My family line carries a rare illness called Huntington’s disease. Huntington’s causes the breakdown of nerve cells in the brain, leading to loss of coordination, hallucinations, memory loss and a range of other serious muscular, cognitive, behavioral, psychological and mood symptoms.
Tragically, the average person only lives 15 to 20 years after the onset of symptoms.
My mother and three of my siblings all had the disease, and the pain of watching them grow sicker and eventually succumb to their symptoms was excruciating.
Tragically, there are still no treatments to stop or slow the progression of Huntington’s. And while I don’t carry the disease, I worry so much for my family members. I don’t think I could bear to watch another loved one pass away from this disease.
For families like mine, the hope of new research breakthroughs is all we have. But under Congress’s Medicare negotiation legislation, the innovation we need could be restricted.
Should politicians opt to fix the prices of prescription medications, we could see 60 fewer medications in the next 30 years, according to the Congressional Budget Office. And while that might not sound like a big deal, one of those lost medications could be the cure to Huntington’s.
Pharmaceutical innovation is a matter of life and death for my family. I hope our lawmakers in Washington vote against these policies.