Fascinating presentation on the “history and current controversies” with regards to Lyme disease by Richard Jacobs, MD, an infectious disease specialist, IDSA activist, who holds the title of Professor Emeritus at UCSF. The historical parts of the talk are quite fascinating, since he seems to know the backstory regarding Burgdorfer, and others who were on the inside when the organism was identified (i.e., Steere, Burgdorfer, Benach, Barthold). Dick Jacobs, MD is known for harassing the doctor who formerly ran the Lyme Disease Clinic at UCSF, and eventually closing it down, claiming to the doctor who ran the clinic that he would continue to follow the patients in the clinic, and he should not worry about what will happen to all the patients — that numbered about 250 people. But, I am told, Davis did not follow these patients as promised. The patients were left hanging, without a doctor. In legalese, they were “abandoned.” Patient abandonment is a cause for medical disciplinary action, and can be a cause of action in a medical malpractice claim. Based on the history of what occurred, Dick Jacobs, MD abandoned the patients. When I lived just south of UCSF and worked in Palo Alto in the early 2000’s, I contacted the Infectious Disease Department run by Dick Jacobs, demanding to be seen — after all, this was a state-funded medical center, and the disease was endemic to the state. How could they not serve the people who paid their taxes to fund the university? How could they carve out tick-borne disease from the services they provided — that is discrimination. I also filed numerous FOIAs that were never answered. I was relentless in making complaints to the UCSF Patient Relations office. Of note, the UCSF Patient Relations office was situated behind a locked door, and one is videotaped and must be “buzzed in” to enter— so you can only imagine what had gone down there that warranted such a high level of security. Other, VERY UNHAPPY patients, or their relatives must have been so severely disgruntled that it made the staff feel physically threatened. When the Lyme Disease Clinic was closed - Phyllis Mervine, who ran her 501(c)(3) in northern California did nothing. Not even to write a complaint to the hospital. And when I looked to her for help and support, she did not help me. It would have been an enormous victory for Lyme disease patients to be able to access care at UCSF — because once an academic center does not permit clinicians access to a particular group of patients, it blunts the chance they will ever learn the truth about Lyme disease, or become interested in conducting honest research. Academicians and their institutions are the people who get federal and private dollars to do research — not doctors in private practice. So, by kicking Lyme disease patients out of UCSF, it meant that no clinician who might not share the agenda of the clique within IDSA that runs the IDSA Lyme disease show, no medical student, resident, or attending physician would see us and begin to ask questions. This is why we should fight to get in the door at teaching hospitals rather than walk away. And, generally speaking, for a physician to be affiliated with an academic medical center, lowers the risk of ever being destroyed by a medical board. They are virtually untouchable. To be able to convince ONE physician at a major medical center to do honest research would be a big win. Notice, for example, that the IDSA activists have never gone after Sam Donta, MD or Brian Fallon, MD, or John Aucott, MD with medical board complaints, each of whom have, or have held academic appointments. All have generated work valuable to the Lyme disease community. So, my feeling has been that the strategy of CALDA and the LDA has been all wrong in terms of focusing on recruiting clinicians down the food chain. That we should be fighting to get into these institutions, instead of passively accepting the status quo and think we can build an alternative. It is NOT POSSIBLE for the Lyme disease community to build an alternative to the riches held by academic medical centers. But our major patient advocacy organizations are led by people who do not understand the culture of medicine. And we cannot look to ILADS for this leadership because every patient turned away from a teaching hospital is a dollar in their pocket. I did, btw, get an appointment with an Infectious Disease doctor at UCSF - an astonishing event. At an infectious disease department meeting, the issue of my complaints came up for discussion, and a doctor from the HIV clinic offered to see me. On that day, I traveled to the HIV clinic at UCSF on Parnassus Avenue in San Francisco, and sat in the HIV waiting area. I was treated with kid gloves, with all eyes on me. I said something like, “how come there is no treatment available at UCSF for patients like us?” And the phrase, “patients like us”, spoken softly, seemed to reverberate around the room — because, after all, I was in the HIV Clinic, a place providing care to the most stigmatized group in mainstream medicine, and here I was — a seemingly privileged white women — making a statement that inferred I was a member of a group even lower than the lowest. During the appointment, I had a long chat with a very congenial African American physician, who also wanted legal help with problems he was facing with respect to the HIV clinic. I was interested in what he said, and thought I could make some constructive suggestions — but ultimately I put it aside. After all, I would have to tutor him on Lyme disease, with no support that any patients would follow behind me, given how clear Phyllis Mervine was about not giving support to this rabble rousing physician. She did, and continues not to understand, that by going to the point of conflict and agitating, one is creating opportunity for change. By doing nothing, we accept the status quo. We allow them to libel us, stigmatized us, and for physicians to never meet us and to see with their own eyes who we are — they will find the propaganda believable. We are made into the enemy by the IDSA committee that runs Lyme disease. I gave up trying to open the door given there was no patient support, and in particular, no leadership from Phyllis Mervine. No matter how much I told them about the culture of medicine, and how important it was for us to get a toe-hold at this world class institution (considered among the very top medical schools in the country) that was sitting right next to the major Lyme disease counties in California — the apathy was astonishing. They did not understand, nor were they interested in knowing, how the game is played in medicine. To them, a doctor is equal to any other doctor — whether they saw a private practitioner out in the sticks, or at a major teaching institution. They could not grasp that some doctors are more equal than others. My feeling is that the passivity of our major patient advocacy organizations is killing us, that they allow THEM to kill us, to deprive us of medical care, to bully us — that the fight is not just about access to infectious disease specialists, but about accessing some of the finest doctors of other specialties, too, through the internal referral networks at these teaching hospitals. We sit at the edge of major medical centers, and suffer as though we are living in a Third World country.
Posted on: Mon, 29 Dec 2014 11:43:20 +0000
Trending Topics
Recently Viewed Topics
© 2015