When I was diagnosed with cystic fibrosis at age 4, taking a pill to treat my disease was unimaginable, almost as unimaginable as me still being alive today.
I’m eternally grateful for the medical innovation that has made both those things possible. Today, kids diagnosed with CF are growing up in a different world than I did, one where even a cure is within reach.
I’ve been given the gift of life. It’s my hope that more rare-disease patients will be able to experience that gift — and that lawmakers in Washington will help them do it.
Cystic fibrosis is a rare genetic disorder that causes a buildup of mucus in the lungs and other organs. Over time, the lung infections caused by CF grow more persistent, making it harder to breathe.
Indeed, I had been hospitalized with lung infections at least 10 times by my 31st birthday. Because I also was fighting — and beating — non-Hodgkin’s lymphoma, I sometimes felt as if my whole life would be spent in and out of the hospital.
That all changed about two years ago, when the FDA approved a new medication. It’s the first that targets a mutated gene known to cause CF in nearly 90% of patients.
Since I began taking the drug, I haven’t been hospitalized once. My health is no longer at the forefront of my mind. It’s been replaced by my appreciation for life, awe over watching my son grow up, and the belief that I’ll get to watch his children grow up, too.
I’m living proof of the success of scientists and researchers who devote their lives to searching for treatments for debilitating illnesses. When I was first diagnosed with CF, I was expected to live only until eight years old. When I surpassed those expectations, doctors told me I would live until my 20s. Today, at 35, I no longer believe that CF will cause my demise.
I want more patients to experience the type of life I’ve built.
Some insurers won’t cover expensive drugs like the one I take, putting lifesaving treatments out of reach for many patients. That’s why I’m glad lawmakers are working to ensure all patients have affordable access to the drugs they need.
But I fear they’re taking the wrong approach.
While President Biden’s Build Back Better Act may be stalled in Congress at the moment, lawmakers are still attempting to compromise on a plan to lower prescription drug prices by allowing Medicare to set prices on brand-name medicines.
While the intent behind this policy is a good one, I worry that it could make funding for life-science research much harder to secure. This could curtail research and development, thus dashing the hope of patients praying for medicines that don’t yet exist.
All patients deserve a second shot at life. Congress can, and should, work to lower out-of-pocket drug costs, but lawmakers need to make sure their approach is thoughtful enough to avoid jeopardizing the research and investment that can turn rare diseases into manageable, or even curable, conditions.
I’m optimistic that our elected leaders will support the innovation that leads to treatments and cures. Doing so will allow a story like mine to come true for different patients with different rare diseases.
Sabrina Walker is a long-distance runner, cancer survivor, and advocate for people with cystic fibrosis. She lives in Denver with her husband and son.
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