Navigating the high costs that come with Huntington’s disease

Life with Huntington’s disease is filled with challenges — some visible, some hidden. While the physical and emotional toll often takes center stage, there’s another weight that many in our community carry quietly: the financial burden.

From navigating complex insurance policies to managing rising out-of-pocket expenses, the cost of care can feel overwhelming. For those of us living with Huntington’s, it’s not just about fighting a disease, but also fighting to stay afloat in a healthcare system that wasn’t built with us in mind.

When I was diagnosed, I had no idea how deeply Huntington’s would impact my finances. I quickly learned that insurance — something I had always viewed as a safety net — can be both a lifeline and a labyrinth. Understanding what is covered, what is denied, and what falls into the frustrating gray area became a full-time job. Specialists, neurologists, mental healthcare providers, and physical therapists were all crucial to my care. Yet not all of them were within network, and many of the services I needed came with high copays or weren’t covered at all.

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Then there are the medications. There isn’t a cure for Huntington’s; treatment is geared toward managing symptoms, improving quality of life, and maintaining dignity. But the price tags on some of these medications are staggering.

Even with insurance, I’ve spent hours on the phone with pharmacy benefit managers and insurance representatives, appealing coverage denials or trying to enroll in patient assistance programs that often come with strict eligibility requirements. The paperwork alone can be exhausting, and when you’re already managing the cognitive and physical challenges of Huntington’s, it can feel insurmountable.

Transportation to appointments, home modifications, assistive devices, and even dietary needs can also add up quickly. Some of us must stop working due to symptoms, losing not only a paycheck but often employer-sponsored insurance and income stability. I remember the moment I realized that I could no longer count on my financial security — something I had worked hard to build. It felt like the ground had shifted beneath me.

Navigating the Social Security Disability Insurance process was another eye-opening experience. It’s a necessary step for many in the Huntington’s community, but the road is long and filled with obstacles. The application process is complex, and initial denials are common. I had to advocate fiercely for myself, gathering medical records, letters from providers, and detailed documentation of my symptoms and limitations. And even after approval, the waiting period for benefits to begin created a gap that no one had prepared me for.

It’s OK to seek financial help

On this journey, I’ve learned that seeking out financial resources isn’t a sign of weakness, but a form of resilience. I’ve connected with nonprofit organizations that offer grants for medications, travel stipends, or caregiver relief. I’ve leaned on support groups where others shared tips on navigating Medicare, disability law, and state-based programs that can offer some relief. It was through these conversations that I realized I wasn’t alone. And that’s perhaps one of the most important truths we can hold on to: No one should have to face this alone.

If you are walking this path, know that you deserve support — not just medically or emotionally, but financially, too. It’s OK to ask for help. It’s OK to take a breath when the insurance letters pile up or when the cost of a new medication threatens to derail your budget. Advocacy is part of survival with Huntington’s, and financial advocacy is a form of self-care. Whether it’s appealing a denial, calling your elected officials to support rare disease legislation, or simply reaching out to a social worker or financial navigator at your medical center, these steps matter. They make a difference.

I also believe that sharing our stories is a powerful form of advocacy. When we talk about the financial burden of Huntington’s disease, we shed light on an issue that often remains in the shadows. We open the door for better policies, more inclusive insurance coverage, and a healthcare system that truly considers the unique challenges faced by people living with neurodegenerative conditions. Our voices and lived experiences can help shift the system toward justice and compassion.

I don’t have all the answers, but I do know this: Your life is worth investing in. Your peace of mind is worth fighting for. And even in a world that often reduces people to policy numbers and billing codes, you are not invisible. You are not alone. And together, we can keep pushing forward, not just for ourselves, but for the entire Huntington’s community.

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.