WASHINGTON — For the millions of Americans with brain diseases and disorders, many of them incurable and degenerative, life often is filled with challenges and uncertainty. 34-year-old Kala Booth of Cecilia, Kentucky is the fourth generation in her family to have Huntington’s Disease, a brain disorder caused by a defective gene that impacts movement, mood and thinking skills.
She saw firsthand how it ravaged her grandfather.
"In the late 90's/early 2000's, when I should have been creating memories with my papaw, I was emotionally disconnecting from him. Huntington’s Disease had turned this previously gentle man into someone who beat my mamaw black and blue, someone we needed to keep a phone nearby in case we needed to call 911," said Booth at a U.S. House Health, Energy and Commerce subcommittee hearing last week.
Though advancements in research have given doctors a better understanding of the brain, lawmakers have said a lack of investment and the arduous process to approve drugs impedes the development of drugs to treat brain diseases. The cost of medications is a problem, too.
But Republicans including Rep. Brett Guthrie (R-KY) have long argued Democrats' proposals to drive down drug prices, by giving the government more negotiating power over them, would be a disincentive for drug companies to find new cures.
"HR3, the drug pricing bill, is not the path forward. If this bill becomes law, I believe innovation for therapies to treat neurodegenerative diseases will be in jeopardy," Guthrie said. Guthrie invited Booth to testify at the hearing. "I support the bipartisan alternative Lower Costs, More Cures Act to reduce drug prices and protect innovative cures."
"It is clear that more must be done to support the discovery and development of safe and effective treatments and cures, and to provide quality, affordable, and equitable care to patients and their families," said Rep. Frank Pallone (D-NJ).
Booth, who officially learned she had Huntington’s just a few years ago, spoke about the way the disease consumed her mother. She hopes her advocacy will change how people living with the disease are treated in this country. She testified that those with Huntington’s and other diseases should not have to be burdened by lengthy wait periods to be eligible for social security.
"The disability process was very confusing and frustrating. It took 16 months to finally get my mom's application approved. She was denied two times and it wasn't until we finally hired a lawyer that she was finally approved," Booth said.
The committee's focus is not only Huntington’s, but other brain diseases as well like Lou Gehrig's disease and Alzheimers – the sixth leading cause of death in the United States.