Our good friend Ron Clark died a few days ago, just a week and a half after his 30th birthday.
Ron was the funniest, coolest, sweetest, most selfless guy we knew. The world is way worse off without him.
Ron’s cancer was due to a rare disease called Von Hippel Lindau (VHL) that has no cure yet. Coincidentally, May is VHL awareness month. (If you’re a Grey’s Anatomy fan, that’s the same disease Teddy’s husband had). This disease is genetic and causes tumors to grow and can be very dangerous if unmonitored. Ron’s previously treated and monitored VHL was left unattended due to a lack of health care/insurance coverage that would allow for preventative care. While we can’t know for certain what would have happened, it is likely Ron would not have died a few days ago, or have spent the last year and half in a lot of pain if there was healthcare available that would have covered a yearly MRI scan to monitor his VHL. THIS IS A FAILURE OF THE SYSTEM.
Please take a few minutes and read Heather’s very informative blog post about VHL and the frustrating lack of healthcare available until Ron’s cancer was terminal. Then, join me in taking action by writing your representatives to encourage them to continue to press the issue of health care reform at the federal level so that this stops happening!
[Sidebar: This is likely to be my only political post, and I don’t really feel that this post is about politics as much as it is about basic human rights. While I know that some readers might not share my thoughts on the necessity for health care reform, I still urge you to help raise awareness, funding for patients, and funding for research on VHL and other rare diseases.]
If you’d like to email your representative and don’t know what to say, copy and paste this message:
To the men and women representing me at the Federal level:
Ron Clark died a few days ago at the age of 30 from cancer caused by a rare genetic disease called Von Hippel Lindau. Ron’s untimely death could have been prevented if he had access to a yearly MRI scan to prevent cancerous tumor growth. Unfortunately, because Medicaid would not cover this preventative care, and insurance with this preexisting condition was unaffordable for a college student whose parents’ insurance would not cover him, Ron was forced to go 7 years without a scan. When his body became ravaged with multiple types of terminal cancer, his Medicaid covered thousands of dollars of treatment and care, but that money could have been better spent preventing his death.
I urge you today to continue to find a universal health care option so people like Ron don’t have to die young. So people with rare diseases aren’t ignored. So our taxpayer dollars don’t go to helping people die, but helping people live.
[You can read about Ron’s battle and the many frustrating and ridiculous obstacles he faced trying to get help on his blog (http://morelikeasseffect.blogspot.com/ and his wife Heather’s blog http://heatherbelle79.blogspot.com)]