More than 50 Lyme disease patients, toting lime green signs, rallied in front of Senator Kemp Hannon's office in Westbury last Wednesday afternoon, chanting, "Senator Hannon hear our pleas! We need your help to fight Lyme disease! Senator Hannon pay attention! Lyme disease needs intervention!"
Protesters traveling from as far as Connecticut and Dutchess County, claim the senator refuses to support any companion legislation in the Senate to the Office of Professional Medical Conduct (OPMC) Reform Bill A11330, which provides due process for physicians that treat Lyme disease and are being investigated by the OPMC New York State agency. This proposal has not yet been reported to the floor of the Assembly either for possible action by that body.
Voices of Lyme/NYLyme, a completely grassroots organization that has been working for the past two years to stop OPMC harassment of doctors who treat the disease, organized the rally.
Doctors who treat Lyme disease and are practicing in New York and other northeastern states have been investigated, disciplined or have had their licenses revoked over the past three years when medical boards questioned their right to treat the illness in ways they believed were necessary, according to Voices of Lyme/NYLyme.
Further, some insurance companies believe Lyme disease can be cured with as little as four weeks worth of antibiotics while some doctors and their patients say that in rare cases, the infection could require prolonged treatment with antibiotics, nutrition counseling and physical therapy, costing thousands of dollars.
A11330 would amend the public health law, in relation to proceedings and administrative review by the state board of professional medical conduct. Specifically, it would expand provisions to include physician's assistants or specialist's assistants; provide investigation and interview notice requirements and ensure that hearings shall be conducted in accordance with fairness and due process with the committee's conclusion based on clear and convincing evidence.
Protester Dorothy Kaplun of Uniondale explained, "The bill pertains to more than just Lyme disease. It is for all diseases that don't cure rapidly and need long-term care such as Multiple Sclerosis, ADHD (Attention Deficit Hypertension Disorder), arthritis and Lou Gehrig's disease. And it's not just about medicine."
Jill Auerbach, coordinator of the Hudson Valley Committee for Lyme Disease Patient Advocacy, said Hannon, who is currently chair of the Senate Health Committee, has a lot of weight regarding this issue because of his position. "Doctors are so afraid of being prosecuted by the OMPC or having the insurance companies come after them and drop them as providers, which is what has happened to many of the physicians who treat Lyme disease, that they actually back away from treating Lyme patients," Auerbach said.
"It is becoming increasingly difficult for people with chronic Lyme disease to find appropriate care ... It is just not understandable why he will not support his own constituents. He's been ducking this issue and we can't even find out what his objections are.
Protester Ellen Lubarsky said after numerous phone calls to Hannon's office, he finally returned the call days before the scheduled protest, stating A11330, if passed, would protect bad doctors.
Hannon's objections, according to Voices of Lyme/NYLyme, state he is concerned that giving physicians due process would enable guilty physicians to avoid prosecution; that disclosure of an expert witness' connections prior to the actual hearing might enable peers to pressure the expert witness not to testify; and would prefer that the physician be notified about the type of complaint, either financial or medical.
Lubarsky, after hearing Hannon's reasoning, said, "apparently he has not read the bill."
According to a spokesperson from Hannon's office, a companion bill has been introduced in the Senate recently and is currently in the Rules Committee. "We are actively focusing on a bill just introduced in the Senate on the consideration of changes to the Office of Professional Medical Conduct," Hannon said in a prepared statement.
"However, this bill is not in the Senate Health Committee; it was only introduced a few days ago and is currently under review by the Rules Committee. Furthermore, this proposal has never been reported to the floor of the Assembly for possible action by that body."
A local 27-year-old East Meadow patient no longer able to drive because of the disease's debilitating effects to muscles and joints, said unless they are assured due process, physicians who treat chronic Lyme disease will continue to be subject to unjust prosecution. Her grandmother, a 54-year Garden City resident who said she's "just so upset" her granddaughter is suffering from the disease and nothing is being done about it, also attended the protest.
"I've been fighting this fight for years and Hannon still has not acted on it," the East Meadow resident, who wished to remain anonymous, said. She and other patients just like her view Hannon's stance as an allegiance to insurance companies rather than to seriously ill people suffering from the disease.
Pat Smith, president of the Lyme Disease Association, testified before the New York State Assembly back in January and said secrecy surrounding the process should be scrutinized. "Currently, doctors are never told the original complainant or complaint. It puts the doctor in the position of not being able to confront his/her accuser," Smith said in a written statement. "While some secrecy is understandable, the legislature might consider a more equitable practice. At the least, complainants could be separated by category. For example, patients, insurance companies, peers, other entities."
She also said due process is often a hot topic. The Federation of State Medical Boards supports due process, she said, and states on their website (www.fsmb.org) that whatever the complaint, physicians are afforded the rights of due process as the board investigates a complaint of misconduct. Due process states that an individual is innocent until proven guilty and apply to formal hearing/judicial procedures."
Lyme disease symptoms vary with each patient, making individual treatment necessary. Staci Grodin of Manhattan contracted the disease eight years ago. It took her eight months - going from doctor to doctor - to get the right treatment. With on and off treatment, Grodin is 95 percent cured.
"There are patients who want to be treated and these doctors are scared to treat them because they are scared their licenses are going to be revoked or they are going to be put on trial by the OPMC," she said.
"It is insane that this goes on. You tell people who aren't involved with the disease what's going on and they look at you like you have three heads. They ask, 'What are you talking about?' 'How can your doctor not treat you?' or 'How can you not find a doctor to treat you?' This is such a political disease and we really need to get this passed by Hannon so these doctors aren't continually being harassed. Imagine if cancer doctors were being harassed. It just doesn't happen.
"There are so many different systems and no body can put the whole package together. If you're dark-skinned, you won't get a rash. There is not a proven treatment. With this disease it takes research and it takes new innovative treatments ... It is such an individual disease. It affects each person so differently - depending on their immune system, depending upon their age, depending on how long they go undiagnosed. We really need doctors who are going to listen and going to treat you as an individual."