Navigating a system that keeps making us prove disability with CF, part 2

Last in a series. Read part one.

Last week, I asked why those with cystic fibrosis (CF), a progressive and incurable genetic disease, must keep proving disability after already qualifying. This is especially frustrating after reaching an advanced disease stage and undergoing a life-extending double-lung transplant, as I have.

Now, let’s talk about reviews. Having the right ally is crucial, though many realize this too late.

The Social Security Administration (SSA) does not understand CF the way our community does. This failure to grasp our everyday reality can directly threaten our benefits and well-being, with someone unfamiliar with our disease deciding our fate.

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CF is often an invisible disease. Most of us with CF, even after a double-lung transplant, may appear healthy and experience moments of feeling better. Still, we know that appearance does not reflect the reality of living with CF. There is a drastic difference between looking well and being well.

The SSA’s evaluation process can fail to capture what isn’t visible. This exposes us to serious legal risks. For example, our benefits could be terminated if crucial medical vulnerabilities are not properly documented and understood during reviews. These include immunosuppression, risk of rejection, unpredictable infections, compromised pulmonary function, and CF-related comorbidities.

After a lung transplant, the median survival is about six years. Many side effects and complications can arise from the time-sensitive medications required to prevent rejection. Being post-transplant, we have bought time at high physical, emotional, and pharmaceutical costs. That distinction must be made clear in your SSA record, but most general disability attorneys cannot convey it effectively.

CFTR modulators like Trikafta (elexacaftor/tezacaftor/ivacaftor) have changed many lives. However, they have also created new challenges for SSA reviews. If your lung function improves on a modulator, an examiner who lacks CF-specific knowledge may believe you are no longer disabled.

What they often won’t understand, unless someone tells them, is that modulators address the underlying protein dysfunction, but they do not eliminate the accumulated structural lung damage, chronic infections, gastrointestinal complications, or CF-related diabetes. These therapies do not remove the reality of complex daily treatment burdens, which can be significant functional limitations. Documenting this in precise language is crucial, a nuance that generalist attorneys often miss.

For those on Medicare or Medicaid through SSA disability, losing coverage is a legal risk and can be life-threatening. Our medications — modulators, anti-rejection drugs, enzymes, and inhaled antibiotics — cost tens of thousands of dollars monthly without coverage. A failed review, improper documentation, or a missed deadline can result in a loss of coverage. When coverage is lost, access to life-sustaining medications is lost as well.

Specialized legal representation is critical. An attorney with true CF knowledge can frame your SSA application using the right language to convey your limitations, test results, and daily functional reality. This includes the physical and mental toll of treatments, exacerbation recovery, and daily disease management. A CF-specialized attorney knows how to make these “invisible” limitations understood.

If you are applying for disability, I highly encourage you to reach out to others who have been through the process and ask for referrals to CF-experienced attorneys. For an ongoing disability review, do not respond on your own. Instead, immediately seek help from a lawyer knowledgeable about CF. Only such specialized lawyers can effectively advocate for our needs.

With CF, once we qualify for disability, I do not understand why we must keep proving our disability status. But for now, it is what we have to do.

To protect your livelihood, access to care, and life itself, secure legal representation with proven CF expertise to help you maintain the benefits you have earned. We have already fought too hard to lose ground to paperwork.

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.