Before reading past this point, get a cup of coffee, or your favorite beverage; this is long, long, long.
I’ve posted the UNOFFICIAL minutes of the March 16, 2000 Committee hearing at https://www.angelfire.com/biz/romarkaraoke/MINUTES.html
The OFFICIAL Committee web-site can be found at http://www.senate.state.tx.us/75r/senate/commit/c500/c500.htm
They have not posted anything about the May 9, 2000 meeting yet, but when they do, I’ll let everybody know. In the meantime, you can still listen/view the March 16, 2000 meeting. It uses RealAudio; you can download the viewer from the Committee web-site if you don’t already have RealAudio.
Below is my recollection of the meeting:
Texas Senate Committee on Administration
Tick-borne Diseases Hearing
May 9, 2000
Texas College of Osteopathic Medicine (TCOM), Ft. Worth, TexasThe meeting was called to order by Senator Harris; they read the roll, and approved the minutes of the March 16, 2000 hearing in Austin.
The President of TCOM welcomed everyone, and gave introductory remarks about TCOM, based at the Southwest Medical Center. It is one of the largest (even though one of the newest) and highly recognized for its Public Health education programs for community-based physicians.
This was followed by the agenda item "Invited Testimony". It should be noted that Senator Harris had each of the presenters of "Invited Testimony" depart from their prepared dog-and-pony shows, and "put the meat on the bun." Both Senator Harris and Senator Shapiro had to unexpectadly leave the hearings early, but once they did, Senator Frank Madla (the co-chair) continued the meeting. (CURIOUS: Gov. G.W. Bush was in Pittsburg, PA meeting with Senator McCain; PA Gov. Rush was in Pittsburg, and Senator Harris was going to Philadelphia before going to Pittsburg. Wonder what’s going on?)
Julie Rawlings – Texas Department of Health: Anybody that’s been following the LDF’s "International Conference on Lyme Disease and Other Spirochetal and Tick-Borne Disorders" for any length of time is quite familiar with Julie’s name. She is also on the LDF Board of Directors.
Julie reported on her coordination efforts (and results) between the Texas Department of Health and all the other Texas State agencies involved in assisting the Committee on Administration’s charge from Lt. Gov. Rick Perry.
Precautions Outdoors Help Avoid
Ticks and Diseases They Carry –
http://www.tdh.texas.gov/news/acc0327.htm
Enjoy Outdoor Activities but
Protect Against Tick-Borne Diseases –
http://www.tdh.texas.gov/news/acc604.htm
Zoonotic Diseases : Lyme Disease
(Lyme Borreliosis) –
http://www.tdh.texas.gov/zoonosis/disease/pamphlet/lyme.htm
Ticks and Lyme Disease (Grade
Level:K-5) –
http://www.tdh.texas.gov/kids/lymedise.htm
It was noted at this time the no representative from the Texas Board of Medical Examiners (TBME) was present.
At this time, Senators Chris Harris and Florence Shapiro interjected comments about "strong letters" they had received from the Director of the TBME following the March 16, 2000 hearing. Included was an acknowledgement that the agency that was identified (in public testimony) as the biggest obstacle to Physician Education about LD ("There is no Lyme in Texas") and targeting LLMDs for prosecution, showed a lot of arrogance in absenting themselves from hearings that would go a long way in rectifying the problems in Texas. Senator Harris stated that he was choosing his words carefully when he said "God help the poor bastards, they will be hearing from Senator Shapiro and myself."
Bryan Richards – Texas Parks and Wildlife Department – Bryan reported the his department had made an INITIAL order of 10,000,000 tick identification/removal cards. One will be given (starting August 1, 2000) with every new hunting and fishing license; as well as to EVERY visitor to TPW pay-entry site (5-7 million public contacts yearly). They’ll get the card along with their receipt.
Their new TickTexas.org web-site should be ready in two to three weeks; every Texas agency concerned with ticks (prevention, research, treatment) will post and link to/from this site.
They’ve also done a start-of-tick-season news release (carried verbatem in 80% of all Texas newspapers) that is a lot more informative than what the EPA/OSHA recently did; have produced (not yet released) a PSA video with Julie Rawlings and the Johnson Family (Lisa and Hunter – Texas Lyme Coalition – www.txlyme.org )
TPW News - State Officials Urge
Turkey Hunters To Be Wary of Ticks
–
http://www.tpwd.state.tx.us/news/news/000327a.htm
Be sure and check out the RealAudio/Video presentation on the page:
Naturalist Journal (Ticks) - http://www.tpwd.state.tx.us/news/news/000327a.ram
Dr. Eric Brown – Texas A&M University, IBT Lab. – Dr. Brown gave a brief report on the genetic research being done in his lab, centered on surface characterisitics of Bb OTHER THAN the outer suface proteins (OsP_) to develop a second generation vaccine candidate (he shares, on an intellectual level, distain for LymeRix). Even in an abbreviated form, his presentation about MSCRAMM, cell matrixes and decorin (sp?) binding proteins A&B was way above my head. Following the hearings, ALL the doctors (about 25) huddled with Dr. Brown and conversed at their own level. They were all very enthusiastic.
Dr. Brown reported that the process they’ve developed has been patented to A&M, licensed to MedImmune, and talks with Pasteur are underway to see if they want to market the vaccine once clinical trials (now underway) are done. Initial reports show 80% immunity with one shot. I’ll have to start another research effort to find out what I can about Dr. Brown, MSCRAMM and the decorin binding process. Any other helpers?
