Undue Influence

Wow. Had you asked me, I would have said with such certainty that I had already blogged about the Infectious Disease Society of America's (IDSA) Lyme Panel. Now, I look through my posts and see that I have not. This is way overdue, then, as the IDSA's Lyme Disease Guideline Panel (LDGP) and their relationship to insurance companies and their practices is key to understanding why Lyme Disease patients are left to suffer and die.

Before I begin there are two things to understand:

1. I want to be very clear that the IDSA is an organization which researches and advocates for many infectious diseases. They have a very admirable history as regards their work in the '80s and '90s pertaining to AIDS. When I talk about the IDSA here, I am only referring to their Lyme Disease Guidelines Panel (LDGP). 
2. It should also be noted that the IDSA is a private specialty society. It is not a publicly elected body. It it not a government agency. It has not been appointed any authority by any governing agency.  As such, there is zero accountability for its actions unless legal action is taken up against them.

So, why am I writing about the LDGP? Because this private society has an enormous influence on how Lyme Disease is defined, tested for and treated throughout our medical system. This small group of people, with no accountability whatsoever, is controlling the dispensation of health care to hundreds of thousands of patients.

How are they afforded such influence?  Because health care in this country is controlled by health insurance companies. Private, for-profit corporations. As private, for-profit corporations, insurance companies are legally obligated to maximize shareholder dividends. No other concern can over-ride this unless there are laws enacted to enforce other priorities. For an insurance company to maximize shareholder dividends, they must minimize expenses. The majority of the expenses for a heath insurance provider is the cost of providing care to customers. So, they must minimize how much care they provide, within the limits of the obligations stated in the insurance policy contract they have agreed to.

One way to minimize how much care you provide is to justify denial of care by deeming it unnecessary. As reported in U.S. News and World Report, where David is the patient and Goliath is the insurance company:

What few Davids know is that insurance contracts by law grant companies the legal right to manage a patient's care, including denying it, sight unseen, and give them the final say, if challenged. Unless the state steps in.

So, insurance companies seek out panels, studies, and consulting doctors and scientists that will support their denials. This search is, of course, one of cherry-picking. Any panel, study or consulting doctor will do. Its all a numbers game to them. We can talk about the insurance gambling industry later. What is pertinent here, is that a publicly unaccountable panel from a private society is serving the interest of a profit-driven insurance industry where the motivation is to deny care to patients. In this system, there is very little that the patient can do to fight for her own health care. There is very little the public at large can do, as there is no access point for the public to have a say in how the system is controlled. We are at its lack of mercy.

Lyme Disease is a fascinating case study in how this system fails patients and doctors. It is a complex story that dates back to laws enacted in 1981, just before the discovery of the organism that causes Lyme Disease. It is a perfect storm of the right to own bio-organisms, the right for researchers to privately own the results of publicly funded research, a disease that is challenging to identify because it is the newest "Great Pretender" with myriad presentations, patients who lose their ability to function and therefore fight for themselves, a privately run health care system, personal profit motives, egos that can't admit error, and the increasing need for people to protect themselves from potential litigation. Its a thriller which is still unfolding on a screen cast across the country with a supporting cast of hundreds of thousands of people suffering and dying in wait, while the main characters play a game of intrigue isolated from the impact it is having on the people they claim to be protecting.

For today, we'll stick with the basic controversy. Insurance companies use the LDGP guidelines to determine what they will pay for when a patient has Lyme Disease. The LDGP guidelines state that Lyme Disease is cured with four week of antibiotics, regardless of how long you've had the disease or what your symptoms are. So, insurance companies throughout the United States will only pay for four weeks of antibiotics.

No signs of improvement at the end of four weeks? Too bad. You're cured. If you're still sick, it must be something else. Oh, billions of tests can't find anything else, but still show Lyme Disease? Well then, its a psychiatric disorder. What? If you take antibiotics long-term you feel better? Meh, that's a placebo effect. Again, its a psychiatric disorder. Those seizures, tremors, heart murmors, that palsy, those pains that keep you from walking, the near blindness, the loud ringing in your ears, the hyper-sensitivity to light, sound, movement.... all these thing are in your head. Because the IDSA's Lyme Disease Guidelines Panel says you're cured. Now go away.

Now, if every panel of private medical socities concurred and all the research out there supported this conclusion, perhaps we'd have to figure out what's going on with these people. Lyme Disease is the biggest epidemic we have right now. There are an estimated 300,000 new cases each year. A significant percentage of these continue to be sick after receiving the unofficial, official treatment. People who have never had psychiatric problems before. Do we have a sudden epidemic of psychosis? If so, shouldn't we be urgently looking into this?

The truth is that 34 organizations have challenged the LDGP's guidelines (scroll down for link to PDF) in a recent review process. A process which came about because the CT State Attorney General investigated the LDGP for conflicts of interest and found:

Blumenthal's findings include 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 another medical association'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.

That investigation was reported in 2008. Its 2010. Do Lyme patients and their doctors have more freedom to treat as they see fit, now? No.

This story is a juicy one. Too juicy to be told in one post. More to follow....