Highlights from the TBDA Forum

Highlights from the TBDA Forum on March 11, 2013
by Eva Haughie
Empire State Lyme Disease Association, Inc
(proud affiliate of the Lyme Disease United Coalition, the LDUC) www.EmpireStateLymeDiseaseAssociation.org

Dr Laurie Glimcher, Dean of Cornell Weill Medical College, greeted us. She said she knew about Lyme disease, as she is a practicing immunologist and rheumatologist. She spoke about the new Balfour Research Center, across the street, gifted by Rene and Bob Balfour. She mentioned that if we don’t find new treatments for Alzheimer’s, there might be a breakdown of medical care. She said that from every one dollar that comes from the NIH, seven dollars and fifty cents comes back. Last but not least, she mentioned the patients and later, Senator Gillibrand commended Cornell Weill, saying that the entire staff at Weill is dedicated to improving the lives of patients.

US Senator Kristen Gillibrand (D-NY) was next, commended Senator Blumenthal, Congressman Gibson, Cornell Weill and David Roth, Co-Chair TBDA and Forum moderator. She spoke about the growing epidemic, a crisis largely gone ignored. Gillibrand said that in 2011, there were 24,000 reported cases which could be ten times higher.1 Her concerns: presence in the blood supply, that management starts with prevention, including vaccines for Lyme and all tick-borne diseases2 and that there is no standard or wholly reliable treatment – no testing, no cures. She ended with a description of what she sited as “Our Bill” and with a hope that we all work together.

Then US Senator Blumenthal (D-CT) was next. First he commended and thanked Gillibrand, Roth, Weill Cornell, etc. He spoke about arriving in the Senate two years ago and Gillibrand was already there, spearheading the effort. He said Lyme is a pernicious, dreaded disease and the story will come out that it was the patients who have spoken out. He also spoke about solutions: research and listening to the patients. He said Gillibrand’s bill will give patients a seat at the table for the first time. He said when he became involved, insurance companies weren’t listening and that in Connecticut, he worked for a mandate that insurance companies should cover what the doctor orders – always. He said underreporting is a major obstacle that impedes awareness and therefore solutions. Then, when he began his advocacy, as now, there is a need for doctor education and even in Connecticut, where Lyme began.3 He said that doctors don’t know enough, particularly for children. He wants steps taken to generate public consciousness.

Next, Congressman Chris Gibson (R-NY) began by thanking everyone once again and also praised his constituents and fellow activists Professor Holly Ahern and Chris Fisk for their great contributions. He told the audience that his district borders Connecticut but Lyme doesn’t know boundaries, an old Lyme joke but the audience laughed. Gibson said that we’ve made some great strides, including monies for testing and added that we don’t even have a test that picks up even fifty percent of cases of Lyme.4 He made a comparison of our activism framework to that of the AIDS advocacy. He spoke of the IDSA-CDC guidelines and how insurance companies hide behind these guidelines and that guidelines are supposed to be reviewed every five years. Gibson last remarks were that we are not anywhere near where we need to be and we have a long long way to go.5

Next, Senator Gillibrand introduced David Roth. Speaking of the epidemic, he said there were 33,000 reported cases in 2011 with the CDC admitting that this number could be anywhere from six to twelve times more actual cases. 1 Given a twelve times ratio, he said that with a continued growth, by 2020 there could be 600,000 cases per year and of that, a meaningful number will have chronic symptoms. He stated that treatment and care runs into the millions of dollars. He said there is a need for additional research funding.

Dr Roy Gulick, Professor of Medicine and Chief of the Division of Infectious diseases at Weill and attending physician at NY Presbyterian Hospital, was the next to speak. His presentation primarily represented the IDSA’s viewpoint on Lyme disease. In addition to other information, he offered this: that viruses, including tick-borne encephalitis, and parasites, particularly Babesiosis, are transmitted by ticks; that Rocky Mountain Spotted Fever is found in Oklahoma and other states that aren’t actually endemic for Lyme disease; that one tick can transmit up to three tick-borne diseases6; that 95% of cases are found in the Northeast and Michigan and Wisconsin, etc.; that to diagnose, the first step is to be aware of its existence. He spoke of the three stages of Lyme disease and their accompanying symptoms: “intermittent arthritis and rare neurological symptoms” were included in Gulick’s stages definitions. Protocols suggested by Dr Gulick for treatments were IDSA-type protocols. Interesting that Dr Gulick showed the CDC case definition for late Lyme disease where the CDC viewpoint included cardiac involvement whereas Dr Gulick’s slides did not seem to acknowledge cardiac involvement.

