Tina J. Garcia

544 South Solomon Street

Mesa, Arizona  85204

480-830-2788

June 23, 2005

Mr. Victorio Vaz, Office Chief

Office of Infectious Disease Services

Arizona Department of Health Services

150 North 18^th Avenue, Suite 140

Phoenix, Arizona  85007

            Re:      Lack of Diagnosis and Treatment of Lyme Disease

                        and Co-Infections in Arizona

Dear Mr. Vaz:

            Thank you for responding to my initial correspondence regarding the CDC case surveillance definition for reporting cases of Lyme disease.

            It is encouraging that copies of the Lyme disease case definitions were sent to all county health departments in September of 2004.  Would you please clarify for me:  Was that information sent out by the CDC or by the Arizona Department of Health Services?

            I have been in touch with an officer at the CDC who has informed me that the case surveillance definition has not changed and that this information is always available to state and county health departments.  She informed me that if I believe a physician is misusing the case surveillance definition in diagnosing Lyme disease, I should contact the Arizona Department of Health Services and the State medical boards.

            My concern is that the case surveillance definition for Lyme disease is getting lost among all the other case definitions and is going unnoticed.  I am well aware of the CDC statement that the case surveillance definition is not to be used for clinical diagnosis or management.  However, from my own experience with physicians in the State of Arizona, I have found that they are misusing the case surveillance definition and are also deferring to the Arizona Department of Health Services as a source of their information.  Therefore, your agency does hold an extremely important position in disseminating information about Lyme disease and co-infections to physicians in the State of Arizona.

            You see, I have been told more than once that there is not ONE reported case of Lyme disease having originated in Arizona.  I am currently checking with my Lyme-experienced physician to see if my case qualifies as reportable.  Mr. Vaz, I was bitten by a tick south of Cordes Junction, Arizona in November of 1998.  I have a history of erythema migrans and am now in the late, chronic stage of Lyme disease with late manifestations, with erlichiosis as a co-infection.  I have a positive Western Blot from IGeneX, a highly-specialized tick-borne disease lab in California, and a low level of Borrelia burgdorferi antibodies in my cerebral spinal fluid.  I have informed two infectious disease specialists on my heath plan, one of them being very highly regarded, of this pertinent history; yet, I have been dismissed by both of them
 

Mr. Victorio Vaz

June 23, 2005

Page Two

because in their words, “According to the Arizona Department of Health Services, there is not one case of Lyme disease originating in Arizona.”  The consequences of this stance are that they refuse to diagnose and provide desperately-needed antibiotic treatment and the bacteria continue to replicate in my body.  Just as having untreated tuberculosis causes severe, chronic illness, the Borrelia burgdorferi bacteria which causes Lyme disease also wreaks havoc with the musculoskeletal, neurological and sometimes cardiac systems of the body.  It is a chronic, debilitating infection.

            If physicians refuse to recognize the possibility of Borrelia burgdorferi in ticks in Arizona, deferring to the Arizona Department of Health Services for their information, they will neither diagnose nor treat severely-ill patients.  Thus, cases will not be reported to your agency, your agency will state that there are no cases originating in Arizona, the physicians will continue to use this information to deny diagnosis and treatment and the cycle continues.  In the meantime, patients need to bear the burden of paying for treatment themselves, sometimes traveling out of state to obtain it.  There are approximately 130 members of the Arizona Lyme Disease Association and none of the members in the Phoenix metropolitan area have been able to obtain diagnoses or treatment from any infectious disease specialists in the Valley.  This is unconscionable!

            I hope you can now see the magnitude of this problem and understand my deep concern for myself and other Lyme disease patients in Arizona and across the nation.

            Due to the fact that requirements for reporting disease are mandated by state laws or regulations, and Lyme disease is considered a reportable disease in the State of Arizona, I am respectfully requesting that an additional effort, above and beyond what is normally required, be made by the Arizona Department of Health Services to inform county health departments and physicians of the comment that you provided to me from the CDC that, “It is important to note that Lyme disease surveillance case definitions were developed for national reporting; it is NOT intended for clinical diagnosis or management.”  Would you at the same time also provide to them current information that cases of Lyme disease have been reported in Arizona and that species of ticks do exist in Arizona that carry the Lyme disease bacteria? 

            There are many patients here who are unable to obtain treatment, even though they contracted the disease elsewhere.  It is a fact that the Ixodes pacificus is found in Arizona and it is also a fact that Lyme disease is very prevalent in dogs in Arizona from tick bites, along with erlichiosis.  These infected dog ticks can also infect humans.  Relapsing Fever has been reported at the Grand Canyon and Rocky Mountain Spotted Fever has been reported in the White Mountains.  Is it so difficult to acknowledge that Lyme disease also exists in Arizona? 

            Please also provide to the above-listed entities and parties information that states that tick-borne diseases, including Lyme disease, do exist in Arizona.    Hopefully, this will encourage physicians here to research the subject further and they may change their stance to one that will allow them to work as a team with their patients who complain of symptoms indicative of Lyme disease, instead of turning them away without treatment.  We have been complacent for too long while severely-ill patients are suffering physically, emotionally and financially; let us be complacent no longer.

Mr. Victorio Vaz

June 23, 2005

Page Three

            There is a Bill before Congress, H.R. 2526, which will establish a Tick-Borne Disorders Advisory Committee.  This Bill exists because there is an epidemic of Lyme disease and co-infections in this country.  Birds do migrate to Arizona from other tick-infested locations, and we are not immune from these bacterias and parasites. 

            Please take a proactive stance by disseminating the information specified above to the entities and parties listed.  Please be so kind as to inform me of the decision as to whether or not your agency will proceed with this suggestion.

                                                                                                Sincerely,

                                                                                                Tina J. Garcia

                                                                                                A Concerned Lyme Patient

:tjg

Cc:      Senator Jon Kyl

            Senator John McCain