Living With HD
Advocacy Day Reflections- 2010
November 25, 2009
HDSA Submits Testimony for SSA Hearing
On Thursday, November 19, HDSA went to Capitol Hill to attend a House of Representative Ways and Means Subcommittee hearing on "clearing the disability backlog."
For those living with HD and their families, applying for Social Security Disability Insurance (SSDI) is a complex and burdensome process. In addition to the enormous backlog of cases at the Social Security Administration (SSA), individuals with HD face additional hurdles- including outdated, medically inaccurate disability guidelines.
That is why Louise Vetter, HDSA Chief Executive Officer, submitted testimony for the record on behalf of HD families urging the SSA Administrator to expedite the rule-making process, and update the medical criteria for HD. Updating the medical criteria will support SSA's efforts to make timely and accurate disability determination and will ease the burden on individuals and families who suffer the effects of the disease.
August 24, 2009
Filner Requests CBO Analysis of HR 678
Congressman Bob Filner has called on the Congressional Budget Office to provide an informal cost analysis of HR 678, the Huntington's Disease Parity Act of 2009. The analysis will examine the number of individuals that will be impacted should the bill become law and the potential costs to the US Treasury.
The move is intended to address issues of cost that have been raised by Representatives when they have been asked by constituents to co-sponsor the legislation. "We are confident that the costs of enacting HR 678 into law will be nominal when considered against the direct and indirect costs of the current policy," said Huntington's Disease Society of America CEO Louise Vetter. Currently thousands of individuals with HD are prevented from receiving the Social Security and Medicare benefits they need to properly manage their condition. "We appreciate the continuing leadership of Congressman Filner and his colleague Representative Brian Bilbray and look forward to continuing to work with them to resolve this important issue."
Please contact your Representative in Congress and urge him/her to cosponsor HR 678.
Congressman Bob Filner [D-CA]
AUGUST 8, 2009
Congressman Ron Kind (D) Wisconsin of
House Ways and Means Committee
Agrees to become 26th Co-sponsor of HR 678
By Alan Rappaport
Thanks to Becky Grossklaus of Eau Claire, Wisconsin we now have the critical support of Congressman Ron Kind (D), a member of the majority on the House Ways and Means Committee and the Ways and Means Health Sub-Committee. Mr. Kind’s support of HR 678 is a significant milestone in our effort to make HR 678 law, as the Ways and Means Committee determines which bills go to the floor of the House to be voted upon. Bills such as ours generally are not considered by W&M until they are favorably considered and reported out by the Health Sub-Committee. Mr. Kind is very respected so we are honored to have his support! Only after favorable consideration by the full W&M Committee will HR 678 ever be sent to the “Floor” of the House for a vote. We need many more Co-sponsors from throughout the country to gain the critical mass needed by our supporters to move the Bill to a successful “Floor” vote.
HDSA supporters who think that they do not have the contacts needed to help gain co-sponsors for HR 678 should be encouraged by the serendipitous process that acquired Mr. Kind as a valuable and special Co-sponsor.
Allan Rappoport, Becky Grossklaus and Congressman Kind
Congressman Kind became a supporter of HR 678 because Becky wanted to do something to help the HD community… and suddenly found herself in the right place at the right time. But, more importantly, she made the leap of faith and courageously tried something that she had never done before. A little background might help you understand. Becky’s father was adopted and was unaware that he had HD until he finally was diagnosed at 70. He died of HD related complications at the age of 82. Becky had married, had children and grandchildren before she learned of her father’s diagnosis, Becky was not very active in HD programs, but she did know Congressman Kind. Her husband is prominent in the community and is the very successful President/CEO of a highly regarded company. They have hosted fund raisers on behalf of Mr. Kind in their home and in fact had hosted one just a day before Becky was contacted.. PLEASE do not stop reading now because you might think that you do not have that type of connection. PLEASE stay with us for at least another paragraph or two.
Now how did HDSA find Becky…or, how could you find your Becky? Simple! One of the San Diego HDSA Advocacy Committee members and his wife were planning a trip to the Eau Claire, Wisconsin area to visit their daughter’s family. He emailed his daughter, who coincidentally happens to work for Becky’s husband’s company, and suggested that the daughter ask around to learn if anyone could gain access to either Mr. Kind or one of his aides during his visit.
The daughter could not think of anyone, but told her boss about HDSA and her father’s request. Her boss suggested that she speak with the President/CEO’s Executive Assistant. The daughter did not know Becky, only knew of Becky’s husband as a result of his employee oriented management style. Soon a very surprised daughter received a message containing Becky’s phone number and email address and instructions for her dad to contact Becky directly. After a few conversations with the father, Becky called Rep. Kind. Becky and the father met Rep. Kind a few days later. Shortly after that meeting, Rep. Kind personally called Becky to emphatically state that, “HR 678 is long past due and I will contact Congressman Filner’s office to become a co-sponsor”.
Someone once wrote something along the line that you are never more than a few calls away from the contact that can get you what you need. Start with a call to anyone and keep on calling until you find your Becky.
And THANK YOU Becky Grossklaus for making the last call in this case that brought us a great co-sponsor!!!
MARCH 26, 2009
Spotlight: HDSA ADvocacy Day on the Hill
On Thursday, March 26th, something inspiring and effective happened. A group of advocates, all touched in significant ways by HD, made a trip to Capitol Hill to share their personal stories with their Representatives and ask for their co-sponsorship of H.R. 678, the Huntington's Disease Parity Act of 2009.
Mothers, husbands, brothers, caregivers, at-risk, gene positive - this group came together from districts across Virginia to educate Congress about HD and why this bill is so important to families across the country just like theirs who are struggling to obtain benefits at a time when they need them the most.
The group, led by Tim O'Neil, M.D. conducted 10 office visits throughout the day which we already believe will result in at least an additional 3 co-sponsorships. HDSA would like to personally thank the following advocates for taking the time to share a part of their lives with their elected officials, to educate them about the HD community and what life living with this disease is like, and for bringing us all one step closer to seeing this very much needed change realized.
Tim O'Neil Marge Rogan Dave Kendall
Karen O'Neil Ruth Hargrave Joe Siedlarz
Patty Hillman James Kerns Nancy Swain
Bryan Hillman Marie Clay Brian Wishneff
Margaret Storey
