Infertility: A Plague Gone Unnoticed

Nitya Rajeshuni

[box]Nearly 6 million women and their partners in the US suffer from infertility. Most think it is just another medical problem, but the truth is, the suffering of these victims goes far beyond the biology to the psyche, leaving deep lasting scars. Little has been done to rectify this problem at the policy level. But through an active, multidisciplinary effort, a fresh current of change might just be possible.[/box]

Abbreviations: Department of Health and Human Services (DHHS), intracytoplasmic sperm injection (ICSI), in-vitro-fertilization (IVF), National Institutes of Health (NIH), Patient Protection and Affordable Care Act (PPACA), Society for Assisted Reproductive Technology (SART)

In an era of ongoing policy change and evolution, women’s health is just one more hot-button issue to add to the laundry list of contentious policy battles.  In recent years, the debate has become particularly intense, involving heated discussions between various demographics, ranging from men versus women to Republicans versus Democrats to old versus young to even women versus women.  However, the issues present in the media every day—topics like abortion and contraception—are only part of the story.  In the shadow of such discussions, other equally important issues in women’s health have been masked.  When is the last time a major national debate took place regarding funding for research on infertility or health care coverage for its treatment?  Has any such large-scale debate ever occurred in the first place?  What about the ramifications that often come with inability to start a family?  Is it likely that current legislatures will fund treatment of the depression and cases of mental illness associated with infertility when most do not even fund infertility treatment itself?

Infertility—millions of women across the nation today struggle with this condition; yet, despite the prevalence of this plague and the suffering it brings, their plight has gone severely unnoticed, masked by the ever- present discussion on abortion and contraception.  However, one must wonder, if society is so concerned regarding policy covering not only the prevention of birth but of conception, shouldn’t the creation of life receive equal attention?  Infertility is a major problem in the US, proving not only challenging but extremely expensive and psychologically detrimental, particularly to women.  Despite these negative implications, very little policy on the subject has been proposed to date. However, that is not to say that national or state legislation would have very little impact on the issue.  Rather, the proposal of such legislation could have much to offer, if constructed in a multifaceted and interdisciplinary manner.  Through such an approach, combining both federal and state efforts, access to psychological services and affordability of treatment could certainly be increased as well as improved.  Of course, one must ask, how might we achieve this?  Although there is much work to be done, an excellent place to start would be through policy proposals such as the specific bill I have constructed and outlined in this paper.

Nearly 6 million women and their partners in the US are “infertile,” accounting for approximate 10-15% of the entire “reproductive population.”7  While about 40% of infertility cases can be attributed to male-related factors and 40% to female-related factors, 20% are attributed to a combination of the two, rendering exact diagnosis often difficult.7  Furthermore, even if a particular partner has been identified as the source, diagnosis can prove equally if not more challenging7, despite the variety of medical treatments available.

Approximately 25% of all couples in the US have trouble conceiving7.  Typically, 10-15% can eventually succeed using basic methods, such as regimented sexual intercourse, discontinuation of birth control, and changes in lifestyle, diet, and nutrition.  While 80% of those who begin with the basics succeed, the remaining 20% typically move on to fertility drugs, hormonal therapy, and finally assisted conception (intrauterine insemination, in-vitro-fertilization (IVF), and intracytoplasmic sperm injection (ICSI)), posing a disheartening 20% success rate7.

While these treatments offer potential medical solutions to the problem of infertility, issues of mental health have increasingly garnered more attention due to the lack of efforts and funds in this area.  A promising, albeit inadequate, amount of research has been conducted, indicating that the mental health of women facing infertility is indeed a very real problem.  However, the findings have hardly been applied.  According to the Department of Health and Human Services 2010,4 the seven leading mental health issues faced by infertile women are 1) anxiety 2) depression 3) anger 4) marital problems 5) sexual dysfunction 6) social isolation and 7) low self-esteem.  Statistics have shown that amongst infertile couples, women often display higher distress than men, although when infertility is attributed to the male factor, the responses in males and females are the same.2  Furthermore, 15-54% of infertile couples experience depression, much higher than the average percentage of fertile couples experiencing depression.2  8-28% of infertile couples also experience severe anxiety.2  To complicate matters further, couples with a previous history of depression are susceptible to a two-fold increase in the likelihood of experiencing depression.2  This “positive feedback” loop is perhaps the biggest challenge women face; while previous mental health issues can alter one’s ability to deal with the psychological stressors of infertility, the stressors associated with assisted conception often exacerbate these very feelings of exasperation and anxiety.2  One Harvard Medical School study has even likened this phenomenon to the emotional distress experienced by heart disease and cancer patients.8  Accordingly, knowing when to stop treatment often proves the most difficult decision.8

