There is a new Congress in charge, which means there is a new bill. Now, we have H.R. 1015 or the Huntington's Disease Parity Act of 2013. This purpose of this bill as stated in the opening is:
To require the Commissioner of Social Security to revise the medical and evaluation criteria for determining disability in a person diagnosed with Huntington’s Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s Disease.
Today, if a person gets approved for Social Security with HD as the basis of the approval, they still have to wait two years before Medicare coverage kicks in. This often means two years before a person can begin to receive many of the medications that will help him to lead a better and longer quality of life. There are so many stories of people that have died while waiting to obtain the much needed Medicare coverage.
Now, we got lucky with Bill when it came to Medicare. Only because it took nearly two years for him to get approval for Social Security. Since it had been nearly two years since he began the whole process, he did not have to wait an additional two years before Medicare kicked in. He only had to wait for a few months.
However, that was still two years that he had to wait to begin much needed treatment for this deadly disease. Two years that could have been made a little bit better form him if he had medications to help minimize the symptoms or in some cases, at least slow the onset of some of those symptoms.
This is why this bill is so important. This is why it matters that Congress acts on this bill during this term. This bill has been presented before Congress in 2009, 2011 and now 2013. Each time, it has never gotten past the committee to be brought to the floor for a vote. The 2011 bill had 146 sponsors! But that isn't enough. It needs more! We need more sponsors to show support for this bill.
I have always said that I wouldn't get into politics on my blog. That isn't what I wanted it to be about. I still feel that way. However, this is the one time where I am willing to make an exception. I want people to help me and tell their Congress people that they need to pass this bill. It is important for my family and the family of so many others.
Please consider contacting State Representatives or Senators and ask them to support this bill and pass it. Not just for my family but for the roughly 200,000 people out there that are affected by this disease in one way or another.
