Federal Lyme Initiative

[Guest guest]

Re: Federal Lyme Initiative:

Sorry it took so long for me to respond so to refresh your memories ...

From Marta on the Lyme Disease Association of New Jersey ...

> ... Not to mention what they have accomplished politically with the

> Lyme legislation recently introduced by in Congress,

> requesting millions of federal dollars to fund more assistance and

> research for Lyme disease.

> Marta

>

> Dear Marta: What ever happened to the legislation? Did it die in

> the Omnibus bill?

> Lovette

>

> Dear Marta and Lovette: Technically the bill is still in committee so > it

appears it will be dead for this particular legislative session. But, > it

will be reintroduced in the 1999 legislative session.

> Liz

>

> Dear Liz: Thanks for the info! Keep after them, or they'll forget

> about us!! Is there anything the rest of us can do to help?

> Lovette

YES. Congressman is planning on reintroducing his bill in

the House. You can also urge Senator Dodd, CT to do the same in the Senate.

After it is reintroduced the LDANJ will be working hard to raise awareness

about the bill and the need for the Lyme community to become active in getting

it passed.

At the moment, as Database Chairman of the LDANJ, I am still collecting names

of everyone interested in Lyme and supporting this legislation so when the

time comes we will be able to disseminate information as quickly as possible.

We are especially looking for Support Groups in the 25 states that are NOT

listed below. It would be very powerful if we have representation from

support groups in all 50 states next time.

This past June Pat , President of the LDANJ, wrote a letter * of support

which was sent along with Congressman 's letter to all legislators. In

only 5 days I was able to find 65 Lyme support groups and organizations in 25

states to sign on in support of our letter. The states represented were:

Alabama, Arizona, Arkansas, California, Connecticut, Florida, Georgia, Iowa,

Illinois, Indiana, Kansas, Massachusetts, Michigan, Minnesota, Missouri, North

Dakota, New Jersey, New York, Ohio, Oregon, Pennsylvania, South Carolina,

Tennessee, and Wisconsin.

* THE LETTER

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The Lyme Disease Association of New Jersey, Inc.

PO Box 1438

, New Jersey 08527

June 3, 1998

Dear Congressman ,

We are writing to register our support for the Lyme Disease Initiative 1998,

HR 3795. This bill would authorize much-needed money for research for Lyme

disease and prioritize Lyme disease research, treatment, education and

prevention programs. Its passage and enactment will provide hope to the tens

of thousands of individuals in this country who suffer the debilitating

effects of this illness.

We, the undersigned organizations, are dedicated to facilitating reliable

treatments and cures for this mentally and physically crippling disease.

Every day, we encounter its effects on people in all walks of life: military,

civilian, adults and children.

Frequently, insurance coverage for the astronomical costs of treatment for

this disease is inadequate, and in many cases, individuals are faced with

bankruptcy, loss of employment, loss of education, and forgone opportunities.

To date, the government has essentially turned a blind eye to these

individuals, but with a 32-fold increase in reportable cases since 1982, it

can no longer afford to do that. The estimated economic costs alone to the

government and to those individuals are startling, with one 1992 study co-

sponsored by the Lyme Disease Foundation and the Society of Actuaries

estimating an annual cost to society of $1.2 billion for Lyme disease.

The problem is only going to get worse unless decisive action is taken now.

Growing populations of infected deer ticks, a greater variety of ticks

carrying and possibly transmitting the disease, and the possibility of other

insect vectors are now under discussion. Dr. Willy Burgdorfer, for whom the

Lyme bacteria is named, spoke last month at the 11th International Lyme

Conference in NY about studies of the demonstration and isolation of the Lyme

bacteria in some European mosquitoes. The implications of this possibility

are staggering.

This year, experts are predicting a bumper crop of ticks and insects due to El

Nino. Indeed, the vast numbers of phone calls we have received to date

relative to tick activity would seem to support this prediction.

The money included in this bill, as well as the focus on an effective

detection test, physician education, reevaluation of the Centers for Disease

Control criteria for Lyme, and creation of a Federal Lyme Disease Task Force

will go a long way toward stopping the spread of this catastrophic illness and

to helping to put an end to the suffering of its victims.

We wholeheartedly support this bill. Lyme disease does not discriminate based

on party affiliation; it can strike down anyone, especially those who work or

recreate outdoors. Consequently, we urge all Members of Congress to support

prompt consideration and subsequent passage of HR 3795.

Thank you for considering our views in this important health care matter.

Sincerely,

V.

President, Lyme Disease Association of New Jersey, Inc.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

If you would like to be added to our regular postal mail database and receive

updated free information 2-3 times a year (only members receive monthly info)

please send your names, postal addresses, e-mail and phone (optional for

individuals) and support group names (include leader's name if known),

addresses, emails and phones (needed for SG's) to:

L10Graham@... (Liz Missett)

or

The Lyme Disease Association of NJ

PO Box 1438

, NJ 08527