(Transcribed May 10, 2000 - THIS IS NOT, REPEAT, NOT THE OFFICIAL MINUTES. Any errors are my own. R. James Martin)

MINUTES

SENATE COMMITTEE ON ADMINISTRATION
Thursday, March 16, 2000
9:30 a.m.
Capitol Extension, Room El.028

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Pursuant to a notice posted in accordance with Senate Rule 11.18, a public hearing of the Senate Committee on Administration was held on Thursday, March 16, 2000, in the Capitol Extension. Room El.028, at Austin, Texas.

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MEMBERS PRESENT:
Senator Chris Harris
Senator Rodney Ellis
Senator Florence Shapiro

MEMBERS ABSENT:
Senator Frank Madla
Senator John Whitmire

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The chair called the meeting to order at 10: 10 a.m. Susan Combs, Commissioner of the Texas Department of Agriculture was also present. Senator Harris expressed his excitement at having Commissioner Combs in attendance and taking a personal interest in the Lyme Disease question in Texas. In his mind, the Commissioner and the Department of Agriculture could be an integral part of helping the state come to some level of understanding and hopefully some management of the problem.

The next order of business was to hear invited testimony concerning the education, diagnosis, treatment and other issues surrounding tick-borne illnesses in Texas.

Listed in the order of their testimony are the following:

Gary Graham, Director of the Wild Life Division of the Texas Parks & Wildlife Department
Bryan Richards, Texas Parks & Wildlife Department
Julie Rawlings, Texas Department of Health
Dr. Joseph J. Burrascano, Internist in Private Practice
Jill Wiggins, Texas State Board of Medical Examiners
Kevin Foy, Texas State Board of Medical Examiners

There were questions and exchange between the speakers and committee members during the above testimony.

 

(Transcribed May 10, 2000 - THIS IS NOT, REPEAT, NOT THE OFFICIAL MINUTES. Any errors are my own. R. James Martin)

SENATE COMMITTEE ON ADMINISTRATION
Minutes
Thursday, March 16, 2000
page 2

After the invited testimony Senator Harris called for public testimony.

Public testimony continued with the following speakers:

Hamid Moayad, M.D., spoke about patients he has treated in his practice with Lyme Disease and the problems he has encountered with the Texas State Board of Medical Examiners.

Love Nance, testified as to the difficulty in getting a correct diagnosis other illness and the profound effects her Lyme disease has had on her life. By the time she had finally received a correct diagnosis she was so ill that she had to be hospitalized. She credits Julie Rawlings with the Texas Department of Health with saving her life. Ms. Rawlings put her in touch with Dr. Joseph Burrascano from New York who confirmed her illness and presently treats her.

Patricia W. Ricks, thanked Lt. Governor Perry, Senator Harris and the Administration Committee for conducting these hearings. She testified about the impact Lyme Disease has had on her family. She told about the activities she and her family participated in before their infection; where they believe they became infected; and the problems with getting diagnosed and treated in Texas. She stated that their infectious disease doctor told her there was no Lyme Disease in Texas. She gave credit to Julie Rawlings with thc Texas Department of Health with confirming that there is Lyme in Texas. (Testimony attached )

Hunter Johnson, a ten year old who talked about when he was six and after playing at his family's ranch he got a round rash. It was diagnosed as an insect bite and nothing to worry about. He got sicker and sicker and was finally taken to a doctor in the Northeast who knew about Lyme. He is being treated and feels better. He missed half of the third grade and still has to stay home every Wednesday to rest. He's had surgery so he can have IV medications every day. He wants to be a normal kid who can play and not have to be sick.

Lisa Johnson, Hunter's mother. Lisa testified about her family of four being infected with Lyme Disease probably contracted at their family ranch. She talked about the bigger picture than just her family. She spoke to the problems of Texas doctors not being educated about Lyme Disease in Texas. She told of an Austin American Statesman article dated June 7, 1999 about Lyme Disease, where David Dennis of the CDC was quoted as saying "true Lyme, which is spread by the black- legged (or deer) tick, is practically nonexistent in Texas." Education of Texas doctors and insurance companies will lead to earlier diagnosis. Timely and appropriate treatment could save thousands of dollars, not to mention the pain and suffering of hundreds of Texans.

