The Huntington's Disease Parity Act of 2009
Huntington's Disease Advocacy Needed!
We are calling on all Hoosiers affected by Huntington's Disease to take a moment and send a letter and an e-mail to your US Respresentative to co-sponsor a bill before the US House of Representatives called the Huntington's disease Parity Act (HR678). This is a important piece of legislation that will alter the way we in our community are accepted to receive our government benefits in line with with our disability diagnosis and to not have to wait the mandatory two years to receive Medicare. The HDSA has worked for us to advance this bill and now now they need our help.
Congressman Brad Ellsworth of District 8 received such a letter from several of his constituency and he graciously responded with a meeting opportunity. Chapter Board members Leo Rafail and Maria O'Connor along with caregiver Eric Waycott and his son Jake Waycott attended the meeting asking for the Congressman's support to co-sponsor the bill. He agreed and became the 30th cosponsor of the bill! Nationally the HDSA would like to have at least 50 cosponsors. We would like to deliver all if Indiana's Representatives as cosponsors but we need your support. So please take a moment to write your Representative with the letter provided so we can have this bill enacted into law and help all our families manage HD more easily with less stress We very rarely get the opportunity to do something so meaningful with so little effort so please take the time right away to contact your Representative.
Should you require any assistance as a result of your letter the Indiana HDSA chapter board members will be right there to help. Let's work together to get this done!
The Huntington's Disease Parity Act, Re. H.R. 678, to require the Commissioner of Social Security to revise the medical criteria for evaluating 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 is under consideration.
HDSA hopes everyone will take a few minutes during August to contact their U.S. House Representatives about HR 678 while they are in their home districts. Visit http://www.house.gov/ to find your local representative's office information. There is also a petition you can sign on the HDSA web site. It only takes a few minutes. 
| Ask Them Why Not |
More Info |
| If your Representative hasn't co-sponsored the HD Parity Act.... |
| Schedule a home office visit in August to ask why not |
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Rep. Ron Kind of Wisconsin just became the 26th Congress Member to support The Huntington's Disease Parity Act of 2009 (HR 678), but that still leaves 409 Representatives in the House that have not yet endorsed the bill.
If your Representative isn't yet a cosponsor, schedule a visit today to ask why not?
From August 3 - September 4, Representatives will be in their home offices meeting with constituents. This is a fantastic opportunity to schedule a visit with your Rep to share how HD has impacted your life and explain why people with HD desperately need HR 678.
It's easy to do, and now is the best time to do it. Click here (or visit capwiz.com/hdsa/home/) to find your district office information so you can schedule an appointment in August today. Tell the staff person that there is a bill that's very important to you and that you would like to speak with your Representative in person about it. Making the appointment now also gives you the opportunity to coordinate with other people you may know to go as a group. All the materials you'll need to make a successful visit can be found at www.hdsa.org/adv.
If you're nervous, have questions, or need any help setting up a visit or speaking with your Representative, please call us for help at (202) 288-5124. |
Representatives that have already shown support for HR 678.
| Sponsors |
| Rep. Bob Filner [D-CA51] |
Rep. Brian Bilbray [R-CA50] |
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| Current Co-sponsors |
Click on this link for a list of current Co-Sponsors: http://www.govtrack.us/users/events.xpd?monitors=bill:h111-678
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HDSA Advocacy Day on the Hill
On Thursday, March 26th 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. Read more about it.
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THE GENETIC INFORMATION NONDISCRIMINATION ACT (GINA)
The Genetic Information Non-Discrimination Act (GINA) creates new protections against the misuse of genetic information by health insurance companies and employers. GINA makes it illegal for health insurance companies to deny coverage or to charge a higher rate or premium to an otherwise healthy individual found to have a genetic predisposition to a disease or disorder. GINA also makes it illegal for employers to use an employee's genetic information when making employment decisions such as hiring, firing, promotions, or any other terms of employment. Read more about it. top
Indiana HDSA Chapter Advocacy Representative
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