New health bill replaces hope with fear in cystic fibrosis patients
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As the Senate considers its proposal for healthcare reform, I urge lawmakers not to forget the millions of people who will rely on this legislation for lifesaving medicines and care. There is much more at stake with the Better Care Reconciliation Act than cost savings. Access to medicines and care that saves lives is vitally important.

As a doctor, I’ve seen firsthand the importance of adequate, affordable healthcare coverage for people living with a life-threatening illness and pre-existing condition. For over 30 years, I have cared for people with cystic fibrosis (CF), a progressive, fatal lung disease that requires hours of therapy and fistfuls of medicine each day. I’ve listened to a child’s chest and known they are losing their fight to breathe.

As president and CEO of the Cystic Fibrosis Foundation, I’m proud to say we have made amazing progress. In the 1950s, a diagnosis meant a child likely wouldn’t make it to kindergarten.

Today, many people with the disease are attending college, starting families, and planning for retirement. We have developed an NIH-recognized care model and suite of therapies that address both the chronic symptoms and, for some individuals, the basic genetic defect. People with CF have never had so many reasons to hope.

But the BCRA replaces that hope with fear. In many ways, people with CF are representative of millions of other people living with serious health conditions and for months, we have been hearing our community’s concerns about this legislation.

Cutting Medicaid and private health insurance subsidies and reinstating coverage caps means patients will have to go back to the days of choosing between healthcare or paying their rent. To give you just one example, we recently heard from a married couple that relies on Medicaid, as a supplement to their private insurance, to help pay for their 3-year old daughter’s CF treatments. Without this vital safety net, they would not be able to cover their medical expenses and still keep a roof over their heads.

The BCRA would allow states to waive the requirement to cover some essential health benefits such as prescription drugs and mental health, effectively segmenting the market into plans for healthy people and plans for sick people, and significantly driving up the cost of insurance for people with CF. This state waiver option has the potential to render current protections for people with pre-existing conditions meaningless.

Finally, our disease community, along with others like diabetes and cancer, would be severely impacted if insurance companies are permitted to impose annual and lifetime caps on the amount of services they will cover. This is currently prohibited under law, but Congress is considering removing this protection. A father of two daughters with CF told us that his children hit over $1 million a year in medical expenses. If coverage caps are reinstated, he would be on the hook for covering the majority of those costs.

Access to life-saving treatments and high-quality care is predicated on health insurance that provides adequate benefits at an affordable cost regardless of an individual's income, employment, health status, or geographic location.  The BCRA fails to meet this bar and instead sacrifices people’s health and security in an attempt to cut costs.


We can all agree that we must work to lower healthcare costs, but we ask Congress to take the time to do it right. Rolling back access to crucial healthcare coverage and life-saving therapies will not only jeopardize the physical and financial health of patients, but also risk increasing healthcare costs down the line. Healthcare reforms need to support high-quality care that has data proving it to be effective, along with transparency across the system so patients, clinicians, and healthcare administrators have the evidence they need to make important decisions.  

I urge the Senate to consider reforms that prioritize patient needs while also addressing unsustainable healthcare costs. I ask this on behalf of a community living with a rare disease. As a doctor, I ask on behalf of all vulnerable children and adults that are currently or will someday be patients or caregivers.

As a citizen, I ask on behalf of myself and the millions of others who are gravely concerned about the potential impact this legislation will have on our fellow citizens and state budgets. Please, don’t forget to put people at the heart of health reform.

Preston W. Campbell, III, M.D. is the president and chief executive officer of the Cystic Fibrosis Foundation.

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