Widespread access to effective infertility treatments remains elusive; what you can do to change that.

January 21, 2013Carole 2 Comments »

On this Presidential Inauguration Day, I think about where we are in this country and where we are going. It’s also the time of year to think about professional and personal goals for 2013. What can we do better?

One of the professional goals I have is to try to make infertility treatments more effective and accessible to everyone who can benefit from them. My personal situation has obviously impacted what I can do on that front. When I  direct a laboratory, I can directly improve services.  As a blogger, I can indirectly  improve  the quality of IVF services through education. Patients can be empowered through a better understanding of IVF so that they can get the best possible care for themselves. This educational approach via blogging and outreach has the potential to be even more powerful over a larger scale than what I can ever hope to achieve in a handful of laboratories.

Still, ensuring that every patient is well-informed also has limited local value, in that it only changes the quality of the patient experience one patient at a time. Also those less informed and less empowered many not experience the full benefit of infertility treatment unless we can assure every program offers a high standard of care and every patient can afford to buy treatment.

Our current system does not provide uniform quality and accessibility to infertility treatments:  pregnancy outcomes from IVF range widely among clinics (9% to over 70% pregnancy rates per transfer; CDC stats), and some patients pay 100% and others pay nothing out of pocket for the same treatment. Our best hope for achieving uniform access and quality will require not only a major adjustment in how infertility is viewed as a medical problem but patients must also demand a raised bar for standards of quality and accessibility so more patients can benefit from new advances.

I’d like to imagine a future where infertility is recognized as a significant medical problem that is covered by every medical insurance plan, private or public. This is a tall order, considering that even a rather anemic national healthcare plan like Obamacare (aka, the Affordable Care Act) was practically strangled in its crib by vocal opposition–and a Supreme Court challenge-  before any  significant changes could even be put into effect. Even now that Obamacare has been upheld by the Supreme Court, infertility is not defined by the legislation as part of the Essential Health Benefit that must be covered under the plan.

The definition of what will and won’t be included in the Essential Health Benefit will largely be determined by states. Considering that only about 15 states require that insurance coverage for infertility be offered to patients, I am not optimistic for a 50 state buy-in of infertility treatment as an Essential Health Benefit– unless infertility patients become politically active in their states.

I think there are several unique impediments to  widespread access to and affordability of IVF which makes effective activism an uphill climb.

Infertility has a PR problem.

  • Infertility is not seen as a real disease by most of the public.  In this study, looking at the public perception of infertility in the US, Australia and several European countries, less than half (38%) of those surveyed thought infertility was a real disease. In spite of the fact that most respondents knew someone with infertility, most respondents still had a poor understanding of the real incidence of infertility, typically underestimating how many people have it. In a July 2012 letter to the CDC, the infertility support group Resolve implores the CDC to adopt the definition of infertility as a disease as defined by ASRM. The letter states: “Most importantly, infertility must be defined as a disease. We must set forth this precedent and put to rest the public perception that infertility is a“lifestyle choice.” This is also a perception maintained by many insurers and policy makers.”
  • Coverage of infertility treatments and patients in the media is most often salacious and not serious. If you remember the coverage of  “Octomom“, you remember how little real news was conveyed by most of the media coverage. Coverage quickly devolved to the lowest common elements of the story that could be peddled to the public. We didn’t hear much serious discussion of the risk of multiple gestation pregnancy. We heard lots about how she paid for IVF as a welfare recipient (actually, never heard of infertility being paid through either Medicare or Medicaid so this claim is highly dubious), whether she deserved to have more children because she already had six,  that she was unmarried, etc. etc. ad nauseum.

Infertility activism is relatively  weak compared to activism for other diseases like cancer or heart disease although infertility affects 1 in 8 couples and millions of people all over the world, both rich and poor. Why is political activism for infertility treatment relatively anemic?

