Too many of us know what it is like to have a sick family member or friend. Almost anyone you meet can tell you about a friend or family member who has been diagnosed with cancer, suffers from Alzheimer's, or is living with a rare disease (30 million Americans have a rare disease — rare diseases are not a rare problem).
On a personal level, I have family members who have suffered with Parkinson's — I witness this debilitating disease through them. How can we get cures and treatments to these people who desperately need them?
That is the question the 21st Century Cures Initiative was created to answer.
The 21st Century Cures initiative is a bipartisan undertaking by members of the Energy and Commerce Committee to help our health care innovation infrastructure thrive and deliver more hope for all patients.
21st Century Cures Initiative has examined and seeks to accelerate the complete cycle of cures — from discovery to development to delivery and back again to discovery — and has resulted in the 21st Century Cures Act, a culmination of over a year's worth of engaging with patients, researchers, physicians, government and private entities.
The provisions in the bill — including an increase in funding for the National Institutes of Health — will deliver cures and treatments to patients faster.
One provision in the 21st Century Cures Act, among four that I was proud to author, specifically focused on people with rare diseases.
Last summer, I held two 21st Century Cures roundtables in my district to hear directly from those who know best — patients, physicians and researchers. One of these rare disease patients, Ashleigh Pike, educated me on the importance of repurposing drugs.
Pike, like other rare disease patients, is willing to take medication that has not been tested for her condition. This is known as taking medication "off label."
Unfortunately, taking medication off-label is not allowed by the Food and Drug Administration. That is why I introduced the OPEN Act: the Orphan Product Extensions Now Act.
My bipartisan bill has the potential to help millions of people by incentivizing the testing of mainstream drugs — or repurposing them — to treat rare diseases and pediatric cancers. I am thrilled it was included in the 21st Century Cures Act.
The OPEN Act would unlock a new world of potential treatments and put FDA-approved, safe and effective treatments "on-label."
Another provision based on my legislation would provide seniors with transparency in Medicare Parts A and B by allowing them to better identify the out-of-pocket costs they might face for a given treatment or service. Many outpatient surgeries have different costs for seniors, based solely on where a senior chooses to go for a treatment or operation.
Republicans and Democrats can agree the rising cost of health care is a serious issue, and the concern is particularly poignant in the Medicare program.
Seniors deserve to know how costs for a treatment or operation vary depending on location, in order to choose the site of service that is best for them and their budgets.
I expect the 21st Century Cures Act to pass the U.S. House later this month by an overwhelming, bipartisan margin. When this bill is signed into law, it will be a historic achievement.
It will help the 160 million Americans who suffer from a chronic or rare condition. Helping people is why we were sent to Washington, and that is what we are doing.
U.S. Rep. Gus Bilirakis, R-Palm Harbor, represents portions of Pinellas and Hillsborough counties, and all of Pasco County. He wrote this exclusively for the Tampa Bay Times.