A bill that would prioritize federal research on Lyme disease and related illnesses — and give patients a voice in the process — cleared an important hurdle in Congress on May 21, 2015.
Another great report from Poughkeepsie Journal:
This bill that would prioritize federal research on Lyme disease and related illnesses — and give patients a voice in the process — may reach President Obama’s desk by the end of the year.
The Tickborne Disease Research Accountability and Transparency Act was adopted into a larger medical research bill by the House Energy and Commerce Committee Thursday.
In a distinct display of bipartisan cooperation, the larger “21st Century Cures Act” was unanimously approved by the committee’s members.
The larger bill includes the Lyme measure introduced last year by U.S. Rep. Chris Gibson, R-Kinderhook. That bill would create a group of federal agencies and “non-federal partners,” including Lyme physicians and patient advocates.
The group would be charged with ensuring coordination among federal agencies to maximize research priorities.
It would also require the secretary of health and human services to consult with the group and create a strategic plan within three years.
That plan would need to include a proposal for improving outcomes of Lyme diseaseand other tick-borne diseases, including progress related to chronic or persistent symptoms, infections and co-infections.
It would also have to include benchmarks to measure progress toward those goals.
Dr. Kenneth Liegner, a Pawling-based internist who appeared at a forum with Gibson in Pawling earlier this month, said the bill would level the playing field for researchers, clinicians and patients who have battled chronic Lyme disease in the face of federal denials of its existence.
“I think it is the best hope I have seen in a long time,” Liegner said, “in really redirecting priorities in order to address the problems, stop denying them and solve them — because they are solvable.”
Co-sponsor Sean Patrick Maloney, D-Cold Spring, said “it’s past time to get serious and make the investments needed to join them in their fight.”
Gibson said he expects the bill to make it through Congress and be signed by President Obama by the end of the year.
“This is a great piece of legislation that will make a positive difference in the lives of Americans, including those long suffering from chronic Lyme,” he said.
John Ferro: 845-437-4816; firstname.lastname@example.org