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Congress needs to stop pharmacy benefit managers from wrongly impeding access to drugs

When I was 40 years old, I received a medical diagnosis we all fear: cancer. In the prime of my life, doctors confirmed after multiple tests that I had colon cancer. Remarkably, that dreaded day was nearly 30 years ago. Today, I am a 68-year-old cancer warrior who lives cancer-free thanks to the research and development of new medicines.

It is critical that we continue to rally support for better treatments and fight for policies that ensure these medicines are affordable for everyone who needs them.

The American Cancer Society estimates that, nationally, there will be approximately 153,000 new cases of colorectal cancer this year, including 106,590 new cases of colon cancer.

In recent decades, we’ve made important progress against colon cancer. Regular screenings have played a key role. Early detection can help a patient get started on a course of treatment more quickly and increase chances of survival. Another critical factor is biomedical innovation.

New breakthrough therapies are helping people like me beat the odds and enjoy more time with friends and loved ones. Approximately 70 medicines are currently in development for colorectal cancer. Many of these experimental treatments are in early stages of testing.

Other potential therapies are in Phase III clinical trials, the final step in the research and development process before the U.S. Food and Drug Administration decides whether to give its stamp of approval.

This wave of innovation is urgently needed. Despite the progress we’ve made, colorectal cancer is still expected to claim the lives of more than 53,000 Americans this year. There also continues to be a slow yet persistent uptick in deaths among individuals below the age of 55. More medical progress is needed, and not just in cancer.

Many individuals – including me – also battle other health concerns. I also have Type 2 diabetes and high blood pressure. Medicines are an essential part of my everyday life, which means I am highly sensitive to whether prescription drugs are available and affordable. For some Americans, access and cost can be huge impediments.

Health insurance keeps costing more and covering less. A Kaiser Family Foundation survey last year projected that family premiums for employer-provided insurance would go up 7% this year and reach an average cost of $23,968. It’s no wonder many Americans say health care is too expensive, including what people have to pay out of pocket at the pharmacy.

Lawmakers have searched for years to find answers, and many are finally taking a hard look at pharmacy benefit managers or PBMs. These intermediaries manage prescription drug formularies that determine what medicines are covered by insurance and what we all pay out of pocket. The three largest PBMs control about 80% of the market and are part of the country’s largest insurance companies.

PBMs charge fees and demand rebates from drugmakers that are based on the price of a medicine, which means they make more money when drug prices are higher. As a result, they often don’t cover generics and other low-cost treatments that could save people money. To make matters worse, they don’t have to share rebates with patients, and instead, can force people to pay full price.

There is strong agreement that changes are needed, like making sure rebates go to the patients who need them. Multiple bipartisan bills would help address PBM abuses and lower costs for patients, but so far Congress has failed to act. Time and again, they’ve delayed action and allowed PBMs to escape accountability. The longer Congress waits, the longer patients are forced to pay more than they should.

Medical research continues to save my life, and it’s critical we ensure the next generation has access to life-saving treatments and cures. Just as importantly, we need to ensure they are accessible and affordable for everyone who needs them. Innovation is moving forward. Congress should, too.

About the Author: Terry Uhl is the former executive director of Shoes and Clothes for Kids.


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