The federal Tick-Borne Disease Working Group held another online meeting Tuesday. Its upcoming Report to Congress continues to inch towards completion.

At this stage of the game, the report consists of a series of recommendations that have already been approved by the panel. Still under discussion is proposed language to accompany those recommendations.

And, as we’ve all come to know, language concerning Lyme disease can be contentious indeed.

Which brings us to the TBDWG’s Chapter 7. It offers five recommendations having to do with educating doctors and the public, as well as the issue of patient access to care. Each recommendation comes with some explanatory paragraphs.

This subcommittee was co-chaired by Pat Smith, the only patient representative on the panel. In my view, this chapter succinctly conveys much of what the Lyme community wants from the Working Group. And from Congress.

Where the rubber hits the road for Lyme patients

To offer a flavor of how the conversation went, here’s what went down with Chapter 7’s first recommendation. (I’ve put some words in blue for emphasis.)

Recommendation 7.1: Recommend Federal government websites and educational materials and seminars for clinicians, the public, and public health departments, which discuss Lyme disease, provide information that the state of the science relating to persistent symptoms associated with Lyme disease, is limited, emerging, and unsettled; and increase public awareness that there are divergent views on diagnosis and treatment. Consider that shared medical decision-making may be appropriate in some circumstances.

Bear in mind that 7.1 was approved—though not without opposition—during a prior meeting. Nothing at this meeting would change that. These guys were only voting on the language to explain the reasoning behind the recommendation.

Here’s the accompanying text:

Patients with persistent symptoms associated with Lyme disease face significant issues of patient access to care involving both providers and insurers, as well as the need for shared medical decision-making in the face of uncertainty. Unfortunately, patients with persistent symptoms associated with Lyme disease report that they are systematically denied access to the care they need. For example:

• 67% report they have postponed or avoided medical treatment due to discrimination, disrespect, or difficulty in obtaining care, and nearly half report they have been denied treatment (Johnson, Stigma, 2019).
• The majority of over 2,400 survey respondents report traveling more than 50 miles and a substantial minority traveling more than 500 miles for Lyme disease treatment. (Johnson, 2011).
• 50% of the participants in the MyLymeData patient registry report that their clinicians do not accept insurance coverage; 26% report that they cannot find a clinician who treats persistent Lyme disease; and 18% report that they do not use antibiotics because their insurance will not cover them. (Johnson, Chart Book, 2019).
• The majority of persistent Lyme patients seeking care at their local hospital report that they had difficulty obtaining treatment (Johnson, 2011); some hospitals deny hospital privileges to physicians and other practitioners who do not follow the IDSA Lyme disease guidelines. (Stricker and Johnson, 2009; Johnson and Stricker, 2010; Wolfram 2008.)
• 78% of patients with persistent Lyme disease report a delay of six months or more in their diagnosis (Johnson, 2018) and a majority of patients reported seeing seven or more clinicians before being diagnosed (Johnson et all, 2011).

Two panelists kick up a fuss

Can you guess which parts of Chapter 7 made Dr. Eugene Shapiro and Co-chair Dr. David Walker go absolutely nuts? Here are some hints:

At every mention of “persistent” symptoms in Lyme disease, Shapiro wrote margin notes such as “untrue and unsubstantiated,” which quickly flashed across our computer screens. He similarly opposed any reference to the ILADS guidelines, though the rest of the group chose to keep the references in.

During the panel’s discussion, Shapiro dismissed and denigrated anything taken from MyLymeData, LymeDisease.org’s patient registry. He called it “propaganda.” He said patient registries have no scientific validity.

Pat Smith sharply countered that the National Institutes of Health (NIH) lists 72 patient registries on its website, including ones for such conditions as Alzheimer’s disease and breast cancer. The CDC sponsors a patient registry for ALS.

And scientific validity? The National Science Foundation awarded a sizable grant to UCLA researchers working with information from MyLymeData. Four published peer-reviewed studies use data from the registry, as well as seven white papers. (White papers compile information from research, but have not gone through peer review. The CDC and other health and scientific organizations use white papers all the time. It’s an accepted practice.)

Shapiro doesn’t care.

Treatment options? What options?

And what seemed to drive Co-chair Walker around the bend? The concept of “shared medical decision-making.”

Shared decision-making is not a new concept in health care. It basically means that your doctor explains all of your treatment options, and together you discuss them and decide which way to go. Medicare even specifically requires shared decision-making for many treatments. Even so, that process is typically denied to Lyme patients seeking anything beyond the meager and inadequate care offered by the IDSA treatment guidelines.

At first, Walker said shared decision-making was standard medical practice and it was utterly unnecessary to mention it in the report. He wanted to leave it out. When there was pushback to that suggestion, he scornfully responded, “Does that mean I’m supposed to tell my patient to use crystals and homeopathy?”

Despite the fuss kicked up by Shapiro and Walker, however, Chapter 7’s language stayed intact and the caravan moved on. The next meeting is October 27.

See also:

Our summary of TBD Working Group’s Sept. 22 meeting, in tweets

Will Working Group acknowledge patient voices?

TBD Working Group and FACA’s open meeting rules

Our petition to keep Eugene Shapiro off the TBD Working Group

How you can enroll in MyLymeData

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.