Bilirakis to Hold #Path2Cures Roundtables in Florida

August 6, 2014

“We want to find out people’s concerns and discover what barriers they are facing… We want to give people hope.”

The Energy and Commerce Committee’s bipartisan 21st Century Cures initiative has been an open and collaborative effort from the start. Through a series of white papers and a number of hearings and roundtables, the committee has sought ideas from individuals and groups all across the country, and the effort continues this August as committee members engage the public coast to coast. As part of the effort to accelerate the #Path2Cures, committee member Rep. Gus Bilirakis (R-FL) has scheduled two 21st Century Cures roundtables this month in Hillsborough County, Florida. The first roundtable on August 19 will focus on Patients and the Patient Perspectives and the second on August 22 will focus on Spurring Innovation, Advancing Treatments, and Incentivizing Investment. Additional details about the roundtables can be found at Bilirakis.house.gov/cures. Learn more about the 21st Century Cures initiative here and follow us on Facebook and Twitter using #Path2Cures.

August 6, 2014

Working together (yes!), Congress tries to speed medicine approvals

By Joe Henderson

My Aunt Ruth was a remarkable lady, active and strong well into her retirement years. Even when she was diagnosed with Parkinson’s disease, doctors told her not to worry. They told her it would take many years, if ever, before she would feel the full effects.

The doctors were wrong. …

Anyone who has been in that position with a loved one understands the helplessness you feel, and cures aren’t coming nearly fast enough. According to medicinenet.com, getting a new drug from the drawing board to market takes an average of 12 years, even with all of the amazing research going on around the world.

So consider that as we look inside the chambers of the House Energy and Commerce Committee. A bipartisan group that includes two local members of the U.S. House of Representatives — Gus Bilirakis (Republican) and Kathy Castor (Democrat) — is giving the public a rare respite from the normal bickering that goes on in Washington.

Instead of tearing apart members of the opposing party, your elected representatives are working together to see if they can get new treatments approved and to market faster.

“This isn’t political at all,” Bilirakis said. “I want to take the politics out of it.”

The committee is examining the steps a new drug takes from discovery to delivery. The process includes input from the public at roundtable discussions beginning at 1:30 p.m. Aug. 19 and Aug. 22 at the Bethany Center in Lutz. …

“It will be an open discussion,” he said. “We want to find out people’s concerns and discover what barriers they are facing. I know there are a lot of frustrated people out there.”

There are thousands of proposals for new drugs every year, and most of them don’t make it off the drawing board. It takes millions of dollars in research and marketing in addition to the time it takes to develop a treatment, and you have to think that some of those drugs that don’t make the cut now might have promise.

That requires a culture change.

“Decades ago, health care was very physician-centric and actually very paternalistic. We all recognize that today,” Janet Woodcock of the Food and Drug Administration told the House committee earlier this year. “It was kind of, ‘The doctor knows best; don’t ask any questions.’”

I think that’s what frustrates people the most, especially when the need — as it was with my aunt — is desperate. I know she would have volunteered for any treatment that would have given a sliver of hope.

Can the discovery of effective new treatments be accelerated on the front end with more research? Once the drugs are made, are there steps the FDA can take to shave years off the time it takes to get them to patients?

Good questions.

“That’s why we want to have this discussion,” Bilirakis said. “We want to be able to treat Parkinson’s, Alzheimer’s, and what have you. We know there are a lot of people out there with chronic diseases and they need help.

“We want to give people hope, and that’s really why we’re here in Washington — to make a difference.”

Read the article online HERE

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