Curious on that last bit, for years I tried to track down his testimony in vain and was unable to find it online. Then, more recently I found the entire document on the internet archive site, found here:
I also have a printed copy of the actual hearing notes in my possession to check against the online version for accuracy in transcription.
Part of why I wanted it was because so many people had mentioned his testimony but no one had actually posted it anywhere it had been mentioned, and searches online when I first got ill with Lyme disease left me empty-handed.
Now the mystery is solved. The bulk of the testimony that everyone kept mentioning without citing it was this (very minor grammatical and typo edits made - refer to original text above for comparison):
Dr. Burrascano. Thank you very much for holding this commit- tee meeting, and again, thank you for the very nice introduction. You have heard today that there are many problems in the field of Lyme disease, and I want to address one of the core problems that you may not be aware of. Some have called this the "Lyme dis- ease conspiracy." There is in this country a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight. Unfortunately, many of them act unscientifically and unethically. They adhere to outdated, self-serving views and at- tempt to personally iscredit those whose opinions differ from their own. They exert strong, ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed. They work with Government agencies to bias the agenda of consensus meetings and have worked to exclude from these meetings and scientific seminars those with ultimate opin- ions. They behave this way for reasons of personal or professional gain and are involved in obvious conflicts of interest. This group pro- motes the idea that Lyme is a simple, rare illness that is easy to avoid, difficult to acquire, simple to diagnose, and easily treated and cured with 30 days or less of antibiotics. The truth, however, is that Lyme is the fastest-growing infec- tious illness in this country after AIDS, with the cost to society measured in the billions of dollars. It can be acquired by anyone who goes outdoors, and very often goes undiagnosed for months, years, or even forever in some patients, and can render the patient chronically ill and even totally disabled despite what this core group of physicians refers to as "adequate" therapy. They feel that when the patient fails to respond to their treat- ment regimen, which is a common occurrence, it is not because the treatment has failed, but because they have developed a new ill- ness, what they call the "post Lyme syndrome." They claim that this is not an infectious problem, but a rheumatologic or arthritic malady due to activation of the immune system. The fact is, this cannot be related to any consistent abnormality, but it can be related to a persistent infection. As further proof, vac- cinated animals now in the vaccine trials whose immune system has been activated by Lyme disease have never developed this post Lyme syndrome. Yet on the other hand, there is a great deal of sci- entific proof that persistent infection can exist in these patients be- cause the one-month treatment did not eradicate the infection. Indeed, many chronically ill patients whom these physicians have dismissed have gone on to respond to, positively, and even re- cover, when additional antibiotics are given. It is also interesting to me that these individuals who promote this so-called "post Lyme syndrome" as a form of arthritis depend on funding from arthritis groups and agencies to earn their liveli- hood. Some of them are known to have received large consulting fees from insurance companies to advise the companies to curtail coverage for any additional therapy beyond the arbitrary 30-day course. And this is even though the insurance companies do not do this for other illnesses. Following the lead of this group of physicians, a few State health departments have now begun to investigate, in a very threatening way, physicians who have more liberal views on Lyme disease diag- nosis and treatment than they do. And indeed, I have to confess that today I feel that I am taking a personal risk, a large one, be- cause I am stating these views publicly, for fear that I may suffer some repercussions despite the fact that many hundreds of physi- cians and many thousands of patients all over the world agree with what I am saying here today. Because of this bias by this inner circle, Lyme disease unfortu- nately is both underdiagnosed and undertreated in this country to the great detriment of many of our citizens. Let me address these individually. With underdiagnosis, the first problem is underreporting. The current reporting criteria for Lyme disease are inadequate and miss an estimated 30 to 50 percent of patients. Some States cur- tailed their active surveillance programs and saw an artificial drop in reported cases of nearly 40 percent, leading the uninformed to believe incorrectly that the number of new cases of Lyme is on the decline. The reporting procedure is often so cumbersome that many phy- sicians have never bothered to report cases at all, and some physi- cians who have reported a large number of cases have found them- selves targets of State health department investigations. Finally, too many physicians and Government agents rely on the notori- ously unreliable serologic blood test to confirm the diagnosis. That brings me to my second point, which is the poor diagnostic testing. It is very well-known that the serologic blood test for Lyme is insensitive, inaccurate, not standardized, and misses up to 40 percent of cases; yet many physicians, including many of those re- ferred to above, and the senior staff at CDC and NIH, insist that if the blood test is negative, then the patient could not possibly have Lyme. This view is not supported by the facts. Lyme is diag- nosed clinically and can exist even when the blood test is negative. The Rocky Mountain Lab of the NIH, which is the country s best laboratory for Lyme research, had developed an excellent diag- nostic test for this illness nearly 4 years ago, but further work on it has been stalled. Incredibly, if not for private donations to the Government from the National Lyme Disease Foundation, this and other related research would have had to be abandoned. Yet many physicians believe that thousands of dollars of grant moneys al- ready awarded by the Government to other outside researchers is poorly directed, supporting