nation about how insurance should be paid for, many are unwilling to include something that seems like a choice to the bill. It is no different from any other disability and thus its treatment should be covered under the same scope. Furthermore, with better public knowledge on the subject matter, I believe that more people would be willing to include the infertile in their healthcare plans. With numbers as high as one in eight, this is an issue that is affecting someone you love, it is an issue that may affect you personally one day. If that day comes, will you have the access to the healthcare that you need?

References

1, A. (2019, April 17). Sister-in-Law Questionnaire. (S. Sullivan, Interviewer)

2, A. (2019, April 20). Cousin Questionnaire. (S. Sullivan, Interviewer)

3, A. (2019, April 15). Friend Questionnaire. (S. Sullivan, Interviewer)

Iris G. Insogna, M. M. (2018). Illuminating the Art of Medicine. Infertility, Inequality, and How Lack of Insurance Coverage Compromises Reproductive Autonomy. AMA Journal of Ethics.

NCSL. (2018, April 27). State Laws Related to Insurance Coverage for Infertility treatment. Retrieved from NCSL.org.

Silberstein, R. (2019, April 1). What;s Covered Under New York’s New In-Vitro Fertilization Law. Timesunion.

Strauss, E. (2018, July 25). 40 Years Later, Why is IVF still not Covered by Insurance? Economics, Ignorance and Sexism. CNN: 5 Things News Letter.

About the Author:
Sam Sullivan is a mom of 3, student, master crocheter and infertility advocate. She’s also my sister in law and turned out pretty amazing for the fact that she spend 16 years under the same roof as my husband growing up.

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