In Congress, policy negotiations often center on a couple questions: how much does the bill cost and how much does the bill save? But the intense focus on these numbers can have the effect of distancing members from the real-world impact on Americans.
Congressional caucuses, like the Rare Disease Congressional Caucus which Joe co-founded, provide opportunities to hear from people who confront life-altering decisions. Hearing directly from people affected by rare diseases changes the way members consider legislation.
As our former colleagues begin to consider H.R. 3, the Lower Drug Costs Now Act, we hope they will look beyond the numbers and endeavor to understand the impact of potentially reducing access to breakthrough drugs or undermining the development of drugs for rare diseases.
One provision in H.R. 3 would index U.S. drug reimbursements to the lower prices paid in six countries. In these reference countries, government officials use opaque “health technology assessments (HTAs)” to make reimbursement decisions. In some cases, these assessments render certain lifesaving medicines inaccessible to patients.
Pegging our reimbursements to the arbitrary prices generated by those HTAs could saddle Americans with the same access barriers that patients in other countries face, while simultaneously discouraging lifesaving research nationwide.
All six of the reference countries have healthcare systems controlled mostly or exclusively by the government. The governments — not doctors and their patients — decide which medicines should be used to treat patients.
Government agencies conduct health technology assessments to determine which medicines should be covered, and at what prices. But no one really knows the exact methodologies used to make those decisions.
Take Australia for example. The Australian system focuses on “value for money.” That is, the agencies won’t recommend a new drug that’s “too expensive” in relation to the clinical benefits it provides.
Value for money is an inherently subjective metric. How much is a human life worth? If a new $10,000 a month cancer drug sends a minority of patients into remission for years, is it worth trying?
In the United States, doctors and patients get to make those decisions. In the reference countries, government officials make that call. And they often decide that new drugs aren’t worth the cost.
Germans had access to just 64 percent of all new treatments launched globally from 2011 to the end of 2020, while Americans had access to 86 percent of those medicines. The British have access to just 60 percent, the Japanese 52 percent, and the Canadians 47 percent.
Proponents of H.R. 3 must ask themselves if it’s worth importing these access restrictions to America. Pegging reimbursements to the arbitrary prices in those reference countries could discourage firms from launching their medicines in the United States.
These firms fund a majority of biopharmaceutical R&D in the United States, more than $100 billion annually. The NIH, by comparison, put just $3 billion toward pharmaceutical clinical trials in 2018.
American firms won’t pour billions of dollars into challenging R&D projects if the resulting medicines stand no chance of earning a return.
Lowering patients’ pharmacy bills is an urgent and necessary goal — but cutting off Americans’ access to lifesaving drugs and undermining the development of future treatments isn’t the right solution.
Joe Crowley is a former U.S. Representative. He served New York from 1999 to 2019 and co-founded the Rare Disease Caucus in 2009. Bill Shuster is a former U.S. Representative. He served Pennsylvania from 2001-2019.
This opinion column dose not necessarily reflect the views of The Boulder Weekly.