E. Dalton Powell is a marketing assistant at Ohio Sickle Cell and Health Association.
I had to decide if leaving my grandfather’s funeral early was necessary after the “normal” everyday pain in my arm had expanded to my chest.
That's what living with a chronic disease means: learning how to manage uncertainty.
At the time, it was an easy choice to ignore the pain for a while longer in hopes that I didn’t burden my family further – in hopes that it wouldn’t be another hospital bill.
At the time, I was unaware that I had multiple blood clots in both of my lungs.
Consistent access to treatment helps lessen these types of health crises.
Here in Ohio, six in ten adults live with at least one chronic condition.
As someone living with sickle cell disease,
I am closely watching a proposal moving through Washington that could make it harder for patients to access the medicines they rely on and could slow the development of new treatments for patients like me.
Sickle cell is a genetic disorder that damages red blood cells and causes severe complications throughout the body. It's the most common genetic blood disorder in the U.S. Sickle cell is only one of many conditions that require innovative and preventative care in order to stay one step ahead.
That is why policies that could disrupt treatment plans and access, such as the Most Favored Nation pricing proposal, deserve careful scrutiny.
Deciding what American lives are worth
While lawmakers are right to look for ways to lower prescription drug costs, Most Favored Nation would do so by tying U.S. prices to those set by foreign governments – systems that often rely on centralized decision–making and often leave patients with chronic illnesses facing delays or unable to access the treatments they need altogether.
In countries such as the United Kingdom and Canada, government health systems often use a formula called the Quality-Adjusted Life Year, or QALY, to decide whether treatments are worth covering.
The formula places the highest value on a year lived in “perfect health” and assigns less value to years lived with chronic illness or disability. If the government decides a treatment does not provide enough value for the price, patients may face delays or lose access altogether, even when the medicine improves or stabilizes their condition.
This limits patients’ access to treatments, not because the treatments are ineffective, but because a formula determines they are not “worth” the cost.
When U.S. prices are tied to systems that rely on QALYs, America is effectively letting other countries decide which American lives are worth living.
Congress has already recognized the problem and explicitly barred QALYs in certain federal health programs because of concerns about discrimination against older adults, people with disabilities and those living with chronic illness. Most Favored Nation risks undermining that safeguard.
Progress shouldn't stop
Sickle cell is a lifelong disease. A single pain crisis can and has escalated complications that have permanently damaged my bones, lungs, eyes and brain.
Countries that rely on QALY-based pricing routinely delay coverage of new treatments by years, if they approve them at all.
Most Favored Nation would move the United States closer to this model.
My grandfather’s funeral was almost 10 years ago, but I can still remember my aunt introducing me to her church friends as “the sick one that we’re always praying for.”
The past decade has brought real progress for the sickle cell disease community, like gene therapy and new medications that offer hope for better disease management.
A pricing system that consistently undervalues treatments for patients with chronic diseases risks making it harder to bring future innovations to patients who still urgently need them and could limit the choices patients, and their doctors, have to manage this disease.
E. Dalton Powell is a marketing assistant at Ohio Sickle Cell and Health Association.
This article originally appeared on The Columbus Dispatch: I'm the sick one the church prays for. Drug pricing change would be devastating | Opinion
