Why Congress Must Reject Drug Pricing Proposals That Are Dangerous for Patients Like Me

As someone with a rare disease, I know how desperate patients and families are for medical breakthroughs. And as a leader of a company striving to answer that call, I also know how harmful current drug pricing proposals being offered up in the Build Back Better Act may be to foster innovation and deliver meaningful therapies to those in need.

While the stated intent behind these proposals is to lower costs, they would instead likely damage the biotechnology industry’s critical research and development efforts over several decades, destroying hope for the patients who need innovation most and exerting government control over patient access to future therapies.

For 10 years, I suffered with pain and inflammation, shuffling between more than 100 doctors, only to hear “you’re an interesting case.” Years later, I was finally diagnosed with a rare disease and an autoimmune disease before being prescribed medication that would allow me to live a better life. Unfortunately, the journey for many other patients to find effective treatment leads to a dead end.

For me, and for patients who share my story, providing my perspective on the harmful proposals being put forward in Congress is personal.

One of the most controversial plans before Congress would empower the government to set the price for medicines and impose stiff penalties on companies that don’t agree to its terms. The result? Companies would be forced to reduce investment in R&D for new medicines for some of the most complex conditions patients face today.

It’s expensive to bring new therapies to market — research, testing, clinical trials and analysis must be done by skilled scientists and physicians over many years — to ensure a drug is safe and effective. When companies lose the ability to set prices that reflect the deep investment in R&D, they also lose the ability to take innovative risks for patients. This translates into the loss of scientific jobs, loss of American competitiveness and fewer life-changing drugs.

The White House Council of Economic Advisers paints a grim picture about the impact of government price controls, predicting that as many as 100 fewer drugs will come to market in just the next decade —many of them for rare diseases.

American patients can access nearly 90 percent of the new medicines launched between 2011 and 2017. That number drops to two-thirds in the United Kingdom and half in Canada and France. All three countries have drug price controls.

The most egregious proposed policy mistake Congress is making ignores the deep-rooted causes of U.S. health care spending.

As of 2019, hospital care constituted nearly a third of American health care spending, with the rate of growth expected to increase as high as 5.7 percent per year through 2027. By contrast, during the same time period, prescription drug spending has remained stable. Today, drug spending accounts for just 14 percent of overall health care spending in the United States.

Rather than imposing Medicare price negotiations, Congress should focus instead on policies that address the significant drivers of health care spending.

While companies like Horizon have made strides to bring groundbreaking treatments to Americans living with a rare disease, only 5 percent of the roughly 7,000 known rare diseases have effective treatments today. Improving access and outcomes for these patients and all Americans is a cause we should all be working towards. But it shouldn’t come at the cost of the treatments and cures of tomorrow.

If my story isn’t personal enough, consider that my son’s future is dependent on those cures that are still to come. Like me, he is battling the same rare disease. And together, we are navigating an increasingly complex health care system that makes accessing treatment a constant challenge. As a parent, it’s gut-wrenching when he asks me when I am going to find a medicine that will cure him.

I know we can help him and the loved ones of countless others — but not with Washington on its current path. I urge Congress to reject policies that discount the gains we’ve made for so many patients and that may jeopardize future investments in innovation. Instead, let’s have a real conversation about addressing health care spending in America and creating a sustainable and accessible future where health care innovation is rewarded for all Americans.


Tim Walbert is the chairman, president and chief executive officer of Horizon Therapeutics, a global biotechnology company dedicated to delivering medicines for rare, autoimmune and severe inflammatory diseases.

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