MINUTES SENATE COMMITTEE ON ADMINISTRATION Tuesday, May 9, 2000 9:30 a.m. University of North Texas Health Science Center, Ft. Worth, Texas ***** Pursuant to a notice posted in accordance with Senate Rule 11.18, a public hearing of the Senate Committee on Administration was held on Tuesday, May 9, 2000, at the University of North Texas Health Science Center, Ft. Worth, Texas ***** MEMBERS PRESENT: MEMBERS ABSENT: Senator Chris Harris Senator Rodney Ellis Senator Frank Madla Senator John Whitmire Senator Florence Shapiro ***** The chair called the meeting to order at 9:50 a.m. There being a quorum present, the following business was transacted: Senator Harris introduced Dr. Benjamin Cohen, President, University of North Texas Health Science Center. Dr. Cohen greeted the committee and welcomed them to the University. He stated the University was very pleased to be a part of the search for a diagnostic test to determine tick-borne diseases. He spoke briefly about the mission of the University and it's commitment to the citizens of Texas and was delighted that Senator Harris had asked for their help. Senator Harris spoke of his involvement and experiences with the University of North Texas Health Science Center and how proud he was of their efforts and accomplishments. He spoke of how at the first meeting on tick-borne illnesses the committee had asked state agencies to come together, using existing monies, to try and come up with ideas and solutions on ways to educate the citizens of Texas as to the risks of tick-borne illnesses. He commended Julie Rawlings, Texas Department of Health and Bryan Richards, Texas Parks and Wildlife Department for the excellent job they have done. He also talked briefly on the working group of state agencies and different associations and what they have done and not done. Senator Harris expressed his disappointment and anger with the Texas Board of Medical Examiners at not having a representative at the meeting. He felt their absence was arrogant and indicated they don't want to be a part of the solution but instead they continue to be a part of the problem. Senator Shapiro felt that the absence of the Texas State Board of Medical Examiners was like a slap in the face. Since they had been ask to participate they should respect the time and commitment the committee puts in and at least attend the meetings. Senator Harris stated that since the committee was on the subject of the Texas State Board of Medical Examiners he would like to have the doctor that had spoken to him before the meeting to come and share with the committee her experience with the State Medical Board. Dr. Sheila K. Horsley is a Family Practice physician at Hugley Hospital. Approximately ten years ago she attended a Pan-American Allergy Society meeting in San Antonio. At the meeting she heard a South Western University professor that presented at the meeting recommenced a product that was an experimental Lyme's vaccine that demonstrated ethicality and health for patients. Dr. Horsley went on the explain what makes the vaccine unique. The Lyme vaccine offered a therapeutic option that had not been previously recognized for vaccinations. This vaccine was before the current Lyme vaccine was available. She obtained the vaccine from Europe thru a laboratory in California only after hearing about it at a national meeting from a South Western University professor. She presumed what she was doing was an acceptable attempt to help a patient with tertiary neurology Lyme proven CFS positive from a national laboratory. There was further conversation about her specific case. Senator Madla moved adoption of the minutes from the previous hearing held on March 16, 2000; without objection, it was so ordered. The next order of business was to hear invited testimony. Listed in the order of their testimony are the following: Julie Rawlings, Texas Department of Health, spoke about the working group they were a part of and future plans of the Texas Department of Health dealing with tick-borne diseases. Bryan Richards, Texas Parks and Wildlife Department, spoke about the press releases; an article in the June issue of the Department's magazine; the video being worked on in conjunction with the David Johnson family; and a 10 minute spot for PBS. Ten million cards with tick information will be ready August 1, 2000 to be distributed to every vendor selling hunting and fishing licences and made available at state parks. An INTERNET web site (Ticktexas.org) is being developed with other state agencies . Dr. Eric Brown, Texas A & M University IBT Lab, talked about a second generation vaccine that he has been working on and the hope that a pharmaceutical company will become partners with the University on the research