The Joy of the Lord is My strength!
Contact the Obama-Biden Transition Team for Huntingtons Disease
Happy New Year Everyone!
As 2008 comes to a close, it's a great time to look back on what we've accomplished in the last year and what we'll need to keep in mind as we move forward in 2009.
Fortunately, there's one important step we can take today to keep us on track: Contact the Obama-Biden Transition Team for HD
Earlier this month, Barbara Boyle, with a delegation of HDSA advocates, met with the staff of key Senate leaders (Senators Kennedy, Baucus, and Majority Leader Reid) to discuss how comprehensive healthcare reform can include the HD community. Now it's time to share our message with the transition team. Visit the link below to provide your input. A template for your comments is provided below.
http://change.gov/page/s/healthcare
I was so excited to be a first time voter this year, knowing the promise of yes we can , to be true! Amen! please read the words of the spokesperson for Huntingtons Disease that I have posted below, she said it best, and please help our familys with this heath issue, we have no other place to turn, so we turn to you.
I applaud your efforts to address the many problems of our existing heath care system, and as someone affected by Huntington's Disease, a rare, genetic and fatal neurological condition, I'd like to comment on some problems currently facing members of my community that can and should be addressed in any comprehensive reform.
Improving care at the end of life, maintaining incentives for orphan drug development, and eliminating pre-existing condition exclusions and lifetime caps on benefits would greatly benefit people living with HD, as well as many other disease communities.
Given that many with HD receive health care only after a disability determination, however, I want to specifically bring to your attention the need to address the severe gap in coverage facing disabled Americans. The Social Security Administration's medical guidelines for determining HD-related disability are hopelessly outdated and until disability listings are revised and the SSA can accurately and efficiently process applications, disabled Americans will continue to go without coverage.
Additionally, the 24-month waiting period for Medicare eligibility for disabled persons must be eliminated. This waiting period, coupled with the existing disability policies, delays essential medical care and often causes severe financial hardship for our families.
As you are likely aware, rare, genetic disorders are often marginalized, and I appreciate this opportunity to discuss how healthcare reform can include people living with HD.
please take the time to go to the site and submit your thoughts, even if you just cut and paste what is written here, let them know how many familys are out there who suffer from this disease. together we can be heard!
God bless you all
As 2008 comes to a close, it's a great time to look back on what we've accomplished in the last year and what we'll need to keep in mind as we move forward in 2009.
Fortunately, there's one important step we can take today to keep us on track: Contact the Obama-Biden Transition Team for HD
Earlier this month, Barbara Boyle, with a delegation of HDSA advocates, met with the staff of key Senate leaders (Senators Kennedy, Baucus, and Majority Leader Reid) to discuss how comprehensive healthcare reform can include the HD community. Now it's time to share our message with the transition team. Visit the link below to provide your input. A template for your comments is provided below.
http://change.gov/page/s/healthcare
I was so excited to be a first time voter this year, knowing the promise of yes we can , to be true! Amen! please read the words of the spokesperson for Huntingtons Disease that I have posted below, she said it best, and please help our familys with this heath issue, we have no other place to turn, so we turn to you.
I applaud your efforts to address the many problems of our existing heath care system, and as someone affected by Huntington's Disease, a rare, genetic and fatal neurological condition, I'd like to comment on some problems currently facing members of my community that can and should be addressed in any comprehensive reform.
Improving care at the end of life, maintaining incentives for orphan drug development, and eliminating pre-existing condition exclusions and lifetime caps on benefits would greatly benefit people living with HD, as well as many other disease communities.
Given that many with HD receive health care only after a disability determination, however, I want to specifically bring to your attention the need to address the severe gap in coverage facing disabled Americans. The Social Security Administration's medical guidelines for determining HD-related disability are hopelessly outdated and until disability listings are revised and the SSA can accurately and efficiently process applications, disabled Americans will continue to go without coverage.
Additionally, the 24-month waiting period for Medicare eligibility for disabled persons must be eliminated. This waiting period, coupled with the existing disability policies, delays essential medical care and often causes severe financial hardship for our families.
As you are likely aware, rare, genetic disorders are often marginalized, and I appreciate this opportunity to discuss how healthcare reform can include people living with HD.
please take the time to go to the site and submit your thoughts, even if you just cut and paste what is written here, let them know how many familys are out there who suffer from this disease. together we can be heard!
God bless you all
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