Joann M. Crupi
Editor, Opinion Pages
Albany Times Union
Ms. Crupi:
Is New York State in meltdown? Did Nero fiddle while Rome burned?
To us outsiders in the hinterland of Texas, it sure appears so. Your upstate politicians won’t talk to the downstate politicians (read hate). Outsiders usurp nominations for your U.S. Senator (come on, the qualifications aren’t that great!). With health care in crisis everywhere, NYS attacks the doctors?
This last factor really gained my attention. I’m one of those people West-of-the-Hudson, where Lyme disease supposedly doesn’t exist. So, lacking experienced doctors (they’re way, way underground), we look to the east coast for direction, and in many cases, travel there for treatment. The New England area has the highest concentration of reported Lyme disease, so naturally, it would have the highest number of experienced Lyme-treating doctors.
Unknown to those dancing with the fiddlers, both the US and NYS governments are using your tax dollars to settle a scientific controversy; should Lyme be treated with short- or long- term antibiotics? Both camps have tons of studies (some flawed, some not) to bolster their argument. The NYS Office of Professional Medical Conduct (OPMC), in its recent prosecution of Dr. Perry Orens, has officially embraced the short-term side to "fully prosecute" Lyme physicians for "misconduct" because they use long-term therapy; terming this "inappropriate." We patients with chronic Lyme know what works, but our letters of support and testimony are just file material, not "evidence."
When the OPMC completes its mission of enforcing standardized treatment of all diseases, I foresee short-term benefits and long-term consequences.
Short-term, you’ll have fewer "foreigners" coming through "your" transportation terminals, and shorter appointment waits for "your" doctors. You should also see lower health insurance premiums (sure!!), because the health care organizations will know to the penny what it takes to treat any disease. You’ll also know, without calling for certification, whether your disease is covered. If treatment exceeds a certain dollar threshold, it isn’t covered. Period.
Long-term, you’ll have more people on Social Security Disability because their treatment needs fall outside the dictated standardized allowances. Since Social Security in any form doesn’t meet either retirement or health care needs, more of you will jeopardize your jobs by taking time off to care for loved ones. Or you’ll burden your own retirement fund placing them in skilled nursing centers, or on the streets. You’ll also find that you’ll be referred to other doctors more often, driving up your out-of-pocket expenses, because the doctor knows that officially there is only so much s/he will be allowed to do.
Rantings of a Lyme Lunatic? Dr. J. J. Burrascano, next up for OPMC prosecution for this type of "misconduct", predicted just this in his 1993 testimony before the US Senate Committee on Labor and Human Resources, entitled "Lyme Disease: A Diagnostic and Treatment Dilemma."
There is no argument about the need for an OPMC. The court dockets and the graveyards have an overabundance of examples on why Governor Pataki called for its establishment, and proudly points to the prosecution rate.
However, on closer examination by this outsider, the OPMC has strayed from their charter of investigating and prosecuting medical misconduct, and is now actively embroiled in medical politics.
Unfortunately Governor Pataki, himself a Lyme victim, remains unaware of this controversy. His office staff is shielding him from it. The chronic Lyme community, outraged by the OPMC Salem witch hunt tactics, recently undertook a massive phone, e-mail, fax, and snail mail campaign requesting Governor Pataki to intervene; to ensure that the OPMC use all medical evidence in its prosecution, not a carefully selected, politically motivated sub-set.
Reportedly, his staff has forwarded these requests to the very same "fox in the hen house" for action. At least the Police Department has an ethical Internal Affairs section. We know from correspondence that the OPMC doesn’t.
New York, wake up, before your doctors become as afraid of treating political diseases as the West-of-the-Hudson doctors are. That fiddle is out of tune. Don’t let the Texas Two-Step become a PC lock-step.
Nationally, the chronic Lyme community has now banded together and enlisted the support of Ms. Monica Miller to visit/lobby New York legislators. These visits are to educate them in the larger body of knowledge of Lyme disease not being used by the OPMC, and to enlist their support. We felt this personal touch was imperative due to our experience, and lack of success, with Governor Pataki’s office. Yesterday (2/7/2000), Ms Miller had an appointment with NYS Senator James J. Lack. In Ms Miller’s own words, here’s how it went:
"I walked into Senator Lack's Capitol office and thanked him for meeting with me. He said fine and showed me a chair. I told him that I was aware that he had family experience with Lyme disease (his daughter) he nodded yes. Then I said, "Well, the Department of Health has taken the position..." and he interrupted me a tantrum of yelling and hollering and accusations about "Those two quacks" and ordered me to leave his office. I had shown him nothing, nor had I said anything other than "Well, the Department of Health has taken the position..."
He screamed and yelled, and accused me of never having suffered, and yelled that I could not speak to him until I had suffered a loved one's Illness (my husband died in my arms of Cancer -- I think I know something of suffering). He rambled about the quackery of three years of anti-biotics, However, I could not understand most of what he said for the volume and incoherence of his tirade.
In 11 years of lobbying in NY and several other states I have never experienced such horrendous behavior. His yelling was loud and inflammatory. And although he said some things I actually agreed with, about protecting Lyme patients for example, when I told him I agreed he actually increased the volume and vitriol of his attack! He sent me out his door, where I wavered in disbelief! He opened the door two more times to yell at me and threaten my removal from his office. Still, not four sentences had I uttered, no position had I taken --I hadn't told him a thing. His tantrum was completely of his own invention. Or was it?"
Another avenue closed? Are all you New Yorkers crazy? Are there enough fiddles to go around?
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