Lyme Disease Legislation May Advance Patient-Centered Research

Patricia Smith, President of the Lyme disease Association Inc., explains what it means that Lyme disease has been incorporated into CDMRP legislation as well as the 21st Century Cures Act.

Interview Transcript (slightly modified for readability)

“Current legislation on Lyme disease has included at least two pieces at the federal level that have been significant. The first one happened in 2015 and allowed Lyme disease to be put into something called CDMRP (Congressionally Directed Medical Research Program), [which] is funded through the Department of Defense’s budget. What happens is, there are diseases put in there that affect not just the military, but their dependents, and so, it’s difficult to get diseases in there.

We worked with Congressman Chris Smith, [who] worked with Congressman [Rodney] Frehlinghuysen in New Jersey, and we were successful in getting that put into CDMRP. So, that provided new research money — small to start with, but we have hopes that that will increase – for tick-borne diseases in general.

In 2016, we were successful in getting our Lyme Language — and I say it that way because, originally, it was a stand-alone bill, which we did get passed in the House – incorporated into 21st Century Cures Act, which is really significant because that covers many diseases. Now, the purpose of that language for Lyme disease was to establish a working group in the government. There’s already a tick-borne disease working group, but the problem with that is that has no outside partners, only federal partners. There are no patients sitting on that group, no treating physicians, [who] are important stakeholders in Lyme disease, [and] we needed them to sit at the table.

So, this language that we were able to write, get pushed through, and finally get included into 21st Century Cures Act — which the Lyme Disease Association played a large role in – will create this working group. We hope, finally, after all these decades, that Lyme disease patients will have a voice at the table to help say to the government ‘this is the kind of research we need. We don’t need the kind of research that has given us nothing as patients, that has led us to have sick families, that has led us to lose our jobs, and [keep] our children home from school. We need research that’s going to provide real answers with 21st century technology included.’

That’s what we hope to see out of that.”