Lyme Disease Advocacy Day: Legislative Guide
Lyme Disease Awareness Day at the Texas Capitol
By Dave Claunch, VP of Legislative Affairs, Texas Lyme Disease Association – May 1, 2017
Thank you for your interest in helping advocate for better access to quality care for Texans suffering from Lyme disease. The Lyme Disease Awareness Day at the Texas Capitol is an opportunity for constituents to meet with their elected representatives and share their stories. But it’s about more than that: it’s about laying the groundwork with those elected officials so that they will be more likely to understand our struggles and support our legislative agenda – during the current legislative session and beyond.
This document is intended to be a general guide for how and what to say to your elected representatives in order to advance our cause. The ideas herein are suggestions, not commands, so each person should feel free to say and do what they feel is best.
However, it is rather important that those wishing to advocate for Lyme in Texas do so with a united front. Nothing can kill a legislative effort faster than division within the community that is requesting legislative help. If we, the Lyme community, can’t agree on our goals then it is unlikely that any individual legislator will go too far out on a limb for our community. Likewise, we should avoid being strident, overbearing, or demanding of legislative actions since such attitudes are likely to backfire.
Since our strategy this session is fairly narrow, I recommend that you avoid addressing the more controversial aspects of Lyme disease, such as the ILADS-ISDA schism, the efficacy of some of the more non-traditional treatment protocols, and the conspiracy theories about how and why Lyme has become endemic. While valid issues, too much emphasis on these points could alienate legislators who might otherwise be supportive of modest reform.
Schedule a Meeting in Advance
The first step is to visit http://www.fyi.legis.state.tx.us/Home.aspx to find out who your Texas State Senator and Texas State Representative are, if you don’t already know. You’ll want to contact their offices prior to May 1 to ask to schedule time with these people on the morning of May 1 between 9:30am and 1pm. You will likely be connected to a staff person who will meet with you for 15 to 30 minutes at most. Don’t be offended if your legislator is not available to meet you personally. Their staff will convey your sentiments to them.
Parking & Office Locations
The most convenient parking garage is at the corner of 12 th and San Jacinto and then it’s about a two-block walk to the east entrance of the Capitol. Attached to this document are maps of the various Capitol offices or you can download it here . Note that many Senators and Representatives office in the underground annex building to the north side of the Capitol. You must enter the main Capitol building and then take the stairs or elevator down to lower floor of the Capitol to access the Capitol Extension.
Our Advocacy Strategy
The TXLDA acknowledges that there are many, many challenges with Lyme in Texas and that there are many, many fights worth fighting. Many of us would love to see the legislature prohibit the Texas Medical Board (TMB) from investigating or disciplining Lyme-literate medical providers, but that is an impossible goal at this particular point in time. Perhaps, with proper groundwork in place, we can achieve the objective in the future. But for this legislative session, we have a very narrow strategy and a very narrow goal: to get the TMB to include information about Continuing Medical Education (CME) courses on its website.
The TXLDA has worked closely with Dr. Betty Maloney to develop several online CME courses for the diagnosis and treatment of Lyme disease. We have had limited success in in promoting these CMEs to Texas doctors and additional exposure would go a long way toward educating the many, many Texas doctors who don’t fully understand tick-borne disease.
There are other urgent public health issues that Texas doctors need to be informed about: zika, ebola, diabetes, opiate abuse, West Nile Virus, and many others. So we’ve decided to expand our request beyond just promoting Lyme CME’s on the TMB website to include these other diseases as well. Requiring the TMB to promote multiple CME courses for these other health issues instead of just a single CME course for Lyme helps make the idea more acceptable to a broader range of legislators.
Included below are color mock-ups of what we are proposing: the addition of a “CME” section on the TMB’s home page and in the top-level navigation of the site, a secondary page on the website with a brief blurb about 8 to 12 different CME courses that are available online, and a disclaimer if necessary clarifying that the TMB does not endorse any of the content of those CME courses.
It’s important to note that the Texas Medical Association (TMA), the private industry trade association that represents many Texas doctors, provides an online database of CME course options for its member doctors. TMA members have access to the site as part of their TMA membership dues. To our knowledge, the TMA has no objection to our proposal to promote CME’s on the TMB website since it would likely drive additional traffic to their online CME portal. Let me be very clear: any medicine-related bill that does not have the TMA’s support will almost certainly not be passed into law. They are a powerful lobbying organization.
The TMB’s mission statement is to “protect and enhance the public’s health, safety and welfare by establishing and maintaining standards of excellence used in regulating the practice of medicine and ensuring quality health care for the citizens of Texas through licensure, discipline and education. ” They have repeatedly resisted the idea that educating doctors is part of their mission, claiming instead that the “education” referred to in their mission statement is to educate doctors about the TMB’s regulatory requirements. That is absurd. Implicit in the mission of every state agency is the requirement to educate the industry it regulates; to claim that the TMB should not be expected to educate doctors is ridiculous.
