Roosevelt Institute | Cornell University

Huntington's Disease

By Matthew HersmanPublished October 21, 2014

Huntington's Disease (HD) is a debilitating hereditary disorder that leads to the progressive decline of one's physical and mental capabilities. Current legislation used to determine Medicare and Social Security Disability payments are outdated and in major need of reform in order to ensure that those with HD are able to get the treatment they need.

By Matthew Hersman, 10/21/2014

Huntington's Disease is an inherited neurological disorder that impacts approximately 30,000 Americans with over 250,000 at risk for the disease. This devastating disease leads to the complete deterioration of one's physical and mental capabilities.  With the onset of symptoms usually starting between the ages of 30 and 50, an individual with HD begins to find difficulty thinking, walking, and even speaking. They will begin to have personality swings, impaired judgment, unsteady gait, and a diminished mental capacity.  The symptoms of HD patients have been described as a combination of Alzheimer's, Parkinson's disease, and amyotrophic lateral sclerosis (ALS) like symptoms. These symptoms continue to worsen until eventually, every individual with the disease becomes entirely reliant on others for care. These symptoms persist on average for 10 to 20 years, ultimately leading to death by pneumonia, heart failure, or some other complication. There is currently no cure for HD and research has yet to find a way to slow down the onset of symptoms. Furthermore, if just one parent has Huntington's Disease there is a 50% chance that it will be passed on to each offspring, and every person who inherits the gene will eventually contract the disease in his or her lifetime.

Present eligibility guidelines to qualify for Medicare and Social Security Disability payments are outdated and harmful to those with the disease. Current eligibility for Social Security Disability payments only take into account the physical Parkinson's-like symptoms of the disease when the onset of cognitive deterioration can begin up to a decade earlier. This leads to wrongful denials to people with HD and robs them of the help they need. In addition, there is a current two-year waiting period in order to qualify for Medicare. During these two years of waiting, the individual will find his or her mental and physical capacity steadily decline with no way to treat the symptoms. Their access to neurologists, psychologists, and prescription drug coverage is severely hampered because of these barriers.  Furthermore, these symptoms usually occur during an individuals working years when disability benefits are most needed.  By treating inflicted individuals early, this will lead to more effective treatment early on and avoid higher treatment costs at the later stages of the disease. 

Luckily, there are calls to reform the problems of current legislation in order to ensure that these individuals receive the care they need. The Huntington's Disease Parity Act is a crucial piece of legislation that, if passed, will improve access to Social Security benefits and Medicare coverage for those suffering from this debilitating disease. This legislation would direct the commissioner of the Social Security Administration to update and improve the eligibility criteria for those suffering with HD to reflect the most current research on the disease. This legislation would also remove barriers to accessing Medicare by eliminating the current mandatory two-year waiting period for those with HD.  Robbing those of the medical care they need inflicts incredible harm on individuals with HD along with their loved ones. Although this legislation has received widespread bipartisan congressional support, the bill has yet to pass. If you are interested in taking action, go to the HDSA E-Action Center, to contact Congress!