ADVOCACY
The Texas Lyme Disease Association works to improve access to quality healthcare for Texas suffering from tick-borne disease. In addition to efforts to educate the public and physicians about the prevalence, complexity, diagnosis and treatment of tick-borne disease, we advocate on many levels:
I. ON THE STATE LEVEL
Texas Medical Board
Many Texas physicians tell us that they are reluctant to diagnose or treat tick-borne diseases because they are afraid of repercussions from the Texas Medical Board (TMB). The TMB is a state agency that licenses medical practitioners, investigates complaints by the public made against medical practitioners, and disciplines them if it is determined that they violated the Texas Medical Practices Act or the standard of care as determined by the TMB. Over the past two decades, they have disciplined any Texas doctor who is reported to them or any doctor they hear is treating Lyme disease with long-term antibiotics. This is why there are only a handful of clinicians left in Texas who will even consider taking on a Lyme patient, and if they do, they generally do not promote their services very publicly lest they become a target of the TMB.
In most cases, the few practitioners who are willing to treat tick-borne disease do not take insurance because the insurance companies often object to the cost, nature and duration of treatment. In some cases, insurance companies have filed complaints with state medical licensing boards when they believe a practitioner is not treating tick-borne disease appropriately. Therefore, most physicians who treat tick-borne disease avoid that risk by not participating in insurance programs.
The Texas Medical Board is managed by an Executive Director and management team. The Board consists of nineteen individuals appointed by the Governor of Texas (twelve physician members and seven public members) who meet monthly to set policy, provide guidance to the TMB management team, and review disciplinary cases that have been conducted by TMB staff. They have the final word on which doctors are disciplined for the various complaints made against them.
The Texas Medical Board meets regularly throughout the year at 333 Guadlupe Street, Tower 2, Suite 225 in Austin. They always have a time set aside for public input. The TXLDA board has utilized this opportunity to express its concerns about how the TMB’s actions against Texas medical practitioners have had a chilling effect on the medical community, reducing the number of practitioners who are willing to treat tick-borne diseases. The TXLDA has consistently advocated for the TMB to allow physicians some latitude to use innovative treatment protocols including the published ILADS Treatment Guidelines which have been shown to be effective in the treatment of tick-borne disease.
In 2011, the TXLDA and others succeeded in passing legislation that required the TMB to help educate Texas physicians about the prevalence, diagnosis and treatment of tick-borne disease by promoting Continuing Medical Education courses developed by Dr. Betty Maloney, an expert in the field.
Texas Department of State Health Services
The TXLDA has also worked with the Texas Department of State Health Services (TDSHS) to discuss the prevalence of ticks infected with Borrelia burgdorferi (aka Lyme disease) and other tick-borne diseases in Texas such as bartonella, babesia, ehrlichia and many others. If you have been bitten by a tick in Texas and you were able to keep the tick, please report it to the TDSHS.
Make sure your case fits the 2011 Case Definition Criteria of the CDC. If it does contact the staff responsible for Lyme Disease Reporting at TDSHS:
Whitney Qualls, Entomologist: 512-776-2790
Bonnie Mayes, Epidemiologist: 512-776-2888
They want to make sure that Texas epidemiological reporting is accurate!
NOTIFY YOUR REPRESENTATIVES
It can be confusing to remember who represents you both on the state level and on the federal level. Type into your Google search WHO REPRESENTS ME or find your representative here. Enter your address and zip code and ALL your legislators will pop up.
TXLDA encourages you to contact your Texas State Senator and your Texas State Representative (by email link or phone or BOTH) and tell them that the physicians of Texas will not test or treat Lyme /Tick Borne Disease due to the actions of the Texas Medical Board. Tell them doctors are not educated about the problem of Lyme/Tick Borne disease in Texas and the Texas Medical Board has refused to participate in any education process in this regard. The Texas Medical Board members have been invited to attend CME courses in Lyme Disease offered by TXLDA and none have ever attended.
NOTIFY YOUR GOVERNOR
The Texas Medical Board is appointed by the Governor. Let your Governor know what is going on in his state with his Medical Board.
Texas Governor Greg Abbott: 512-463-2000; https://gov.texas.gov/contact/
II. ON THE NATIONAL LEVEL
CDC Vector Borne Disease Division
There is a small group of PhDs, MDs and epidemiologists who work for the CDC in Fort Collins, Colorado, who are responsible for most everything that happens pertaining to Lyme/Tick-Borne disease in our country. The TXLDA has met with them and expressed their concerns regarding the policies of the CDC which support the notion that Lyme Disease is difficult to catch and easy to treat. The CDC has told the TXLDA that they do not believe that there is ANY Lyme Disease in Texas. Any reported cases here they believe are imported from other places.
TXLDA is sure the CDC Vector Borne Disease Group in Fort Collins, Colorado would love to hear from you whether or not we do have any REAL cases of Lyme/Tick Borne disease in Texas.
Dr. Lyle Peterson MD, MPH is the Director of Vector Borne Diseases
LRPeterson@cdc.gov
Ben Beard PhD is the Chief of Bacterial Diseases Branch of VBD
cbeard@cdc.gov
Stay informed:
TXLDA supports efforts by both the national Lyme Disease Association and lymedisease.org. These two patient advocacy groups are active in the deliberations of issues affecting Lyme patients in the US. Check their websites regularly for federal measures that will affect your health and rights as a Lyme patient.
III. ON THE COMMUNITY LEVEL
Although it may seem that there is not much you can do to help spread the word about this tragedy there actually is!
• Join/Attend your local support group-help others
• Distribute TXLDA brochures to your doctors office, pharmacy, school, church
• Check the TXLDA website for any new information
• Join the TXLDA Facebook page, Twitter acct, Instagram, or YouTube channel for anything new
• Volunteer to sponsor a showing of Under Our Skin
• Volunteer to assist TXLDA in any of our current projects
• Repeatedly contact the State and Federal people above to ask for help/change
• Contact your local newspaper/TV station and tell your story - offer to be interviewed
• Contact your local Scout/Campfire Troop and request education BEFORE campouts
• Organize an inexpensive Lyme Vigil in your community.
• Do the Lyme Disease Challenge on video and post it to social Media and invite your friends to do the same.
• Contact state senators and legislators to help write bills to help Lyme patients.
• Send letters to local doctors asking them to take our CME course.
• Organize small fundraisers to help local Lyme organizations. For example, a bingo fundraiser, a luncheon event, a yoga event, a cycle event, dinner or cocktail party event, etc.
• Ask your child’s school to include information about tick avoidance/Lyme awareness in the school newsletters.
• Ask to speak at the PTA Meetings in regard to tick avoidance/Lyme awareness.
• Ask your child’s teacher if your child can do a special presentation on Lyme in front of his or her class.
• Do an online fundraiser on Facebook for your Lyme organization of choice and tag your friends.
• Be creative!