posted
The IDSA letter needs to be answered! I sent this to both candidates:
September 18, 2008
RE: RESPONSE TO IDSA/HIVMA Letter to Presidential Candidates of September 5, 2008.
I would like you, as the potential next leader of the free world, to consider a measured response to the Infectious Disease Society of America's offer to ``help'' your future administration in the area of Lyme disease policy.
You may not be aware of the fact that on May 1, 2008, Connecticut Attorney General Richard Blumenthal announced that an antitrust investigation had uncovered serious flaws in the Infectious Disease Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and that the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Blumenthal wrote:
"This agreement vindicates my investigation- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines...
My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists.
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 the recommendations reflected all relevant science.
The IDSA's Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines- in effect a comprehensive reassessment through a new panel.
The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman - an expert in medical ethics and conflicts of interest, selected by both the IDSA and my office - will assess the new panel for conflicts of interests and ensure its integrity."
Blumenthal's findings included the following:
The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;
Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;
The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme,
to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee;
The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus"
The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;
The IDSA portrayed the American Academy of Neurology's Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.
Blumenthal added, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests to exclude divergent medical evidence and opinion.
In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions.
As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.''
Although the IDSA has admitted to no wrongdoing, serious consideration should be given to removing guideline creation activities from private groups and placing it in the hands of neutral government regulators.
One of Connecticut Attorney General Blumenthal's concerns is for something that is already happening: medical insurance companies use the IDSA guidelines to refuse to pay for prescribed Lyme medications beyond four weeks.
Thousands, with thousands more to come; have been caught up in this medical melee. Eventually it will become such a problem that we may end up with a whole new class of destitute homeless people on the streets in America: the chronically ill who are deprived of medical care!
The role of antibiotics as a cure for this disease may justifiably need to be carefully scrutinized.
Nevertheless, it needs to be part of a holistic re-examination. Why are Lyme patients being singled out when acne patients are not, and even worse, when the majority of antibiotics sold in the United States are pumped directly into the food stream when they are routinely fed to factory farmed animals?
Dogs and cats are regularly and readily prescribed antibiotics when they come down with this disease, humans are not.
The imperative of early treatment is acknowledged by everyone. But the fact that the current IDSA derived diagnostic blood tests often do not even turn positive until long after ``early'' treatment is possible is a problem.
Inadequate initial doses of antibiotics may in reality be doing little more than converting the Lyme spirochetes into a cystic state where they can persist, causing a lifetime of future affliction for between 5 and 10 percent of all Lyme patients.
Saving insurance companies a few dollars at the onset of infection by limiting treatment may result in higher societal costs in the future: by creating drug resistant forms of the bacteria, lost wages, medical care, and human suffering. Doctors who aggressively treat and actually report Lyme disease cases to the CDC should not be subjected to harassment or censured.
Lyme activists, including those who suffer from brain infections that affect behavior, are not `loons,' `lymenuts,'or part of an internet cult from the mythical Lymeland, as some doctors, researchers and government officials proclaim. They are Americans who have seen their suffering ridiculed for many long years, often by members of the IDSA.
The earlier hope for a safe vaccine seems to be unrealistic, especially as our understanding of the extremely complex and relapsing life cycle for the Borrelia burgdorferi bacteria comes more clearly into focus.
The role of the immune system in this process is not fully understood.
The chronic but usually controllable nature of the infection needs to be accepted and treated.
Immediate research strategies need to shift away from biased IDSA literature reviews designed to undermine the lives of chronic Lyme patients and the dogged pursuit of lucrative vaccines, and refocus on preventing infection in the first place. It appears that this will be more difficult than it seems..
What we truly need to do is to decrease the tick population in endemic areas and do it in a way that does not scourge our bodies and the earth with pesticides or be formulated simply to improve the bottom line of the drug companies.
Looking at old and sustainable ideas like clustered housing, regular leaf burning, pannage, and acorn removal could be coupled with experiments that find ways to use acorn derivatives as bio-fuel or building materials. Removing acorns in areas where humans live would help limit the population of mice and deer by removing a primary food source.