Now, who exactly qualifies as “infertile?” According to nationally accepted criteria, women under the age of 33 unable to conceive within a year are considered infertile, as are women over the age of 34 unable to conceive within six months.  Over the years, the number of women seeking treatment has risen, due to later childbearing, better treatment options, and increasing awareness of the many services available.2  However, one cannot help but wonder why the mental health implications associated with infertility have not yet been adequately addressed?  As is the case with many other health conditions, medical diagnosis is often prioritized over mental health, while research funding for basic science is often easier to obtain than funding for psychological postulations.  This coupled with the lack of understanding and empathy for the condition of women struggling with infertility has accordingly, resulted in a dearth of infertility related policy.

That being said, some steps towards rectifying this problem have been taken. Current treatments for resulting mental health conditions include cognitive behavioral group psychotherapy, support groups, general stress relieving techniques, and potentially antidepressants.  According to the New York Times,8 in the past two years, nearly half of the 370 infertility centers approved by the Society for Assisted Reproductive Technology (SART) have incorporated such services.  However, despite the slight progress that has been made, one cannot help but wonder—why hasn’t more been accomplished?  The answer to this question is undoubtedly quite complex, however, a good place to start is first recognizing that balancing the interests of the many stakeholders involved is quite challenging.  Although the Obama Administration has largely been preoccupied with the push to address more “controversial” issues in women’s health such as abortion, contraception, and health care coverage of these procedures, its point of view (or lack-there-of) is absolutely critical to influencing the policy-field and affecting change.  The DHHS and its agencies are also integral, particularly in implementing such policy change.  At the other end of the spectrum lies State Legislatures and their constituents, running the gamut from health care providers to private and public hospitals, to special interest groups, to national associations, and finally, to individual voters, particularly infertile women.

Balancing these various interests is undoubtedly difficult, reducing the likelihood of passing infertility legislation dramatically.  In fact, in the last 10 years, Congress has completely failed to pass infertility legislation on a national scale.  What bills have even been proposed in the first place?  Two major pieces of legislation in particular that have repeatedly surfaced: 1) the Family Building Act (2009, 2007, 2005, 2003) requiring all health care plans to provide benefits for treatment of infertility and 2) the Medicare Infertility Coverage Act (2005, 2003) amending Medicare to cover infertility treatments for individuals entitled by reason of disability.  Other proposed bills have also discussed research on and coverage of cancer-related infertility, a tax break for qualified infertility treatment expenses, and the creation of an Interagency Task Force.  However, not a single one of these bills has ever reached the floors of Congress. At the state-level, fifteen states have now mandated coverage of infertility diagnosis and treatment,5 each outlining its own specific guidelines; however, many of these plans are still incomprehensive, with none in particular addressing mental health.6  The 1998 Supreme Court case Bragdon v. Abbott first fueled this discussion citing reproduction as a “major life activity” warranting protection under the Americans with Disabilities Act.1  However, while this historic precedent precluded employer discrimination on the basis of infertility, it did not resolve the question of coverage.3  Even more recent events such as the Patient Protection and Affordable Care Act (PPACA) do not directly address issues of infertility, although prevention of unwanted pregnancies as well as maintenance of healthy pregnancies are well represented.9