Dr. Arthur Eisenburg – TCOM Forensic DNA Lab – The lab was started about 12 years ago to assist the Texas State Attorney General in paternity cases. Prior to starting the lab, there was only about 10,000 yearly cases sent out of state to establish paternity. Since the lab was formed, paternity establishment has accelerated (collection from dead-beat parents) to almost $1 BILLION a year.
The goal of the lab has now been expanded at Senator Harris’s urging to create a standardized, lower-cost Bb detection test. Their initial studies show that they’ll be able to use any source; blood, tissue, spinal fluid, synovial fluid, or urine. The panel being developed will include PCR, antibody, and DNA isolation to produce results for all three markers during a single test process, and guarantee it will be cheaper and faster than what we have now.
They will be concentrating on the lone star variant (benefit to Texas) because the startup efforts so far has shown that the CDC recommended testing strains aren’t picking up what we have in Texas; hence the claims of "no Lyme in Texas."
I’ll be following up with Dr. Eisenburg later on. While concentrating on the lone star variant is great for political expediancy, their process will have to be expanded (at other-State expense) to include ALL strains; followed by a combination test for all strains, not just geographic isolates. After all, I was infected in New Jersey, but had active EM when I was bitten by a Texas tick. In otherwords, I was the blood-meal for a Texas tick, so if that tick reproduced, there is a New Jersey strain of Bb loose in Texas somewhere. Since people travel, geographic isolation of any strain is no longer an absolute. Not the ideal solution, but it’s further along than we were.
This was followed by "Public Testimony." I won’t attempt to list them all; I just didn’t get all the names and I can’t take notes that fast.
I will say that other Lyme treating doctors testified to their problems with the TBME. It came down to they had the understanding that their problems would go away if they didn’t treat Lyme.
There was also testimony about a seven year old girl that died of Rocky Mountain Spotted Fever. Her story about the ignorance, incompetence and distain of the doctors in NOT treating her daughter, coupled with the TBME not doing anything because "the patient had received the minimum standard of care" was horrifying.
Hmm. Don’t penalize doctors when they give the minimum standard of care that results in death, but target doctors that exceed the minimum standard of care. What message are we getting here?
All the personal testimony reinforced what we have all experienced: the doctor hunt, the multiple misdiagnosis, the insurance denial dance, the friend/family/job losses, and the personal denigration experienced at the hands by incompetant, ignorant physicians.
80% of the testimony, from around the state (not just the DFW area), sang the praises of Dr. M, how even though he darned near lost his practice, he continued to treat and start to give people back their lives. As I told Dr. M, it was a good thing he had his halo on straight. Dr. M’s wife was there, and got to see a side of her hubby that she hadn’t seen before. Mrs. M had a glow about her she we had never seen before.
Years back, Dr. M. was targeted by the TBME because of too many LD patients (over diagnosing, etc.) and record keeping. I reported before about the TBME’s "independent" reviewer saying the patients didn’t have LD, had the cases taken over, patients put in the hospital, given steroids and their resultant "involuntary cessation of animation." When the local paper reported on Dr. M receiving his punishment (but not reporting the patient outcome), Rose and I (and forty-three others) wrote the paper about their shoddy article. They chose Rose’s letter to publish. It was so strong in condemation of the reporter and editor that the Ft. Worth Star-Telegram self-labeled the article "Journalistic Malpractice."
At the start of my testimony, I let the Committee know that I was under orders from the CT, PA, and NJ groups to give them all a hug, that they were heros inside and outside of Texas. My testimony is posted at https://www.angelfire.com/biz/romarkaraoke/TXSenate2.htm . I really blew the testimony. After working on it for two months, I darn near had the whole thing memorized, had a written copy before me, but I just couldn’t make my mind, hands, eyes and mouth work together. It wasn’t until the last third of the second page that I got everything on track. NOTE – to those that liked and commented on the Human Rights quotes. They aren’t mine, they come from the magnificent work of Kathleen Dickson. It made a big impression on Senator Frank Madla: he was attempting to follow my butchered testimony from hard-copy. I distinctly saw him circle the quotes, and point them out to the Committee Clerk, who then wrote them down for the minutes.
I’ve got to really brag on Rose. As she reported earlier, the Committee had originally placed a limit of one family member testifying, so I signed up. They later removed the limitation, so Rose did an ad lib presentation. Using her written submission only as a speaking outline, she gave reinforcing testimony about insurance being a real culprit in many cases (citing mine), where even if the case is diagnosed early, the obsticles put in place by denials causes a treatable case to progress to total disability. Even though we all know that housekeeping to a Lymie means "we can still get in the door," she made the clutter of files, research articles, etc the direct result of the insurance companies egregious actions.
At the conclusion of the private testimony, Senator Madla let us know that even though the legislative process seems slow, to rest assured that everything is now part of the official Senate record, that he and Senators Harris and Shapiro will not let our efforts die, that something WILL BE DONE.
All in all, it was a very trying, emotional and educational day. The trek from the parking lot to the hearing room was incredible. Only one hill in the entire state of Texas, and we had to walk up it (thank heaven for canes) to get to the room. We also got to put faces to the names we’ve become familiar with via the web; we even met LD people that live within two miles of us, yet had never met.
There should be one more hearing in Houston, but it hasn’t been scheduled yet. When I get the info, and any other followup info from this hearing, I let ya’ll know.
P.S. There were no identified members of the press present, even though I (and others) and Senator Harris’s office had notified them numerous times. The Ft. Worth Star-Telegram did post a notice about the meeting on Tuesday morning; the Dallas Morning News didn’t even do that.