Patients with disabilities in Virginia can breathe a little easier this week, as lawmakers in the Old Dominion abandoned an attempt to create a prescription drug “affordability” board for the Commonwealth. This well-intentioned but ill-designed bill would have established a new bureaucracy to ration access to expensive drugs, harming some of the most vulnerable Virginia residents in the process.
The legislation, sponsored by state Sen. Chap Petersen (D-Fairfax), would have established this new board, with the power to review “expensive” drugs exceeding certain arbitrary thresholds, and set maximum payment amounts for these drugs. The bill gives away its true objective when it talks about evaluating “the estimated value or cost effectiveness of the prescription drug product” as part of the review process.
Terms like “cost effectiveness” refer to drugs that improve patients’ health, but which economists find “too expensive” for their price tag. Organizations like the Institute for Clinical and Economic Review (ICER) undertake cost effectiveness research, and often measure effectiveness using a standard called the quality-adjusted life year (QALY).
But the QALY metric inherently undervalues the most vulnerable in society. It values a year of life for someone with a disability as “less” than that for someone in “perfect” health. A coalition of disability groups wrote in 2019 that QALY-based systems for determining “value” in health care “are discriminatory against people with disabilities and do not have a place in the United States health care system.”
As the mother of a daughter with cystic fibrosis, I have seen how the QALY system discriminates against vulnerable patients. When reviewing the cystic fibrosis drug Trikafta in 2020, ICER called the drug a therapy “likely to alter the course of the disease for the majority of” patients—even as it classified the drug as too expensive for its benefits.
The Virginia bill demonstrates the frightening consequences when governments empower bureaucratic bean-counters to make arbitrary decisions about costs and “value.” That legislation did not just authorize the new board to create a maximum payment amount for drugs. It declared that the maximum payment amount “shall apply to all purchases and payer reimbursements of the prescription drug product dispensed or administered to individuals in the Commonwealth in person, by mail, or by any other means.” In other words, an individual who wanted to buy a drug the board deemed “too expensive” would have no power to do so within Virginia’s borders—not even with his or her own money.
The Virginia bill had other flaws as well. By directing the board to study certain generic drugs, and giving the board the authority to subject them to possible price controls, the legislation could have inadvertently discouraged one of the prime sources of competition among pharmaceutical products—one that normally lowers rather than raises drug prices.
Virginia consumers and patients—particularly vulnerable patients with disabilities—have reason to celebrate this legislation’s demise. But given that legislatures in other states continue to debate this topic—neighboring Maryland previously passed similar legislation—conservatives have reason to remain vigilant against these types of steps towards government-run health care in all 50 state capitals.