and development. Dr. Arthur Eisenberg, Director of DNA Lab and Associate Professor at the University of North Texas Health Science Center, spoke briefly about the history of the DNA Lab; Senator Harris' role in the foundation of the lab; what the primary functions are; and what the hope for the future is. He is very excited about the opportunity to add the ability to test for the Texas tick-borne illnesses and offer low cost testing to Texas citizens. Dr. John Planz, DNA Lab at the University of North Texas Health Science Center, spoke of some of the differences between ticks in Texas and ticks in the Northeast and the need to develop different testing guidelines. There were questions and exchange between the speakers and committee members during the above testimony. At 11:15 a.m. Senator Madla assumed the chair. The meeting continued with public testimony. Listed in order of their testimony are the following: Michael Grace, has chronic Lyme's disease. Most of his symptoms have been primarily central nervous system. He is a Optometrist that had practiced for 25 years and is no longer able to work at his profession. He went to many physicians, at least eight, to try and find out what was wrong with him. He was laughed at, demeaned, humiliated and told there was no Lyme disease in Texas. He wanted to encourage the committee to increase the education of the medical community and the public. This illness has had a debilitating effect on his life. Konge Guthrie, talked about her daughter Whitney who died of Rocky Mountain Spotted Fever before she was diagnosed with the illness. (Testimony attached) Mary Ann Heaston, testimony attached. R. James Martin, currently lives in Euless who believes he contracted Lyme in New Jersey at a young age. He has been diagnosed with everything but Lyme until 1996 when he started seeing Dr. Moayad. He is now on the road to a cure. He feels like lives have been ruined and patients are still reduced to begging to be seen and heard. Janet Rod, a thirty two year old woman who has had Lyme for the last five years. (Testimony attached) John Quinn, talked about his experience with Lyme disease. Diane Self, talked about her two daughters that have Lyme; the difficulty they have encountered with diagnosis and treatment; the pain and disabilities they have suffered; and the effects on their lives. (Testimony attached) Laurie Schick, was bitten when she was twelve years old and she is now forty four. She spoke of the years of pain, disabilities, her drug addition to relieve the pain and the many other problems her Lyme disease has caused. Maria Serrao, actually had a confirmed diagnosis by the Texas Department of Health and has continued to have difficulty with doctors believing that she has Lyme. Barbara Watkins, contracted her Lyme disease in Bosque County and had it for about five years but was only diagnosed in the past year. Patricia L. Wilson, has chronic Lyme and has lost three children due to the fact that the Lyme was passed in vitro to each of her children. Betty Ackerman, talked about her husband's experience with Lyme disease. (Testimony attached) J. Ben Williams, talked about his wife and daughter who have both been infected with Lyme disease. Sharon Abercia Wilner, testified as to the problems she has endured since 1987 when she was bitten by a tick and then misdiagnosed by her doctor. (Testimony attached) Teresa Gaye Lucher, now believes she has had Lyme for about 20 years. She is now 40 and suffers from many of the same symptoms as described by the previous people. Jo Vonna Hill, has suffered from Lyme disease for twenty years. She was finally diagnosed by Dr. Patricia Salvato who tested her with the Western Blot; she tested positive with 6 bands. (Testimony attached) Amber Putnam, a young woman who believes she became infected in 1992. She lost her chance of an education, her boyfriend, some of her family, and many of her friends due to the fact that she was so sick and disabled by Lyme. She is finally seeing a doctor that treats her with respect and dignity. She is getting better with antibiotic treatment. This disease has ruined her life. Karen J. Rose, has spent the past 5+ years researching every aspect of Lyme disease. Her case was extreme and diagnosed in a very late stage, with significant and permanent damage incurring before diagnosis. (Testimony attached) Louise Mueller, testimony attached. There were many questions and comments between the committee and the above witnesses. There being no further business, at 2:15 p.m. Senator Madla moved that the Committee stand recessed subject to the call of the chair. Without objection, it was so ordered. ______________________ Senator Chris Harris, Chair ______________________ Myra J. Schmitt, Clerk