The Importance of Financial Planning for Huntington’s Families

A social worker shares advice on easing the financial burden of the disease

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by Carlos Briceño |

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Second in a series. Read part one.

As my wife, Jill, experiences Huntington’s disease (HD) progression, we must prepare for all aspects of her care. Recently, she wanted to start thinking about our financial future. She knows that HD can be a financial burden, as the rare disease runs in her father’s side of the family, so she started researching what to do and where to begin.

Jill soon felt overwhelmed. The great thing about the internet is that a lot of information is out there. The bad thing about the internet is that a lot of information is out there. She needed help.

Before we get to the advice we received from licensed clinical social worker Lisa Mooney, whom you met in part one of this series on “future planning,” here is a little of Jill’s backstory.

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After her father, Ken, was diagnosed with HD, Jill knew she and our daughter, Alexus, had a chance of inheriting the gene mutation that causes the disease. Jill wasn’t worried about the “what ifs” until her dad passed away in 2011 after a long battle with this diabolical disease.

After his death, Jill’s mother, Edwina, shared with us how difficult it is to care for someone with HD — especially financially.

Jill’s family can be considered middle class. Her parents were social workers who dedicated their lives to helping children and their families. They taught their children to work hard and be good people.

After Ken started exhibiting early symptoms of HD, he was let go from his job. Edwina needed to keep working because she knew how important medical insurance was for someone with a terminal illness. Although her husband was able to collect disability, she needed to keep their insurance for two more years, when Ken would qualify for Medicare.

To pay all of the mounting medical bills, Ken and Edwina decided to sell the family home. Jill wishes her parents didn’t have to go through all of that, but it taught her the importance of planning financially for a long battle with HD.

Important questions

That’s why we emailed Lisa Mooney for advice. She works in the Department of Neurology at the University of California, Davis, a Huntington’s Disease Society of America Center of Excellence, and has helped other HD families navigate the future.

For those who are at risk for HD, but haven’t yet undergone genetic testing, Lisa recommended looking into securing life insurance, long-term care, disability, and accidental death insurance, and other supplemental insurances that may help in the future.

For those like Jill who have been diagnosed as gene-positive for HD, Lisa said: “Future planning, depending on your specific situation, may be looking at disability or retirement options and exploring support resources — do you have family and friends around that can help with transportation, scheduling appointments if you can’t, etc.? What information do you need to submit when applying for disability or retirement or accessing money early from investment accounts?”

These questions need to be asked now in order to plan for the future.

Jill is still overwhelmed by the prospect of future planning, but receiving advice helps us to focus. In the meantime, Jill said she will follow Lisa’s advice to “make a plan of all the things you want to discuss and then carve out time every so often to get it completed.”

I also agree with Lisa’s reminder that “this process is anxiety-provoking and uncomfortable, but it’s important to remind yourself that it will be helpful in the future for you and your loved ones. … If you sit down and start talking, and you get too anxious or too overwhelmed, you can 100% take a break and revisit later.”

Little steps. That is what can make this complicated but necessary process happen over time. And lots of hugs.

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.


DE avatar


Thank you so much Carlos. I need to start planning as I am gene positive, myself. Never too soon to begin to plan..

Carlos Briceño avatar

Carlos Briceño

Thank you for sharing! Future planning is so important for all of us. I hope the information we shared help in some small way.


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