The medical establishment gets particularly bent out of shape about having an outside force exert any control over them. They circle the wagons and fight hard against any legislation related to medical matters. Regardless of how the individuals on various state medical boards feel about the treatment of Lyme disease they will fight legislation simply for the sake of keeping the law out of what they see as their territory.
There is a longstanding cultural norm of keeping legislation out of the practice of medicine, though there certainly have been exceptions. These laws are not telling doctors how to practice medicine. They are designed to give doctors the freedom to treat as they see fit given that there has been no research to prove the non-existence of Chronic Lyme. Still, there is a strong institutional resistance to these bills.
Last week, the Minnesota state legislature was set to consider just such a bill. Before the public hearing even began, it was announced that the voting on the bill would be "laid over". This is usually a death knell signaling a painful disappointment for those who suffer from Lyme Disease. However, in this case, something very different happened.
Rep. John Ward, chief author of HF 2597, told the committee he had worked out an agreement with the state Board of Medical Practice that would circumvent the need for legislative action.Rep. Ward was the chief author of the bill. The bill simply prevented the state medical board from taking disciplinary action against a physician for prescribing, administering or dispensing long-term antibiotics for chronic Lyme disease. The bill had already passed in the Senate and was likely to be successful in the House.
He had heard from constituents, Lyme support groups and the medical establishment. He knew that the medical board had their backs up about legislation. So, he used their angst about the upcoming law to get the medical board to work with a doctor from the Minnesota Lyme Action Support Group (MLASG) to draft a new board policy.
He made one thing very clear:
“But the ‘stick’ of the Legislature so to speak is still over the (medical practice) board. The House bill will be resurrected if a policy can’t be worked out. It will pass and go to the floor of the Capitol.”
They went ahead with the hearing so that it is on public record.
Minnesotan's were lucky. They have a local doctor, Maloney, who is willing to stand up against the medical establishment. She was able to testify about the fear that doctors face, the lack of reliable testing and the experience of seeing patients get better with long-term antibiotics.
Perhaps equally important, was the testimony of a representative from the Minnesota Pharmacists Association, Laura Keller:
Laura Keller, explained that antibiotic resistance is not caused by overuse, but by underuse, that is, not giving a strong enough or long enough dosage and treatment to kill infections.
Keller also told the committee that treating these kinds of complicated infections must be done case by case and guidelines cannot provide individualized care.
The resolution was passed by the Minnesota Board of Medical Practice on March 13. It was a narrow majority. Still, they capitulated that the science did not yet exist to warrant punishing doctors. The resolution states:
in the interest of allowing time for science to resolve the issue, the Minnesota Board of Medical Practice (MBMP) voluntarily will take a five-year moratorium on the investigation, disciplining or issuance of corrective action based solely on long-term prescription or administration of antibiotic therapy for chronic Lyme disease.
I find the article about the passage interesting. The author goes on to only quote those docs who opposedd the resolution. They use the specious argument that the "legislature should not practice medicine". No legislature is practicing medicine. They are returning the right to practice medicine to the doctor. The other specious argument is "this will release a floodgate". Fear-mongering. Great. As though each case wouldn't be considered on its own merits. They refer to the IDSA guidelines. You know, from that panel that was found to have manipulated the guideline process and to have many, many conflicts of interest. That same panel, who did not follow the agreement with an Attorney General and rigged the vote in the imposed review process. Yeah, they're credible.
The IDSA has had authority vested in them and has been given the means to control the education of the medical community when it comes to Lyme disease. Still, a majority of those on this panel agreed that the science is not there to support disciplinary action against doctors trying to do the best they can to treat their patients.
It is only in place for 5 years and will be reviewed again, then. Perhaps they are hoping the subject will not be so publicly volatile then and they can just let it slip. Perhaps they are genuinely concerned that the guidelines process has been skewed and needs to be reconsidered. Who knows? I can't read minds. It seems to me, though, that this is a bigger victory than passage of a law. If we can start to get the medical community itself to shift its attitude, that would have a far greater impact.
If the medical community can acknowledge that science has not disproved the existence of a persistent illness, perhaps they will fund more research. How many years did they deny that Chronic Fatigue was real before research found the cause? When will they stop calling a patient crazy just because they can't figure out what's making them sick? Perhaps they'll start to accept that the doctors who are treating the patients know best right now. Perhaps, they'll even help us fight the insurance industry so that we can get proper tests and have our treatments covered. I'd much rather see the medical establishment wake up and get on our side, than have to watch state by state legislative battles where the best hope is simply to relieve docs from being afraid to treat. That's something, but not every state will win that battle. And we need so much more.
I close these thoughts with a statement from Dr. Maloney about why this victory is so outstanding. Its a simple statement, yet it encapsulates the gargantuan challenge for Lyme patients tragically having to fight to receive care:
The support group is small and many are ill.
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