I saw an article on CNN.com today about “Weeding the budget of $17 billion”. I agree this is necessary but I’m scared it will have a major impact on many lives, mine included. I have been married for 26 years and I have Huntington’s Disease. Sadly, many married people in the HD community are resorting to getting a divorce just so the person with HD can qualify for Medicaid and get treatment. Let me explain. HD is like Alzheimer’s, ALS (Lou Gherig’s Disease), Parkinson’s, and Schizophrenia all rolled into one. It is a neurodegenerative; long-term disease with no treatment, no cure, and it causes complete physical and mental deterioration.
People with HD are currently getting denied SS disability three, four, five times and even having to hire a lawyer to get their disability approved. The reason is because the SSA is using out-of-date medical criteria for people seeking disability. Granting disability won’t even cost the Government more money because once it is finally paid; it is retroactive to when it was first applied for. The HD community has been working with the SSA for several years and although they agree it needs to be changed, it hasn’t been done. Finally, we decided to go to Congress.
We’ve been working to get Congressional support for HR 678, The Huntington’s Disease Parity Act of 2009. This legislation would require the SSA to update the outdated medical criteria for people with HD seeking disability. It would also waive the required two-year wait for Medicare benefits. This has already been waived for ALS sufferers. The only cost associated with HR 678 will be paying Medicare benefits sooner but it will be relatively low because only approximately 30,000 people in the USA have HD with another 150,000 “at-risk”. I thank God there is a low number of people with this horrible disease, but it does make it difficult to get our voices heard.
The extra cost in Medicare benefits would be less than what it shows on paper because while Medicare benefits are being paid, it will help people with HD and their families to avoid other Government-provided assistance such as welfare. One of the women in our delegation was a care-giver for her mother-in-law, her late husband, and now her son who is in his early 30’s. She also has a daughter who has tested positive for the HD gene. This woman has had to borrow against her house, credit cards, everything, just to pay for medication and doctor’s visits for her son. Since he was so young and most of his symptoms didn’t match the SSA’s medical criteria, it took years for his disability to be approved. This is not uncommon for families with HD.
You see, HD is a family disease. It is genetic and every offspring of an affected parent has a 50% chance of inheriting the disease. My Dad, David A. Kerns, Sr., has HD. Dad was a Marine, served an entire career as an Officer of the Central Intelligence Agency, and capped it off with several more years as a Department of Defense Contractor. His service to his Country was exemplary; his briefings went directly to a couple of Presidents. I am so very proud to be his daughter; I would never trade my life or family for an HD-free life.
I am very concerned that the current trimming of budgets will impact our ability to get support for H.R. 678 just because it will be perceived that it will “cost money”. I have been diagnosed with early cognitive impairment due to HD so I will be one of the ones that don’t match the SSA’s medical criteria for disability. I am still working and hope to be able to for a few more years but I am incredibly sad that I will probably be one of the ones who have to get a “paper divorce” after a lifetime with my husband. I am also more worried for him and how he will be able to live when all of our savings are gone because of me, than I am for how the disease will affect me.
I have never even written to a company before, much less the President of the United States of America. But I keep hearing that you are working to keep communication with the public open. HD families are so desperate for help that I wanted to try to help while I am still able to so I'm running a petition drive and have been to Capitol Hill.
After this long winded letter, I guess I am asking for your support for H.R. 678 in any way that you can. We have 19 sponsors and co-sponsors right now but need many more if we are to have any success. I thought we were going along great until I read yesterday that most bills never even make it out of committee. It really burst my bubble and I am usually a very optimistic person. There is so much waste in Government spending but this is crucial and I’m afraid it will fail because of the state of the economy and people’s perception that it’s “more money we have to spend”. If you, your family, or your Staff has any ideas that might help, please let me know!
Thanks for your time and God Bless.