Update on the Urgent Lyme Bill Alert and New Info From DC

We're on our own, folks. From the way things are going in Congress, it seems that, for the time being, we will still have to figure out how to fight this disease by ourselves, alongside the few LLMD's who are willing to risk their necks in order to treat us. Below is an update on the Lyme bill proposed in Congress, which would provide funding for Lyme disease research and change the rediculous IDSA treatment guidelines. The response from from Congress is discouraging, but I am encouraged by the multitude of people who are calling to get the attention of the representatives there. So let's keep banging on their door, until they go deaf from the noise and are forced to acknowledge us! In the meantime, we must continue to stick together to help one another to heal from this disease. Together, we can do it. As Pat Smith mentions, we are smart. We are determined, and we are many. And that is a powerful combination for finding solutions.

Update on the Urgent Lyme Bill Alert and new info from DC

Dear Lyme Community,

Your support has been overwhelming. You are taking the time to contact Washington and letting them know you are out there, and you will be heard. Believe me, if they did not know before, they know now. We have heard that 200-300 calls/hour were coming in & one office received over 2,000 calls by late Fri. afternoon.

What is DC's response? I was contacted today by the Energy & Commerce Committee Office and told we have incorrect information on our Urgent flyer, and we need to stop the calls, because it is unfair to committee chairs and E&C-their phone lines are tied up. I told him if he wanted to know what unfair was, I would tell him. I did. I told him about IDSA preventing you from getting a diagnosis with its guidelines, I told him about your inability to get treatment, about children being removed form families for the crime of having them treated for Lyme by a licensed physician. I told him the stranglehold IDSA has on this disease and how they promulgate only the science they have accepted as real and how Congress was choosing to listen to IDSA's voice and not yours. I said, this is America, a place where diverse views can be expressed everywhere on anything, but not on Lyme disease.

I told him how every other major disease has a patient voice in the process, Lyme does not. I told them Lyme patients are not "uneducated" as some have attempted to portray them. They are very smart and include people from all walks of life including professionals. They know their disease, and they are tired of IDSA telling them they are not improving with antibiotic treatment
when they know they are. They know IDSA is trying to take away the only opportunity they have for a voice in their fight to regain control of their lives by defeating this disease. I said these people do not need me to draw the lines for them and connect the dots.

I told them patients have lost their patience. They sat by and waited while Congress said war was a priority, while Congress said West Nile was priority, while Congress said the economy was priority, and "Martian Fever in Timbuktu" was a priority. They've waited 10 years to have their bill
heard. They do not want to wait any more. And like AIDS was many years ago, Lyme is now-patients are increasing in numbers, yet have few doctors willing to run the political risk of treating them. Global warming is increasing Lyme disease cases. People are becoming afraid to venture outdoors in many areas. And CDC case numbers are only the tip of the iceberg. If he were
content to listen to CDC numbers, he would be sadly misinformed. Numbers of tick-borne disease cases far surpass that. Patients were not going away, in fact, their numbers are rising. Public health is not doing its job concerning Lyme disease, and I said that is why I remain involved, I could
not turn my back on these patients.

On the call, I was given no indication or hint of any kind that anything would be done with the bill at all. When I asked what information on the flyer on our web site was incorrect, I was told the part about "Energy & Commerce is making up a list of the only health bills to be heard NOW." He
said that is incorrect. I told him we were told that by someone at the office there. He said that is not true (LDA stands by its source) and that we are not helping the cause by making these phone calls. When I asked what would help the cause, I got no answer.

He said they got the message. I disagreed. If they got the message, I said, they would have the bill scheduled, since we are almost a year and a half into the session and you have nothing on your Health Subcommittee agenda. No hints or assurances that anything could or would be done were given. Again he said I should tell patients to stop the calls. I said I could not do that, patients have heard all over the Hill that E&C refuses to schedule a hearing due to IDSA pressure. He never responded to that nor made any reference to that as being incorrect on our flyer (Flyer says "IDSA is dictating public policy and your health. Because of its interference, we cannot get a hearing on the Lyme bill.")

We had a lengthy discussion. He said my comments would be relayed back, and I said I would tell everyone what he said about the information on the flyer being incorrect and that I would also say we heard differently, but that I would not tell patients they had to stop calling. They want action and have been patient for the 10 years bills have been in Congress, and I have no right to tell them they should stop calling because some offices were inconvenienced. Try living with Lyme for 20 years or caring for a family member with the disease. Bottom line, for me, a healthy person in the fight
for 20 years, I would not tell patients something I did not feel was justified, nor would I desert or mislead Lyme patients fighting for their rights and their lives.

Pat Smith, LDA President

<*> Oregon Lyme Disease Network
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