DC – Oral Testimony, US House Energy/Commerce Health SubCommittee

Oral Testimony before US House of Representatives Energy & Commerce Health Subcommittee
Patricia V. Smith, President, Lyme Disease Association, Inc. (LDA)
November 20, 2013

Chairman Pitts and Committee Members,

Thanks for allowing me to testify on the establishment of a Lyme & tick-borne diseases advisory committee. In 2009, CDC indicated that Lyme surpassed HIV in incidence followed by a 2013 announcement confirming a 10-fold under-reporting of Lyme cases, estimating 300,000 Lyme cases annually. A 2001 NIH sponsored study found the impact of Lyme on physical health status was at least equal to the disability of patients with congestive heart failure or osteoarthritis, and was greater than those with Type II diabetes or recent myocardial infarction. [1] Couple those facts with Lyme spreading worldwide to 80 countries and the discovery of many newly emerging tick-borne pathogens carried by many different ticks, then the passage of HR 610 is long overdue.

Other TBD in the US include anaplasmosis; babesiosis, bartonellosis; ehrlichiosis; Rocky Mountain Spotted fever; Colorado tick fever; Q fever; tick paralysis; tularemia; Powassan encephalitis; STARI, a Lyme-like disease; Rickettsia parker Ricketsiosis found increasingly along the Gulf Coast and in the South; Borrelia miyamotoi, first disease case in Russia and now found here; an eschar-associated illness, Ricketsia species 364D, in the Pacific Region; and a newly discovered tick-borne virus in Missouri, Heartland. [2]

My education on Lyme began almost 30 years ago as a NJ Board of Education member whose district had a large number of students and staff out with Lyme disease. Only a few ticks were recognized as major health threats to humans. Now, the list includes:Ixodes scapularis (deer or black legged), Amblyomma americanum (lone star), Dermacentor variabilis (American dog), Dermacentor andersoni (Rocky Mt. wood), Ixodes pacificus (western black legged), Amblyomma maculatum (Gulf Coast), and Dermacentor occidentalis (Pacific Coast). One tick bite can often cause more than one disease.

My Lyme work, including 17+ as president of the volunteer-run national non-profit Lyme Disease Association keeps me in close contact with patients nationwide. Lyme’s complexity and difficulty in diagnosis have exacerbated the plight of patients and their families, many of which contain more than one Lyme victim. Medical bills rise; jobs are lost; education is interrupted.

Children are at the highest risk of acquiring Lyme. Based on CDC’s Lyme reported case numbers from 2001-10 by age, LDA estimates that 37% of reported cases were children. Using 1990-2011 CDC reported numbers adjusted for 10-fold underreporting, LDA then found 1,590,449 children have developed Lyme over that period. Many more children were probably clinically diagnosed, but not included in the CDC surveillance figure, which uses a strict reporting definition not meant for clinical diagnosis.

A 2001 Columbia study showed children with Lyme had significantly more psychiatric disturbances and cognitive deficits were still found after controlling for anxiety, depression, and fatigue. Lyme in children may be accompanied by long-term neuropsychiatric disturbances, resulting in psychosocial and academic impairments. Parents indicated 41% of children had suicidal thoughts, 11% had made a suicide gesture. [6]

Early intervention and appropriate treatment are the answers for Lyme patients to prevent the development of chronic Lyme disease, aka, Post Treatment Lyme Disease, late disseminated Lyme, persistent Lyme, Post Lyme Disease Syndrome, etc. While discussions continue on the justifications for various terms used for chronic Lyme, we cannot allow semantics to eclipse the need for research on chronic Lyme, the area producing the most human suffering and receiving the least research funding. According to a new Columbia Lyme study, based upon 10-fold underreporting and on 10% of newly infected and treated patients developing symptoms that persist for more than 6 months, “the actual incidence of new chronic cases (PTLS) is…30,000.” [7]

Many major health threats including chronic fatigue have an advisory committee. Lyme does not, placing patients and advocates at a great disadvantage. We’ve lobbied for a research agenda which includes more effective treatments and better diagnostics, including detection of active infection. B. burgdorferi was recognized to cause Lyme almost 33 years ago, yet the two-tier testing system endorsed by CDC is very specific for Lyme disease (99%), gives few false positives, but the tests have a uniformly low sensitivity (56%)─ missing 88 of every 200 patients with Lyme. [8]

[1] NEJM, 7/2001, Mark S. Klempner MD. et al, “Two Controlled Trials of Antibiotic Treatment in Patients with Persistent Symptoms and a History of Lyme Disease”
[2] American Journal of Tropical Medicine and Hygiene, 7/22/13, Harry M. Savage, PhD et al, “First Detection of Heartland Virus (Bunyaviridae: Phlebovirus) from Field Collected Arthropods”
[6] J Neuropsychiatry Clin Neurosci 2001, Tager,F, Fallon BA, “Controlled Study of Cognitive Deficits in Children With Chronic Lyme Disease”
[7] The Journal of Neuropsychiatry & Clinical Neurosciences, 2013, Batheja S., “Post Treatment Lyme Syndrome & Central Sensitization”
[8] BMJ 2007; 335:1008, Stricker RB, Johnson L. “Lyme wars: let’s tackle the testing.”