Newsletter

Pat Smith’s Letter on How LDA’s Work Has Helped Lyme Patients. Dear Lyme Community & Those Concerned about Lyme and TBD, This year has been a challenge for all of us, and in particular, for those with chronic conditions such as Lyme disease, which is still unrecognized by the federal government. The Lyme Disease Association, Inc. (LDA) has been working for Lyme and tick-borne diseases (TBD) for 30 years, with individuals who are patients and family members of patients driving the programs…

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Success in 2020: Help LDA Work for You in the New Year! The Lyme Disease Association, Inc. (LDA) has been working for Lyme and tick-borne diseases (TBD) for 30 years, with individuals who are patients and family members of patients driving the programs. ~97% of our funds generally go directly to programs. Guidestar.org designates LDA as a charity at its highest level committed to transparency, Platinum. For 15 years, LDA has been designated as a national charity included in the Combined Federal Campaign (CFC) lists for federal employees workplace giving.

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Pat Smith in WG meeting on geographic boundaries preventing Lyme diagnosis: “I lived in the world of patients for 36 years, and I can tell you that they are not getting treated in those states because the government and other entities are telling them there is no disease. They are consistently not being diagnosed and treated, and you think this because there is a positive test they will get treated? No way. That doesn’t happen …

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The upcoming meeting of the HHS Working Group may be your last chance to influence language on persistent/chronic Lyme. At the last meeting, several members of the Working Group (WG) worked hard to have language related to patients with persistent Lyme symptoms removed from the WG report which will go to Congress at end of year.

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Persistent Infection a Religious Belief? Working Group Co-Chair Says – YES! At the meeting itself, Working Group Co-Chair, Dr. David Walker, and Member Eugene Shapiro made and seconded many motions to remove material from the proposed draft report including the two sets of guidelines, shared decision making, access to care, Lyme treatment trials, and cost of Lyme disease.

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LDA Campaign: Patient Access to Care. Our government denies persistent (chronic) Lyme and refuses to acknowledge and help those patients. LDA requested the public submit comments about the existence and importance of persistent (chronic) Lyme. How it affects their life, family, job, school, and doctors. We are pleased to report this campaign was successful and thanks to the many who took action and responded.

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John Aucott, Director, Johns Hopkins Lyme Disease Research Center & Assoc. Prof. of Medicine, Johns Hopkins Univ., published a piece in The Conversation providing his insight on the controversial topic of chronic Lyme disease. In the article, Aucott outlines the existence of a population of patients – an estimated 10-20% – with persistent, lingering symptoms months to years after treatment.

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May is Lyme Disease Awareness Month, a time to remind ourselves that Lyme is a disease that has been neglected, minimized, and ridiculed over decades and still continues to be. We all need to redouble our efforts to get an accurate test and to get patients properly treated, and treated with dignity.

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