Hat tip and kudos to Vermont Lyme Network led by Dayle Ann and Nancy.
I've been studying up on Lyme disease over the last year after meeting two women — both in their early 30's — who suffer from chronic Lyme. In learning more about it, I became convinced that my father, who suffers every day from a variety of seemingly unrelated symptoms, became a chronic victim after he visted his doctor with a rash from a bug bite — and was never tested!
Lyme disease is here in Vermont, and there are still a lot of doctors who are not proactive in recognizing it. Last year, the State Epidemiologist sent out questionnaire to doctors in order to discover their knowledge base. Of course, 85% responded in a way to suggest that they are up to speed on the subject, but frankly, I could have passed the test without ever attending medical school since the questionnaire was titled, Lyme Physician Survey Report for Providers. Talk about giving away the diagnosis before listing the symptoms.
So, my father suffers needlessly, unlike the President who was diagnosed and treated immediately, which is really the only time to prevent chronic lyme from setting in.
Below the fold, what you need to know, and a press release on last week's settlement in the first-ever anti-trust investigation against a medical society's guidelines development process involving suppressed scientific evidence and corruption by a commercially driven medical panel.
FACTS ABOUT LYME DISEASE
1. Lyme disease is the most widespread and fastest growing vector borne disease in America.
2. Lyme desease is present throughout Vermont. “Case definition” statistics do not represent the true occurrence. CDC estimates that at a minimum, nationally the actual number of new cases annually is at least 10 times those that meet the requirements for reporting. Underreporting is common for other reasons as well, misdiagnosis being one of them.
3. There are two recognized sets of diagnostic and treatment guidelines, but only one is being made available to physicians in Vermont. Physicians need to know about both sets of guidelines, in order to make informed decisions in treating their patients.
4. Treated early and adequately, Lyme disease can be cured. But once it disseminates from the site of infection, it can be devastating in consequences, and difficult to treat. Even early treatment sometimes fails.
5. People with inadequately treated chronic or relapsing Lyme disease frequently experience a quality of life equal to or worse than that of people with other chronic illnesses such as ALS or MS.
6. The loss of jobs, homes, relationships, social support, and dependence on public resources result not only in severe economic losses to the families involved, but to society as a whole.
7. Additional research on the dynamics of Lyme and other tick-borne diseases, and on various treatment modalities, is critical to increase our understanding of how to treat these diseases more effectively.
8. There are far more cases of Lyme disease, with more far-reaching consequences, than there are ofWest Nile. Yet the funding for West Nile far exceeds that for Lyme and associated diseases at both state and federal levels.
There is a bill in Congress, HR 741, that would address some of these
issues, but recognition is also needed at the state level.
For more information contact:
Vermont Lyme Network
vermontlyme@vermontlyme.org
www.vermontlyme.org
Additionall, for those who suffer chronic lyme who have also had their diagnosis and alternative treatment summarily dismissed, there was a ground breaking settlement just last week.
Watch out for ticks, and if you get a bullet shaped rash, get to your doctor immediately and demand a test for Lyme. The particular type of rash is in fact a diagnosis all by itself.
Here's the press release on last week's settlement:
Hartford, CT – Patients' rights groups today hailed Connecticut Attorney General Blumenthal's announcement of a settlement in a landmark antitrust investigation into the Lyme treatment guidelines ofthe Infectious Diseases Society of America (IDSA).
“My office uncovered undisclosed financial interests held by severalof the most powerful IDSA panelists,” said Blumenthal. “The IDSA's guideline panel improperly ignored, or minimized, consideration of
alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether therecommendations reflected all relevant science.”The groundbreaking settlement announced today forces a complete review of the IDSA guidelines by a new panel free from conflicts of interest,specifically excluding previous panel members. This panel will
consider a range of scientific evidence in a public forum broadcast live over the internet and will be overseen by a specialist in financial conflicts of interest in medicine.“This settlement makes it clear that the IDSA guideline development process was corrupted by a commercially driven panel that excluded evidence supporting longer term treatment of Lyme disease,” said attorney Lorraine Johnson, Executive Director of the California Lyme Disease Association (CALDA). “This settlement allows suppressed scientific viewpoints and evidence to be heard, and it is promising news for patients.”
This is the first-ever antitrust investigation against a medicalsociety's guidelines development process.
“We congratulate Attorney General Blumenthal for exposing the IDSA's conflicts of interest and helping reduce the suffering of Lyme patients everywhere,” said Pat Smith, president of the national Lyme
Disease Association (LDA). “The IDSA guidelines are dangerous for patients who suffer longer-term Lyme symptoms that do not fall within the IDSA's narrow disease definition.”The IDSA guidelines are treated as mandatory within the medical community. More than 50 physicians who use longer-term treatment approaches have been investigated or sanctioned by state medical
boards. The guidelines can also result in financial problems for patients, since insurance companies refuse to reimburse for longer-term treatment and pharmacies may refuse to fill prescriptions.The majority of individuals involved in the IDSA guidelines development process held direct or indirect commercial interests related to Lyme vaccines, patents, and/or test kits, and did not take
the opinions or experiences of the competing Lyme groups into account. While the announcement of a settlement comes as a huge relief to suffering Lyme patients, the case has much broader implications for a health care system that often contends with conflicts of interest in guideline processes – guidelines which are often used by insurance companies to limit diagnosis and treatment options.“Today's settlement marks an important victory for all patients who suffer Lyme disease, but it is also a victory for anyone concerned about health care,” said Johnson. “Commercially driven guidelines that
limit patient treatment options are a major issue today in healthcare, and this decision marks an important step towards addressing it.”The national Lyme Disease Association, (LDA), CALDA, and Time for Lyme are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of education and support services available for this newly emerging infection.