August 6, 2021 at 5:00 am ET
Last Thursday held a lot of firsts for me: my first time meeting members of Congress, my first time testifying in front of a House subcommittee, my first time being on that large of a platform and talking about the disease that has cast a shadow over my family — Huntington’s disease. Ranking member Brett Guthrie, my congressman, helped give me the opportunity to highlight this fatal, genetic neurodegenerative disease that took my grandfather, is taking my mother and will someday take me.
The experience I had last week is one I will not soon forget, but my work is not finished yet. There is still so much Congress needs to do to support families in the HD community by supporting access to care and cutting burdensome red tape.
As conversations around neurodegenerative diseases continue to grow in Congress, my mission is to keep the focus on HD. HD causes crucial parts of the brain that control mood, memory and motor function to shrink and die. The symptoms of HD are like having early onset Alzheimer’s, Parkinson’s disease and ALS all at the same time. Right now, an estimated 42,000 Americans, including my mother, are symptomatic with Huntington’s disease. In addition, another 280,000, like my brother, live at risk.
In my testimony, I talked about the pain of misdiagnosis, the pain of misunderstanding, the pain of knowing that while you watch your parent become symptomatic, you can’t help but think, “Will this be me?” Each child of a person with the gene expansion that causes HD has a 50 percent chance of inheriting that same gene mutation and developing HD. A flip of the coin decides our futures. After getting the genetic test confirming that I carried the gene expansion and will develop Huntington’s disease, I dedicated the time I have to being a voice for those who can no longer speak for themselves. Speaking on behalf of the HD community, it is time for lawmakers to act now and provide us with the help we so desperately need.
Today, Congress can pass critical legislation like the HD Parity Act (H.R. 2050) to remove the harmful wait periods for folks with HD, who currently have to wait more than two years to receive Social Security and Medicare benefits. Our community has been trying to pass this legislation for 12 long years, and we cannot wait any longer.
Today, our leaders can create a national program for neurodegenerative long-term care, so that when the time comes, families like mine can know that we will be able to find an appropriate residence for our mothers, fathers, brothers and sisters when they can no longer be cared for at home. And today, we can continue to include Huntington’s disease in conversations about devastating diseases, lifting the shadow that it has cast over hundreds of thousands of families nationwide.
For as long as I can, I will raise my voice to bring awareness to HD. For as long as I can, I will participate in clinical trials to help move us towards a disease-modifying treatment so people like me can live our full lives without fear of becoming disabled in our 40s. For as long as I can, I will help care for my mother, and watch my father’s heart break as his bride slips away. If nothing else, I hope that my testimony has brought Huntington’s disease into the light. I hope that light keeps shining.
Kala Booth is 34 years old and the fourth generation of her family to have Huntington’s disease; she currently resides in Cecilia, Ky.
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