Letter from LDA President...

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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 website 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