Minnesota Legislature and health care: Don't forget rare-disease patients

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As someone being treated for a rare disease in Minnesota, I am experienced with prescription drug costs. Living with cystic fibrosis for decades now, its related pain, treatments and challenges, I can appreciate the need to lower costs for medications. The question is, what is the best way to do that?

Recently, some drug companies announced lowering insulin costs and the federal government is pushing for price reductions on more medications. Many states are finally passing laws to prevent insurers and pharmacy benefit managers from dramatically inflating prescription prices behind the scenes before they ever get to consumers. All these seem like good ideas.

But there is one idea emerging nationwide and in the Minnesota Legislature that is causing me and others to say, "Hold on." HF 17/SF 168 would create a Prescription Drug Affordability Board (PDAB). PDABs may initially sound OK, but other states are already banning them as PDAB policies often treat the sick and those with rare diseases poorly.

PDABs are staffed with citizen experts who, with little knowledge, will be able to cap and dictate the price of drugs based on certain algorithms that turn patient health into numbers. PDABs offer a one-size-fits-all approach. They especially leave those of us with rare diseases who need specialty medications (typically higher priced) without a voice or a choice.

PDABs do this by using a complex health/life algorithm known as "quality-adjusted life year/incremental cost-effectiveness ratio" (QALY/ICER) that discriminates against those who are extremely sick and/or have a rare disease, leaving them forced to pay even higher costs. Unfair, heartbreaking and far from patient-friendly, PDABs have the potential to turn the sick and those with rare diseases into casualties of a bad policy. The good news is that this can be fixed.

Patient protections need to be added to this legislation. I would suggest the following:

• Ban the PDAB from using any QALY/ICER systems that measure disease burden related to the quality and quantity of life lived and/or assess that value based on medical interventions.

• Ensure rare-disease patients have access to the latest breakthrough medications and therapies so insurers will cover them.

• Exempt rare-disease patients from an upper payment limit that would prevent them from getting medications they need, forcing them onto a potentially cost-saving drug that may or may not treat their condition and may actually make them sicker.

These requests are not insurmountable but reflect a respectful way for Minnesota to refuse to discriminate against the most vulnerable. Failing to do anything will severely restrict access and potentially put some rare-disease patients, already on fixed incomes, in an even more precarious situation.

As a patient, I cannot tell you how many times I have had to adjust my lifestyle and medications to get just that right balance to make it all work. If protections are not put in place in the creation of a PDAB, we will be unfairly excluded and denied accessibility through even higher costs putting our health at risk. I am hopeful legislators on both sides of the aisle can come together and make this work for those with rare diseases in Minnesota.

Medora Frei, of St. Paul, is a cystic fibrosis patient who receives ongoing treatment at the University of Minnesota.