Beth Carrison delivered the following remarks to the Tick-Borne Disease Working Group on July 8.

Over the past several months, increased attention is being paid to minority health disparities. As written in the Tick-Borne Disease Working Group’s 2018 Report to Congress, cases among minority populations and other special populations remain under-recognized, under-reported. and continue to cause extensive, invisible damage.

The 2018 report asserts, “Recognition of the classic skin findings in individuals with dark skin pigmentation may be challenging, resulting in delays or even failure to diagnose Lyme disease and other tick-borne diseases.”  and that “minorities are under-represented in tick-borne disease studies.”

For example, in the Tick-Borne Conditions United groundbreaking survey of over 1,000 patients diagnosed with alpha-gal syndrome, we found less than 1% of the respondents were minorities. At every single patient-centered conference and seminar we’ve attended over the past two years, the number of minorities present were less than a handful.

In addition, the 2018 Report, Chapter 5 titled “Diagnosis,” asserts the critical need for education and training for both patients and healthcare providers. I quote:

“Clinician awareness and recognition of the possibility of Lyme disease and other tick-borne diseases is an important component of the diagnostic process. Clinician and patient education and training should include consideration of additional diagnostic issues pertinent to the above-mentioned special populations.”

Will Working Group take on this challenge?

None of us can meet our mission to educate and empower until we have successfully worked with all minority and special populations to reduce the incidence of tick-borne diseases.

We would like to ask the committee to comment today on where this identified need has been incorporated into the subcommittee reports, and how it will be incorporated into the 2020 second Report to Congress.

If you find this has not been incorporated, how will this be addressed knowing it was part of the base recommendations in the first Report to Congress and should continue to be built upon?

• How will the “Training, Education, Access to Care, and Reimbursement Subcommittee” address education, awareness and participation in communities most impacted mentioned above?
• How will each area of need work towards increasing outreach of patients and their providers in low-income and minority communities?

Research shows that communities are more successful at meeting challenges when we address the needs of all people.

Will the Working Group join us in pledging to actively find ways to improve this area of need?

Thank you for your continued commitment to address the needs of all US citizens, regardless of age, military status, ethnicity, race and economic standing.

Beth Carrison is co-founder of Tick-Borne Conditions United, a 501c3 organization. She has been diagnosed with both Lyme disease and alpha-gal syndrome.