Sen. Kirsten Gillibrand Pushes For Lyme Disease Patient Advocacy

Kirsten Gillibrand

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. The number of those suffering from such ailments continues to rise in New York, especially in counties along the Hudson River.

Those who believe they have suffered from “chronic Lyme” — a controversial diagnosis — pushed for two years for the formation of the Working Group as a way to have their voices heard by federal health officials, according to Holly Ahern, a SUNY Adirondack microbiologist who is a well-known patient advocate. Health officials have long followed the guidelines of an influential infectious disease doctors’ group, which does not recognize chronic Lyme disease.

Gillibrand, urging the patients and their families gathered around her to use social media to tell their stories, made it clear she believed their tales. The senator and her father have had bouts of Lyme disease; her father’s girlfriend, she said, has had chronic Lyme.

“While there are people who don’t believe chronic Lyme is real — well, I can tell you it’s real. It exists,” said Gillibrand, who also said she would oppose proposed cuts to the National Institute of Health that would impede Lyme research.

Gillibrand sponsored the legislation in the Senate that called for the Working Group. Former Congressman Chris Gibson originated the bill in the House of Representatives.

Chronic Lyme is a term for a constellation of symptoms that can occur after an acute case of Lyme disease, which is caused by bacteria transmitted by a tick bite.

While in most cases, Lyme disease that is caught early can be treated effectively with antibiotics, it’s undisputed that about 10 percent to 20 percent of patients will continue to have symptoms like headaches, joint and nerve pain, dizziness and fatigue for months and even years.

It’s the cause of those persistent symptoms that’s debated. Many infectious disease doctors view them as an aftereffect of a bacterial infection. But those who advocate for treating the disease as chronic believe the bacteria that causes the infection lingers in the body.