Gillibrand pushes to include Lyme patients on new advisory panel
Time Union (Albany, New York), July 17, 2017
by Claire Hughes
U.S. Sen. Kirsten Gillibrand vowed Monday afternoon to push for the inclusion of chronic Lyme disease patient advocates on an advisory panel being put together in Washington, D.C.
At Juckett Park in the heart of the village of Hudson Falls, Gillibrand announced to local officials and residents that the U.S. Department of Health and Human Services had on Monday begun seeking nominations for the Tick-Borne Disease Working Group.
The advisory committee, mandated by a provision of the 21st Century Cures Act signed by former President Barack Obama in December, is intended to bring together a diverse array of experts to counsel federal officials on how to fund future research on tick-borne illness. READ MORE.
I am sending them my CV.. let’s see what happens
Rather than more “research” what we need is Medicare, Medicaid and other insurance companies to pay for treatment rather than just initial diagnosis and twenty eight days of antibiotic. We need doctors who know how to diagnose and are not afraid to treat us. Timely treatment will prevent chronic illness. We need to concentrate on getting better, not having to deal with collection agencies and collection lawyers calling us regarding our unpaid medical bills. We need relief from worrying how we are going to pay our out of pocket expenses. Some of us have paid out of pocket tens of thousands of dollars for which insurance refuses to reimburse us. This after paying premiums for years! I do not want to hear “it is all in my head”. I am NOT an experiment. I KNOW what I have and how I have to be treated. After I and others suffering from this insidious and debilitating disease are treated according to our individual needs, THEN, “research” can be done until what ever is being “researched” is found! Right now, I and everyone I know with tick borne illness want to be well and move on with and enjoy our lives!
I’d like to see Dr Neal Spector, Dr Alan MacDonald, and Dr Sin Han Lee on the professional panel, among many others. Perhaps they could add ad hoc members per patient advocate suggestions?
Given the extreme bias and foot dragging from CDC, I don’t think CDC should have a voting status on the panel. Voting status should be weighted to patients and advocacy groups.
Given the gravity of the problems, they need more than 2meetings per year!
I agree with Ms Pastuzyn. The most important goal for hhs regarding tbd should be access to care (many metropolitan areas have none), and coverage of extended treatment by medicare, medicaid, va and private insurance.