Lyme disease is a hot mess, and that's an understatement. For anyone who is new to the disease, you soon learn that diagnosis and treatment is not in black & white. I go to Harrisburg for the Banking and Insurance Committee Hearing for PA Senate Lyme Bill #1199. The purpose is to gain support from the committee to pass this bill which calls for greater measures for; the prevention and education of lyme disease in PA, the availability of information for patient and doctor from both the IDSA and ILADS protocols, that insurance cover costs based on treatment chosen by the doctor and that regardless of which protocol doctors choose to treat chronic lyme disease with, they will not be condemned by their medical board. ( A link to the right will guide you to the bill for specifics.)
IDSA vs ILADS GUIDELINES
IDSA = Infectious Disease Society of America -
1. Lyme Disease is not chronic
2. Long term antibiotics, anything beyond 14-28 days, (I was on them for 4 months), will not cure lyme disease
ILADS = International Lyme and Associated Diseases Society -
1. Lyme Disease can be chronic
2. Long term antibiotics are sometimes necessary
Insurance companies base coverage on the IDSA and CDC (Center for Disease Control) criteria for lyme disease treatment. Therefore, often when a doctor chooses to treat a patient beyond the 14-21 day treatment outlined by those organizations, insurance will not pay beyond 21 days. Patients then have to pay out of pocket for what can sometimes be exorbitant costs for their antibiotics. Also, there are cases pending now, most famously Dr. Jones in Connecticut, in which doctors stand to have their license revoked for choosing to treat patients in "unorthodox" ways, read outside the established IDSA and CDC guidelines. You can read both the IDSA and ILADS guidelines at the links to the right.
The hearing is informative and emotional. Julia Wagner, Chair of Montgomery County Lyme and LymeAction PA gives data and personal stories about how lyme is effecting PA residents. Meghan Gallagher, a 16 year old, and her mother testify about the devastating effect lyme disease has had on her. Pat Smith, President of the Lyme Disease Association, and who I have heard speak before, presents her data as well. The most powerful moments for me is when lyme patients in the gallery stand up and say what lyme disease has done to them and their families. There is a woman sitting down the row from me who can't stop twitching her legs and arms, and I notice there are people who have crutches and walkers. I look around the room and see myself last year in some of the lifeless, zombie like eyes of the others. This is what lyme disease does to people.
Doctors testify about their practical, clinical experience with lyme disease, and that treating patients long term is effective. They also present data and statistics on the occurrence of lyme disease in PA. Someone from the department of health testifies and is called to task by the committee because he doesn't have an answer as to why lyme disease is not being taken more seriously in the state, and why there isn't more education about prevention and diagnosis. The problem too is that the doctors themselves are not even as educated about it as they should be.
A gentleman from a company that represents many insurance companies presents his perspective. He is not very popular with the lymies. He says he has had lyme disease himself, albeit he had a rash and was cured right away. He says that had he known what he knows now, he would have taken the proper precaution, as if wearing long pants and long shirts will solve everything. He stands by the insurance company's decisions to base coverage on the IDSA guidelines.
The outcome of whether or not the bill will be passed is pending. However, it was empowering to see the light bulbs go off in the heads of each of the committee members as they really understood how devastating lyme disease can be. Chairman White said, "I am embarrassed to admit how little I knew about this disease until right now." And many times, when Senators recapped what they understood about the disease and made a relevant point that the lyme community has wanted to be heard on, the gallery would erupt in loud cheering. I am feeling positive about lyme disease and how it is going to be handled in PA in the future. And regardless of the outcome of this bill, I still plan to do my small part and educate everyone I know about lyme disease.
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