‘Congress, Hear Our Plea! Pass the HD Parity!’

Shouting is a fantastic way to get someone’s attention. That’s why I propose we shout to get the attention of the U.S. Congress.

Because May is Huntington’s Disease Awareness Month, my wife, Jill, who is gene-positive for Huntington’s disease (HD), came up with a video challenge to raise awareness for this rare disease and help the families battling it. (Sadly, our daughter, Alexus, is also gene-positive for HD.)

The challenge is simple, but we hope it will have a big impact on the HD community. All you need to do is find a “megaphone” (you can use an empty paper towel roll or cup your hands together) and record yourself yelling, “Congress, hear our plea! Pass the HD Parity!” Then upload the video to social media.

We hope our challenge will go viral and galvanize Congress to pass the HD Parity Act (HR 2050, SB 868), which would waive the two-year waiting period for Medicare and the five-month wait for Social Security Disability Insurance benefits for HD patients, as Huntington’s Disease News‘ Mary Chapman explained last August.

Recommended Reading

May 3, 2022 News by Mary Chapman

HDSA Launches Social Media Effort for Huntington’s Awareness Month

As the Huntington’s Disease Society of America noted in a news article last year, two years is enough time for HD to ravage someone’s life:

“During the two-year wait, HD’s destructive impact cognitively and physically robs the person of their ability to live independently. Additionally, the genetic nature of the disease and its onset during prime working years has a tremendous financial impact on families with HD, forcing families to wait even five months to receive their financial benefit once they qualify for SSDI is too long.”

I mentioned the HD Parity Act in a previous column, but I figured it was time to mention it again now that it’s been 30 years since President George H.W. Bush proclaimed May to be National Huntington’s Disease Awareness Month.

The 1992 proclamation stated that, “Today, patients and their families have just cause for hope; a new era of discovery is unfolding in research on Huntington’s disease. … Until scientists achieve these goals, however, affected individuals and families will continue to need to our understanding and our support.”

Fast forward to 2022, and there’s still no cure.

But I have just cause to hope that, through our videos, we can convince Congress to pass the HD Parity Act.

I have hope because Congress passed a similar bill, the ALS Disability Insurance Access Act, in 2019. That act became law in December 2020 after thousands of people in the ALS community advocated for it. Why can’t the HD community secure the same result?

Please join our movement to get the act passed. Record a video with the plea, post it on social media, and challenge someone else to do the same. My family’s hope is that thousands of people around the world will create a groundswell of attention for the HD Parity Act.

HD awareness is great; action to help those suffering is even better. Congress, please hear our plea!

Click here and here to see videos that my wife and I filmed. For more information, please check out the site I created.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.