The shortfalls in current policy are numerous.  While, no sustainable, active effort has been made by national or state government, policy directly targeting the mental health implications of infertility has not been proposed at all.  Yet, a few strengths are to be noted; the possibility of financial burden has at least been broached.  Furthermore, the infrastructure is already in place—Bragdon v. Abbott and the PPACA provide room for more expansive financial coverage; they need only be clarified or amended.  So how does one deal with such a problem?  One can either 1) alleviate its effects or 2) eliminate the source itself. Below, I have outlined and provided an example of a policy proposal tackling the infertility challenge from both ends.  Under each subtitle, I have provided in italics a simple summary of the requirements listed under each respective subsection:

[box]STATEMENT OF INTENT: Access to psychological resources must be made more accessible and treatment more affordable, thereby increasing access to care, the possibility of pregnancy, and the reduction of psychological stress.

TITLE I: Increased Access to Psychological Services to Facilitate Coping

SUBTITLE A: The DHHS (Department of Health and Human Services) should work with SART (Society for Assisted Reproductive Technology) leadership to develop a “mandate” urging the remaining half of SART-approved infertility centers to incorporate cognitive behavioral therapy and stress reduction services by the end of 2014.  Services should be integrated with counseling on adoption and child-free living.[/box]

Currently, approximately half of the SART-approved infertility centers in the nation provide psychological services to couples dealing with infertility to help cope with the stress of being unable to conceive.  Such services would also target helping patients deal with other mental and emotional health implications, including depression, anxiety, suicidal thoughts, etc.  The form of such services could take a variety of forms, including cognitive behavioral therapy, general stress reduction techniques, and counseling/therapy.  Such efforts should also be combined with counseling on the options that are available to couples 1 should) they be unable to afford infertility treatment or 2) should their infertility treatment fail.  Such options include adoption and child-free living.  This subsection mandates that the remaining half of SART-approved infertility centers that do not already provide such psychological services develop the relevant infrastructure and programs by the end of 2014. 

[box]SUBTITLE B: Any federally funded hospital currently providing infertility diagnosis and treatment must appropriate some funding towards developing psychological services by the end of 2014.  Each center must submit a cost analysis and proposed budget.  Federal subsidies should then be provided as deemed necessary. [/box]

While certain hospitals in the nation are privately funded, many receive funds from the federal (national) government at varying levels and degrees.  Accordingly, the federal government has an important say in how such funding is used and allocated. This subtitle mandates that any hospital that received federal funding must allocate some portion of this funding towards developing psychological services to help patients cope with the implications of infertility.  The forms of such services are outlined in the italicized description of TITLE I, SUBTITLE A above.   Because evaluation of the enforcement of such policy is integral to successful implementation, each federally funded center must provide a projected budget for the programs they plan to develop.  If further funding is needed, the federal government may provide subsidies as needed if deemed appropriate based on proposed budgets submitted by each center.  This mandate must be met by the end of 2014.

 

 [box]SUBTITLE C:  DHHS should consult with Director Francis Collins of the NIH and Director Thomas Insel of the National Institute of Mental Health (NIMH) on increasing the NIMH budget or appropriating a larger percentage to research on the psychological effects of infertility and potential facilitators of coping.

SECTION I: The possibility of developing relevant extramural grant programs should be discussed.

SECTION II: Research on the financial burden of depression (assuming it go untreated) must not be neglected.   [/box]

Interdisciplinary cooperation and collaboration are absolutely critical to tackling an endeavor as ambitious as expanding infertility treatment options, care, research, and health care coverage.  Thus, interagency cooperation is crucial.  Accordingly, as per this subsection, DHHS leaderships make an active effort to collaborate with leaders of the NIMH under the NIH.  Although actionable collaboration need not take place immediately, the purpose of this subsection is to encourage the two organizations to immediately begin discussions focused on the possibility of expanding or reallocating funding provided to the NIMH extramural grant program (funding provided to non-NIH affiliated laboratories and institutes) for research on infertility treatment and psychological services. 

[box]TITLE II: Increased Access to Infertility Treatments through Affordable Cost

SUBTITLE A: DHHS must mandate that the 35 states currently offering no coverage of infertility diagnosis and treatment must develop plans addressing this issue by January 1, 2014.

SECTION I: Because this is a contentious issue, the specifics will be left up to the states.

