“What can I do?” they ask. 
“After all, I’m only one person.”
 

In 2006, an investigation was conducted by Connecticut Attorney General Richard Blumenthal into possible antitrust violations committed by the Infectious Diseases Society of America (IDSA).  The investigation revealed numerous conflicts of interest that involved the authors of the IDSA’s 2006 Lyme disease treatment guidelines.  In the Attorney General’s words:
 

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions.”
 

The legal Agreement reached between the Attorney General and the IDSA called for an independent Review Panel to provide an unbiased review of publicly-submitted medical research for and against revision of the guidelines, guidelines that insurance companies use to deny diagnosis and treatment of this devastating, chronic infection. 

IN April of 2009... 

….the deadline for submitting research to the Lyme Disease Review Panel members was only two days away.

I was still suffering residual symptoms from ten years of chronic Lyme disease that included neurological deficits and unrelenting pain and fatigue.

I almost convinced myself not to undertake the project of pulling medical research and compiling it into a meaningful presentation to submit to the Panel.
 

“What difference can I make?”
I tried to reason with myself.
“After all, I’m only one person.
I can’t do everything.”
 

Had I listened to my “tired self,” I would have missed one of the greatest opportunities ever afforded to me as a Lyme disease patient advocate.  I faced a decisive fork in the road. 

I could take a leisurely stroll down Lazy Lane or a four-wheel drive excursion down the Old Advocacy Trail.

Whether it was fortitude, anger about the inhumane denial of Lyme disease treatment, spiritual inspiration or a mix of all three, I chose the rough road and sat down at my computer. 

I figured I only had one chance to speak my mind – a mind that had recorded numerous instances of medical injustice perpetrated against Lyme patients by what I call the Lyme Medical Cartel. 

I had experienced denial of diagnosis and treatment several times myself and had listened to countless stories over the phone from patients across the U.S.  I had read thousands of emails of stories written by suffering Lyme patients around the world. 

I wrote a poignant, six-page letter to the IDSA Lyme Disease Review Panel members.  It was professional, but it certainly packed a powerful punch.

 It took me several hours to compile the info; then I faxed my letter, along with sixty pages of research and personal comments.  I wondered how my submission would be received by the Panel members.

 My answer arrived on May 15, 2009...

 …..I received an invitation from the IDSA to present testimony before the Review Panel at a hearing scheduled for July 30, 2009 in Washington, D.C.  I was selected to speak, along with one other patient advocate and sixteen scientists and physicians. 

I accepted the invitation to be a spokesperson for the worldwide Lyme disease patient community.  I received numerous emails from patients in the U.S. and Europe, who expressed their heartfelt thanks and spiritual support.  I received donations from patients and families burdened with paying for expensive medical treatment not covered by insurance.  I am grateful for donations received from these cherished patients and many other wonderful supporters, donations that provided the means for me to travel to the hearing to testify. 

My hosts in D.C. provided me with more support and assistance than I could have imagined.  A luncheon was held in my honor by a group of mothers of children with Lyme disease.  It was a heart-wrenching and heart-warming afternoon spent with these brave mothers, some of whom also have Lyme and suffer doubly on behalf of themselves and their ailing children.

I am truly grateful for the opportunity provided to me this past year.  Being able to speak on behalf of so many suffering people was a positive and life-changing experience that I will always cherish.

“What can one person do?” 

One person can follow his or her heart and respond to provide service to others.  One person can muster the courage to speak the truth in public.  One person can place the needs of others above his or her own.  I continually marvel that I nearly rejected this most-wonderful opportunity to serve.  Yet in the final hour, I did choose to take the rough road and followed my true heart in doing so.

Allow me to share the closing remarks of my testimony at the hearing:
 

“On behalf of suffering patients, I must ask that the CDC and IDSA Guideline authors and their other spokespersons stop making fraudulent public statements that chronic Lyme infection does not exist, due to the fact that the IDSA Guideline authors themselves proved years ago that Bb is a persistent chronic infection.

The denial of chronic Lyme infection in the IDSA Guidelines causes patients to question Lyme vaccine development. Acknowledging chronic Lyme infection would extend the time needed for vaccine clinical trials and approval. Stating that chronic Lyme infection doesn’t exist and sweeping suffering patients under the carpet is one way to avoid this problem.

Why the focus on a vaccine instead of expanded treatment protocols, studies of congenital, blood transfusion and sexual transmission, and correction of the vaccine-friendly Dearborn two tiered-testing criteria?

The horrible truth is the secret that is being kept from the public. A secret that the worldwide Lyme disease community already knows -- because we’re living it – that Lyme disease is a very serious and complex infection and a lot of money is being made through the manipulation of this disease – through research funds, patents for test kits, and vaccine development, resulting in the medical neglect of thousands, if not millions, of suffering people.

Chronic Lyme disease is a debilitating and torturous infection. Patients are bedridden, using walkers and wheelchairs, suffering relentless excruciating pain, and inhumane denial of medical treatment. This is a shameful travesty that should shock our collective conscience and spur compassionate change.

Extensive revision of the Guidelines is necessary and focus must be redirected toward neglected patients. After all, for whom are the Guidelines supposed to be written? Let’s make it for the patients this time. 

In closing, we are here before government officials and attorneys, scientists, physicians, advocates and patients around the world. May we also remember that we are acting before our Creator, and honor the fact that honesty and accountability are requirements for our well-being, as individuals and a society.

Let us use the power of discernment to recognize improprieties and exhibit the courage to take the uncomfortable, but necessary, steps to correct them. For the preservation of truth and integrity is paramount to our standing, in this world and the next.”
 

Whether or not the IDSA Guidelines are revised,
so that patients receive the medical care they desperately need,
L.E.A.P. will continue to provide education about this issue.

The sad truth is that we cannot rely upon the CDC or the IDSA
to disseminate to physicians the vast amount of medical research
that so clearly proves chronic Lyme infection.

We need funds to further this important education
and to provide financial assistance
to as many patients as possible this year.

Therefore, we urgently need your help
to fulfill this Mission!
 

Remember -- one person really can make a difference!

And that one person can be YOU!
 

Please partner with us to help desperately-ill patients who are so sick they cannot work or attend school anymore.  Losing one’s health, career and home is devastating, and with the economic downturn, the situation is beyond serious for those who are sick and struggling to pay for treatment not covered by insurance.
 

DONATIONS will assist with

DOCTOR VISITS ♥ TESTING ♥ TREATMENT
♥ HOUSEHOLD EXPENSES ♥

 
Your compassionate response is sincerely appreciated
and will make a monumental difference
in the lives of suffering Lyme disease patients!

 
L.E.A.P. Arizona is a 501(c)3 tax-exempt, public charity.
Your donation is tax-deductible.

Thank you for your past and current support!

We wish you Good Health and a Wonderful New Year!

Gratefully yours, 

Tina J. Garcia
Founder
 

Lyme Education Awareness Program
P.O. Box 2654
Mesa, AZ  85214-2654

Email:  leaparizona@yahoo.com
Phone:  480-219-6869
Fax:  480-830-2788