For families with Huntington’s, every vote in Congress matters

My wife, Jill, who is gene-positive with Huntington’s disease (HD), has always believed that if something matters to you, you should pay attention to the people in charge of it.

Lately, that has meant watching U.S. lawmakers much more closely. As someone living with a rare disease, she sees every healthcare decision through a painfully personal lens. So when she hears stories about members of Congress not showing up for votes for months at a time, or one who disappears from public view while still collecting a paycheck and benefits, it hits differently. In contrast, families who belong to the HD community show up to manage a disease that never takes a day off.

What frustrates Jill even more is knowing how much elected officials can gain from holding office. Many receive generous health insurance coverage, staff support, and access to excellent medical care. They do not have to fight through prior authorizations alone or worry that one long hospital stay will destroy their finances.

For people with Huntington’s disease, those worries are daily companions, and the contrast feels sharp.

Recommended Reading

Jan. 9, 2023 Columns by Carlos Briceño

Failure to Pass the HD Parity Act Angers My Gene-positive Wife

Keeping tabs

Instead of just venting, Jill decided to focus on what she can control. She has started keeping tabs on what our representatives from Maryland are actually doing. She looks up their committee assignments, tracks how often they vote, and reads short summaries of the bills they support or oppose. She isn’t doing this because she loves politics. She is doing it because every “yea” or “nay” can ripple into disability benefits, research funding, insurance protections, and the healthcare safety net that people with HD rely on.

She keeps a simple notebook and a few bookmarked sites. After big votes, she checks how our representatives voted. If they support something that strengthens healthcare access, disability rights, or funding for medical research, she notes it. If they back measures that could weaken protections or cut crucial programs, she writes that down, too.

It is her way of replacing the vague feeling that “Washington is broken” with concrete information about what the people elected to speak for us are actually doing with the salary and health coverage they receive.

From there, Jill takes the next step: She writes to them.

Sometimes her messages are critical. If a representative supports legislation that might make it harder for people with preexisting conditions to get coverage, she tells them what that would mean for someone with Huntington’s disease. Cuts and delays do not show up as talking points in our house. They show up as missed appointments, skipped medications, and terrifying questions about what happens when the supports we count on fall away.

Other times, her messages are requests for help or a simple “thank you.” She writes about the need for more HD research funding, better support for caregivers, and policies that acknowledge the realities of progressive neurological diseases. When a representative votes for something that protects healthcare access or invests in medical research, she lets them know that someone noticed. It is her way of reminding them that doing the right thing matters to the people back home.

Jill is realistic. She knows one letter or email will not transform federal policy. But showing up in their inboxes is a way of reclaiming a little power in a system that often makes patients feel invisible. It is her way of saying, “You may not always see us, but we are here, and your choices affect our lives far more than your own benefits ever will.”

Watching her do this reminds me that citizenship does not stop when illness begins. People with Huntington’s disease cannot afford to assume that “someone else” will pay attention to what lawmakers are doing with the privileges of office. When members of Congress coast on the protections their positions provide, the impact is not abstract. It shows up in research budgets, waitlists, and the strength or weakness of the programs families like ours depend on.

Jill cannot control who runs for office or how seriously each person takes the job once they have the title, the salary, and the insurance card. What she can control is how informed she is and how often she speaks up. Keeping tabs on our Maryland delegation and writing when it matters has become part of how she copes with the uncertainty of HD.

The disease may limit her mind and body over time, but it has not taken away her voice.

In a world where some leaders can vanish from the job while keeping the benefits that come with it, Jill’s quiet, persistent engagement feels like its own form of accountability. It is a reminder that while Huntington’s disease may shape our days, it does not get to decide whether we participate in the decisions that shape our future.

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.