Next we heard from John McPherson, a nationally syndicated cartoonist and patient advocate. McPherson spoke about his experience as a Lyme patient. His story is familiar and his message magnifies our need.

Dr Richard Ostfeld, Senior Scientist and Disease Ecologist, Cary Institute of Ecosystem Studies, was the next speaker. He spoke about the worrisome traits of Borrelia miyamotoi, a new Borrelia he stated was recently discovered by a Japanese scientist and also recently found to be infective by Russian scientists. He said that between 6-73 percent of larval ticks are infected via the adult female to its eggs. He stated that there is no diagnostic test for Borrelia miyamotoi, which is named after someone named Miyamotoi. He also mentioned there is a need to worry about nymphs. Ostfeld said there is no data on threats, or what can co-occur with Lyme where you can have 2, 3, or 4 different infections from a tick bite.6 Ostfeld made several suggestions, including funding for “all of the above,” innovative tick control, and surveillance outside the current range.

Head of Transmissible Diseases American Red Cross, Dr David Leiby, spoke next about the potential for transmission of tick-borne diseases via blood transfusion. There are seven cases of Anaplasmosis reported and it seems, somewhere between 159 and 162 cases of Babesiosis that occurred via blood transfusions. According to Leiby, the Red Cross bans only one tick-borne disease: Babesia. Although Leiby stated that Babesia is a benign flu-like disease, the CDC information is that over thirty years of reporting, of their 162 Babesia cases from transfusion, 28 people died. Leiby pointed out that although Babesia can be fatal for children and seniors, he suggested that those who get transfusions are predominantly in these age categories and in medical need before the transfusion. Leiby also pointed out from the CDC graph, that Babesia is reported as transmitted during every month of the year. Leiby also admitted that there is severe underreporting. Regarding Lyme disease, Leiby stated that there are no reported Lyme cases from blood transfusion which according to Leiby, explains why Lyme disease is not considered by the Red Cross to be transmitted via blood transfusion.7 He said that blood screening tests could be used to screen donors.

Dr Brian Fallon, the last speaker, told us that there is good news from science. He’s especially excited about the NIH study where people volunteer to be bitten by ticks. He showed an old picture of Blake’s Job and he likened us to Job, where we must be either making it up or we are being punished supernaturally. Dr Fallon stated at least six studies where he believes persistence of Borrelia is proven. He said in some instances, forty percent of patients don’t get better. In addition to Borrelia persistence, he gave other possibilities for treatment failure including malfunction of the brain, autoimmune issues or a heightened immune response. He said there’s a need for better education.

Moderator David Roth then asked questions and generated an interesting debate between Doctors Gulick and Fallon. It seems that although they both carefully read the same exact studies, they came away with diametrically opposed conclusions.

Although Roth still had questions, Ira Auerbach, patient advocate, was given the floor. Ira commented that twenty one years ago in 1992, Durland Fish of Yale discovered the Borrelia which has been attributed to the Japanese, but Fish’ discovery was ignored due to a “lack of funding.”8

Dr Alan MacDonald also contributed and received a hearty and enthusiastic applause for his comments and for calling attention to the criminality of our present testing methods.

(The Forum was adjourned before we could hear the remainder of David Roth’s questions or additional contributions from the audience. See TBDA.org for the Forum.)

1 It is not entirely surprising that Senator Gillibrand and David Roth stated different numbers for reported cases; we have only approximations and estimations due to underreporting.

2 Vaccines are considered to be preventative; 2002: the first Lyme vaccine was deemed by the US Congress as harmful to enough recipients that they passed a federal law for it to be taken off the market. Gillibrand and other panel members suggested vaccines for prevention at this Mar 11, 2013 Forum.

3 Lyme was first recognized as a disease in Lyme, Ct; however, where Lyme, or Borrelia, began – seems to be debatable.

4 Worth looking at http://www.sciencemag.org/site/products/lst_20130301.xhtml 10 companies currently making Western Blot instrumentation with potential for high accuracy.

5 Congressman Gibson’s candor about how long we might have to wait for change is appreciated; considering this, we need emergency measures for patients now!

6 Six TBDs mentioned: Tick-borne encephalitis, Babesia, Anaplasmosis, Ld, RMSF, miyamotoi

7 See scanned image of interesting statement from Red Cross web site. Here, there are rules for blood donors who have had Lyme disease, with donations banned for “chronic Lyme disease.”

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