Efforts have been made in recent months to convince the TMB leadership to voluntarily agree to adding a section to their website to promote CME’s. To our knowledge, they have not yet agreed to do so administratively. Therefore, we are asking the Texas Legislature to require them to do it.
The TMB recently underwent the Sunset Review process, which all state agencies must complete every few years. As a result of that process, Senate Bill 315 (SB 315) has been filed in the Senate by Texas State Senator Juan “Chuy” Hinojosa (D-Corpus Christi). It has been referred to the Senate Health & Human Services Committee but it has not yet been scheduled for a public hearing. It will likely be scheduled in the next few weeks since the session ends May 29 and this bill MUST pass or the TMB will no longer exist. So when the bill starts moving, it will likely move quickly from the H&HS committee to a vote by the full Senate and then on to the House.
It is our primary goal to pass an amendment to SB 315 requiring the TMB to promote CME courses for urgent public health issues such as Lyme disease and others. The best opportunity to get that amendment in place will be during its hearing in the Senate Health and Human Services Committee. These are the Senators who sit on that committee:
Chair: Sen. Charles Schwertner
Vice Chair: Sen. Carlos Uresti
Members:
Sen. Dawn Buckingham
Sen. Konni Burton
Sen. Lois W. Kolkhorst
Sen. Borris L. Miles
Sen. Charles Perry
Sen. Van Taylor
Sen. Kirk Watson
The Senators on the above list should be our primary targets for advocacy on May 1 – but it would also help to talk with these State Representatives who sit on the House Committee on Public Health who will eventually consider SB 315 as well:
Chair: Rep. Four Price
Vice Chair: Rep. J. D. Sheffield
Members:
Rep. Diana Arévalo
Rep. Cindy Burkett
Rep. Garnet Coleman
Rep. Nicole Collier
Rep. Philip Cortez
Rep. R. D. “Bobby” Guerra
Rep. Stephanie Klick
Rep. Tom Oliverson
Rep. Bill Zedler
Talking Points
Whether you are talking directly to a legislator or a staff person, below are suggested talking points that you should consider using in order to maximize the effect of your advocacy efforts:
1. Provide Context: Lyme disease is a problem in Texas, it’s a terrible disease that destroys lives. Texas doctors often misdiagnose the infection, even in cases where the patient has the telltale “bullseye” rash. If Lyme is treated early, recovery is relatively easy; but if misdiagnosed or not treated properly, it can lead to a lifetime of medical problems.
2. Share Your Story: Briefly tell your Lyme story. If you were misdiagnosed by a Texas physician or your Texas physician refused to treat you effectively, explain that. If your physician expressed concerns about TMB discipline, share that. If you had to go out of state for diagnosis or treatment, share that as well. We want them to have a vivid struggle about how nasty Lyme is and how Texas doctors are not properly educated about the disease.
3. Explain the Problem: Too many Texas doctors are ignorant about the prevalence and complexity of Lyme. Many Texas cases are misdiagnosed or treated too conservatively to be effective. We need the TMB to embrace the “Education” part of it’s mission statement and help promote CME courses to Texas doctors for not just Lyme disease but the other urgent public health issues like ebola, zika, West Nile virus, opiate abuse, etc.
4. Explain the Legislative “Fix” We’re Requesting: SB 315, the TMB Reauthorization Bill by Senator Hinojosa has been referred to the Senate Health & Human Services committee. We are asking for the bill to be amended to require the TMB to promote urgent public health issue CME’s on their website. That’s all. Super simple.
5. MOST IMPORTANTLY: Ask for their Support! Ask the legislator to support the amendment to SB 315 when it is introduced.
6. Don’t forget to thank them for their time – and their support!
Provide Materials
If possible, take color printouts of the attached website mock-ups and share them with your legislators so they can see exactly what we are proposing. Explain each CME listed on the TMB website would be linked to a fully-accredited online CME course.
Questions and Feedback
Please be sure to let us know how your advocacy efforts were received. Please email Dave Claunch (dave@liaisoncreative.com – please note the spelling of LIAISON; it can be tricky!) and let him know whom you met with, whether or not they were receptive or skeptical, and any other insights you gained from your meeting. Dave will add you to his email list so he can notify you of the developments during the rest of the legislative session.
Likewise, please let Dave know if you receive any questions that you’re unable to answer or if you think it would be helpful for him to reach out to any specific legislators or staff members.
Education is the silver bullet: by educating Texas doctors and nurses about Lyme disease, we can help ensure that future Texans will be diagnosed and treated more effectively. That alone won’t help current Lyme patients, but requiring the TMB to feature a Lyme CME course on its website will send a clear message that the Legislature is supportive of the Lyme community. Every little bit helps and we believe that achieving this modest goal will lay the necessary groundwork for broader actions in future years.