Promised patient savings from state Rx board unlikely | PODIUM | Opinion

The Colorado Prescription Drug Affordability Board (PDAB) launched — allegedly — to save patients money on their medications, is creating rules and procedures that not only are unlikely to create real savings but will put Colorado patients through increased bureaucratic hurdles.

This issue is literally a life and death one for me. As a patient who needs a $3,000-per-month infusion to live, the creation of the PDAB was exciting news. I was eager to get involved and ensure the board heard from patients like me. Over a year into the process, I’m now infuriated by the lack of support for actual Colorado patients.

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The focus of PDAB has shifted from saving families money to “saving on insurance premiums,” which most likely won’t materialize in any significant way. In an additional slap in the face, the Division of Insurance doubled down on its illegal use of quality adjusted life year (QALY) data deemed discriminatory toward the disabled, chronically ill and the elderly in May by the federal government.

QALYs favor the healthy and place a lower value on the lives of medically involved patients and families. This means care becomes about cost rather than quality of life.

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Even after bringing the details of the ruling to the attention of the Division of Insurance staff, they doubled down on their use of QALYs and refused to remove them from the process. If QALYs aren’t removed from the equation entirely, the PDAB process is discriminating against the very people the policy was supposed to help.

The justification to keep using the QALY data was, of course, funding. During recent office hours, when asked why they needed to continue using the discriminatory data, we were told there isn’t funding to access better data sets.

There is also significant concern about a major change to the determination process.

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“To the extent the data is available, the Board may consider the impact of the drug’s price on insurance premiums and out-of-pocket costs, the impacts of formulary placement on access, and the extent to which rebates are shared with patients purchasing the drug,” the rule states.

After realizing the highly pumped upper-payment limits (UPL) most likely won’t result in direct patient savings, the board shifted its focus to saving money on premiums. Insurance companies must show where they saved Coloradans money, but the requirement is so vague it is easily shirked. All an insurance company has to say is, “we could have raised your premiums by $50, but we only raised it $48,” with no other accountability. Patients struggling with their pharmaceutical bills will be no closer to affording their medications.

In addition, it is becoming apparent the UPL will create more bureaucratic hurdles for patients. Serious cost benefits like fewer hospitalizations, or being able to remain in the workforce, won’t be considered.

In the beginning I was excited to hear I could potentially save up to 75% on my medication. I’ve been chronically ill since birth and finally found a medication that keeps my worst illness in check. In 2017, I temporarily lost access to that medication for four years. I went from hiking miles to being bedridden. As a result of that lapse, I needed more than 10 surgeries to help correct damage, and I could not work.

Last year, I finally got my infusion back. I’m working, not confined to a bed, and slowly getting better. I’ll always have permanent damage from the loss of access, and I never want this to happen again. Now, Colorado is using me as a pawn and telling my private insurance company they may not be able to cover the only medication that works for my disease. I don’t understand how the state could legitimately hold the lives of Coloradans hostage in a pricing war between pharmaceutical companies, insurance companies and pharmacy benefit managers.

Coloradans need genuine help affording medication. We have families paying hundreds, if not thousands a month to keep their loved ones alive. It’s time to put our citizens first and truly address inequalities in health care. Medicines can’t work if we can’t access them.

Bridget Dandrow-Seritt, of Colorado Springs, is the founder of Advocates for Compassionate Therapy (ACT) Now LLC, a patient advocacy organization working to increase access to therapy for families facing complex medical conditions.