Advocacy

This is my FAVOURITE page by far on this blog.  This is where I will post triumphs and accomplishments in the HD world.  In 2016 we had some major achievements and look forward to motivate and drive all of us together to make the 2017 just as successful but we will need your help to make it happen!!

Dear Advocates,

This has been an incredible year for the HD community because of advocates like you! Together we raised our voices and those in power responded with a resounding “We Hear You!”

In 2016, the HD community saw some major wins that wouldn’t have been possible if people like you hadn’t raised their voices all year long to help improve the lives of individuals and families affected by Huntington’s disease.

In 2016:

1)      The Social Security Administration (SSA) updated the guidelines used to determine disability for individuals with HD. This is something the HD community has been working towards for more than 8 years through the Huntington’s Disease Parity Act, as well advocacy with SSA directly. The Social Security Administration released new guidelines in 2016 that finally take into account the cognitive and behavioral aspects of Huntington’s disease as disabling.

a.       In their final rule SSA recognized the enormous impact that your voices had on their changes. They even mentioned that more than 33% of all the comments that they had received on all neurological diseases were from HD families. This is an incredible accomplishment for all HD families and further proves that we can accomplish amazing things when we raise our voices together.

2)      Your stories didn’t just make a difference with the Social Security Administration in 2016, but they helped drive unprecedented support for passage of the HD Parity Act! In 2016, HD Advocates sent nearly 8,000 messages to Congress about the HD Parity Act and we had advocates across the country taking meetings in-district as well as traveling to Washington D.C. to take meetings on Capitol Hill. Phone calls, e-mails, in-person meetings and even tweets helped make major progress for us in 2016. We crossed major milestones in the House and Senate, reaching 265 cosponsors in the House, including more than 100 Republican co-sponsors. We saw our first Republican co-sponsors in the Senate, and reached an incredible 20 co-sponsors there. We also added major co-sponsors of each of the committees of jurisdiction in both the House and Senate. Although we did not get full passage in this Congress, our voices created bipartisan pressure on Social Security to update the disability guidelines for individuals with HD, accomplishing half of our HD Parity Act goals. Your continued outreach to your elected officials has put us in an excellent position as a new Congress begins work in January!

a.       As a direct result of an in-district meeting with Advocates in Michigan, we saw action from the Ways & Means Committee in pressuring the Congressional Budget Office for an official score for the HD Parity Act. Within a few months, the HD Parity Act was given a score from the Congressional Budget Office, a crucial puzzle piece for the bill to move forward in the new Congress!

3)      Congress passed the 21st Century Cures Act. This is a bill which the HD community rallied behind with many rare disease organizations, and as a result we will see vast increases in funding to the National Institutes of Health for research into neurological diseases. The legislation also creates a new initiative to better assess the prevalence rates and access to care for rare neurological diseases like Huntington’s disease.

4)      Advocates wrote thousands of messages in support of an expedited review of SD-809, a new drug which hopes to target movements in HD patients with fewer side effects than current treatments. Thousands of stories and signatures were hand delivered to the Food and Drug Administration. The Food and Drug Administration soon afterwards accepted the application for review of SD-809.

Now, even though the HD community had all of these incredible victories in 2016 that doesn’t mean we have an empty plate for 2017. There are still things to be done…

For 2017:

1)      We are doubling down on our efforts to pass the waiver of the 2-year waiting period in the Huntington’s Disease Parity Act! We are prepared to fight to the finish to make sure this bill gets passed. The passage of the HD Parity Act will ensure that folks get the care they need when they need it. Congress comes back into session in January, so keep an eye out in early February for a call to action on the HD Parity Act!

2)     As Congress debates the repeal of the Affordable Care Act and a replacement plan, we are going to work as hard as we can to ensure that care and insurance is still accessible to folks who have pre-existing conditions, to make sure that we don’t have to worry about lifetime caps for insurance costs, and to make sure that programs like Medicaid and Medicare stay accessible to those who need them in the HD community.

3)     We will work to expand protections for individuals who have genetic diseases like HD so they don’t have to worry about being denied for benefits like Long Term Care insurance and Life Insurance.

As 2016 comes to a close, we can look back and with certainty say that the HD community’s unified voice is a force to be reckoned with. The work that advocates and the community as a whole have done this year is truly inspiring, and we are committed to making sure that our voices continue to be heard in 2017 and beyond.

Without you, none of this would have been possible. Thank you for everything you do.

Happy Holidays and a Joyful New Year!

(VIA: Jennifer Simpson and the HDSA Team)

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