TOUCHED BY LYME: Questions about Lyme in #CuresNow bill
The 21st Century Cures Act, a medical research and innovation bill (also known as #CuresNow) is a matter of fierce debate—throughout the country and within the Lyme community. An amended version passed in the House November 30, and the Senate is expected to vote on it next week.
The whole thing is something like 1000 pages long, with a couple of pages that address tick-borne diseases. I’m only going to talk about the TBD portion of it in this blog. It’s important to understand some context.
For years, the Lyme community has worked for legislation on the federal level, only to have it shot down by various factions each session. In 2015, New York Congressman Chris Gibson managed to have Lyme language included in the version of #CuresNow that overwhelmingly passed the House last year. But nothing happened in the Senate.
This month’s “lame duck” session of Congress is the last chance for #CuresNow. If it doesn’t pass this month, it’s back to the drawing board for everybody—not just the Lyme community.
Then, over the recent Thanksgiving holiday weekend, we learned that the Senate was willing to take up #CuresNow only IF the House first accepted certain amendments in the lengthy document.
Guess what? Tucked inside some of those amendments was the evisceration of the section on Lyme disease. It didn’t disappear. Rather, it was turned into something that the Lyme community would abhor. For example, Gibson’s version had provided a mechanism for Lyme patients, their doctors, and researchers to have input into federal policymaking for Lyme disease. (Something allowed for most diseases, but never for Lyme and other TBD.) The new version excised that, replacing with language that made things worse–not better–for the Lyme community.
By Sunday night, November 27, a hastily convened group of Lyme advocates held a conference phone call to figure out what if anything we could do to salvage the situation. At the time, it seemed like trying to get Congress to drop the TBD section completely was our only hope. Some of you may have received messages asking you to implore Congress to exactly that.
However, it turned out that dropping the language was completely out of the question at that point. That was a simple fact. However, rather than just rolling over and playing dead, the community coalesced around an amazing lobbying effort headed up by Pat Smith of the Lyme Disease Association.
Without Pat Smith’s extraordinary efforts in a short period of time, with support and assistance from a host of others—both inside and outside the halls of Congress—the Lyme community would have been stuck with a really bad version of the bill.
I encourage you to watch Congressman Chris Smith’s comments to the House before yesterday’s vote.
Click here to read an account from the Asbury Park Press (New Jersey):
The House vote was 392-26. Senate action is expected next week.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.