We shouldn’t have to fight so hard for healthcare coverage

Universal Health Coverage Day on Dec. 12 is a timely reminder of the critical importance of access to healthcare for everyone across the globe. The theme is “Unaffordable health costs? We’re sick of it!”

This awareness day encourages world leaders to invest financially in protecting people’s health. The goal is to achieve universal healthcare coverage by 2030.

With this in mind, I’d like to share something that blindsided me when I needed help the most. I think it’s something that everyone with cystic fibrosis (CF) needs to know about.

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For many years, I worked despite having CF. I had insurance from my employer, followed my treatment plan, and made a significant effort to keep my FEV1 — the amount of air a person can forcefully exhale in the first second of a deep breath — stable enough to get through the day. However, when I was in my mid-40s, my lungs began to fail. My numbers dropped, conversations about having a lung transplant began, and staying employed became impossible. With the help of the Cystic Fibrosis Foundation’s Compass hotline for assistance programs, I was approved for Social Security Disability Insurance (SSDI). I thought the hard part was over.

I was wrong.

I was blindsided when I found out there is a two-year waiting period before Medicare kicks in for SSDI recipients. It’s a bitter irony: We’re sick enough to be declared disabled, but apparently not enough to deserve immediate access to Medicare coverage. Meanwhile, the costs of maintaining our health during those 24 months can be devastating, especially when we’re already struggling because of lost income.

An exception to this rule is made for people with ALS or end-stage renal disease, but not CF. In my opinion, people with CF should be included in this exception and not have to wait two years. U.S. lawmakers should pass legislation to make this happen.

With CF, when we qualify for SSDI, our lung function is already severely compromised. We’re receiving recurrent intravenous therapies and other medications, and are constantly in and out of the hospital. We see our CF healthcare teams frequently, and might also be undergoing evaluations for a transplant. Our medical costs are astronomical, and we need continuous care to stay alive.

During those two years of waiting, I had to pay COBRA premiums for both myself and my dependent daughter. It was financially crushing, and I drained my savings at the same time my employment income disappeared. Many CF patients face impossible choices during this gap: Pay for COBRA, try to find affordable marketplace coverage, go without healthcare insurance, or hope to qualify for state Medicaid if you’re lucky enough to live somewhere that offers expanded coverage.

CF is a progressive, expensive, and life-threatening disease. Our community deserves better than to be forced into financial ruin at the moment we’re fighting our hardest to survive.

If you’re facing a similar situation, please know that help exists. The CF Foundation’s Compass program offers free assistance with navigating insurance gaps, appeals, and coverage options. You can reach them by calling 1-844-COMPASS (266-7277) or emailing [email protected] to explore pharmaceutical assistance programs, hospital financial aid, and other options in your state.

You can also share your story and connect with others who’ve faced this gap. Awareness about the issue isn’t enough, though. We need a policy change. I encourage you to contact your congressional representatives to urge them to add CF to the Medicare exception list.

Universal Health Coverage Day serves as a timely reminder that healthcare access shouldn’t depend on luck or the disease one happens to have. We’ve already fought so hard to stay alive with CF. We shouldn’t have to fight our own healthcare system during a two-year gap we can’t afford. It’s time for CF to receive the same exception that other severe conditions have.

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.