Let the market decide drug prices. It saved my life.

After I was recognized with cystic fibrosis at age 4, taking a tablet to deal with my illness was unimaginable, nearly as unimaginable as me nonetheless being alive as we speak. 

I’m eternally grateful for the medical innovation that has made each these issues doable. Right now, youngsters recognized with CF are rising up in a special world than I did, one the place even a treatment is inside attain.

I’ve been given the reward of life. It’s my hope that extra rare-disease sufferers will have the ability to expertise that reward — and that lawmakers in Washington will assist them do it. 

Cystic fibrosis is a uncommon genetic dysfunction that causes a buildup of mucus within the lungs and different organs. Over time, the lung infections attributable to CF develop extra persistent, making it tougher to breathe.   

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Certainly, I had been hospitalized with lung infections at the very least 10 occasions by my thirty first birthday. As a result of I additionally was combating — and beating — non-Hodgkin’s lymphoma, I typically felt as if my entire life can be spent out and in of the hospital. 

That each one modified about two years in the past, when the FDA approved a new medication. It’s the primary that targets a mutated gene identified to trigger CF in almost 90% of sufferers. 

Since I started taking the drug, I haven’t been hospitalized as soon as. My well being is now not on the forefront of my thoughts. It’s been changed by my appreciation for all times, awe over watching my son develop up, and the idea that I’ll get to look at his kids develop up, too. 

I’m residing proof of the success of scientists and researchers who commit their lives to looking for remedies for debilitating sicknesses. After I was first recognized with CF, I used to be anticipated to dwell solely till eight years previous. After I surpassed these expectations, docs informed me I’d dwell till my 20s. Right now, at 35, I now not consider that CF will trigger my demise. 

I need extra sufferers to expertise the kind of life I’ve constructed.

Some insurers gained’t cowl costly medication just like the one I take, placing lifesaving remedies out of attain for a lot of sufferers. That’s why I’m glad lawmakers are working to make sure all sufferers have reasonably priced entry to the medication they want. 

However I worry they’re taking the incorrect method.

Whereas President Biden’s Construct Again Higher Act could also be stalled in Congress in the intervening time, lawmakers are nonetheless trying to compromise on a plan to decrease prescription drug costs by permitting Medicare to set costs on brand-name medicines. 

Whereas the intent behind this coverage is an effective one, I fear that it might make funding for life-science analysis a lot tougher to safe. This might curtail analysis and growth, thus dashing the hope of sufferers praying for medicines that don’t but exist. 

All sufferers deserve a second shot at life. Congress can, and will, work to decrease out-of-pocket drug prices, however lawmakers want to ensure their method is considerate sufficient to keep away from jeopardizing the analysis and funding that may flip uncommon illnesses into manageable, and even curable, situations.

I’m optimistic that our elected leaders will assist the innovation that results in remedies and cures. Doing so will enable a narrative like mine to return true for various sufferers with totally different uncommon illnesses. 

Sabrina Walker is a long-distance runner, most cancers survivor, and advocate for individuals with cystic fibrosis. She lives in Denver together with her husband and son.

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