I think it is time to clarify some of the issues surrounding both the Lyme advocate meeting held at CDC in Ft. Collins CO, June 2013 and the “no Lyme disease in the South” controversy. In early 2013, I wrote to the Centers for Disease Control & Prevention (CDC) and presented the objections of the Lyme Disease Association (LDA) to the CDC’s website statement that Lyme does not occur nationwide. I asked for all the pertinent data used to support that statement. The goals of LDA in this context are that threats of disease be realistically assessed and that patients not be condemned to unnecessary suffering because they are denied the opportunity for early diagnosis and safe and efficacious treatments. I am sure everyone agrees that patients and physicians have the right to the best, most up-to-date data and science.
CDC’s initial response included this rationale: (1) the distribution information on the tick vectors of Lyme disease and specifically that Ixodes scapularis is limited in distribution to the eastern and upper mid-western regions of the U.S. and Ix. pacificus to the west coast, (2) that it is well-established from the literature that Ix. scapularis ticks in the southern U.S. [GA, FL, AL, MS, etc] do not typically bite humans, especially the nymphal stages that are most important for transmission of B. burgdorferi and (3) the relatively small numbers of Lyme disease cases reported from states where Ix. scapularis and/or Ix. pacificus are not present can almost entirely be shown to be travel-related cases that were not acquired locally, hence the use of the term “does not occur” nationwide.
CDC said that LDA could have an opportunity to further discuss this issue if we disagreed, which we did. In conjunction with CDC’s “no Lyme in areas such as the South and central states,” I suggested that the flawed surveillance system is heavily weighted against disease even being reported there: “I think discussions on the failures of Lyme surveillance and how that impacts upon patient diagnosis and treatment, research dollars, health care spending, need to happen, and since I like to assume we are all working for the same goal, I would like to propose that we do what it takes to begin that discussion in an open and transparent way, with all at the table to provide and review available evidence. Many lives & dollars could be saved by such a move.”
LDA then requested all supportive documentation from CDC showing that reported cases in other states were almost entirely travel related. CDC admitted they did not have that data nor could they direct us to any entity which had such information. They sent a box of peer-reviewed literature supporting the remainder of their “no Lyme in the South and central states position” such as geographic distribution of Ixodes ticks and the “ticks in the South rarely bite humans” literature, which LDA then began to analyze.
In the meantime, CDC contacted LDA and suggested a meeting at CDC Ft. Collins with Lyme leaders from various geographic regions. Several groups were invited by the CDC and many of the Vector-Borne Disease Division personnel were at the table, as well as a representative from CDC Atlanta, when the meeting was convened on June 11, 2013. Seven groups including LDA attended, and 3 organizations did not attend in person but by speaker phone for a 2 hour portion of the all day event ─ unfortunately, they were only able to hear a small portion of the whole day’s proceedings─ a day packed with meetings, discussions, lab tours, and an informal dinner with all attendees.
In the group presentation section, I gave the allowed 10 minute PowerPoint which provided factual data that placed the CDC “no Lyme in the South and Central states” argument in serious jeopardy. The papers which CDC cited contained very old data, some citing journals decades old, some of which did not even support what was touted, and many did not contain current statistics from states they place in the no/doubtful Lyme category, some used maps of projected deer tick populations that current research had long since proven were out of date. Notwithstanding claims to the contrary, according to researchers, physicians, and tick-bite victims in the South, deer ticks are certainly biting people. No one questioned my presentation then or in the subsequent 3+ months.
I have since read all the speculation on the net and in newspapers about what did or did not occur or what was/was not accomplished at this meeting. I am not sure anyone would be naïve enough to think that government Lyme policies would be immediately changed as a result of this one meeting, if so, they certainly set their expectations too high. Perhaps some people feel that there is not any reason to meet with CDC anyway, with the rationale that we can get what we want without meeting with them. I have been involved now in Lyme work for almost 30 years as an advocate. As frustrating and absolutely exasperating as it has been and may continue to be, I can tell you that the major federal public health agencies need to be part of the solution in order to achieve more than very fragmented, partial successes in our battle against Lyme & other tick-borne diseases.
