Huntington's Disease Society of America
Unfortunately, those affected with Huntington’s Disease must fight a two-front war: one, against a disease that robs them of the ability to work and live independently; the other against a bureaucracy that forces them to unnecessarily experience long delays and multiple denials from Social Security Administration.
While medical science works to find a cure, I have joined with my colleague, Representative Bob Filner, to introduce H.R. 718, the Huntington’s Disease Parity Act, to work on a legislative fix. This bipartisan legislation will direct the commissioner of the Social Security Administration, in collaboration with the National Institutes of Health and Huntington’s disease experts, to update the agency’s guidelines. Also, because access to health care is often denied in the early stages of the disease, this legislation will waive the two-year waiting period from Social Security.
Time is not a luxury that those affected with Huntington’s disease have. Bureaucratic red tape should not get in the way of providing the critical care that people fighting this disease need.
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