Emerging Trends in AYA Cancer Care: Fertility Preservation Coverage

By Joyce Reinecke, Alliance for Fertility Preservation

This has been an exciting and historic few years for the campaign to expand insurance coverage to include fertility preservation for cancer patients. In 2017, nine states had fertility preservation bills introduced, and two states — Connecticut and Rhode Island — passed those measures into law.

This year, the Alliance for Fertility Preservation and Critical Mass have been tracking legislation in more than a dozen states and counting! And any moment now, the Governor of Maryland will sign fertility preservation coverage into law. Many individuals and groups came together to lend their voices and expertise to the effort in Maryland. But special recognition and thanks is owed to the team at the Ulman Cancer Fund for Young Adults for their committed and tireless stewardship throughout the process.

We’ve learned a lot in these last few years as the momentum has swelled in our favor. Critical Mass asked that I share a few of our insights with you in honor of AYA Cancer Awareness Week:

• Reducing Cost for Everyone. I get super excited when a financial report comes back that says fertility preservation is going to only cost pennies (!!!), but state legislatures do not. Some states cannot shoulder that weight, others worry about opening themselves up to other well-meaning health care programs and costs down the road. We are always thinking about ways to achieve coverage while trying to limit or reduce costs for everyone — the patients, of course, but also the state.
• Oocytes, Sperm, Iatrogenic. If you think oncology lingo is bad, just wait until you get into reproductive endocrinology. I spend a good chunk of my time explaining (and even pronouncing!) the medical terms for male and female reproductive organs and systems. Our legislators and their staff, for the most part, are not medically trained but they do want to craft good public policy. They rely on advocates like us to provide them with something as simple as the right word to put into law.
• Process & Tradition. Every state legislature works a little bit differently and while there are processes written down, there are also traditions they uphold you may not know about until you get on the ground. Some states like Texas only meet every other year. Other states like Florida need to clear three committees in the Senate if it stands to have a chance. That’s why it is important to bring in organizations like Critical Mass who are engaged in advocacy full-time.
• Patient Voices are Essential. Legislators are people too! What really helps cut through the jargon and medicalese is the testimony of young adults and their family members who have struggled — hopefully successfully, but all too often not — to find a way to protect their future ability to have a family while facing cancer. Many elected officials are parents or grandparents themselves, and many have also been touched by cancer. Reaching them on a personal level is important and sometimes provides that last push needed to get a bill onto the Governor’s desk.

We are thrilled to see this historic change happening, but much work remains to be done. The Alliance for Fertility Preservation and Critical Mass have been working in collaboration with local cancer groups, interested professionals, nonprofits, and patients across the country. If you are interested in getting involved in our efforts, please reach out at: advocacy@allianceforfertilitypreservation.org.

This piece is part of the 2018 Adolescent and Young Adult Cancer Awareness Week education series. You can download the Young Adult Cancer Advocacy in Action Toolkit here: https://goo.gl/56rJvk

Before joining the Alliance for Fertility Preservation as Executive Director, Joyce was the Cancer & Fertility Adviser for LIVESTRONG. Previously, she served as VP of Programs for Fertile Hope.

Joyce is the co-author of 100 Questions & Answers About Cancer and Fertility as well as several articles on cancer & fertility. Joyce has also given countless presentations to varied audiences across the country, and collaborated with leading professional and patient organizations to promote dialogue and policy change.

Joyce is a long-term survivor of leiomyosarcoma who opted for embryo freezing and surrogacy to create her family. Her personal oncofertility journey informs her professional focus and her commitment as a patient advocate.

Prior to her work at Fertile Hope, Joyce was a trademark attorney in Seattle, WA. Joyce obtained a law degree from Fordham University School of Law, and a B.A. from Occidental College. Joyce currently lives in Lafayette, CA with her husband, John, and their twin daughters, Alexandra and Olivia.