What needs to be recognized by all is that two agencies under the US Department of Health & Human Services (HHS), the CDC and the National Institutes of Health (NIH), are the ones designated by Congress with responsibility to oversee disease areas which most impact Lyme patients. They are the ones who set policies, receive grant funds to distribute, and in general, are “in charge of” diseases. To complicate the chain of command with Lyme, the CDC in Ft. Collins, CO is the home to the Vector-Borne Diseases Division which handles Lyme and other tick-borne diseases and which is under the direction of CDC Atlanta, GA, which is under US Department of Health & Human Services (HHS). Therefore, for something to be accomplished with Lyme, one chain goes from CDC in Colorado to CDC in Georgia, and, if it is perceived to possibly overlap another agency’s jurisdiction, on to HHS in DC. HHS is part of the executive branch and overseen by the Executive Office of the President. With any “non-political” disease, this process is not an easy one, but with one as complex as Lyme, in such a contentious climate, you can be sure substantive decision-making is going up the chain of command and changes to policy will be well vetted and time consuming.
This meeting was like the first meeting at a negotiations table, parties get to meet each other face-to-face. They get to hear positions discussed at the same table, and in our case, we had a lengthy session where each person could discuss what they did not like about what the “other side” was doing in the “Lyme wars.” That helped people to see real people behind the issues; it put a face on the disease. There was passion, disagreement, and intelligent discussion of the science and of the lives affected. There was no shouting or disrespect. A list of attendee-suggested future actions was created─ the CDC said it would set up some of the meetings we felt were most important, and it has since reiterated they will proceed with that agenda. We did have a late August conference call with CDC regarding the materials released by CDC at the Boston Lyme disease conference regarding confirmation that Lyme cases are indeed ten times more prevalent than reported surveillance case numbers indicate. That fact was not a surprise to any of us advocates who for many years have used a “Lyme is underreported by a factor of ten” qualifier based upon past CDC remarks that Lyme was that vastly underreported for surveillance purposes.
My position is that this CDC-advocates’ meeting was successful, as opposing parties met, talked, presented their programs and issues, interacted on a personal level, and CDC has committed to moving forward with some of the items placed on the “wish list” of the advocates. I know there are good people on both sides who would like to see the Lyme disease issue resolved. Like everywhere else in life, unfortunately, there are others who would like to keep the pot stirred and do not want the two sides to try to find common ground.
Speaking for LDA, we will try to continue to work with the agencies in government that have responsibility for dealing with Lyme, but we will also continue to speak out using science and statistics to promote policies which support the current realities of tick-borne diseases and to overturn policies supported by obsolete data and/or specious analyses which continue to hurt Lyme patients and physicians, e.g.., CDC’s “no Lyme in the South,” a policy which delays diagnosis and treatment, skewers surveillance, and suppresses relevant research. Dr Kerry Clark’s recent research on southern Lyme, partially funded by LDA, is a step in that direction, and rather than “contradicting” other older research, I think it shines new light on areas on which other researchers have feared to tread lest they be mired in the political morass of Lyme disease—where researchers may be told “don’t go there or you may never publish again.” Dr. Clark’s research postulates there may be additional factors besides those considered by CDC to explain the cases of Lyme in the South, factors that might help explain the fact that the FL Dept. of Health indicates that 30% of Lyme cases from 1999-2008 occurred in state, not from travel.
I am sure that many of you, like me, have been extremely frustrated by reading in countless studies from the ’80s through today recommendations for further studies to move the field forward– studies which far too often were not pursued. To facilitate forward progress, it would be productive and responsible for CDC and other agencies to refrain from reflexively repeating statements and positions based on fragmentary and often outdated data. It is time to formulate policies based on current and convincing data and support research using cutting edge techniques which can provide the answers we all need to stop the spread and devastation of Lyme disease, not only nationwide, but also worldwide.