SECTION II: States should be encouraged to, at the very least, cover basic infertility diagnosis and treatment, including medical counseling, supplements, basic medication, and hormonal therapy.

SECTION III: These insurance plans should be prepared independently of ACA State Exchanges.   [/box]

Currently, only 15 of 50 states in the nation provide state-based insurance plans covering infertility treatment.  This subsection mandates that the remaining 35 states develop state-based plans that include coverage of infertility treatment by the beginning of 2013.  This plans would be developed outside of the PPACA (an expansive national universal health care bill passed during the Obama Administration) and because federal mandates on state-based insurance plans is often a contentious issue, the specifics of these plans and the type, form, and amount of coverage they will provide will be left up to the State Legislatures.  At the very least, states will be encouraged to provide coverage of infertility diagnosis and treatment.

[box]SUBTITLE B: Amend the ACA to include a category on infertility under the Essential Health Benefits by January 1, 2014 and, should the amendment fail, encourage State Exchanges to address infertility and mental health potentially under the Essential Health Benefits package.     [/box]

Currently, the recent universal health care bill the Patient Protection and Affordable Care Act (PPACA) does not include provisions for coverage of infertility treatment, although contraception and abortion are addressed.  Thus, this subtitle mandates that the Essential Health Benefits section under the PPACA be amended to include a section on infertility treatment by the beginning of 2014.  The Essential Health Benefits section covers the essential services that every government health-care plan must include.  However, should this amendment fail to pass through the Congress, the State Exchanges established by the PPACA should be encouraged to incorporate coverage of infertility treatment and mental health services in the plans they develop.  State Exchanges are essentially the instrument through which the PPACA will be executed in each respective state. 

[box]SUBTITLE C: Push through the Family Act of 2011, amending the Internal Revenue Code to allow an income-based tax credit for 50% of qualified infertility treatment expenses. Reintroduce in the 113th Congress if necessary. [/box]

According to this subtitle, members of Congress should make an active effort to pass the Family Act of 2011, reintroducing the bill as necessary, since all bills that are not passed by the end of a Congressional Session are “killed.”  This act amends the tax code so as to provide a 50% tax credit (reduction of payment) on expenses paid towards the cost of infertility treatment. 

[box]SUBTITLE D: Reintroduce the Family Building Act and Medical Infertility Coverage Act. [/box]

According to this subtitle, members of Congress should reintroduce the 1) Family Building Act and 2) Medical Infertility Coverage Act (discussed previously in this paper).  These acts respectively require all health-care plans to provide benefits for infertility treatment and amend Medicare to cover infertility treatments for individuals entitled to this coverage due to their acquirement of a disability related to infertility. 

[box]TITLE III: Develop an Interagency Task Force to promote awareness, research, interagency cooperation, prevention curriculum, and multidisciplinary partnerships on both infertility and its mental health implications.

COMMENTARY: Though this multi-pronged approach, the problem of not only access and cost of care but alleviation of mental health challenges could be addressed at a federal and state level.  It is not necessary that all provisions pass; rather, it is the hope that a balance between federal and state considerations can be struck. [/box]

Of course, a bill as expansive as this must make use of adequate and available resources from interdisciplinary sources as well.  First and foremost, interagency and private-public sector cooperation amongst various parties including the DHHS, NIH, State Legislatures, and SART are key.  Funding is also extremely important.  While the NIH may be able to contribute significantly to the research budget, the more difficult financial issue lies at the state level—how will states be able secure enough capital to fund infertility coverage through state-insurance plans?  If they choose to tackle this issue through the PPACA, State Exchanges will be responsible for appropriating money as needed, where as if they choose to tackle it from the perspective of state-mandated insurance plans, collaboration between State Legislatures and health care providers is critical.  From a private sector route, the engagement of SART and other national associations would be integral in convincing private centers to integrate more psychological services into their treatment programs, while bipartisan partnerships and discussion are integral to passing federal legislation.  Thus, lobbyist and advocacy groups should be engaged as should community organizers and clinics.

