For the longest time, those afflicted with Lyme disease — and the people who advocate for them — have sought a seat at the table.
They’ve wanted to be heard, in a meaningful way, by those who set policy about disease definitions, treatment standards, insurance coverage and other issues that have surrounded the debate over chronic Lyme disease.
Pain, after all, is a great motivator.
That longing has been behind a number of efforts, including one led by local U.S. Rep. Chris Gibson, Republican of Kinderhook, to make sure those voices were heard. In the mid-Hudson Valley, Lyme has been a growing concern. For example, in 2014 Dutchess County had 655 Lyme diseases cases, according to New York state.
Gibson crafted language included in the recently-passed 21st Century Cures Act that, among other things, creates a permanent working group. The group will have a direct say in federal research priorities.
The Department of Health and Human Services secretary will also be required to consult with the group and submit a strategic plan to Congress within three years that includes benchmarks to measure progress.
It almost didn’t happen. The story of how it was saved should inspire anyone who thinks grassroots efforts can’t achieve meaningful goals.
Some background first:
The 21st Century Cures Act is a sweeping measure, of which the Lyme language is only a small part. The legislation has been subject to other debates that have nothing to do with Lyme.
That likely is why it took much longer to get it through both the House and the Senate than Gibson and U.S. Rep Sean Patrick Maloney predicted when they celebrated passage of an earlier version in the summer of 2015, the press conference held right here on the patio of the Poughkeepsie Journal building.
Things looked hopeful for the Lyme community until the Sunday after Thanksgiving. That’s when a draft of the amended bill, approved by House and Senate negotiators, revealed the language essentially had been stripped out.
No longer would the Department of Health and Human Services be required to create the group. The wording had been changed from “shall establish” to “may establish,” which pretty much meant “won’t establish” the group. And even if the group was established, the new language had nothing about patients or their advocates.
It was clear certain members of Congress, and perhaps certain agencies, didn’t want these people anywhere near the table.
“We were just horrified,” said Jill Auerbach of the Hudson Valley Lyme Disease Association and a Poughkeepsie resident.
So while the rest of America was chewing on Thanksgiving leftovers and perhaps tuning into a Sunday night NFL barn-burner between the Denver Broncos and the Kansas City Chiefs, Auerbach, her husband Ira and Pat Smith, president of the national Lyme Disease Association, joined about a dozen others on a 10 p.m. conference call.
“We had until 5 p.m. Tuesday,” Smith said of a pending legislative deadline.
The small team reached out to Gibson and to U.S. Rep. Chris Smith, a Republican from New Jersey and co-chair of the House Lyme caucus, among others.
Most importantly, they connected with Rep. Kevin McCarthy, the House majority leader from California, whose daughter reportedly has battled the debilitating illness.
They argued the new Lyme language should be pulled out of the bill altogether. That would have looked bad for the House members who had touted the original measure in places like the Journal’s front steps.
Countless phone calls, emails and text messages went back and forth. Little by little, the language was restored.
The final battle, Pat Smith said, was over something those who suffer from chronic Lyme have always asked for: assurance that a “diversity of scientific disciplines and views” would be brought to the table.
“That,” Pat Smith said, “was the stickler.”
Connecting with McCarthy proved to be a wise move.
“In the end, Majority Leader McCarthy insisted to the Energy and Commerce Committee negotiators that (the original language) needed to be put back to the way it was as passed in the house (in 2015),” Gibson said in an email.
McCarthy was “proud” to ensure the language was preserved, spokesman Matt Sparks said.
And so should all those who worked behind the scenes.
“It was hair-raising. It was exhausting,” Auerbach said.
Smith had a message to any grassroots effort seeking to effect change: Be firm. Stand fast.
“You have to understand that those officials are down there representing us and our interests,” she said. “And when you have all of these sick people who are not being represented, you can’t roll over and let them get the best of it.”