Changing The Definition Of Huntington's Disease

The definition of Huntington’s Disease used by the Social Security Administration is so outdated it causes many to be denied disability coverage the first time. According to the SSA, Huntington’s is simply a movement disorder. This definition does not take into account those that have issues with memory and thinking processes or behavioral or other psychological problems. And since each person’s progression in the disease is totally different, the person seeking disability may not even have the physical symptoms until the final stages when they have already lost the ability to process normal thoughts and actions. As a result of this incomplete definition of the disease, many are denied disability coverage.

My brother in law, Bill, is one of them. Physically, he does appear to be fine. He does occasionally have some trouble walking and maybe a little bit of difficulty swallowing; his real symptoms are more cognitive. His memory is unreliable. He has a hard time following through in some thought processes. For example, if he wants to cross the street, he simply starts walking across the street. His brain has trouble processing that he needs to make sure to check for any cars coming before he starts to cross the street. He is also affected mentally and emotionally as well. He is easily agitated and can lash out in anger or burst out crying for no real reason. Obviously, these are not physical issues.

For the several months, we have been working to get him approved for disability so that we can set up in a home of some kind, but it is not going well. In the first round, he has already been denied. Basically because the SSA believes there is no physical reason that he cannot work. And based on the SSA’s definition of the disease, that would make sense. He has no physical symptoms, so he must not have the disease is pretty much what they think. This has to change. The definition of Huntington’s Disease used by the SSA needs to change to cover all symptoms and make it easier for families to obtain disability when a loved one is no longer able to work and provide for themselves or their family.

Right now, there is a bill before Congress that will redefine the definition of Huntington’s Disease called the Huntington's Disease Parity Act.   This bill changes the definition to include the other symptoms of the disease  and not just the movement disorder that it was first defined as. In addition, this bill will also waive the current 24 month waiting period before someone can be covered by Medicare. For people such as my brother-in-law, this is very important. Currently, he is not being treated with any of the medications that are available to help minimize his symptoms. And, if he was approved for Disability today, he wouldn’t be able to purchase insurance and still be able to pay for a place to stay. Plus, he needs some of the medicines that they prescribe to Huntington’s patients today so that he might be around in two years when Medicare would kick in. But, if he can’t pay for it, how can he get the medications to survive the next two years? Of course, all of this hinges on whether or not he is considered incapable of working given his current status within the disease. He is not, but the Social Security Administration believes otherwise, leaving him to either live on the streets or be a burden on family members that are struggling in their own way with the disease.

I know we all have our own views about Social Security Disability and if it is the responsibility of the government to care for those who are incapable of caring for themselves for whatever reason. I am not asking you to do something that you might be against, but I do ask that you at least consider contacting your Representatives and Senators to encourage passage of this bill. First, it will help to raise awareness of Huntington’s Disease and the many ways it effects the roughly 30,000 people diagnosed, their families, and the roughly 250,000 that are at risk for developing this disease. In addition, passage of this bill will help to provide the necessary medical treatments much earlier than before for people such as my brother in law, who is single, unable to work and could not afford the cost of health insurance if he was to be approved for disability. Please consider contacting your House of Representatives (https://writerep.house.gov/writerep/welcome.shtml) or your Senators (http://www.senate.gov/reference/common/faq/How_to_contact_senators.htm) to encourage passage of The Huntington's Disease Parity Act.

You can read the details of the bill at http://www.govtrack.us/congress/bill.xpd?bill=h112-718

Thank you for your help and support!

How Will This Show Tell the Story?

Most television shows that mention Huntington’s Disease only do so in passing. Few really take the time to make it a major storyline. In fact, the number of show that have made it a true part of the story can probably be counted on one hand. So, I was very surprised when I sat down to watch an episode of Private Practice. Okay, so I am a bit behind. I have only just now sat down to watch and episode of Private Practice that aired a few weeks ago and had a Huntington’s Disease story line. Part of the summary is that a friend of one of the doctors threatens to kill herself if she test positive for the Huntington gene. I have to admit, that ticked me off. Why would a person do that? However, after watching the episode, I have to say they did a fairly good job of giving a bit of insight into the disease and what in can lead to. Essentially, after having recently buried her mother due to the Huntington’s Disease, Michelle debates getting tested. She says that if she test positive, she is going to kill herself because she doesn’t want to live life the way her mother did. Seriously? So, one of the doctors (Amelia) convinces Michelle to get tested and then lies about the results saying that Michelle does not have the gene when she really does. And all of a sudden Michelle’s world can go on. I wanted to throw something at the TV at this point in the whole storyline. Amelia thinks she is helping Michelle by allowing her to think that she doesn’t have the gene so she can go on living. While I admit that as the disease begins to take control of a person’s body, the outcome is not pleasant. However, should a person stop living today because of something that most likely won’t happen for many years down the road? In the end, Amelia felt guilty and came clean with Michelle letting her know the truth of the test results. Michelle is devastated and debates if she wants to end her life. Amelia finally convinces her that she needs to live for today and not worry about what will happen down the road. She doesn’t have any of the effects of the disease today and may not for many years to come. For all they know, Michelle might die in a car accident tomorrow but that doesn’t mean she stops leaving her apartment. And Amelia convinces Michelle that life does go on and that as a friend – who happens to be a doctor – she will be with Michelle every step of the way. Now the part where Amelia hints that she would be willing to help Michelle end her life when the disease begins to take control is a subject to discuss in another blog. I do have to give kudos to the show. They did a good job of describing some of the physical side effects that the disease can have on a person, but they took it a step farther. They took time to highlight the effects on the disease on family members as well as the personal struggle each person has as the decide whether or not to take that step to be tested. Not many shows have taken the time to do that. Thanks Private Practice for allowing everyone to view a small window into the lives of those that deal with this every day. If you want to check out the show, here is a link. http://abc.go.com/watch/private-practice/SH559070/VD55117689/love-and-lies