Huntington's Disease Advocacy Center - HDAC's Political Advocacy Portal

Advocacy Work Group

Welcome to HDAC's Portal for HD Advocacy. Our objective for this page is to first make you aware of the issues before our State and Federal government officials (or those that SHOULD be) and to secondly help you to become effective advocates so that you can make a difference in the lives of those you love.

Current Issues

H.R.493, the Genetic Nondiscrimination Act of 2007 has been introduced. Watch closely and advocate heavily.
H.R.3 May need your help to override a Presidential veto. If you are in agreement that the Federal Government shouldn't limit HD researchers to a severely limited set of embryonic stem cell lines then you should check to see how your congressman voted on this and if they voted against it then they need to hear your opinion.
Continuing Resolution to increase funding of the National Institute of Health (NIH)

Needs Assessment

We need to document the need for each of our advocacy agenda items. The following statement sums up what we are up against.

"If one were to design a condition with features which would lead it to fall through the cracks of the American health care systems and the social safety net, one could hardly do better than Huntington's Disease." Huntington's Disease workgroup, published by the Robert Woods Johnson Foundation.

We will be collecting information from published sources if possible. I am probably going to do a publishable study of caregivers, stress, and services to add weight to our concerns.

In addition, we will need personal stories. Here's a link to my own personal story which Ron C. gathered along with others in support of therapeutic cloning of stem cells, as an example.

Example Testimony

Policy Agenda

We will need to be as specific as possible about what we want. For example we can't just say, "It shouldn't be so hard for people with Huntington's Disease to get approved for Social Security Disability." We need to lobby for a separate section for Huntington's Disease in the "Blue Book." Huntington's Disease is mentioned but the reviewer is directed to criteria for other diseases with an emphasis on one serious symptoms. The criteria for Huntington's Disease must reflect the constellation of sometimes subtle symptoms which combine to disable the person from working. There should be an explicit recognition that someone with Huntington's Disease will eventually become disabled from work; there is no such thing as a "mild case" or a remission. Finally we need to get a medical expert with credibility to write the criteria we want used.

Example House Bill for Huntington's Disease

Articles on Advocacy

FDA Hearing on Tetrabenazine scheduled for December 6, 2007
by HDSA
We have received confirmation that the FDA Advisory Committee hearing for Tetrabenazine (Peripheral and Central Nervous System Drugs) will take place on December 6, 2007 from 8:00 a.m. – 5:00 p.m. at the Sheraton College Park Hotel in Beltsville Maryland. The Open Public Hearing which provides patients, caregivers, physicians, and advocates an opportunity to address the Advisory Committee will take place from 1:00 – 2:00 p.m.
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Mandate for Public Access to NIH-Funded Research Poised to Become Law
by Marsha L. Miller, Ph.D.
Under a mandatory policy, NIH-funded researchers will be required to deposit copies of eligible manuscripts into the National Library of Medicine’s online database, PubMed Central. Articles will be made publicly available no later than 12 months after publication in a peer-reviewed journal.
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Hitler's 'Cure' for Huntington's Disease
by Phil Hardt
Sometimes forgotten history needs to be remembered, no matter how painful.
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Advocate for the Genetic Information Nondiscrimination Act of 2007
by Steve Ireland
The Genetic Information Nondiscrimination Act of 2007 is winding its way through the legislative process. This is a critical piece of legislation for HD families that must be passed. Make sure you weight in on this with your legislative representatives.
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Mitchell Urges Support of Stem Cell Research
by Marsha L. Miller, Ph.D.
The HD community's own Phil Hardt shows that one person can make a difference. The need for a cure for Huntington's Disease has now been recognized on the floor of the U.S. House of Representatives.
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Actor Michael J. Fox Stumps for Candidates and Stem Cell Research in Tempe, Arizona 11/6/06
by Phil Hardt
On November 6, 2006 Michael J. Fox visited Tempe, Arizona to stump for U.S. Congressional candidate Harry Mitchell and U.S. Senate hopeful Jim Pederson, who are both advocates of ethical embryonic stem cell research. Phil Hardt shares his experience there.
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Testimony before the Secretary's Advisory Committee on Genetics, Health, and Society
by Phil Hardt
This is the record of Phil Hardt's testimony before Congress.
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The FDA Advisory Committee Meeting on TBZ
by Eric Waycott
The FDA advisory committee has unanimously voted to recommend approval of tetrabenzine (TBZ) for use in treating chorea of Huntington's disease sufferers in the United States. This may be the first example I know of where the HD community made the actual difference in decision making.
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Extra payments to Medicare Advantage plans to total $8.5 billion in 2008
by Marsha L. Miller, Ph.D.
Private Medicare Advantage (MA) plans will be paid an average 12.4 percent more per enrollee in 2008 compared to what the same enrollee would have cost in the traditional Medicare fee-for-service program.
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Using the Neuropsychological Exam and Other Tools To Help Those Struggling With the “Softer” Symptoms of Huntington’s Disease
by Phil Hardt
Over the last seven years I have had the privilege of assisting hundreds of person’s with Huntington’s Disease (Phds).
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