  • The problem of infertility is transient.  Most patients eventually become parents, one way or another and are understandably busy with their new responsibilities. One measure of this transition can be found in the blogosphere as the infertility blogs morph into mommy blogs and then fade away. This is normal progression and arguably good for the families, but it doesn’t fan the flames of sustained activism. Many patients who might otherwise be activists understandably don’t want to be reminded of the difficult emotional journey they traveled to get to parenthood. For the most part, only ART professionals and providers stay politically active for the long haul and their interests–especially if market-driven– are not always entirely aligned with patient interests.
  • Infertility is still a very personal topic. Putting yourself on the front lines as an activist for change is not everyone’s cup of tea. Activism may expose the patient and their partner to unwelcome attention and even criticism from both friends and strangers. In some cases, going public with your infertility can create friction with your employer or your religious leaders. Most people are not overly eager to fight both infertility and public attitudes about it at the same time.

Research funding for IVF improvements or access to care is almost non-existent. In contrast to other diseases like cancer,  the federal government does not fund research toward better infertility treatments. Patients seeking treatments are primarily responsible for the advances in this field, found through trial and error as providers attempt to solve patients’ infertility problems on a case-by-case basis.  Recently, I tried to find a non-profit that would consider funding educational initiatives to help infertility patients. I found a list of 50 agencies that funded reproductive health initiatives. You might think that many of these would welcome an opportunity to support infertility treatment, advocacy or education. Only a handful of programs still looked like viable candidates after more research into what was actually being funded.  Most not-for-profit foundations that fund reproductive health areas limit funding to supporting contraception services, abortion services, and prevention of sexually transmitted disease but not anything to do with the improvement of infertility services or access to infertility treatments. Efforts to improve the quality and accessibility of  infertility procedures does not get much of the charity research dollar, either public or private.

So what can be done?

As I listened to the President’s Inauguration speech today, I was struck by his call for action. We the People are responsible for the type of country we live in. That is the point, after all, of this type of democratic government. If you don’t like something or see room for improvement, work to change it. If you agree that more can be done to make infertility treatments even more effective and more accessible to everyone that needs them, show it. Do something.

Make your elected officials aware that you exist and infertility is something that merits the same consideration for inclusion as an Essential Health Benefit under Obamacare as does any other medical condition.  States are deciding what benefits to include now for exchanges that will go into effect in 2014. Let them know that infertility treatment is not elective, but an essential health benefit. 

It is not a lifestyle choice to seek treatment for infertility. If you can’t afford treatment but want children, it’s not a lifestyle choice to stay childless if your “choice” is made because you have no other options. Freedom and the pursuit of happiness extends to being able to choose and afford effective treatment for infertility.

For more specific ideas on how you can get involved, check out these resources:

On the Fertility Within Reach website :Communicating with your Legislator

Personal letters are more effective than mass mailing to reach your legislator, but any communication must be better than silence. Copied from Fertility Within Reach– the graphic below summarizes their approach to empowering patients to get better healthcare for themselves.  You’ll find specific tips for patients for each one of these areas of advocacy–communication with your physician, your employer or your insurance company. Check it out.

http://www.fertilitywithinreach.org/wp-content/uploads/2012/05/Path-to-Empowerment-Graphic1.png

Resolve’s Get Involved page also has tips for how you might be able to contribute towards more positive outcomes for infertile people. There are lots of options that don’t require a huge investment in either time or money. If everyone affected by infertility did one little thing this year to improve the status-quo, think what we could accomplish!  Ask the people who care about you to contact their state legislators too. If you have already reaped the benefits of treatment, please consider what you might be able to do to help ensure that others in your shoes get their happy ending too.

From President Obama’s inaugural address:

“You and I, as citizens, have the power to set this country’s course.

You and I, as citizens, have the obligation to shape the debates of our time – not only with the votes we cast, but with the voices we lift in defense of our most ancient values and enduring ideals.”

© 2013, Carole. All rights reserved.

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