September 22, 2025
Life insurance underwriters have long regarded cystic fibrosis (CF) as an uninsurable condition, but that won’t always be the case. There’s good news about this once-devastating childhood illness: advances in genetic research and targeted therapies are extending the health and lifespan of those who suffer from it. What used to be a disease with a median survival of just 11 years now sees patients living well into their 60s. And we anticipate even better results as treatments continue to improve.
From misdiagnosis to molecular precision
CF was historically misclassified as a digestive disorder, often confused with celiac disease. It wasn’t until the 1930s that Dr. Dorothy Anderson identified CF as a distinct condition. Along with later discoveries, her work led to the identification of the CF transmembrane conductance regulator (CFTR) gene in 1989, a breakthrough that paved the way for targeted therapies.
Therapeutic breakthroughs and expanding access
The first CFTR modulator, Kalydeco, was approved in 2012. Since then, successive therapies—Orkambi, Symdeko, Trikafta, and most recently Alyftrek—have expanded treatment eligibility to cover hundreds of CFTR mutations. These drugs have shifted the treatment paradigm from symptom management to correction of the faulty CFTR protein, with survival curves rising sharply since their introduction.
Underwriting considerations: what to watch for
CF remains a high-burden disease, but underwriting perspectives are evolving. Three key factors are critical in assessing risk.
- Lung function: Forced expiratory volume in one second (FEV1) is a strong predictor of mortality. Values above 70% indicate good lung health, while those below 40% suggest severe impairment.
- Nutritional status: Weight and BMI are essential indicators. Low weight may signify uncontrolled CF or suboptimal treatment, while good nutrition boosts immunity and decreases other risks, such as bone loss.
- Infection history: Frequent infections, especially with resistant bacteria like pseudomonas, signal higher risk. Antibiotic resistance is a growing concern due to repeated treatments.
Comorbidities (particularly diabetes, liver disease, and mental health challenges) further complicate the underwriting picture. These conditions often develop as CF progresses and must be factored into risk assessments.
EHR clues: what the data reveals
Electronic health records (EHRs) offer valuable insights into disease progression and treatment adherence.
- Treatment timing: Earlier initiation of CFTR modulators correlates with better outcomes. Delays in starting therapy often result in irreversible damage.
- Lung function trends: Longitudinal FEV1 data helps track disease progression. A stable or improving trend is favorable.
- Comorbidity load: EHRs reveal the accumulation of related conditions—diabetes, liver dysfunction, osteoporosis—that increase risk.
- Adherence patterns: Missed follow-ups and inconsistent outpatient care can lead to resistant infections and poorer outcomes.
These data points help underwriters distinguish between high-risk individuals and those who may be candidates for coverage in the future.
Looking ahead: the day will come when you can confidently underwrite cystic fibrosis
CF is not yet where HIV or hepatitis C are in terms of manageability or curability, but it’s on a promising trajectory. As more individuals begin treatment earlier in life, the disease burden will likely decrease, and underwriting decisions may shift accordingly. The future may hold a generation of CF patients who get early and effective therapy to live full lives with minimal complications.
Watch our webinar series, From uninsurable to opportunity: The evolving mortality of hepatitis C, HIV, and cystic fibrosis, to learn more.
Derek Cole, PharmD, is a senior clinical consultant at Milliman IntelliScript.
