NEW HAVEN–As attorney general, Richard Blumenthal won praise from the vocal group of Lyme disease patient advocates who believe the illness can be a chronic condition–and the ire of many doctors–when he challenged a medical society’s guidelines for treating the controversial tick-borne ailment.

On Monday, Blumenthal announced that he plans to continue his Lyme disease advocacy in the Senate with a bill aimed at promoting better diagnosis, reporting and research on the disease, which he said is widely underreported.

Blumenthal Lyme press conference 7-18-11

Blumenthal with Time for Lyme co-presidents Debbie Siciliano and Diane Blanchard

The bill would also include funding for research into chronic Lyme disease, a condition that mainstream physicians say does not exist.

Blumenthal described the bill as taking an “open-minded and open-ended approach,” without prejudice toward any kind of treatment. But he left little question about his views on the controversial aspects of Lyme. He touted his past work fighting insurance companies and some medical professionals over the existence of chronic Lyme, and was joined at the press conference by Debbie Siliciano and Diane Blanchard, two advocates for recognizing Lyme as a long-term condition.

“Today for me culminates more than a decade of work and probably a decade more, because I’ve seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease,” Blumenthal said.

He added that chronic Lyme disease can last for years and interrupt schooling, work, play and divide families.

While many cases of Lyme disease can be treated with a short course of antibiotics, some patient advocates and physicians say the disease can also exist in a chronic form that can require long-term antibiotics. The mainstream medical community has rejected that view, and some doctors say that patients who think they have chronic Lyme disease could be at risk from both long-term antibiotic treatment and from the failure to diagnose what is really causing their problems.

Blumenthal waded into the Lyme disease controversy in 2006 when he launched an antitrust investigation into guidelines for treating Lyme developed by the Infectious Diseases Society of America. The guidelines, which advised against long-term antibiotic therapy, had been used by insurers to restrict coverage for long-term treatment.

Blumenthal alleged that some members of the panel that developed the guidelines had conflicts of interest, including financial stakes in drug companies or diagnostic tests. The infectious diseases society, which represents physicians, said the panelists wouldn’t gain by recommending short-term treatment. But the group agreed to a review of its guidelines by a new panel.

After more than a year of work, that panel decided to continue recommending short-term antibiotic treatment and advising against long-term antibiotic treatment. Its report, released last year, said that “there has yet to be a single high-quality clinical study that demonstrates comparable benefit to prolonging antibiotic therapy beyond one month.” But chronic Lyme advocates raised concerns about the review process and the panel itself.

Blumenthal’s bill would create a tick-borne disease advisory committee to streamline coordination between federal agencies and private organizations that address tick-borne illnesses. It also calls for the development of more accurate and time-sensitive diagnostic tools to improve surveillance and reporting of tick-borne illnesses to determine their prevalence.

It would create a physician-education program on Lyme-related research that includes “the full spectrum of scientific research,” and increase public education through the Centers for Disease Control, and require the secretary of the U.S. Department of Health and Human Services to regularly evaluate guidelines and research on Lyme disease to educate health professionals and to report to Congress.

Blumenthal said it’s not yet clear how much the bill would cost, but said the amount would be “relatively small.”

Blanchard, the co-president of Time for Lyme, which funds and promotes research and education on Lyme, said public funding for the disease lags behind funding for similar conditions.

“It’s time to take Lyme and take Lyme diseases off the back burner, where it has languished for decades, underfunded, misunderstood, and laden with political controversy,” she said.

Her co-president, Debbie Siciliano, praised what she called a comprehensive bill, and said the focus on improving diagnostic tools is critical. Chronic Lyme advocates say some patients get false negative results in existing tests.

“Once an accurate test is developed, the controversy goes away,” Siciliano said.

But Dr. Eugene Shapiro, a Yale professor of pediatrics and epidemiology who specializes in Lyme disease, called that idea “nonsense.” Diagnostic technology can always be improved, but studies don’t support the idea that people with longstanding infection get false negative test results, he said, and improving diagnosis won’t end the controversy.

Shapiro, who testified in the infectious diseases society’s 2009 special review, had not yet seen the bill and did not comment on it directly. He said he fully supports additional funding for looking at both helping control Lyme disease and finding solutions for people who believe they have chronic Lyme disease. That condition does not exist, Shapiro said, but the people who believe they have it do have chronic symptoms and “clearly have something.”

He added that it’s important that the scientific community, not politicians, determine how research funding is allocated.

Blumenthal said decisions about research would be made by professionals.

He announced the bill at a press conference at the Connecticut Agricultural Experiment Station in New Haven, which has conducted tick research since 1977. While some aspects of Lyme are intensely controversial, others are not, including the importance of prevention and surveillance.

In 2009, there were nearly 30,000 confirmed cases of Lyme, a figure that Blumenthal said represented only a small fraction of the cases that actually occurred.

Dr. Kirby C. Stafford III, head of the department of entomology at the agriculture experiment station, said that some of the physicians least likely to report Lyme are those that see it the most, because of the paperwork involved in reporting. A more active approach to surveillance, in which local health departments follow up with doctors about Lyme cases, could lead to more reported cases.

Stafford, who for the occasion sported a tie with pictures of ticks on it, said it takes time for ticks to infect a person with Lyme, because the bacteria that causes the disease must travel from a tick’s gut to its salivary glands, and because the outer surface proteins in the bacteria must change before mammals can be infected. That’s why it’s important to identify and remove ticks as soon as possible.

The bill is being co-sponsored by Rhode Island senators Jack Reed and Sheldon Whitehouse, and by New York Senator Kirsten Gillibrand, who, like Blumenthal, are Democrats. Blumenthal said that in speaking to his colleagues from the northeast, he found a surprising amount of support, which he attributed to increased awareness of Lyme disease.

“I think there is a level of awareness that makes this bill very, very possible,” he said.

Then he added: “If it doesn’t pass this session, we’ll just keep fighting.”

Arielle Levin Becker covered health care for The Connecticut Mirror. She previously worked for The Hartford Courant, most recently as its health reporter, and has also covered small towns, courts and education in Connecticut and New Jersey. She was a finalist in 2009 for the prestigious Livingston Award for Young Journalists, a recipient of a Knight Science Journalism Fellowship and the third-place winner in 2013 for an in-depth piece on caregivers from the National Association of Health Journalists. She is a 2004 graduate of Yale University.

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