Senator Phil Gramm
Senator Kay Bailey Hutchison
Representative Ed Barton

Re: Patients "Bill Of Rights"

Before I address the subject matter, there is a political point I must make:

In 1993, Senator Ted Kennedy chaired an Oversight Hearing on "Lyme Disease: A Diagnostic and Treatment Dilemma", for the Senate Committee on Labor and Human Resources.

Some of the testimony can be viewed on the World Wide Web at https://www.angelfire.com/biz/romarkaraoke/Lymecon.html.

Following the hearings, Senators Dodd, Kennedy, and Metzenbaum made promises concerning a Lyme Disease Initiative for funding research and cures.

These promises have not been kept. Perhaps a little thunder can be stolen by reintroducing the subject.

Heaven knows, since the 1993 hearings, the spread of Lyme Disease (now second only to AIDS) has dramatically increased, and the plight of Lyme Disease patients gets worse. This worsening is a direct result of current ERISA legislation, and the cost containment procedures undertaken by HMOs and other insurers.

Now to the matter at hand.

Whenever the conference convenes to provide a compromise between the Senate and House versions, one focal point, above all others, must be maintained. That point is the current ERISA exemption afforded single-employer, self-funded employee benefit plans.

This exemption basically pre-empts State’s Rights. This pre-emption should be removed, and become a non-negotiable point.

It also provides a safe-harbor to unscrupulous, or uncaring, Plan Administrators. There is no impetus to do the right thing.

The ERISA pre-emption removes the possibility of redress in State Courts. Any case of wrongdoing must be argued before a Federal Court. Finding an attorney qualified to argue before a Federal Court is difficult, and expensive.

Yes, economic well-being enters into the picture; there is no money in it. The current ERISA exemption only allows for recovery of what should have been paid for in the first place. No punitive damages, even for a wrongful death. Recovery of attorney fees is at the discretion of the judge, but only for litigation time.

Effectively, any administrative, discovery, and deposition time has to be paid for by the person wronged. Unless the patient can find a pro bono attorney, the possibility of redress in a Federal Court is an avenue closed to the vast majority of people with their "horror" stories of bungled care.

HMOs are an easy target; the traditional "deep pockets". Although HMOs should not be absolved of responsibility for their actions, as the current legislation does for all but three states, they are not the major boogieman.

The majority of United States citizens are insured through the single-employer, self-funded employee benefit plans.

If the compromise legislation only addresses HMOs, I can see the eventual outcome. Employers will stop offering HMO plans to avoid the legal costs for wrongdoing. Then, the employers will either not offer any insurance coverage, or take the single-employer, self-funded employee benefit plan route. This results in placing more United States citizens into the very worst part of ERISA.

I know the argument that giving the right to sue the employers for wrongdoing will drive many employers out of business will surface; that it will cost too much. If the company is so socially irresponsible as to value money over human life, they deserve to go out of business.

As it currently stands, those of us stranded in single-employer, self-funded employee benefit plans find our path to healthcare blocked for ludicrous reasons, with no viable recourse. This is especially true for those of us who are Lyme Disease (LD) victims. Emotional, economic, and physical harm results obtain because of cost containment.

Not satisfied with blocking treatment, there now seems to be a concerted effort to going after the treating physicians, especially Dr. Joe Burrascano, of New York. In our LD community, they are called LLMDs (Lyme Literate Doctors). If this is not stopped, some other healthcare costs are going to escalate; the vast majority of Medicare expenditures occur during the last six months of a patient’s life. Also:

1. Conflict of interest: complainants may be paid by insurance companies to review (and deny) Lyme disease treatment claims. Complainants may be competing with target physicians in some way (research funding? patients? something else?) Complainants may have financial stakes in laboratories, research programs, tests, clinical practices, etc. which are threatened by the beliefs, practices and success of physicians who are targeted.

2. Standard of care: there is no consensus in the medical community regarding treatment for chronic Lyme disease. Many researchers are investigating many aspects of treatment issues. The 2- or 3-week treatment protocols are arbitrary and have been shown to be unsuccessful in many cases. Dr. Steere's most recently published protocol suggests up to 6 weeks of treatment, but -- beyond its recognition of the failure of shorter protocols -- this too is arbitrary.

3. Lyme disease is often difficult to diagnose and difficult to treat. This is highlighted and attested to by the existence of thousands of Lyme Disease Support Groups across the nation. If cure were simple there would be no support groups.

4. Persistence of infection: many articles published in the peer-reviewed medical literature provide strong evidence for persistence and chronicity of Lyme disease. The Lyme organism has been identified by PCR, culture, electron microscopy, antigen capture, etc. in the tissues of patients and animals who have previously received multiple courses of currently recommended antibiotics.

5. Unreliability of tests: no test even approaches adequate sensitivity for detection of Lyme disease. No test approaches 100% reliability. There is considerable debate over the current CDC-recommended two-tier testing criteria, which were originally intended for surveillance purposes only, but now are being promoted in lieu of clinical diagnosis. No test can definitively rule out Lyme disease. There is no test that shows whether or not the infection has been eliminated.

6. Co-infections: New tick-borne infections are being discovered all the time; the role they play in interacting with Lyme disease is only beginning to be explored.

7. Scientific issues should be decided in the scientific forum, not in the proceedings of medical boards investigating alleged "misconduct."

8. The intention of the reporting law was to protect patients from unprofessional conduct by physicians. Using this process to threaten, intimidate, and restrict certain physicians (particularly LLMDs) is clearly politically and/or financially motivated.

9. Anonymity of complainant: complainants are allowed to remain anonymous. This gives the complainant protection against reprisals, but it also prevents accountability. Without full disclosure, one can never explore the motives of the accuser.

10. Undefined charges: by law, the charges brought against a physician are not specified. In New York, the law authorizes the OPMC to use the original complaint to gain access to the physician's charts, but the final charges may not be the same as the original complaint. In other words, they can use anything they find, even if totally unrelated to the original complaint. (Shades of Ken Starr)

11. Regardless of innocence or guilt, investigations can be ruinous to the practice, reputation, finances, and ultimately to the family security of the physician accused. Thus totally unfounded charges can be used to attack a physician very effectively.

12. Widespread campaign of intimidation: numerous other Lyme doctors have been targeted, resulting in their licenses being restricted (typically restricted from treating Lyme patients). Significantly, allegations are seldom based on complaints from a patient. To the contrary, patients have jumped to the defense of their treating doctors and contributed to defense funds.

13. Long range effects: other doctors are reluctant to accept Lyme patients because of controversy, the acrimonious atmosphere, and fear of this kind of attack. This leads to further difficulties for all Lyme patients. Doctors with Lyme patients often choose not to report cases because they believe it invites trouble that might put their practices at risk. This is happening to all the LLMDs in our area.

My complete "horror" story can be found on the World Wide Web at https://www.angelfire.com/biz/romarkaraoke/james.html.

It is quite extensive, and takes considerable time to read. I would appreciate if you or a member of your staff would expend that time. Remember, my plight is not even the tip of the iceberg, I am but a single snowflake on that iceberg.

We made a Federal effort for Civil Rights, to end racial discrimination. Pray we can expend the same effort for disease specific discrimination.

Thank you for your time,

R. James Martin