Friends and Family,
Sometimes, you have to take a stand. It happened for me when I learned that the Oregon Health Plan (the states’ affordable care/Medicaid program) was holding a public hearing to consider banning payment for cancer genetic testing. How could they do such a thing? To deny testing meant to deny access to any targeted therapies. Why should those with limited means be limited to the same treatment options that have been around for decades? This is not acceptable!
I coordinated with LUNGevity and Caring Ambassadors, skipped work last Thursday, and showed up to testify. I’m so very glad I did.
The review committee started with their own discussion, where it became clear that the chairman thought such testing was a waste of resources. He also clarified that this proposal would ban payment for most, but not all, genetic testing. Representatives from drug companies, testing companies, advocacy groups, and health care systems all testified in strong support of testing. The committee chair was not impressed.
When all the professionals were done talking, I was the final speaker. First, I read the testimony of Jacque, a 32 year-old survivor friend who couldn’t be there. I could barely hold it together – actually, I didn’t – while I read of her six-year battle, and how she wouldn’t be alive without the genetic testing that has opened the door for her to have had two separate treatments with targeted therapies.
Next, I shared a brief version of my own twelve-year story. I shared the highs, the lows, the fears… and a lot of my own tears. I told them that, without genetic testing and then targeted therapy, they would have been talking to my widow. I am alive today because of two separate targeted therapies, which were only available after genetic testing.
Three of the four committee members were clearly moved, but the committee chair wouldn’t (couldn’t?) make eye contact with me. One member had flash cards to warn speakers when their time was running out, but he never lifted a card, even after I continued telling my story after my time had expired.
When I finished, there was an awkward silence. The chair didn’t say another negative word about testing. The committee fumbled around for a bit, unwilling to vote to ban payment. Finally, they passed a resolution to table the topic until they had more data. I’m calling this a victory! It would have been next to impossible to overturn a rule once it is in place.
When they were finished with the vote, all the people who had spoken, and a few others who hadn’t, gathered outside the committee room. Most of them came up to me, one by one, to tell me that they thought that the ban would have passed if I hadn’t shared Jacque’s and my stories. Science is one thing: putting a human face on the discussion was entirely another matter.
I have seen the same responsiveness when lobbying in Washington, DC. Our elected representatives are far more receptive when you share your story than if you only offer statistics.
If your passion is lung cancer, I hope you share your story with anyone who will listen. And if your passion is some other cause, share the personal side of that, too. This has been a great reminder for me that in the end, we’re all human, and humanity is what we respond to. That is why I continue to share so much of myself with you, no matter how uncomfortable it is. It still brings us closer together.
Hoping your life is uncomfortable… in a good way.