Louisiana Lessons
While yes, I am a cancer patient, my background happens to be in legislative process. I have worked in some capacity with a legislative body since 2007. My expertise is in counting votes and getting laws passed. Still, I learned more about the process spending time in Baton Rouge.
I’m sure the natural thing would be to ask: Why Louisiana? It is a conservative state with a strong faith community. On paper, it probably doesn’t seem like the optimal place to introduce legislation to require payers to cover cryopreservation in advance of cancer treatment.
All that is true. Then again, you can never doubt the power of one person’s story.
Last year, a Louisiana woman from Jefferson Parish named Julie Stokes was diagnosed with breast cancer. She saw first-hand how dehumanizing a cancer diagnosis is for women and men of any age, but she could not believe that young adults also face losing their fertility and a chance at parenthood.
Julie happens to be a Republican member of the Louisiana House of Representatives. When she returned to work for the 2018 legislative session, she introduced a bill to cover women and men in her state who wished to preserve their fertility in advance of cancer treatment.
We learned about HB689 about four weeks ago after Julie single-handedly secured a favorable vote from the House Committee on Insurance. One person’s story can make a difference.
Critical Mass: The Young Adult Cancer Alliance and the Alliance for Fertility Preservation were brought in and we quickly worked to give Julie the support she would need to continue moving the legislation forward. We waited two weeks, knowing at any moment we would need to get on a plane and head to Louisiana. Finally, word came down that the Louisiana House Appropriations Committee was going to meet about the fertility preservation bill on Tuesday, May 1, 2018 at 9:30 a.m CT.
We quickly booked our flights and reached out to the young adult cancer community. More than 30 different organizations from across the country signed on in support. In addition, we put out an appeal asking for Louisiana young adult cancer patients and providers to join us at the hearing to show the Committee that their constituents were in support of the bill.
When I arrived in the hearing room on Tuesday, there were rows upon rows of supporters — and none for the fertility preservation bill. After each piece of legislation made its way through the process, large groups would leave and make room for the next set of advocates. Each time, I hoped to see the faces of young adults fill the room, but it never happened.
Julie and I walked to the witness table joined by a local fertility expert. We fought hard with passion, conviction, and facts. Members of the House Appropriations Committee had no idea that this was even a problem. Some were shocked to learn that women must pay 200 times more than men. Rep. Patricia Haynes Smith personally noted that this lack of coverage was not only a cancer care matter but a clear example of gender inequality.
The cost to expand this coverage was a source of much debate and thankfully, we were able to convince the Committee that the cost — which assumed 100 percent utilization — was too high. Even so, it wasn’t enough. The committee deadlocked — 8 in support, 8 against. We were one vote short. The bill failed to reach the 50%+1 threshold needed to advance to the House floor .One person had the power to move this legislation forward and bring Louisiana cancer patients one step closer to accessing fertility preservation prior to cancer treatment.
As we collected our things, the House Appropriations Committee Chair spoke up. Chairman Cameron Henry knows too well the unique needs of young adults impacted by cancer. His brother was diagnosed with cancer in his 20s. He understood the significance of the bill we were trying to advance. After the vote, Chairman Henry asked the committee to voluntarily refer the bill to next week giving Julie and I an unprecedented second chance to present before his Committee. There were no objections.
Carried by the personal experiences of three people — a patient, a survivor, and a sibling — we were given a lifeline, a glimmer of hope. Now we wait until a new date is announced.
Critical Mass has been working tirelessly with policymakers these last 18 months to find public policy solutions that will break down barriers faced by young adults after a cancer diagnosis. For the first time in history, legislators are introducing and reviewing legislation that recognizes our unique needs and supports young adult cancer patients, survivors, and their families.
But without the young adult cancer community speaking up and showing up, we will always deadlock. No one questions that the barriers we face are absurd. What convinces them to act and pass laws is you, their constituent. We cannot afford for you to doubt that young adults can make an impact. Your story, your voice, your face staring back at them during hearings, matter now more than ever.
While we wait for the next hearing on Louisiana House Bill 689, I hope we can count on your support. We also look forward to seeing you in Washington, D.C. for the first ever Young Adult Cancer Action Day where our community will speak with policymakers about the importance of passing HR 2976, the Deferment for Active Cancer Treatment. This national piece of legislation only has until December to become law. We are almost out of time.
Together, I am confident we will get that one vote. I know we are closer than ever to transforming adolescent and young adult care through legislative action. Your personal experiences dealing with cancer, from patients to providers, matter to me and they matter to lawmakers. Your voice can make a difference… but only if it is heard.
To learn more about the first-ever Young Adult Cancer Action Day on June 21, 2018 go to: https://criticalmass.org/action-day/#advocacy
