The Parity Act: What It Is and Why It Matters

Dealing with a diagnosis of Huntington’s Disease is challenging enough. Especially if you have reached a stage in your life where you are exhibiting symptoms of the disease prompting you to get tested. So, when you reach that point where you can no longer work because of the disease and are not old enough to retire, you need an easy approval process for both Social Security Disability and Medicare.

As it stands today, the definition of Huntington’s Disease as defined by Social Security is inaccurate. The only symptom of the disease that they recognize as being a disability is the presence of chorea. If that was the only problem with the disease, it would not be a big deal. Unfortunately, that is not the case.

Huntington’s Disease affects the brain in a variety of other ways as well. Many of these other symptoms begin showing up long before the chorea begins to take place. They can be just as debilitating and make it impossible for a person to perform many of the duties that even the most basic of jobs requires. There are many cognitive and behavioral issues that can begin showing as far out as 10 years before any of the uncontrollable movements begin to take place. 

There are many different ways that loss of cognitive function can affect you. For example, say you are a UPS Delivery Driver that has to drive a truck around every day. You have the same route every day. You have several places that you need to stop at every day either to deliver packages or pick some up. Unfortunately, Huntington’s Disease has begun to affect your mind though, and one day you forget a stop on your route – even though you have had the same route for 10 years. This causes you to be reprimanded in some way. It continues to happen at random and you progress along the disciplinary action plan as set forth by your company until they have no choice but to let you go.

The situation really is beyond your control.  You cannot help that your brain has short circuited in such a way. It is not your fault that Huntington’s Disease has begun to wreak it havoc in your life making it impossible to do things that you used to do every single day. The last thing you need is to have difficulty getting the disability benefits you need because of this outdated definition of the disease.

Speaking from experience, it can take years of denials before being approved for Social Security Disability. From the time Robert’s brother first applied to when it was finally approved, it took three denials and nearly two years. Finally, thankfully, he was approved for benefits. It still took two years and caused a lot of hardship on him and us as his caregivers as well. Stress is not a good think for a person dealing with Huntington’s Disease and heaping this undue stress only makes things worse.

Plus, there is a mandatory two-year waiting period before a person can get Medicare after they have been awarded disability benefits. Two years is a very long time in the world of a person who has reached this stage in their condition. There are numerous medications that can help a person living with HD by minimizing some of the symptoms of the disease but that are not cheap and cannot be afforded by someone living on disability alone. There have been many who have died during the two year time frame because they do not have access to the medications that can help them.

Both the definition  of Huntington’s Disease as defined by the Social Security Administration and the two year waiting period for Medicare need to change. Currently, there is an act before Congress called the Huntington’s Disease Parity Act that is aimed at making these changes a reality.  We need them to pass it. Not just for my family, but for every family out there that has to struggle with this dreaded disease.  We need to urge our elected officials to pass this bill for every family out there.  

You can help!

For more information, visit the Huntington’s Disease Society of America’s Advocacy page to learn more about the bill and how you can help. You can also visit Raise Your Voice for Parity to locate your state representatives in Congress and encourage them to take action on this bill.  I hope you will consider doing so.