by Bryce Murray
Insurance benefit design may sound like a boring technical phrase, but it is actually one of the most important parts of health care access. A person can have insurance and still not be able to afford their care, depending on how their insurance is designed. This is especially true for people living with cystic fibrosis (CF), who need daily medications, specialist visits, breathing treatments, and sometimes hospital care. For the CF community, benefit design is not just about numbers on a plan document. It can determine whether a patient gets treatment on time or has to fight through costs, denials, and confusing insurance rules first. Insurance companies, employers, pharmacy benefit managers, and policymakers all make decisions about premiums, deductibles, copays, coinsurance, formularies, and prior authorization. Patients are left to deal with the results. In my opinion, a fair insurance benefit design should do three things: make costs understandable, make high-value treatment affordable, and stop using policies that punish people for needing expensive but necessary care.
The first issue is that insurance can be confusing even before someone uses it. HealthCare.gov defines an out-of-pocket maximum as “the most you’ll spend for covered services in a year. After you reach this amount… the insurance company pays 100% for covered services.” That sounds simple, but in real life, people still have to understand what counts toward that limit and what does not. Deductibles, copays, and coinsurance for in-network services count. Monthly premiums do not. Out-of-network care may not count. Some assistance may not count either. For a person with CF, misunderstanding one detail can mean thousands of dollars. This is why transparency should be treated like a patient access issue, not just a paperwork issue. The cost burden is also considerable. According to KFF’s 2025 Employer Health Benefits Survey, “The average deductible amount in 2025 for workers with single coverage and a general annual deductible is $1,886, similar to last year”. The same report says that “Thirty-four percent of covered workers in 2025 are in a plan with a general annual deductible of $2,000 or more for single coverage.” For a person without a chronic illness, a deductible might feel like an annoying possibility. For someone with CF, it can become a yearly barrier that appears immediately because they already know they will need care. It is hard to call a plan affordable if patients cannot afford to use it.
One of the clearest examples of harmful benefit design is the use of copay accumulators. Copay assistance from nonprofit organizations and drug manufacturers may help to offset the out-of-pocket (OOP) cost of medicines, but accumulator programs don’t allow this assistance to count towards a patient’s OOP maximum. This is frustrating because assistance is supposed to make care more accessible, but accumulator plans can burden families living with CF. If the patient still has to meet the deductible later, the plan is basically shifting costs back to the sick person. This is why policymakers should ban or limit copay accumulator and maximizer programs, especially when there is no generic alternative available. CF treatments are not optional. Many are not easily replaceable, like CFTR modulators. When a therapy is that important, benefit design should support access instead of creating extra obstacles.
Another major issue is prior authorization. Insurance companies often argue that prior authorization helps control unnecessary spending, and I understand that the health care system cannot just approve everything without review. Still, there has to be balance. Prior authorizations can be time-consuming and delay care, which matters because CF is progressive. A delay of even a few days may not look serious to an insurance plan, but it can feel serious to a patient who depends on consistent treatment to stay stable. A better approach would be to reduce repeat prior authorizations for long-term medications that a patient has already been using successfully. In a statement supporting prior authorization reform in Illinois, The CF Foundation explains that “utilization management cannot come at the expense of delays in patient access to needed care” . I think this sentence is the center of the issue. Utilization management may have a purpose, but it should not become a wall between patients and the treatments their doctors already know they need.
One possible solution is value-based insurance design. The National Pharmaceutical Council explains, “Value-based insurance design (VBID), sometimes referred to as value-based benefit design, is rooted in a simple concept: the more clinically beneficial a therapy is for a patient, the lower the patient’s cost share should be.” This makes sense. If a medication keeps a person healthier, prevents hospitalizations, and helps them live a fuller life, the insurance plan should make that medication easier to access. High-value care should not be placed behind the highest cost-sharing tier just because it is expensive upfront. This does not mean insurance companies should ignore costs. Health care is expensive, and no policy can pretend cost does not matter. However, benefit design should look at long-term value instead of only short-term savings. If a patient skips medication because the copay is too high, that can lead to worse health and higher costs later. If a patient cannot understand their plan, they may delay care. If a patient has to fight repeated prior authorizations, that takes time away from school, work, family, and basic life. The system may save money in one place while creating harm somewhere else.
In conclusion, insurance benefit design needs to be more patient-centered, especially for people with chronic diseases like cystic fibrosis. A good policy should require clearer plan information, count copay assistance toward deductibles and out-of-pocket maximums, reduce unnecessary prior authorization, and lower cost-sharing for high-value treatments. Having insurance should mean more than having a card in your wallet. It should mean that when a patient needs care, the design of their benefits helps them get it instead of making them prove over and over again that they deserve it.
About Bryce: I’m from Ardmore, PA, and currently attend Seton Hill University, where I’m a first-year student-athlete majoring in Psychology with a minor in Behavioral Health and Chemistry. I’m passionate about healthcare, mental health, and understanding how to better support individuals and their families. I plan to pursue a career in psychiatry.
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