Explaining Goal #4
Goal #4: To improve the quality of life of Americans who live with infertility
Infertility will finally get the attention it deserves as public health issue
Infertility is one of the only medically recognized diseases that the Supreme Court also recognizes as a disability covered under the Americans with Disabilities Act, that up until now, has never been treated as a public health issue. The social stigma surrounding infertility has caused millions of American to suffer silently.
There is nothing more heart breaking than when I get an email from someone who has simply given up all hope of parenthood, because they have become so isolated and depressed over their circumstances - that the biological clock, both physically and mentally, has been broken to smithereens.
The National Public Health Action Plan for the Detection, Prevention, and Management of Infertility proposes an ‘information dissemination’ program that finally brings infertility to the general population as a serious public health issue. There should be no more stigma regarding infertility. Couples should have the resources available to discuss not only their treatment options to have biological children, but to have access to researched information about surrogacy, adoption, and even child free living. The risks, benefits and costs of all of these alternatives need to be made clear with sensitivity to how deep the emotional responses to infertility can run.
While there is a growing population of counselors with some training and knowledge of issues that couples face during infertility, the need for a more comprehensive toolbox to help couples through the decision making process with so many different alternatives available is growing. Patient advocates need to help simplify the language of ART, and provide a balance of information regarding alternatives to infertility treatment.
Legal, policy and ethical issues need to be debated in an open, objective setting
The President’s Council on Bioethics recently concluded that “although the fields of assisted reproduction, human genetics, and embryo research increasingly are converging, no comprehensive system exists for ascertaining the impact of these technologies, and their practice is largely unregulated.” Many infertility doctors I have met and talked with would argue that they are too regulated.
There are policy groups that have taken extreme positions and have even tried to pass legislation that would require the state oversee the production, storage and activity related to all embryo production. In Arizona, an embryo tracking bill nearly made it to a vote, before Resolve, the National Infertility Association got wind of it and rallied a grassroots effort that stopped it in its tracks.
The CDC plan suggests a collaborative effort among the entire public health community, and related stakeholders, be undertaken to analyze the scientific evidence that is collected about the prevention, diagnosis and management of infertility, so that false impressions about the motives and practices of different elements of ART are replaced by transparent data driven research.
Infertility education needs to become a part of reproductive health programs
I don’t recall ever learning anything about infertility in my youth, in high school, or even in college. It was simply not on the radar, and no doctor ever mentioned anything about anything in my lifestyle that might contribute to infertility later in life. The National Public Health Action Plan changes all that.
The general public needs to be educated about every facet of infertility. Groups of people who are at risk for infertility and miscarriage could learn about those risks, and have resources to weigh their options.
Open discussions about infertility could lead to a large reduction of the stigma of infertility. It wouldn’t be uncommon for couples to seek out information about their reproductive health earlier in life, when the options may be less invasive.
Standardized evidence-based recommendations on diagnosis and treatment could be created to take the guesswork out of what ART path to choose. It would be complete with simplified language and clear explanations of protocols, risks, costs and potential success rates.
The general public would have unprecedented access to research findings regarding infertility. Implementation of reproductive health education programs at the national level could produce a tremendous benefit in the quality of life for infertile Americans.
What can you do to make sure this plan is put into effect?
The next step is simple: you need to contact your local representative, by fax, by email, with a visit to their office, or a phone call to their aide, and let them know you want to make sure they allocate funding for this tremendous effort.
Because infertility treatment is considered a ‘pro-family building’ effort, it has the potential to enjoy bipartisan support. But only if the constituents in the representatives' districts make enough noise.
So make some noise.
This is a once in a lifetime opportunity to impact the quality of life for all infertility patients.
Read the Entire Four Part Series
- The Public Health Focus on Infertility
- Improving Access to the Diagnosis and Treatment of Infertility
- Improving the Efficacy and Safety of Infertility Treatment
- Improving the Quality of Life of Americans Who Live With Infertility