July 26, 2014
Maryland Lyme patients, family members, group leaders and doctors,
For the past two months we have been doing a boat load of research, editing, bringing groups together, drafting letters, conference calls, etc.- all associated with a federal Lyme disease bill. This work brought me together once again with patient advocates in the Lyme community who I consider to be some of the best of the best for addressing Lyme related bills.
This "surprise bill" (HR- 4701) was NOT something our national or state groups planned to submit or work on this summer. Instead it was conjured up by a few people behind the scenes (political motives and otherwise) who have a pressing desire to "pass a bill", often for the sake of just passing a bill.
Those involved with pushing the sponsor (Chris Gibson- NY) to introduce a Lyme bill did not do what is most important before thinking about legislation, which is to educate before they legislate. This is a huge problem since hundreds of legislators may soon be asked to "do something" about this bill and most haven't even read it and few have any in depth, if any knowledge at all of our unique situation.
Additionally, some politicians may have loyalties or strong ties to those who we butt heads with on a regular basis, and some may purposely try working in a fury to undermine any Lyme bill for a number of reasons. One Maryland Congressman of particular concern in our area is Andy Harris- a Hopkins doctor practicing on the eastern shore and a staunch IDSA supporter- who has stepped in to destroy bills in the past.
[For the record- I truly wish people would STOP approaching politicians with their some times well-intended, but more often than not self-serving grandiose ideas, causing the rest of us to have to deal with disaster after disaster.]
Since the original proposed bill was unacceptable to patient advocates it had to be addressed to prevent causing all of us and our future generations any harm- if at all possible. The LDA and its affiliates worked very hard to accomplish this task at hand and did an admirable job, as have the other group leaders who joined in to help.
However, in my opinion, even with the LDA and others help, at best the new bill was mediocre due to interference from the NIH/CDC and others. It was certainly not something I'd want to 'take home to mom' or brag about and it caused me great concern.
Please know, again, much credit goes to the LDA and other group leaders for their hard work and endless efforts in spite of the end result. They didn't have much to work with from the start and had a lot of pressure on them to drop everything else and try to fix this bill.
After several more unacceptable drafts were sent to us by the sponsor (Congressman Gibson- NY), and a big mistake* was made by this same sponsor in the early phase of the bill process, and the typical interference was experienced by NIH/CDC and "Congressman Frank- who is not our friend- Pallone" and others, the bill is currently in its final so-called presentable version barring any additional amendments or changes that might be made before I can even finish this letter to you.
*Note- the bill sponsor, for whatever reason, approved and signed off on the wrong bill (a substitute slipped in at the last minute) which allowed the totally unacceptable substitute bill to move forward from the House Health Subcommittee and go straight to the full Energy and Commerce Committee where it is now waiting in limbo for some action.
The Bill- The bill was designed to form a working group, similar to a task force, that will include seven federally employed members- including some from the NIH, CDC, Assistant Secretary of Human Health, FDA, and other agencies the Secretary of Health deems appropriate.
It also allows for seven additional non-federal members- with one to come from a non-profit Lyme disease support group or organization. It calls for a researcher or scientist with expertise, a Lyme patient and family member, a doctor who has treated Lyme and tick borne diseases, and the rest will be unspecified "others" that the Secretary of Health determines has "scientific" expertise and will be "beneficial" to this group.
The bill allows its non-federal members to be reappointed after serving a four year term (good or bad members- we have no say in the matter). It has no sunset clause or ending date, in other words, it is forever. It currently contains the words "chronic" and "persistence", but my guess is they may be the first things removed if/when the bill tries to move forward. And still, only a "mention" of the words are buried in the bill.
The bill allows for minority opinions to be presented along with the formal reports and the reports will be posted online for public viewing.
My opinion- The bill is slated to be moved forward in the House before the election in an attempt to get more votes for the sponsor (Republican). It was not designed to get us the best deal, only "a" deal of some sorts. In my opinion, a bill should be designed to get the best outcome for our patients and doctors without hurting people in the process. This bill does not fit that description.
My thought is the deck (panel) could possibly be stacked against us from the beginning, as we've seen happen so many times before. Depending on who the actual members are, we may have a slightly or even totally unfriendly working group responsible for making minor to life-altering Lyme related decisions for us. Forever.
