The Most Challenging Part of Hidradenitis Suppurativa

Recently I was asked what is the most challenging part of living with a chronic illness. The challenges with hidradenitis suppurativa (HS) are aplenty, so I wrote a list: endless symptoms, finding treatment, people not knowing what HS is, advocating for myself, feeling alone, mental health, dealing with the staff at my doctor’s office… the list goes on.

But I think the greatest challenge I have faced with a chronic illness is insurance companies and accessing healthcare. People with chronic illnesses need constant access to health care. To have that, they need health insurance. But health insurance is not a guarantee.

Until I was 26, I was on my mom’s insurance plan, which was really good insurance. Even then, I faced issues. By this time, I was prescribed Humira, which was distributed through the insurance company’s special pharmacy. I encountered so many complications with the specialty pharmacy that I was awarded an exception to fill my prescription through another, more reliable pharmacy. I was frustrated then but now I know that is the tip of the iceberg when dealing with insurance.

What are my health insurance options?

After I turned 26, I opted into a marketplace healthcare plan at a reduced price based on my income. Figuring out health insurance options and if my health care would be covered made me want to pull my hair out. In the end, I picked an insurance plan that covered most, but not all, of my doctors. My plan did not cover the dermatologist I had been seeing for 9 years. As a result, I suddenly had to pay out of pocket for HS treatment.

After I was on Humira for 7 years, my dermatologist and I decided to try another biologic, Remicade, instead. Remicade must be administered intravenously. Initially, my insurance company denied coverage. I now know that this is pretty typical but at the time, this decision was crushing. I was hopeful that this new treatment could help. Here was a treatment doctors think might treat my serious chronic illness but an insurance company decided that it was not necessary.

My insurance denied my treatment

Insurance has denied me Remicade treatment three separate times since then. Every time I change health insurance the company has to approve the coverage, usually meaning an initial denial. One of these times, I was not able to have a Remicade infusion for 5 months. This is when I learned that taking a break from a biologic like Remicade can ruin the efficacy of the treatment. Because of the insurance company’s decision, a treatment for a disease that is difficult to treat was no longer effective. My physician placed me on another medication that allowed the Remicade to work again. If my insurance company had approved the medication in the first place, I would not have had to add on another serious medication for my HS treatment.

My fear of losing health care

The fear of losing access to health care never goes away. Managing health care is an endless challenge. The gatekeeper to health care is the health insurance company. Relying on their decisions is one major challenge but losing health insurance is a common obstacle too. Even with health insurance, many people face large medical bills.

Losing health insurance and/or going into medical debt can happen to anyone for many reasons - losing your job, being in an accident, change in federal or state law, surgery, worsening symptoms, moving, etc. I am constantly afraid I will lose health insurance when I need it. This fear is the biggest challenge of chronic illness.