House committee approves Lyme legislation to be added to federal program

WASHINGTON (NEWS10) – Legislation aimed at speeding the development and approval of treatments and cures will now include legislation designed to combat tick-borne illnesses.

Congressman Chris Gibson announced on Thursday the House Energy and Commerce Committee approved legislation he authored to combat Lyme disease and other tick-borne illnesses. The Tick-borne Disease Research Transparency and Accountability Act will be included in the 21st Century Cures Act, which expands federal programs designed to speed the development and approval of disease treatments and cures.

But until it becomes law, many patients diagnosed with Tick-borne illnesses are paying out of pocket. A local patient fears she can’t wait much longer for help.

DeeDee Grimes of Schenectady writes down the words “very frustrating.”

Those words were used to describe her struggle with chronic Lyme disease. She still isn’t able to speak.

Grimes receives IV antibiotic treatment, but her insurance company won’t cover the cost. Her husband, Mark Grimes, said she had multiple positive Lyme tests.

“That was the criteria for coverage, and then we went for coverage and they say, ‘Not happening,’” he said.

But now there’s hope for patients like DeeDee.

“Don’t give up,” she said with the use of a computer program. “Keep trying.”

“[The bill] requires a change in the guidelines,” Gibson said. “The Centers for Disease Control guidelines that deal with diagnosis and treatment.”

Gibson said changing the guidelines will change the treatment insurance companies can cover. Dr. Ronald Stram, who treats hundreds of patients with Tick-borne illnesses, explains why his patients have a hard time getting coverage.

“There isn’t a code of chronic, persistent Lyme, so therefore, you can’t even document it as a code for insurance purposes,” he said.

But until the bill becomes law, patients like DeeDee are on their own and paying out of pocket.

“Thousands of dollars,” Mark said.

“We need way more concern with medical health insurance,” DeeDee said.

The bill requires the Secretary of Health and Human Services to consult with a working group consisting of federal agencies, non-federal partners, experienced Lyme physicians and patient advocates to submit a strategic plan to Congress within three years that includes benchmarks to measure progress.

The plan must include a proposal for improving the outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms, infections and co-infections.

The group will coordinate with the CDC to maximize the research efforts.

Gibson introduced the act last year. It became the first standalone bill addressing Lyme disease to pass the House of Representatives; however, the bipartisan bill was not brought to a vote in the Senate.

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