The OPEN Act

Floor Speech

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Mr. BILIRAKIS. Mr. Speaker, I rise today to talk about the 30 million Americans who suffer from a rare disease. One in ten, Mr. Speaker, 10 percent of the country suffers from a rare disease.

Over 95 percent of these diseases have no treatments because each rare disease impacts a small number of patients. That is why I introduced the OPEN Act, the Orphan Product Extensions Now Accelerating Cures and Treatments.

My bill has the potential to help millions of people, and the idea was born from an event in my district. Over the summer, I held two 21st Century Cures roundtables in my district. The 21st Century Cures is a bipartisan initiative to examine and improve the discovery-development-delivery cycle.

Treatments for patients suffering from chronic and rare diseases, whether it is from medical devices or medicine, must be discovered on the ground level through basic science; developed into a practical, usable, and marketable product; and delivered to the patients so that the treatment may be effectively utilized.

Mr. Speaker, the first roundtable featured patients and patient advocates. From some of those patients, I heard about the importance of repurposing drugs. This led to the introduction of the OPEN Act. My bill will leverage the free market to incentivize drugs to be repurposed to treat rare diseases and pediatric cancers.

Repurposing drugs has a twofold benefit. First, the OPEN Act has the potential to result in new treatments for individuals with rare diseases. As I mentioned, the vast majority of individuals suffering from rare diseases don't have treatments, let alone cures; yet I hear often about individuals with rare diseases who will take medication that has not been tested for their condition.

The OPEN Act incentivizes the testing of mainstream drugs on rare diseases. This bill opens the door for new treatments. The OPEN Act can also create a new surge in biotechnology jobs and investments. Creating jobs and helping the sick are laudable goals, Mr. Speaker. My bill takes a step toward accomplishing that.

This bill can help millions of people. It will ensure repurposed medications are safe and effective for rare conditions and can be reimbursed through insurance coverage--so important. This is a bipartisan piece of legislation which I introduced with my colleagues, Mr. Butterfield, Mr. McCaul, and Mr. Hastings.

Helping those with rare diseases is a cause worth supporting, and I am proud to have introduced the OPEN Act.

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