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Most of the many Kaiser Lyme disease victims who have contacted us through the Kaiser Papers these past few years want to know how to obtain treatment for Lyme disease. Virtually all of these members have chronic Lyme disease, the late-stage persistent form of the disease.
Kaiser follows Lyme disease guidelines issued by the Infectious Diseases Society Of America (IDSA).
These guidelines do not acknowledge or address the chronic form of Lyme disease. They only address the acute or early-stage Lyme disease.
The IDSA guidelines were a subject of an antitrust investigation initiated by the Connecticut Attorney General in 2006. The guidelines appear to be constructed in a manner that limits diagnosis and treatment and favors HMO’s and insurers.
There is an alternative Lyme disease guideline formulated by the International Lyme and Associated Diseases Society (ILADS).
These guidelines are based on unbiased evidence-based medicine and the clinical experience of specialists who have treated many thousands of Lyme disease patients. In essence, the ILADS guidelines recognize chronic Lyme disease and that Lyme disease patients should be treated until symptoms resolve or are under control.
Although every patient has the right to choose their medical care options, Kaiser has chosen to ignore the ILADS guidelines and, therefore, not provide the member this option. The probable explanation is that the ILADS guidelines would recognize a vastly greater number of Lyme disease victims and the open-ended treatment, sometimes requiring the use of expensive antibiotics, would result in costs that are unacceptable to Kaiser.
It is possible that Kaiser patients can receive treatment for early-stage Lyme disease if they meet the restrictive qualifications provided in the IDSA guidelines. The Lyme “bullseye” rash, erythema migrans, is the hallmark symptom of Lyme disease and is specific to the disease. If a Kaiser member is fortunate enough to get this distinctive rash,http://en.wikipedia.org/wiki/Erythema_migrans photograph it and, if possible, go to a Kaiser urgent care or emergency care facility so it will be documented and you will hopefully receive timely and adequate treatment, which is critical. Do not wait for an appointment with your primary care or other doctor as the rash can quickly fade.
If you are not so fortunate as to get the Lyme rash, and most are not, a diagnosis of Lyme disease is unlikely, particularly on the West Coast where the bulk of Kaiser members reside. Kaiser promotes the notion that Lyme disease is very rare on the West Coast;
The ELISA screening test that Kaiser uses is unreliable for East Coast Lyme victims and is virtually worthless for West Coast Lyme victims;
Please inform yourself of the IDSA guidelines, so that you receive diagnosis and treatment at least conforming to the minimal treatment stated in these guidelines. A patient who presents with a Lyme rash requires no testing. One danger in receiving care for Lyme disease through Kaiser is that the member will likely not be tested for coinfections of Lyme disease, some of which require different treatment than the antibiotic protocol for Lyme disease. Another risk is that treatment may be inadequate and not resolve symptoms completely. In this case, the patient can go on to develop treatment resistant forms of the disease.
For those with chronic Lyme disease, which comprise 100% of the Kaiser members who have contacted us, help from Kaiser is virtually impossible. Kaiser physicians who diagnose and treat the chronic form of this disease are subject to reprimand. These patients are usually assigned to infectious disease specialists who will normally refuse diagnosis. To our knowledge, only one chronic Lyme patient who has contacted us in the past three years has received a diagnosis of Lyme disease. This patient was given 30 days of antibiotics, told she was cured, and informed that any future symptoms she has are not due to Lyme disease. The patient continues with Kaiser and continues to be very ill.
Kaiser members have essentially two choices in receiving care for Lyme disease;
Change health plans to an ethical insurer providing a PPO plan in which a patient is able to select their own specialists rather than go through a “gatekeeper,” if this is possible in your situation. In this way physicians knowledgeable in tick-borne diseases can be consulted. Expert medical opinion should be sought since ticks can transmit a number of coinfections and most doctors, even outside of Kaiser, are not competent to deal with these. Kaiser members with a choice of group plans should not have a problem changing because pre-existing conditions cannot disqualify one from joining another group plan. Kaiser members with individual plans are in a more difficult position, can be disqualified with pre-existing conditions and should proceed with caution.
Pay for competent help for Lyme disease outside of the Kaiser system. This can be expensive. Do not expect reimbursement from Kaiser. Cases we know of that have been run through Kaiser’s arbitration system have been unsuccessful in providing adequate compensation to the Kaiser member. In a very few cases we know of, Kaiser has been known to pay for extended antibiotics (prescribed by a physician not with Kaiser and purchased through a Kaiser pharmacy) provided the medication is not expensive. But this may be old information and Kaiser may no longer do this.
In either case, Kaiser members with Lyme disease should seek help from their local support group. All or most are very familiar with Kaiser’s stance on Lyme disease and their tactics. The links below will help in locating a support group in your area;
There are also Internet discussion groups for Lyme disease such as
http://www.lymenet.org/ and others. Sites such as these are useful for learning some of the issues with Lyme disease and to ask questions. However, it should be noted that not all participants are knowledgeable and some of the information is not correct.
We recommend that Kaiser members get copies of their medical records pertaining to Lyme disease, including lay tests. Experience with arbitration proceedings has shown that records have a habit of being “misplaced” when there are legal challenges.
Members who have received abusive treatment should complain to the chief of medicine of that Kaiser facility, an approach which has reportedly been more effective than filing a complaint with member assistance. If the problem is serious enough, the member should file a formal grievance with Kaiser. If there is no satisfaction, the member has the option of filing a grievance with the appropriate regulatory agency in their state. In California this is the DMHC. A risk is that the member may be labelled a “troublemaker,” possibly compromising future medical care.
We realize that it is extremely difficult for a chronic Lyme disease patient with impaired mental cognitive ability to absorb some of this information for this complex disease but help can be obtained. The patient, family member or an advocate has to take the initiative.