While it is controversial and not likely to happen, the return of the native predator, the wolf, would be an excellent mouse and deer population control measure.
We may also need to be surrounded by more domesticated animals that graze once again. As one study has suggested, a return to traditional dispersed non-intensive agricultural herding practices would also help reduce the risk for Lyme disease.
Looking backward to understand the ways that earlier inhabitants of tick risky areas interacted with their environment, lived their lives, and coped with disease may help to plot the course forward.
The fact that some people who are very, very, very sick have been caught up in an acrimonious form of paradigm wars and are losing all hope is not acceptable.
The fact that patients have to beg for treatment is not acceptable.
A member of a local support group here in Maine cannot understand why the physicians and veterinarians in her geographic area give such different medical advice on long term treatment, ``Oh,'' she mused, "to be a dog! Then I would be adequately treated!''
And even if they can find a Lyme literate physician; patients are denied medications under their medical insurance even if it has been prescribed by that licensed physician. These physicians sometimes suffer under constant attack.
Modern medicine in the United States is a for-profit world. The same politicians who have pronounced that socialized medicine is a failure and that medical decisions should be between a citizen and his physician have willingly handed over that power to the Medical Insurance Industry over the past several decades! This needs to change.
Chronic Lyme disease does not fit into this model very well because it requires both acknowledgement and then payment for protracted treatments.
Health care is no longer a common right in America.
I also find it troubling when a group of medical professionals like the IDSA who are increasingly tied financially to the insurance companies are allowed to formulate guidelines that are dismissive of what may be the most devastating form of any disease.
Repeating the mantra that chronic Lyme disease does not exist over and over and over again does not make the information true-or updated-or even research.
There are too many who have suffered for too long to be ignored!
We need medical and political leaders who are willing to say that there is a better way and who stand up for what they say.
Lyme disease, like autism and other particularly thorny afflictions, is a test for both our medical and our political system. The clich� that the future of our democracy is at risk may apply now more than ever.
I worry about Lyme Disease bills that get passed in Congress without any funding but I also worry about any future bills that may get passed and are finally funded only to have the monies go into the pockets of the very same researchers who want to do things like vaccinate forests full of wild mice or lit reviews of their own work to prove once again that people with chronic Lyme are crazy!
We need to focus on human needs first and set better priorities.
We need environmental remediation.
We need an accurate early diagnostic test and we need compassionate late stage care. We need to develop strategies for those who continue to suffer from the effects of this disease long after the medical establishment has said that they should be cured.
In addition, everyone needs to have a place at the table when the discussion begins and the future is planned.
We need to be able to form a consensus of opinion within policy mechanisms that allow for, and even encourage, dissent.
The fact that neurological Lyme affects many with a form of mental illness has muddied the picture but adds special urgency to this matter. Since serious mental illness costs Americans at least $193 billion a year in lost earnings alone, if any of that suffering could be alleviated it would be well worth it in both cost savings and improved lives.
We need to work together to get it right. We need to value all scientific research, not just that which supports one side of the debate.
Moreover, if we do, we can create an informed future where the medical research system is centered on need, knowledge, and integrity, not based solely on recalcitrance or even worse, profitability.
Medical care should be determined as a holistic and collaborative effort between patient and practitioner and public policy should support this precious relationship.
Moreover, we need to stop blaming the victims. No one ever asked for the devastation that the chronic form of this affliction can bring.
Lyme disease is not an affront to modern medical practice: it is a challenging puzzle that needs a better solution.
WE CAN AND MUST DO BETTER in the future. If the needs of the afflicted are met and the cycle of infection is broken, the spread of Lyme disease will be contained.
Based on their past record I'm not convinced that the IDSA is the proper group to lead us towards this future.
Sincerely,
M.M. Drymon
Posts: 15 | From Maine | Registered: Jun 2008
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posted
very well said!
Posts: 561 | From mass | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Excellent. Parts of it are redundant or need to be tied together more coherently in my opinion, and the length is a bit more than I personally appreciate.
There are many positive and useful concepts in the letter, and I appreciate you taking the time to write it. Your writing is quite good as well.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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