Navigating a system that keeps making us prove disability with CF, part 1

First in a series.

There is no cure for cystic fibrosis (CF).

This is not a controversial statement. It is not debated in the medical literature or disputed in transplant centers. Everyone in this community knows it in their bones. I say that literally, as CF-related bone disease reminds many of us, including myself.

CF is progressive and affects many organs and systems in the body. The treatments available now are extraordinary and life-extending, but they are not a reversal or a cure. Many with CF cannot sustain employment and qualify for Social Security disability benefits.

And yet, the Social Security Administration (SSA) will periodically look at someone living with CF who has already been approved for disability benefits after a double-lung transplant, and now must take a cocktail of immunosuppressants that slowly taxes their kidneys, and ask: Have you gotten better?

The continuing disability review process requires beneficiaries to periodically demonstrate they remain disabled. For many conditions, this makes sense, as some injuries heal, and some illnesses can go into remission. Our federal system assumes that disability can be temporary and that people move in and out of qualifying status over time.

But CF does not work that way.

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CF is a genetic disease. It doesn’t resolve, and it doesn’t improve with rest or rehabilitation. The CFTR gene mutation we were born with is present in every cell of our body for life. Yes, modulators like Trikafta (elexacaftor/tezacaftor/ivacaftor) have been genuinely and meaningfully transformative for many in our community, but transformation is not the same as elimination. For those who have reached transplant evaluation or, like me, already received new lungs, we are, by medical definition, at this disease’s most severe progression.

The critical question the SSA framework fails to ask is this: Once someone with CF qualifies for disability benefits due to decline, what is the realistic path forward?

The honest and sad answer is that our health does not trend upward. We are not people who qualify for disability during a bad season and then return to sustainable employment once the season passes. We are people managing a lifelong, worsening condition who have simply reached the threshold where that reality is undeniable on paper.

Forcing ongoing reviews does not protect the system’s integrity. It only exhausts already fatigued people and creates needless documentation burdens on already stretched CF care teams. Ongoing reviews also fuel anxiety in a community already living with medical uncertainty.

The process starts with the dread of a disability review letter. Next comes scrambling to gather records and the fear that a stable lab value may be misinterpreted as improvement by someone unfamiliar with our disease. For those whose health has declined since their last review, proving it can feel like an insult on top of a loss.

Congress has the authority to designate conditions as permanently disabling. Certain cancers, ALS, and other conditions already get this consideration. The argument for including CF, especially at the transplant-listing or post-transplant stage, is not just compassionate — it is medically logical.

We are a community of incredibly strong people, but the cold, hard truth is that this disease is relentless. We deserve a governing system that acknowledges this truth.

We also deserve others to help us fight for this.

The CF community carries an extraordinary burden. We manage medications, fight for insurance coverage and benefits, monitor organ function, prepare for or recover from transplant, and simply try to live.

The work of changing this system should not fall on the shoulders of the people most depleted by it. That work belongs to the CF Foundation and patient advocacy organizations with legislative reach, and most urgently, to the local, state, and federal lawmakers who have the actual power to act.

If you are a legislator or know someone who is, I urge you to act: Review the data on CF, consult with CF specialists, and enact legislation that provides formal permanent disability status for CF at the federal level.

Our community urges you to address this gap so that the most severely affected no longer have to repeatedly demonstrate their lifelong disability. Please share and support a permanent disability designation for CF.

We’ve spent a lifetime fighting to breathe. Isn’t that enough?

Next week, I will touch on one of the most vital points regarding navigating Social Security Disability Insurance with CF.

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.