Grossman Column: Time to legislate against Lyme disease

09/20/2015 9:00 AM |

There’s a renewed push in the U.S. Congress for legislation to strengthen the federal government’s activities on Lyme disease, endemic on the North Fork, Shelter Island and all over Long Island.

Whether the drive can withstand pressure from the health insurance industry — which denies the existence of chronic Lyme disease and so avoids paying for its treatment — is an issue.

Congressman Lee Zeldin (R Shirley), with a district that includes the East End, Shelter Island and Brookhaven Town, has been a victim of Lyme himself. Mr. Zeldin is cosponsoring two measures in Congress, the “Tick-Borne Disease Research and Accountability and Transparency Act of 2015” and the “21st Century Cures Act.”

The congressman regards the bills as potentially a “key for the health of residents of Long Island.”

In the Senate, Richard Blumenthal (D-Connecticut) has reintroduced his bill, now titled “the Lyme and Tick-Borne Disease Prevention, Education, Research Act of 2015.”

As attorney general of Connecticut, Mr. Blumenthal conducted an antitrust investigation into the “guidelines” for Lyme disease treatment by the Infectious Diseases Society of America (IDSA). This group supported the health insurance position that chronic Lyme disease doesn’t exist and long-term antibiotic treatment isn’t necessary . But the attorney general’s office found collusion with financial interests.

As Mr. Blumenthal stated in 2008 after IDSA agreed to “reassess” its guidelines: “This agreement vindicates my investigation — finding undisclosed financial interests and forcing a reassessment of IDSA guidelines. My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations re-flected all relevant science.”

The documentary “Under Our Skin,” winner of numerous film festival awards, also found collusion between members on the IDSA panel on Lyme disease with financial connections to health insurance companies. It also related the stories of Lyme sufferers cured with long-term treatment and told of doctors who provided long-term Lyme care being severely punished by the medical authorities.

Andy Abrahams Wilson, producer and director of “Under Our Skin” and also a new updated documentary, “Under Our Skin 2: Emergence,” has said that despite the agreement with the attorney general, the IDSA “guidelines were not changed.”

In the new documentary, he said, “We’re continuing to look at the — let’s call them — ‘chronic Lyme denialists.’ ”

A U.S. senator since 2011, Mr. Blumenthal has tried to deal with the health crisis through legislation. In that year he first introduced his Lyme and Tick-Borne Disease Prevention, Education, and Research Act.

His legislation states: “Although Lyme disease can be treated with antibiotics if caught early, the disease often goes undetected because it mimics other illnesses or may be misdiagnosed. Untreated, Lyme disease can lead to severe heart, neurological and joint problems because the bacteria can affect many different organs and organ systems.”

Under his bill, a Tick-Borne Diseases Advisory Committee would be established to “coordinate all federal programs and activities related to Lyme disease and other tick-borne diseases … Although Lyme disease accounts for 90 percent of all vector-borne diseases in the United States, the ticks that spread Lyme disease also spread other diseases, such as anaplasmosis and babesiosis.”

The committee would include members of “the scientific community representing the broad spectrum of viewpoints held within the scientific community related to Lyme disease and other tick-borne diseases.” Also, there would be representatives of “tick-borne voluntary advocacy organizations,” Lyme patients or their relatives, and “representatives from state and local government health departments and local health professionals who investigate or treat patients with Lyme disease.”

Among its activities would be “development of sensitive and more accurate diagnostic tools and tests, including a direct detection test for Lyme disease,” expanding a “national uniform reporting system” for cases, “creating a national monitoring system for tick populations,” fostering “increased public education” and “creation of a physician education program.” The committee would issue reports on its work each year.

If the Lyme legislation makes it, new and vital federal action on this scourge might be coming.

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