Federal price controls on prescription medication offer a seemingly easy solution to the serious challenge patients face in paying for their drugs. But diving deep on this question, beyond the soundbites and social media posts — as Sen. Mike Lee and others have had the courage to do — shows some significant long-term risks for patients across Utah who are eagerly awaiting new, innovative therapies. 

Throughout the recently concluded campaign, Lee took criticism for raising significant concerns about the drug price caps contained in the federal Inflation Reduction Act. Taking the longer view and asking tough questions are never easy when the focus in politics — particularly during campaign season — is more on scoring the next quick win on social media. But in the case of these federal price controls there are significant unintended consequences for research and development of new medicines. 

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Here’s why the red flags raised by Lee and other elected officials in both parties are on point, and why the politically motivated criticisms of his objections are off base. While we must continue to find solutions that will provide significant and lasting cost relief to patients, we cannot do that at the expense of patients who desperately need new medicines to help them fight their diseases. 

Consider the hundreds of patients across Utah and the tens of thousands across the country who suffer from hemophilia and other chronic bleeding disorders. Access to often expensive but essential medicines helps preserve their quality of life. On average, the annual cost of hemophilia treatments ranges between $300,000 up to $1 million. Those costs can skyrocket if a patient faces even minor surgery. 

Given these high costs, it would be easy to assume that the hemophilia community would be enthusiastically on board for federal price caps. But not so fast. 

Utah patients with bleeding disorders are keenly focused on the research, and development of new therapies that can stop bleeding more effectively and address the genetic roots of the diseases are eagerly awaited. In just the past few years, we have seen more and more treatments enter clinical trials. 

Many of these innovations are attempting to replace the existing clotting factor in blood, while others are focused on new means to stop bleeding. The clinical trial phase is the pivotal testing phase to determine if these new medicines are safe and effective for use on patients. These complex innovations include gene therapy and cell therapy, and others are out on the frontier of medical research. 

Exciting, for sure. But as we all have learned in the national effort to develop vaccines and treatments quickly and safely for COVID-19, research and development is not only painstaking and time consuming, but very expensive. Bringing just one new drug to market can cost hundreds of millions of dollars. Each massive investment is no guarantee that promising research can produce a marketable drug. 

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While many policymakers are laser focused on cutting drug costs, it is imperative that they also look at how revenue from medicines currently on the market is harnessed for research in the drugs and other therapies of the future. Today, before government price setting has taken effect, patients in the U.S. have access to 90% of new drugs. This is a far cry from patients in countries that have embraced price controls who have access to just half of new medicines. 

There are significant solutions available to truly help patients and make medicines more affordable — without risking the research pipeline that offers such hope to patients across Utah and the nation. We need more leaders like Lee who tackle the nuances, and unintended consequences of headline-generating proposals. That is what patients are counting on from Congress as leaders reconvene next year.

Jan Western is executive director of the Utah Hemophilia Foundation, an organization empowering individuals with bleeding disorders to lead healthier and more self-sufficient lives. For more information visit www.hemophiliautah.org