 

 

(Transcribed May 10, 2000 - THIS IS NOT, REPEAT, NOT THE OFFICIAL MINUTES. Any errors are my own. R. James Martin) 

SENATE COMMITTEE ON ADMINISTRATION
Minutes
Thursday, March 16
, 2000
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Ronald David Brandenburg, talked about his daughter, Tara. and the problems they have encountered with getting a correct diagnosis: the insurance companies paying claims; and the toll Tara's Lyme Disease has had on her, her friends and family.

Linda T. Brandenburg, talked about her daughter's Lyme Disease. She discussed many of the problems they have had to deal with: lack of correct diagnosis; treatment or lack of; their HMO's refusal to pay for certain prescribed treatment; the permanent problems Tara experiences, not to mention the life style changes that Lyme has caused.

Anita Arndt, spoke about her twelve year old son, Nathan. They believe that Nathan was bitten by a tick during a cub scout outing during the Fall/Winter of 1998. She gave a very detailed account of Nathan's symptoms, the pain he suffered and the alterations in his life. Her account included details about his treatment; lack of treatment; lack of knowledge by doctors in Texas in the treatment of Lyme Disease; and actual refusal of a doctor to test Nathan for Babesia. The doctor told them there was no Babesia in Texas. lncluded in her testimony were seven requests of the Committee.

Tamara Chauncey, works for the Austin ISD as an Educational Diagnostician. She was bitten by a tick near Concan, Texas in June 1989. Her testimony, like many others, included information about her flu like symptoms; intense fatigue, severe joint pain; and neurological complications. When she mentioned to her physician that she had been bitten by a tick he insisted that Lyme Disease did not exist in Texas but agreed to do a blood test. After two positive tests he still did not prescribe antibiotics and suggested she was experiencing "post-strap syndrome". After four positive tests and a change of doctors she was prescribed oral antibiotics for the first time. She like many other Texans had to leave Texas before she was correctly diagnosed with Lyme Disease and treated by doctors who understood what she had been going through. Her Texas infectious disease specialist and family physician stated that they were unwilling to follow recommendations of the New York doctors, citing the position of Dr. Alan Steere.

Meredith Terrall, testified about his wife's Lyme Disease and the problems they have faced with diagnosis by Texas doctors and finding treatment and the tremendous toll it has taken on their lives.

Jo Johnson, currently lives in New Mexico but was actually bitten in Texas in May 1994 while riding her horse around Lake Grapevine and Lake Texoma. Thus began her odyssey to get a correct diagnosis and treatment. She experienced flu-like symptoms, headaches, stiff neck, sore shoulders, extreme fatigue and achy muscles. It was not until Dec. 1994 when she saw Dr. Audrey Stein- Golding in Dallas that she was diagnosed with Lyme Disease. She discussed, the trauma and financial toll, in her opinion, the ignorance of Texas doctors has cost her.

 

 

(Transcribed May 10, 2000 - THIS IS NOT, REPEAT, NOT THE OFFICIAL MINUTES. Any errors are my own. R. James Martin)

SENATE COMMITTEE ON ADMINISTRATION
Minutes
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Natalie Nichols, as a twenty-year old senior honor student a Baylor University she was on top of her world in every way. Little did she know that her life was about to change. Four weeks after competing in the Miss Texas scholarship pageant in 1991, the neck pain she had been feeling f()r several months moved to her right hand and forearm. Her nightmare was just beginning. After eight years; $400,000; numerous doctors and incorrect diagnosis; and eight hospitals later she can only wonder what her life might have been. As a senior honor student, her options were unlimited, and the years ahead held great potential. Instead those years were spent housebound, bedridden, and unable to feed herself. Prevention and physician awareness can spare countless Texans the hardship endured from tick borne diseases.

Kirk W. Conrad, lives in Texas and was bitten by a lonestar tick in the Shreveport, LA area In 1987. He has suffered fatigue, constant burning pain, chills. sweats, stiffness, insomnia, severe headaches, and difficulty concentrating. He was finally treated with antibiotics in 1994 but feels like it was to little too late. Lyme Disease is hideous and needs more research, information dissemination, and treatment protocols.

