photo courtesy of MeliaGordon.com; taken in upstate New York where Lyme is endemic
On many occasions, I have half-jokingly told people, “If you get a major disease, don’t get one that’s a political controversy. Get one that is well understood by science and that is supported by society.” In other words, don’t get Lyme disease!
The reasons that Lyme is such a political disease are long and multi-fold. This blog post is only meant to summarize some of the highlights so that people can have a basic understanding of why getting treatment for Lyme disease, especially late disseminated Lyme disease, can be so difficult. This post certainly does not represent all of the issues with the politics of Lyme, but it summarizes some of the highlights.
The official agency which advises the Centers for Disease Control and Prevention (CDC) about Lyme disease is the IDSA, the Infectious Diseases Society of America. From reports that I have read on the internet, the IDSA is the typical old boys’ club: Interested in sustaining its own interests, but not truly concerned with helping others. The majority of those on the panel that makes recommendations for Lyme treatment do not actually treat Lyme patients, nor are they willing to listen to those doctors who do. The group refuses to believe that chronic Lyme exists, instead insisting it is “just” post-treatment Lyme disease syndrome. The Connecticut Attorney General’s office has led an investigation of the IDSA which concluded that the IDSA is a very challenged organization. Seven of the panel members who advise the CDC about Lyme policies and research have conflicts of interest in terms of financial holdings and Lyme; it was these anti-trust allegations that led to the Attorney General's investigation in the first place.
The IDSA continues to endorse the two-tiered ELISA and Western blot Lyme tests for Lyme testing, possibly due to financial ties and connections. This is the inaccurate testing which resulted in my misdiagnosis of not having Lyme in 1994; since then it has become common knowledge that this testing has a 50% or higher false negative rate. That is an abysmal result rate for test accuracy, and no one doing statistics would consider it a valid result at all. However, because of the various interests of the IDSA board members, they continue to endorse this test and recommend it to the CDC.
The IDSA’s “competition” is ILADS, the International Lyme and Associated Diseases Society. Their board members are scientists and doctors who treat patients or otherwise work with late disseminated Lyme disease and other tick-borne illnesses. They recognize from experience that the four week course of doxycycline recommended by the IDSA is inadequate to treat Lyme disease which has not been detected within a short amount of time after the bite. ILADS also promotes research and education for physicians and researchers on Lyme and related diseases.
Despite the scientific research and experience of ILADS, the CDC continues to deny that late disseminated Lyme disease even exists. LymeDisease.org recently administered a 10 day online survey on Lyme Disease to provide information for the ISDA and other confused practitioners; 6100 people who have Lyme or are caregivers for someone with Lyme responded to this survey including me. The resulting publication is amazing as it clearly demonstrates the devastating effects that late disseminated Lyme disease has on people even if the IDSA and CDC don’t want to believe this condition exists.
To further complicate the issues of Lyme disease, the CDC’s treatment policy makes it difficult for patients to get adequate treatment. Because only four weeks of antibiotic treatment is recommended for a tick bite, the vast majority of physicians are unaware of how inadequate this treatment is for most patients who have late disseminated Lyme. The doctors then refuse to provide any other treatment that steps out of line with the CDC’s treatment protocol. As a result, many patients can’t find a doctor to treat them: The doctor who made my original Lyme Disease diagnosis in 2009 using IGeneX testing refused to treat me according to ILADS protocols because he was afraid of being reported to the state medical board for practicing experimental medicine.
The threat of losing one’s medical license is a very real problem for Lyme practitioners. Because of the IDSA’s control over the CDC, the physicians who are willing to prescribe extended antibiotic regiments for face censure by their state licensing boards for not following standard protocol. This was a huge problem until recently in many states. The Connecticut legislature began the process of supporting physicians who follow ILADS and other experimental guidelines in 2009 with a law allowing doctors to treat late disseminated Lyme Disease with extended antibiotics. This began the process of similar legislation being passed in other states; many have Lyme laws up for consideration this year. Texas followed suit in 2011 after a long campaign by many devoted Lyme activists and sponsorship of the bill by a state senator who had suffered from Lyme himself and had experienced difficulty getting appropriate treatment. The Texas law forbids the punishment of medical practitioners treating Lyme with extended courses of antibitotics if they have completed adequate continuing education courses about Lyme disease and other tick-borne diseases. This has relieved the fears of some medical practitioners in Texas, and it allowed one previously censured Texas doctor to reopen his Lyme treatment practice. However, other Lyme practitioners had already been driven from the state and continue to practice elsewhere.
In addition, many insurance companies are unwilling to pay for the extended treatment recommended by ILADS affiliated physicians. Despite studies and experience, the insurance companies cite the CDC’s policy and deem all other treatment experimental and therefore refuse to cover it. This leaves patients in a terrible place: Needing extensive treatment but having access to coverage for no more than four weeks of antibiotics. I have heard stories of Americans flying to Russia for treatment because it is cheaper than trying to get treatment in the US without adequate insurance coverage.
Furthermore, the insurance companies will file complaints against doctors who practice under ILADS guidelines in an attempt to avoid paying patients’ treatment bills. If the insurance companies shut down the doctors’ practices, it short-circuits their problems with having to pay for treatment. The Texas Medical Board used to allow anonymous complaints which encouraged this type of practice not only for Lyme doctors but for many others as well. As a result, because many insurance companies value profit over human lives and/or quality of life, they attempt to prevent treatment in any way that will save them money. It’s a truly unethical position in my opinion.
These issues are just the tip of the iceberg for the wider societal problems Lyme Disease patients face. Various researchers continue to demonstrate that ILADS’ policies on Lyme treatment are closer to the truth than the IDSA’s. However, the need to be right and rich overshadows the desire to help patients in most cases. The political battle for access to adequate treatment for Lyme and other tick-borne diseases continues while many people live their lives crippled by pain and misery.
© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC
The reasons that Lyme is such a political disease are long and multi-fold. This blog post is only meant to summarize some of the highlights so that people can have a basic understanding of why getting treatment for Lyme disease, especially late disseminated Lyme disease, can be so difficult. This post certainly does not represent all of the issues with the politics of Lyme, but it summarizes some of the highlights.
The official agency which advises the Centers for Disease Control and Prevention (CDC) about Lyme disease is the IDSA, the Infectious Diseases Society of America. From reports that I have read on the internet, the IDSA is the typical old boys’ club: Interested in sustaining its own interests, but not truly concerned with helping others. The majority of those on the panel that makes recommendations for Lyme treatment do not actually treat Lyme patients, nor are they willing to listen to those doctors who do. The group refuses to believe that chronic Lyme exists, instead insisting it is “just” post-treatment Lyme disease syndrome. The Connecticut Attorney General’s office has led an investigation of the IDSA which concluded that the IDSA is a very challenged organization. Seven of the panel members who advise the CDC about Lyme policies and research have conflicts of interest in terms of financial holdings and Lyme; it was these anti-trust allegations that led to the Attorney General's investigation in the first place.
The IDSA continues to endorse the two-tiered ELISA and Western blot Lyme tests for Lyme testing, possibly due to financial ties and connections. This is the inaccurate testing which resulted in my misdiagnosis of not having Lyme in 1994; since then it has become common knowledge that this testing has a 50% or higher false negative rate. That is an abysmal result rate for test accuracy, and no one doing statistics would consider it a valid result at all. However, because of the various interests of the IDSA board members, they continue to endorse this test and recommend it to the CDC.
The IDSA’s “competition” is ILADS, the International Lyme and Associated Diseases Society. Their board members are scientists and doctors who treat patients or otherwise work with late disseminated Lyme disease and other tick-borne illnesses. They recognize from experience that the four week course of doxycycline recommended by the IDSA is inadequate to treat Lyme disease which has not been detected within a short amount of time after the bite. ILADS also promotes research and education for physicians and researchers on Lyme and related diseases.
Despite the scientific research and experience of ILADS, the CDC continues to deny that late disseminated Lyme disease even exists. LymeDisease.org recently administered a 10 day online survey on Lyme Disease to provide information for the ISDA and other confused practitioners; 6100 people who have Lyme or are caregivers for someone with Lyme responded to this survey including me. The resulting publication is amazing as it clearly demonstrates the devastating effects that late disseminated Lyme disease has on people even if the IDSA and CDC don’t want to believe this condition exists.
To further complicate the issues of Lyme disease, the CDC’s treatment policy makes it difficult for patients to get adequate treatment. Because only four weeks of antibiotic treatment is recommended for a tick bite, the vast majority of physicians are unaware of how inadequate this treatment is for most patients who have late disseminated Lyme. The doctors then refuse to provide any other treatment that steps out of line with the CDC’s treatment protocol. As a result, many patients can’t find a doctor to treat them: The doctor who made my original Lyme Disease diagnosis in 2009 using IGeneX testing refused to treat me according to ILADS protocols because he was afraid of being reported to the state medical board for practicing experimental medicine.
The threat of losing one’s medical license is a very real problem for Lyme practitioners. Because of the IDSA’s control over the CDC, the physicians who are willing to prescribe extended antibiotic regiments for face censure by their state licensing boards for not following standard protocol. This was a huge problem until recently in many states. The Connecticut legislature began the process of supporting physicians who follow ILADS and other experimental guidelines in 2009 with a law allowing doctors to treat late disseminated Lyme Disease with extended antibiotics. This began the process of similar legislation being passed in other states; many have Lyme laws up for consideration this year. Texas followed suit in 2011 after a long campaign by many devoted Lyme activists and sponsorship of the bill by a state senator who had suffered from Lyme himself and had experienced difficulty getting appropriate treatment. The Texas law forbids the punishment of medical practitioners treating Lyme with extended courses of antibitotics if they have completed adequate continuing education courses about Lyme disease and other tick-borne diseases. This has relieved the fears of some medical practitioners in Texas, and it allowed one previously censured Texas doctor to reopen his Lyme treatment practice. However, other Lyme practitioners had already been driven from the state and continue to practice elsewhere.
In addition, many insurance companies are unwilling to pay for the extended treatment recommended by ILADS affiliated physicians. Despite studies and experience, the insurance companies cite the CDC’s policy and deem all other treatment experimental and therefore refuse to cover it. This leaves patients in a terrible place: Needing extensive treatment but having access to coverage for no more than four weeks of antibiotics. I have heard stories of Americans flying to Russia for treatment because it is cheaper than trying to get treatment in the US without adequate insurance coverage.
Furthermore, the insurance companies will file complaints against doctors who practice under ILADS guidelines in an attempt to avoid paying patients’ treatment bills. If the insurance companies shut down the doctors’ practices, it short-circuits their problems with having to pay for treatment. The Texas Medical Board used to allow anonymous complaints which encouraged this type of practice not only for Lyme doctors but for many others as well. As a result, because many insurance companies value profit over human lives and/or quality of life, they attempt to prevent treatment in any way that will save them money. It’s a truly unethical position in my opinion.
These issues are just the tip of the iceberg for the wider societal problems Lyme Disease patients face. Various researchers continue to demonstrate that ILADS’ policies on Lyme treatment are closer to the truth than the IDSA’s. However, the need to be right and rich overshadows the desire to help patients in most cases. The political battle for access to adequate treatment for Lyme and other tick-borne diseases continues while many people live their lives crippled by pain and misery.
© 2015 Elizabeth Galen, Ph.D., Green Heart Guidance, LLC
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