Patients Please Help Us Pass This Bill!
By Phyllis Mervine, President of LymeDisease.org
We want Senator Blumenthal’s bill, S. 1503, Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015, to pass. It will only pass if enough people affected by Lyme write and call their legislators. So far several thousand have used our Voter Voice tool to send emails, but this is only a fraction of the patients in this country. If everyone participated, imagine how many emails we could generate! Hundreds of thousands!
Passing legislation is not the END, but the BEGINNING of our serious work. Once the bill passes, patient advocates will have to remain involved to ensure that everything goes according to the program.
The bill sets up an Advisory Committee with patients and patient advocates on it, as well as doctors and scientists. It emphasizes that the membership must represent the broad spectrum of viewpoints held within the scientific community. This is good because it means people from OUR side must be included. If the bill passes, we will be working to ensure that the right people are on the Committee, just as we did when the Institute of Medicine held their hearing and chose IDSA guidelines lead author Gary Wormser for the keynote speaker. (He did not end up as keynote speaker.)
The bill is specific about what is to be accomplished. This is good because progress will be measured against these goals and if goals are not met, we will be applying pressure in every way we know how. The fact that the Lyme community has grown so huge and so diverse helps us. Pressure can come from any direction and in any form. People will be watching.
Bills are never perfect
The language of the bill is not perfect–legislation never is. But it is the end result of almost 20 years of effort that has had input from many individuals in the Lyme community. In the end decisions about the language are made by the author and reflect his/her political reality and what s/he can realistically expect to pass. We consider S. 1503 is a step in the right direction and a building block for us to build a larger structure on.
In his 2012 speech at the first hearing on global challenges of Lyme disease, Congressman Chris Smith lamented the failure to pass Lyme bills he introduced in 1998, 1999, 2001, 2004, 2005, 2007, 2009, and 2011. Instead of scraping by with less funding than the government gives to West Nile virus, we could have had millions of dollars invested by now, in prevention, developing new tests, finding a cure.
For those who are interested in the history of Lyme legislation, check out the links below to stories I wrote back in 2009 about our previous attempts to pass Lyme bills. It is because of my involvement with these previous bills that I feel passing this bill is so urgent. Without a seat at the table we have no institutionalized oversight over whatever the government chooses to do. An Advisory Committee is a first, basic step. Government agencies don’t particularly want patients looking too closely at what they are doing or telling them what to do. But this bill will put patients on the front line. We will need very knowledgeable and capable people at that table to be able to hold their own in that environment. I know, I’ve done it on the NIH Advisory Panel for the Clinical Trials. It was an eye-opener. We will need strong representatives on that Committee. I am hopeful that we will seat the right people.
Now the Senate has only a few weeks to get this bill passed. Please add your voice to encourage your representatives to support S. 1503. If you prefer to CALL, that might be worth even more and takes only a minute (you will speak to an aide who will tally your opinion). You can find your legislators’ phone numbers HERE by typing in your ZIP code. It’s super easy.
Click on the links below to read
I never completed Part 9 – Smooth Sailing