Betty Nolde, currently lives in Temple, Texas but grew up in Vernon Parish, West Louisiana. On returning to West Louisiana with her son for a family fishing trip, she was bitten by a tick on her hand. During her years of trying to get a correct diagnosis and treatment for her symptoms, she has encountered ignorance of Lyme Disease and hostility by Texas doctors. It is her belief that the criteria regulated by the CDC and lack of information has helped to foster the belief by local physicians that Lyme in Texas is rare or does not exist.

Doris Glaesmann, has Lyme Disease and it took her 2 V2 years to be diagnosed. She did not get bitten in Texas but while on a trip to the north and northeast USA and Canada. She saw 9 doctors before she got a correct diagnosis. She feels there are many doctors in Texas that know nothing about Lyme or how to treat it.

Joyce Diane McGrath, started her Lyme nightmare in 1985. She has had to deal with doctors in Texas that have literally laughed and told her she was "into" the media frenzy. Her insurance with Scott & White does not recognize "chronic Lyme." It takes most of her paycheck to buy supplements and to payoff past attempts to get treatment.

Patricia Duncan, has Lyme Disease and welcomed the opportunity to speak to the Committee. We need physicians who are up to date on the care and treatment of Lyme. She received various antibiotic treatments from 1987 to 1997 and is in remission. However, she has arthritis in every major joint and permanent neurological damage affecting her short-term memory that makes expressing her thoughts quite difficult. There are ads on the local TV programs advising people about products to keep your dogs safe from Lyme but nothing for people.

 

 

(Transcribed May 10, 2000 - THIS IS NOT, REPEAT, NOT THE OFFICIAL MINUTES. Any errors are my own. R. James Martin) 

SENATE COMMITTEE ON ADMINISTRATION
Minutes
Thursday, March 16, 2000
page 5

Virginia Ricks, has suffered from Lyme Disease for three years and has been symptom free for the past seven months. She contracted Lyme in the Yucatan from a tick in her arm. The disease has altered her life. It wasn't until about eight months ago that she was treated for Babesiosis, another tick borne disease that is sometimes transmitted along with Lyme. It is extremely hard for most people to understand what it's like to have an illness like Lyme Disease. There are no reliable test for it and treatment is sometimes withheld by doctors who must constantly be on the defense due to ignorance and reluctant insurance companies.

Melanie Guest. lives in Arlington and became infected with Lyme in 1989. She has experienced many of the same symptoms and problems as people that have previously testified. Both her work and life have been ruined by Lyme Disease.

Joy Sablatur, lives in Austin and testified that she, like many others, has been profoundly effected by Lyme Disease. She hopes the Committee will look into ways to educate the public and doctors on this disease so that others won't have to experience the pain and suffering that she and so many others have.

Tara Brandenburg, lives in Cedar Park and has Lyme Disease. Both of her parents testified earlier. Tara spoke to what it has been like for her since she contracted Lyme.

Heather Metzler, has Lyme Disease. Before contracting Lyme her life was horses. Lyme has altered what she can do with her life's work. It has made it impossible at times to ride or take care of her horses and the usual tasks involved with working with horses. She hopes the Committee will do something to help the many Texans that have Lyme and don't know where to go for help.

Elizabeth Naugle, lives in Austin and both her husband and daughter have Lyme Disease. They contracted it at their family vacation cottage on Possum Kingdom Lake in Palo Pinto County. Her husband was successfully treated because his case was detected early. Her daughter has not been that lucky. She feels like most Texans must travel out of the state in order to find a doctor who is knowledgeable and willing to treat patients with Lyme.

There being no further business, Senator Harris moved that the Committee stand recessed subject to the call of the chair. Without objection, it was so ordered.

(s)

Senator Chris Harris, Chair

(s)

Myra J. Schmitt, Clerk

 

 (Transcribed May 10, 2000 - THIS IS NOT, REPEAT, NOT THE OFFICIAL MINUTES. Any errors are my own. R. James Martin)