work of low relevance and low priority to those sick with Lyme. In spite of this, their funding continues, and the Rocky Mountain Lab is still underfunded. The third point is that the university and Government-based es- tablishment deny the existence of atypical presentations of Lyme, as some of those you have heard today, and the patients in this cat- egory are not being diagnosed or treated and have no place to go for proper care. The result of all this is that some Lyme patients have had to see. in my experience, as many as 42 different physicians over several years before being properly diagnosed, and also at tremendous cost to themselves. Unfortunately, the disease was left to progress during that time, and these patients were left forever ill, for by that time the illness was not able to be cured. Under the second category of undertreatment, number one is be- cause the diagnosis is not being made properly in many patients. Second, university-based and Government-endorsed treatment pro- tocols are empiric, insufficient, refer to studies involving inad- equate animal models, and are ignorant of basic pharmacology. They are not based on honest, systematic studies or on the results of newer information. Third, after short courses of treatment, patients with advanced disease rarely return to normal, yet many can be proven to still be infected and can often respond to further antibiotic therapy. Unfor- tunately, Lyme patients are being denied such therapy for political reasons and/or because insurance companies refuse to pay for these longer treatments. Fourth, long-term studies on patients who are undertreated or untreated demonstrated the occurrence of severe illness more than a decade later, reminiscent of the findings of the notorious Tuskegee Study. We have to take this illness seriously. Senator Wellstone. Dr. Burrascano, I don't want to be rude, but we're going to ask all of you to try to keep within about a 5-minute time frame. Dr. Burrascano. I am on the last paragraph. Senator Wellstone. OK I apologize. We just want to make sure that everybody has a chance to testify. Dr. Burrascano. I understand. Finally, the Lyme disease bacterium spreads to areas of the body that render this organism resistant to being killed by the immune system and by antibiotics, such as in the eye, deep within tendons, and within cells. The Lyme bacterium also has a very complex life cycle that renders is resistance to simple treatment strategies. Therefore, to be effective, antibiotics must be given in generous doses over a long period of time, sometimes many months, until signs of active infection have cleared. Also, because relapses have appeared very late, decades of follow-up are required before you can say someone has been adequately treated. I have to close by saying the very existence of hundreds of Lyme support groups in this country, and the tens of thousands of dissat- isfied, mistreated, and ill patients whom these groups represent, underscores the many problems that exist out in the real world of Lyme disease. I ask and plead with the committee to hear their voices, listen to their stories, and work in an honest and unbiased way to help and protect the many Americans whose health is at risk from what has now become a political disease. Thank you.
It's 2011. This testimony was given in 1993. That's 18 years ago. 18.
What has changed since this testimony was given?
I think most Lyme disease patients with persistent symptoms can relate to the statements made by Dr. Burrascano, and the echoes of what he said there have become part of the history and undercurrent for patients in discussions about insurance not covering their treatment and their ire about the IDSA Lyme disease treatment guidelines.
In discussion with a few people who were infected with Lyme disease many many years ago, I heard their uncommonly held opinion that this statement by Dr. Burrascano was perceived by them as a poor move on his part - even if some of the statements said were true. In doing so, he had raised the gauntlet and his open criticism before the Senate led to a backlash from different quarters.
As an aside, I'd really like someone to confirm if what I've heard about the time before his testimony was true: Prior to Burrascano's speech, some insurance companies were paying in full for IV antibiotic treatment for some patients. It wasn't a consistent practice - but in some places patients were able to get many months of IV antibiotic treatment covered by insurance. Insurance companies trusted the doctor's individual judgment for those cases.
Today, it is almost unheard of that an insurance company will cover any IV antibiotics for Lyme disease - if one receives 30 days' worth as a patient, they are lucky. It's almost as it neuroborreliosis doesn't happen, but it can and does happen earlier than one might suspect, given the stages of Lyme disease of which many people are familiar - and IV antibiotics is what neuroborreliosis requires.
Regarding the reaction to Burrascano's testimony, according to the LDF - there was retaliation - though I do not know the full story nor do I have independent confirmation of it. What I do know is that to this day, there is a history of ongoing investigation into doctors who treat Lyme disease with long-term antibiotics - either by insurance companies, state medical boards, or both.
How this got started and who was the first doctor to do it is something I'd like to know - it had to be someone before Burrascano.
I look at all of this and what I hear in the Lyme patient community today springs forth from this event, and before this, the LDF, and before this, the Polly Murray story. I wonder how things came to be as they are - and inexplicably, why it is they haven't changed more in 18 years.
And interesting to note some of the other testimony by others that day... Sure, many people are familiar with the difference of opinion exchanged between Burrascano and Steere later that session, but how many are familiar with statements made by other researchers and doctors that day?
In my next post, part 2, I'll be pulling some of the more interesting passages out of the testimony for examination.
Note: For those of you who are concerned about my being plagued by virus yet still posting anyway when I said the frequency would slow down - I'm not great but okay. Most of what I'm writing here is copy and paste and not requiring much brain power... So I can post then lie down. - CO
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