As you know we already have that situation going against us, but to date it isn't in the form of a law that orders less desirables to remain "in charge" of us and dictate how it will be with our future generations. A law is a law, not just another failed attempt to make ourselves heard. The results, unlike some of the other attempts to get us up and moving, are permanent.
I suspect (due to past bill history), and I don't know for sure, but some people may attempt to alter/amend the bill and those changes may not be favorable to Lyme patients. Again, I could be wrong, however, the sponsor just reported that the IDSA is now getting involved and the House Democrats on the Energy and Commerce Committee (Pallone, etc) have decided they do not want the bill to pass in the current form. They are the ones who "slipped" the bad version of the bill in the mix, in place of the acceptable one, just before an earlier vote. In other words, they are not to be trusted in my opinion.
If the bill does pass out of the Energy & Commerce Committee and on the floor "as is" I still don't feel we will greatly benefit from its provisions. I might even go so far as calling it a potential train wreck looking for a place to happen. This is due to the long history of really bad outcomes we've had when dealing with the government agencies over Lyme disease issues in the past- not due to the Lyme Community's efforts.
As you all know, the IDSA/CDC/NIH have proven to be very skilled at twisting that which is good into bad in order to have their way with us, and over us.
Anyhow, after all of us working so very hard and sweating over this situation there was a vote two nights ago to determine if each of the group leaders would support the most recent version of this bill or not.
I voted "no". After much research and consideration I did not feel it was in our best interest to support this bill. I have always believed having no bill is better than being saddled with a bad bill.
I also believe NOT having this bill passed by election time (a Republican strategy meant to benefit the sponsor during the upcoming election), or not having a "working group" set in place immediately will cause patients and our doctors any further harm.
I don't feel any patients who are suffering should be used as a political pawn or be thrown to the wolves by anyone, especially when it is for their own career advancement.
I believe we can and should wait for the right bill to be offered to us, one that comes forth with sincerity, understanding and concern for OUR specific situation- and one that will actually help patients and their doctors without risk losing everything we've worked so hard to accomplish.
I believe having a permanently established working group assembled and its actions dictated by a quickly thrown together bill, especially if our history of dealing with these government agencies repeats itself, could possibly be very destructive and set us backward.
Please make no mistakes, once we are stuck with a bad bill/law it is nearly impossible to reverse the actual law or repair the damage it can cause.
However, during the voting process I was in the minority. The bill was supported by some of the group leaders and they've decided to try to push it forward through Congress with your assistance.
Therefore, I encourage you to familiarize yourself with the bill ASAP, and decide how and what you want to do if you are notified to take action. Congress is scheduled to take a vacation this coming week for 5 weeks, then there will be approximately 3 weeks with Congress doing business in DC as usual before the November elections.
Keep in mind, it is doubtful the bill, if passed in the House, will be passed in the Senate. First, not enough time (working days) before the end of the current two year session. Second, there will be more pressing issues for Congress, such as the immigration issue, a possible war, etc.
Third, there are hundreds of bills sitting in a drawer in the Senate that have already been passed by the House. The Senate leader is not allowing them to be introduced so they can be voted on. (Politics) Therefore, I expect it will be difficult if not impossible to get a Lyme bill past the stacks of other waiting bills and onto the Senate floor for a vote, especially since this bill was designed and introduced in the House, and for the House, to promote the sponsor, and not the Lyme disease issue.
While writing this letter this afternoon I noticed the bill has been labeled for "mark-up", which means it has already, in less than 48 hours, been tossed in the ring to have some action taken on it before Congress goes on vacation. This action is scheduled for Tuesday and/or Wednesday (July 29 & July 30th, 2014). If not, it may come up again once Congress returns and be pushed through quickly before the election to help the sponsor.
I hope the explanations regarding the bill and my actions are understandable and well received. My effort to keep you protected from things that go bump in the night (besides ticks) and to keep you informed of what is going on is of utmost importance to me, and your input is always appreciated and valued.
Sincerely,
Lucy Barnes
AfterTheBite@gmail.com
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