This week I chose something a little different for the “Guest Blog”, a politically-oriented post. We have covered many aspects to being a cancer survivor – courage, fear, friendship, family, depression and despair, the psychological, the emotional, and the practical. But whether we are politically active or not, politics is always in the background of our struggle. Politics and the resultant healthcare policy impacts research agendas, how all that treatment we’re receiving is getting paid for, the education of physicians, nurses, and other professionals, the pharmaceutical development and approval process, the distribution and availability of healthcare resources and a myriad other factors that affect our battle with cancer.
Heidi Adams blogs at Heidi’s Hot Flashes . She is a Ewing’s Sarcoma survivor. Heidi is a member of Planet Cancer and was invited to attend a nationally televised town hall meeting on healthcare reform at the White House – Prescription for America. The following is excerpted from her post “White House Or Bust”.
White House or Bust
There is widespread acknowledgement that our healthcare system is broken, and the solution is still a work in progress. President Obama has declared healthcare reform a top priority this year, and whatever comes out of the sausage-grinder of legislative process could affect us as young adults more than any other group.
As young adult cancer survivors, we are the collateral damage of our current system. We are the most likely to be under- or uninsured to begin with, and once you have that scarlet letter “C” on your medical history, you can kiss easy access to insurance goodbye until you’re Medicare-eligible, unless you are fortunate enough to be covered through your job.
But even that—employer-based insurance—is a double-edged sword. Young adults may stay trapped in less than desirable jobs or situations in order to keep health insurance, which, given where this occurs on the span of our careers, can have a huge impact on the rest of our lives. Want to dedicate yourself to that exciting software startup? Good luck. Better to go on to grad school or keep your barista job on the side, because you’ll be out of luck if your cancer comes back while you have a lapse in coverage.
I’ve never considered myself a political advocate, but now is the time for us to share our stories of how the current system has failed us, and offer suggestions AS EXPERTS on how it could change for the better. We are the ones who stand to gain the most—freedom of choice, portability, a safety net—or we can continue to be royally screwed in this no-man’s-land between CHIP and Medicare.
I, for one, am sick and tired of having to consider my health insurance coverage first and foremost when contemplating any major life decision, from having kids to changing jobs to moving cross-country. I am sick of coaching people on how to get discount chemo through compassionate use programs, sick of cobbling together financial assistance programs that can’t possibly help everyone who needs it, and overwhelmed with invitations to benefit concerts raising money for medical bills.
Most of all, I can’t stop my heart from breaking each time I get another of the hesitant, slightly desperate emails saying, “I was just diagnosed with cancer and I don’t have insurance. What should I do?”
Enough. Is. Enough.
I’m not telling you which way to act—whether to support the President’s initiative or any other option that is presented. But ACT. Seek information, get informed and give feedback to your Congressional representatives. We’ve been invisible for a very, very long time, but over the past few years, young adults with cancer have finally started to mobilize as a group, and now is the time to make sure our voices are heard.
Courtney and I positioned ourselves by the door so that we were the last people President Obama passed on his way out. I said to him, “Mr. President, we have to fix this.”
And he responded firmly, “We will.”
Let’s do our part.