LYMEPOLICYWONK: Meeting with Dr. Ben Beard of the CDC–The Importance of Dialogue and Lingering Concerns
Dr. Ben Beard of the CDC met with directors of CALDA on March 10 as part of an effort to reach out to Lyme patient groups across the nation. After meeting with CALDA, he attended the regularly scheduled meeting of the California State Lyme Disease Advisory Committee, which was created under legislation sponsored by CALDA to encourage dialogue with the California Department of Public Health. If you have not met Ben Beard before, he is both engaging and likable and has a measured tone. CALDA believes that respectful dialogue is essential to moving forward for the Lyme community, and we are pleased with this first step. We also believe that patients need to be meaningful participants in any solution for Lyme disease. We raised a number of concerns about the CDC's Lyme disease policies, including the need to treat to cure disease, the education of physicians and government funding of research. Here are the issues that loom large.
Prevention: In his presentation, Dr. Beard emphasized that the CDC sees its primary role as focused on preventing Lyme disease. Patients support this goal. However, sick patients need access to treatments now that may restore their health. Treatment options need to remain open while science is unfolding. This is where we believe the primary goal should be set.
Educating Physicians: One of the CDC’s goals is the education of physicians. Sounds good, right? Until you know the details, which are not overtly stated.
The CDC currently has an IDSA training module on its website and links to the IDSA guidelines. Two studies conducted by IDSA members found that the IDSA treatment guidelines for many different diseases are based on very low levels of evidence-more than half of their recommendations are based on no more than expert opinion and anecdote. This is also true in the IDSA’s Lyme disease guidelines, where 38 of the 71 recommendations are based on expert opinion or anecdote and many others are based on very low levels of evidence.
So, despite the fact that IDSA promotes its treatment guidelines as “evidence based”, those guidelines fall far short of the mark. And, where the evidence is lacking, conflicted, or poor, the IDSA guidelines prohibit treatment. This ties the hands of physicians and patients who remain ill. Treatment failures under the IDSA guidelines are unacceptably high. IDSA does not recognize or treat chronic Lyme disease, and it doesn’t provide treatment options to patients who remain ill after IDSA treatment protocols fail, as those protocols do too often. Educating physicians to conform to the IDSA guidelines harms patients. If this is what the CDC means by education, we’d rather have them stick to prevention, honestly, under the principle of first do no harm.
Funding of a 5 year study on chronic Lyme: Dr. Beard’s presentation also highlighted the CDC’s funding of a 5 year study looking at long term complications of Lyme disease. Sounds good, right? Until you realize (again not overtly stated) that the funding was granted to Dr. Gary Wormser–the lead author of the IDSA guidelines who was described by the Connecticut Attorney General as holding “a bias regarding the existence of chronic Lyme disease”. Preconceived viewpoints held by researchers may drive study design, execution, and conclusions. Dr. Wormser’s views on the topic of long term complications of Lyme disease are probably best summarized by the IDSA guidelines he penned: “In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection.” Moreover, this study looks an awful lot like the Nowakowski study that Wormser participated in, published in 2003, which concluded that after 5 years, 90% of patients no longer have symptoms.
This conclusion conflicts with those of many other studies (Ashe, Trieb, Shadick) which show between 28-50% of patients have persisting symptoms years after treatment. The discrepancy is probably explained by the fact that in calculating the 90% success rate, the Nowakowski study failed to use the appropriate “intent to treat analysis” to account for its 39% drop out rate. Using the proper intent to treat analysis on Nowakowski would increase the percentage of patients who remain symptomatic from 10% at 5 years to 55%, which is more in keeping with previous studies. These statistical choices can make all the difference in the world and the bias of a researcher may influence the method of analysis chosen.
Make no mistake, dialog is important, but so long as the CDC continues to promote the IDSA viewpoint, exclude patients from meaningful participation in health care policy, and fund studies by researchers with known biases, the CDC will continue to be viewed as part of the problem rather than part of the solution for Lyme disease.
You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.
Is it any better to have a likable rep of CDC than an obnoxious one, when the approach to lyme disease is still wrongheaded and injurious to public health?
What is the purpose of the CDC reaching out to patient groups if they continue down the same path, unenlightened by what they hear from the patients?
Dear Colleagues and Patients!
I do not want to be debating the chronicity of that disease having chronic pathogenesis from the infestation or reinfestation, and can be hidden/subclinical for years or even decades.
Instead of that, I suggest to determine the infestation of the carefully removed tick(see our 3D-animations http://www.lymenet.hu) and
the reactivity of that people's sera for having informations about their re-infection.
Your Hi-Tech society has the possibility to collect these informations for the better treatment.
Best
Bela
Great blog post, Lorraine!
I'd be interested in knowing what the purpose is of Dr. Beard's meetings with patient and advocate groups around the country. Many of us have had the opportunity to provide him and other CDC representatives with comprehensive and well-articulated facts.
Is the CDC truly hearing us, and ready to address the issues we raise? My hope is that they are, but I'd like to see some indication that that is so.
Sandy
Reminds me of a slick, likable salesman selling you something detrimental.
Why is Wormser getting so much research money? Are vested interests to blame?
I really have no hope that the truth will come out while I live.
(CDC)'s primary role should ONLY be funding for 'prevention' (not education, diagnoses, surveillance and treatment) of tick bites,Lyme and associated co-infections – in schools, doctors offices, urgent care clinics and ER's.
Myself, as a licensed RN, and my (5)children (kindergarden thru university graduation) have been deprived of Lyme and associated disease education, surveillance, diagnoses, prompt and proper treatment.
With repeated misdiagnoses as "flu, virus, allergies or all in your head" w/ progressive debilitating neurological, cardiac, neuromusculoskeletal, gastrointestinal, endocrine, emotional, financial, educational and vocational potential life-long health consequences, unable to function – w/ dependency and disability at federal and taxpayers' expense.
Obama needs to appoint Columbia Lyme Research Institute and nationwide affiliated Specialists for 'evidence-based' education, surveillance, diagnoses and treatment of Lyme disease, co-infections and this leading epidemic injurious to public health and our innocent young children without voices – denied treatment, many who end up isolated from their family, peer, and society in jail, prison and/or voluntary/involuntary psychiatric institutions, costing our nation billions of dollars every year.
Please notice the fact that a person who might appeal to the suffering many was chosen to bridge the gap. Better, but no cigar yet.With people like Gary Wormser doing research, getting funded, one has to wonder ,what they are really thinking. With his choice, I think we know.Slick packaging of same old same old.CDC,you are not there yet.You haven't found religion yet.Until you do, we will all have our doubts and disbeliefs in you.There's something very bad that they don't want us to know.Reveal whatever they know, and they know something, so that we can try to begin to at least get a true understanding of what they did in the past and why they have consistently put a spin on this issue of chronic Lyme Disease.
I just read the piece on Under Our Skin where they state that when they were setting up to interview Dr. Burgdorfer, someone from the NIH appeared to make sure he didn't talk about certain things. What certain things? What are they hiding? What is there about a disease that requires secrecy?
I think its good CALDA has a contact. You have to start somewhere, and its going to be a culmination of small steps that will eventually help lyme patients.
The CDC sent a PR man.