ADVOCACY
In an effort to bring about a permanent solution to the lack of health care available to Texans who find themselves ill with Lyme/tick-borne disease, we have some suggestions listed below.
I. ON THE STATE LEVEL
Texas Medical Board
The reason given by most Texas doctors as to why they will not test or treat a Lyme/tick-borne disease patient is that they are afraid of repercussions from the Texas Medical Board. The only authority in the state that a doctor must answer to is the Texas Medical Board. They are the only entity that has the authority to reprimand, punish or rescind the license of a physician. Historically, they have punished any 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 who will even consider taking on a Lyme patient, and if they do, they generally do not take insurance. The reasons for this are: 1) the time required to treat a Lyme patient is so extensive that the insurance co-pay could not come close to compensating them, and 2) insurance companies are often the entities that will turn in a complaint to the TMB. The list of Texas Medical Board members can be found here.
The Texas Medical Board meets regularly throughout the year at 333 GUADALUPE, TOWER 2, SUITE 225, AUSTIN, TEXAS. They always have a time set aside for public input. The TXLDA board has utilized this opportunity to express our concern over the number of Texans who are being discriminated against due to their unpopular disease. TXLDA requested that the TMB work with us to help educate Texas physicians, but this request was denied. Please review the below schedule of the TMB meetings and make every effort to attend the public comment forums to tell those who control the medical care in our state of your experiences with Texas physicians. This is the only way they can learn what is going on in doctors’ offices across our great state. Read the agenda for the upcoming full board meeting to find the time for public comments. View the schedule here.
The meeting dates for 2015 are as follows:
Feb 12-13, 2015
April 9-10, 2015
June 11-12, 2015
August 27-28, 2015
Dec 3-4, 2015
Texas Department of State Health Services TXLDA has also met with the leadership of the Texas Department of State Health Services (TDSHS) in order to describe our concerns and educate them on this problem. Until just recently, the Director of TDSHS was Dr. David Lakey. We will await the Governor’s new appointment Our Chief State Epidemiologist is:
Linda Gaul PhD, MPH
512-776-7198
Make sure she knows that we have Lyme in Texas!
To make sure your case is COUNTED by 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:
Nicole Evert 512-776-2890
Bonnie Mayes 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
Main Switchboard 512-463-2000
Email: https://gov.texas.gov/contact/
II. ON THE NATIONAL LEVEL
Federal Legislation
There is currently legislation before the US Senate (it has already passed the House) that will help address the problem of Lyme/Tick Borne disease diagnosis & treatment on a national level:
H.R. 4701-The Tick-borne Disease Research Transparency and Accountability Act of 2014-H.R. 4701
This is the first standalone bill addressing Lyme disease ever to pass the House. Now the bill moves on to the Senate. From the WHO REPRESENTS ME link given above you can get the contact information for your 2 US Senators (John Cornyn & Ted Cruz). Our two Senators are probably being told that there is no Lyme in Texas so they wont bother to get involved or vote for it unless YOU let them know differently! Ask them to co-sponsor a companion bill to H.R. 4701.
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 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 or You Tube 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 storyoffer to be interviewed
• Contact your local Scout/Campfire Troop and request education BEFORE campouts
• Be creative!
