My daughter’s annual pharmacy bill is always at least three times my salary as a public employee. As the head of a small state agency, I earn about $112,000 a year.
There’s something wrong, and unsustainable, about that. State employees in New Hampshire have excellent benefits. We pay very little out of pocket for prescription medications. But expecting my fellow citizens to fund $400,000 a year to allow my daughter to live with cystic fibrosis is untenable.
Thus I was pleased that New Hampshire established a Prescription Drug Affordability Board in 2020 to focus on this problem, with particular attention to the cost of prescription medications for public servants and their families. And I was disappointed this summer when the Legislature abolished the PDAB right when it was just starting to gain momentum. It happened with no public hearings, via the state budget process.
As a cystic fibrosis dad, I was puzzled to open my Monitor on Sept. 6 to read an op-ed from an out-of-state activist connected with a different disease, celebrating the demise of the PDAB. It is likely an example of a phenomenon I see all too often.
Big Pharma — which hates PDABs — wins over representatives of patient communities and uses them as sympathetic mouthpieces in support of public policy that allows pharmaceutical companies to charge outrageously high prices. The breakthrough cystic fibrosis drug Trikafta — the main reason most people with cystic fibrosis can now expect to live into old age — carries a list price of more than $300,000 a year. But few cystic fibrosis families care about that, because they pay almost none of that outrageous sum themselves.
The author argues that PDABs “add layers of bureaucracy that delay access to treatments and limit options” while relying on “one-size-fits-all formulas that ignore the unique needs of individual patients” while granting “non-medical officials the authority to make decisions that should be reserved for doctors and patients.” My family’s experience suggests otherwise. PDABs — even ones that, unlike our former PDAB, have authority to set actual price limits — do not constrain patients or physicians. They constrain only drug companies, whose profit-maximizing executives are the real bureaucrats and non-medical officials whom we allow to make important decisions that loom large in the examining room.
Companies like Vertex Pharmaceuticals, which makes Trikafta and similar drugs, deserve to earn big bucks when high-risk drug development projects yield successes.
PDABs, in states that have them, exist simply to make sure there are some reasonable limits on such profits. In two years, my daughter will be 26 and no longer eligible for her parents’ medical benefits. Her survival after that will depend on a healthcare system that allows her to thrive without imposing crushing financial burdens on the community. With that in mind, abolishing our PDAB was a mistake that I hope our Legislature and Governor will reconsider some day.
Donald M. Kreis is a member of the New England Comparative Effectiveness Public Advisory Council of the Institute for Clinical and Economic Review in Boston, which evaluates the cost effectiveness of emerging medical treatments, and serves as the individual giving chair of the Northern New England Chapter of the Cystic Fibrosis Foundation. He lives in Concord.