For the last several months, HDSA has been monitoring the roll-out of health insurance exchanges, which is one part of the Affordable Care Act (ACA).


A Health Insurance Exchange is a marketplace for comparing, and buying health insurance. Each of these exchanges will offer a choice of different health plans for those without insurance as well as information to help consumers better understand their options. In order to participate in Health Insurance Exchanges, all insurance policies will have to cover a set of “Essential Health Benefits” (EHBs).  Though the ACA gives ten categories of EHBs, it does not specifically define what needs to be covered. Thus all 50 states will be creating an exchange by 2014. Click here to see a map of where the 50 states are in the exchange process.


Your Opportunity in California.


Right now, California has an exchange in operation, but it is in its early stages, so there is still an opportunity for feedback.  The California Healthcare Reform website is:


HDSA is asking advocates to get in touch and advocate for an EHB package that provides meaningful and affordable coverage for all aspects of health, both mental and physical. 


Click here for HDSA’s Essential Health Benefits Factsheet

Click here for talking points for your call


Here are three ways that you can take action:


1.    Submit a comment via email to the Task Force at

2.    Send an email to the California Health Benefit Exchange at

3.    Schedule a meeting with the California Office of the Patient Advocate here


Want to Learn More, or Lead the Effort Locally?
Contact Jane Kogan at to get involved with leading the effort in California.


If you have any questions about Essential Health Benefits, or any other HDSA Advocacy initiatives, please contact Jane Kogan at


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Please, sign the Genetic Alliance petition to ask that findings from research conducted with public funding be shared via the internet in understandable language. There are over 20,000 signatures already, and your help is needed to get to 25000. When the petition gets 25,000 signatures, it will be reviewed by White House staff. Please take action today, and spread the word!!!! (posted 06.02.2012)

Click here to sign -!/petition/require-free-access-over-internet-scientific-journal-articles-arising-taxpayer-funded-research/wDX82FLQ

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Huntington's Disease: The Faces, the Facts, & the Future 

“HD Advocacy” – speaker:  Misty Oto, HDSA San Diego Board

Click here to view the video:

(video provided by Gene Veritas)

Misty Oto, the advocacy chair for the San Diego Chapter of the Huntington's Disease Society of America (HDSA), spoke on the topic of "HD Advocacy" at the HD Regional Education Day, March 10, 2012. Held at the University of California, Irvine, the event was organized by HDSA's Orange County, Los Angeles, and San Diego chapters. Misty focused on the HD Parity Act, a bill in Congress that would allow HD patients to obtain their federal disability and Medicare benefits in a more timely manner.

The Huntington's Disease Parity Act  has been re-introduced in the House as HR 718, and introduced in the Senate as S. 648.

We need the continued help of our grassroots advocates to re-enlist everyone who cosponsored last year! Go to to personalize a letter to Congress.


 HDSA Advocacy Toolkit Click for documents you can download.

Join HDSA Advocacy on Facebook
to keep up with the latest in HDSA Advocacy.


List of HR 718 Sponsors/Cosponsors
List of S. 648 Sponsors/Cosponsors
Click above links for a list of Representatives and Senators who are cosponsoring the Huntington's Disease Parity Act. Then, contact Congress at!

Huntington's Disease Parity Act Advocacy Toolkit


Featured Document: 

 Tips for a Successful Meeting: This document outlines how you can meet with Congress locally about the Huntington’s Disease Parity Act, as well as what to say in your meeting.

HD Parity Act Myths vs. Facts  
This revised handout features an overview of what HDSA and advocates are hearing from Congress


H.R. 718: Click here to download a copy of the House Bill


S. 648: Click here to download a copy of the Senate Bill


House Dear Colleague Letter: This is a letter from the Congressmen Brian Bilbray and Bob Filner, our House Champions, that was circulated through the House asking for support from their fellow Congress Members.


Senate Dear Colleague: This is the letter from Senator Kirsten Gillibrand, or Senate Champion, that was circulated through the Senate.


Costs Associated with the Huntington’s Disease Parity Act:  This document provides an estimate of the costs associated with the Huntington’s Disease Parity Act using Congressional Budget Office (CBO) criteria.


Huntington’s Disease Parity Act Fact Sheet: This document is brief overview of the difficulties people with HD face when applying for SSDI and receiving Medicare that explains the need for the Huntington’s Disease Parity Act.