Because coordinating these various interdisciplinary efforts could certainly prove difficult as well as complicated, establishing an appropriate timeline for the enforcement of different titles and subtitles under a bill is critical as well.  For the bill outlined above, an appropriate timeline would include the following deadlines: 1) TITLE I: SUBTITLES A and B must be met by the end of 2014 2) TITLE II: SUBTITLES A and B would be subject to the January 1, 2014 deadline imposed on State Exchanges by the ACA 3) TITLE III establishing an Interagency Task Force and TITLE I: SUBTITLE C targeting NIMH research should be implemented immediately, allowing NIH to begin implementing the findings of these discussions as early as FY 2013 or FY 2014 and 4) TITLE II: SUBTITLES C and D dealing with federal legislations idealistically should be addressed in the current 112th Congress and reintroduced as needed.

Finally, evaluation of the enforcement of such a bill must be conducted as well to ensure that progress is being made.  Outcomes of the bill above, for instance, could be monitored and evaluated regularly by an Interagency Task Force, which would be required to prepare biannual reports of ongoing policy advancements, incorporating feedback and progress reports submitted by involved agencies as well as private parties one month prior.  NIH could be in charge of evaluating research progress, conducting annual reviews of independent research grants, while the DHHS could select a nonpartisan NGO to conduct yearly reviews of both Task Force behavior and policy development.  Data at all levels should be collected in the form of statistics, interviews, and progress summaries.

Although both national and state environments surrounding the infertility debate are undoubtedly sticky, proposals such as the one outlined in this paper offer not only potential but significantly improved solutions to the neglected “plague” of infertility and its medical, financial, emotional, and mental implications.  Fortunately, the research and vehicles for change are already partially in place and through effective federal-state and public-private collaborations, could blossom into a more nationally integrated network balancing various stakeholder interests.  As evidenced by the research and statistics in this paper as well as the illustrated example of potential policy solutions, interdisciplinary and interagency cooperation is absolutely critical to the success of such an ambitious endeavor, and if executed properly, could have the power to reverse the negative trend of neglect and ignorance that has surrounded the infertility debate at both the popular and governmental levels.  The condition of infertility must not be neglected or ignored.  Rather, we must embrace it and forge ahead, accepting that people of all medical conditions deserve a fair chance, having a shot at their dreams of better health and improved quality of living.  While the road of progress most certainly is undoubtedly difficult, given that the infertility debate is indeed so far behind that of abortion and contraception, if individuals and institutes at various levels are willing to cooperate, a mighty current of change might just sweep through the nation—a current those in need can embrace with relief.

 

References: 

1. Fidler, AT, Bernstein J. Infertility: From a Personal to a Public Health Problem. Available from: PubMed Central

2. Harvard Medical School, Massachusetts General Hospital. Fertility and Mental Health. Available at: http://www.womensmentalhealth.org/specialty-clinics/infertility-and mental-health/

3. International Council on Infertility Information Dissemination. Walker PJ. The impact of Bragdon v. Abbot on persons affected by infertility. Available at: http://www.inciid.org/printpage.php?cat=benefits&id=414
4. Mental Health: Trying to conceive, pregnancy, and mental health. womenshealth.gov [online]. Available at; womenshealth.gov database.
5. National Conference of State Legislatures. State Laws Related to Insurance Coverage for Infertility Treatment. Available at: http://www.ncsl.org/issues-research/health/insurance-coverage-for-infertility-laws.aspx
6. Resolve: The National Infertility Association. Insurance Coverage in Your State. Available at: http://www.resolve.org/family-building-options/insurance_coverage/ state-coverage.html#California
7. The Natural Health Website for Women . Natural Solutions to Infertility. Available at: http://www.marilynglenville.com/infertility.htm
8. The New York Times. Tarkan L. Fertility Clinics Begin to Address Mental Health. Available at: http://www.nytimes.com/2002/10/08/health/fertility-clinics-begin-to-address-mental-health.html?pagewanted=all&src=pm
9. What Health Care Reform Means For Infertility Coverage. Available at: http://healthcare.phoenix-blogs.com/what-health-care-reform-means-for-infertility-coverage/