As health officials grapple with the complexities of Lyme disease, federal lawmakers have finally gotten more forcefully into the fight.
But — as with just about everything related to this confounding disease — a drawn-out battle ensued before even the promise of progress could be made.
The mid-Hudson Valley has long been at the epicenter of the struggle. Lyme is a menacing disease, one that affects 300,000 people annually. It can cause chronic pain, fatigue, muscle aches and other health problems that must be confronted. Lyme is generally transmitted through deer ticks, but it can be treated with antibiotics such as doxycycline if detected early.
Unfortunately, that’s where the agreed-upon solutions end. The medical community and regulators have had major disagreements about how to deal with long-term cases of Lyme – and whether such afflictions exist at all.
Clearly, research and funding are imperative to get a true grasp on how Lyme and other diseases interact with other forms of infection. And, clearly, those afflicted and the doctors who treat them need to control their own destinies and not be beholden to the rigid guidelines set up by powerful insurance companies that refuse to cover certain treatments.
To those ends, Congress recently approved the 21st Century Cures Act aimed at addressing these issues. Specifically, the legislation empowers Lyme physicians and patient advocates by including them in a group charged with ensuring coordination among federal agencies to maximize research priorities for Lyme. This a crucial point. For too long, sufferers and the doctors have been shut out of the decision-making process leading to a long-term strategy. But grassroots groups and advocates kept pushing for a voice.
New York’s congressional delegation, including U.S. Rep. Chris Gibson, R-Kinderhook, and U.S. Rep. Sean Patrick Maloney, D-Cold Spring, and U.S. Senators Charles Schumer and Kirsten Gillibrand, both Democrats, were instrumental in getting the legislation approved.
Yet other battles linger. For instance, as a Poughkeepsie Journal investigation has found, profound concerns still are being raised over how Lyme cases are tabulated. In 2009, the state Health Department implemented a way to ease the counting burden on county epidemiologists overwhelmed by thousands of investigations. Consequently, counties like Dutchess and Ulster have fallen far down in the national rankings of case counts — and that can effect funding for research and prevention.
That too bears watching, as does the implementation of the 21st Century Cures Act. It has taken far too long to get recognition and traction in this fight; for the sake of those suffering, there can no let up now.