Failure to Pass the HD Parity Act Angers My Gene-positive Wife
Advocates have been urging Congress to pass the act since 2010
For months, people from across the U.S. have been working hard with members of the Huntington’s Disease Society of America’s (HDSA) advocacy caucus to convince members of Congress to pass the Huntington’s Disease Parity Act. My wife, Jill, who is gene-positive for Huntington’s disease (HD), and I were just two of them.
Unfortunately, our efforts failed.
Congress’ omnibus appropriations bill for fiscal year 2023 didn’t include provisions of the act, which would waive the current two-year waiting period for Medicare coverage and Social Security Disability Insurance (SSDI) for those with Huntington’s who qualify for federal disability.
“Unfortunately, despite 12 years of advocacy, HD families will continue to suffer federal neglect and wait for the Medicare and SSDI systems to support their health needs,” said Louise Vetter, HDSA’s president and CEO, in a Dec. 20 statement.
After hearing the news that Congress failed to pass the act again this year, Jill made a face that I refer to as “sangry” (sad and angry).
“Do you know how long 12 years is?” she said. “Can you imagine what else advocates could have accomplished for the HD community if this had been passed years ago?”
I didn’t answer. She didn’t want an answer. Even though I was quiet, I understood. I felt her pain.
I feel it every time one of us sends an email to a member of Congress, asking them to waive the two-year rule. I feel it every time I attend an HDSA advocacy caucus meeting with Jill. I feel it every time Congress doesn’t pass the act — and the entire process has to start over from the beginning. I feel it every time we have to share how HD has decimated Jill’s family tree. I feel it every time I have to share my HD story with new members of the House and the Senate and hope someone will care enough to get it past the finish line.
The cost of waiting
A few days before hearing the sad news, I got a text from “My Beautiful Wife,” which is how Jill is listed in my contacts. Her text listed a number of events that had occurred 12 years earlier, in 2010:
- Prince William and Kate Middleton announced their engagement.
- Apple released its first iPad.
- Lady Gaga wore her infamous meat dress.
- BP’s Deepwater Horizon oil rig exploded, causing the largest marine oil spill in history.
- Kevin Systrom and Mike Krieger launched Instagram.
The next text she sent said, “And countless people have lost their savings, their homes and eventually their loved ones because they had HD and waited two years for Medicare.”
Jill was sad when she wrote that. Now she is angry.
Something has to change.
What if you got angry, too? Help us enact the change that needs to happen.
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.
How can I join the fight for passage of the Huntington's Parity Act? My Father, my Uncle and now my oldest brother have all been lost to Huntington's (and pneumonia). I read your columns faithfully and so appreciate all you and your Family do for the rest of us who face the loss, terror, pain, financial setbacks and frustration of this disease. Waiting two years for Medicare and SSDI is outrageous. And waiting 12 years so far is UNACCEPTABLE! I am a US citizen from Texas, living in Panama (much better health care here and less expensive), but I can help with a computer if I have guidance on where to start and go. Please let me know. Thank you and bless you and your Family.
Thank you, Donna, for reading our columns and sharing your story. My heart goes out to you for all the loss you have endured. I hope that the research they are conducting now will soon lead to better treatments for those suffering from HD. Your anger is understandable, and I am so happy to hear you would like to join us in advocating for families affected by this horrible disease. Right now, the HD Parity act has been “put on a shelf.” The legislative session for 2022 has ended and when the new session begins, the bill will have to be reintroduced. If you go to https://hdsa.org/advocacyhome/advocacy2/, you can sign up to be part of the HDSA Advocacy Caucus. There are monthly meetings and if you are not able to attend, they send the information given during the meeting to all members. You will also see at the bottom of the page a link to find elected officials to email when the time comes. Jill and I ask our families to send emails during the session as well. Our leaders need to know how much HD affects us all and hearing from voters is important. Take care.
I would also like to know how I can help get this passed as well. How can I join the fight for passage of the Huntington's Parity Act? My Husband and both of my sister in laws have this horrible disease . I read your columns faithfully and so appreciate all you and your Family do for the rest of us who face the loss, terror, pain, financial setbacks and frustration of this disease. Waiting two years for Medicare and SSDI is outrageous. I am a US citizen from living in Canton, MI but I can help with a computer if I have guidance on where to start and go. Please let me know. Thank you and bless you and your Family.
I am so sorry that your family has suffered because of HD. I know as a caregiver your time is limited and I appreciate you reading our column. If our struggles help make one person feel less alone, it is worth it. I am happy to hear you would like to be involved. Right now, the HD Parity act has been “put on a shelf.” The legislative session for 2022 has ended and when the new session begins, the bill will have to be reintroduced. If you go to https://hdsa.org/advocacyhome/advocacy2/, you can sign up to be part of the HDSA Advocacy Caucus. There are monthly meetings and if you are not able to attend, they send the information given during the meeting to all members. You will also see at the bottom of the page a link to find elected officials to email when the time comes. Jill and I ask our families to send emails during the session as well. Our leaders need to know how much HD affects us all and hearing from voters is important.
Bless you as well!
Just aware of help. Please send info to my email. My husband has Horrible Huntington’s.
We do not what, if any, help he is available to receive.
I am sorry to hear of your troubles. The HDSA website currently has resources for families affected by HD. They have tab on their main page labeled “Find Help.” There you can find things, such as resources in your area, where to find support groups, information of living well with HD, and so many other great ways to get help. If your husband is a patient at a Center for Excellence already, the social worker they have working there would be a fountain of information. If you go to https://hdsa.org, you will find a ton of resources for you and your family. I hope you find the assistance you need. Please reach out if you need help finding help. Take care.
We just wrote a letter to Sarah Jacobs who the Congress person in our district about this issue. Our problem goes beyond this as our daughter will not qualify for SSDI because she didn't earn enough quarters to qualify for SSDI. She only receives SSI (great full for this) but she will never qualify for Medicare unless this bill is passed. I have articles dating back to 2013 in reference to the bill not passing.
Kellie is only 47 years old. There are many resources that she doesn't qualify for either. Very sad. !
Thank you for sharing your struggles, Carol. It is so very sad, and I’m heartbroken for you and your family. Jill’s family has also been involved in trying to get things done for HD families in Washington for so many years. I tell her that some days it feels like nothing we do helps. Jill reminds me that, even when we are discouraged and tired, we are part of a community of people who are worth fighting for.
I am sorry to hear your daughter has had issues with getting assistance, but I hope this fuels you to continue to advocate for the HD community. If you would like to get involved in the fight, you can go to https://hdsa.org/advocacyhome/advocacy2/ to join the HDSA Advocacy Caucus. Take care.
After reading this, we are so lucky we live in Australia,
A law was passed several years ago where people with disabilities cannot be discriminated against.
Bill Shorten will be remembered for creating NDIA and NDIS.
That allows people to live a longer and more normal life with medical assistance, medical appointments with wonderful doctors without paying gaps and medical services and equipment to help you to stay in your horse with care provided.
All with a signature of your local doctor.
We are truly blessed we live in Australia.
In our state we only have about 400 reported HD cases, all who qualify for the best attention on offer.
We are glad you live in Australia too. All that sounds very humane and helpful for those who have HD who live there. If only American politicians can get inspired in the same way that your politicians have been.... Take care.