LDA President Pat Smith testified on HR 610, discussing the serious and growing threat of Lyme and other tick-borne diseases (TBD), the dire effects on patients, many of whom are children, and the economic impacts and the need for a patient voice in the process. (written testimony / oral testimony)
(20 years of advocacy in Congress – check out Pat Smith’s Testimony from the 1993 Senator Kennedy Lyme Hearing)
The hearing entitled, “Examining Public Health Legislation to Help Local Communities,” focused on seven bills on different subjects, including HR 610, to provide for the Establishment of a Tick-Borne Diseases Advisory Committee. HR 610 was authored and introduced by Congressman Christopher H. Smith (NJ), with Representatives Wolf (VA), Gibson (NY) and Peterson (MN) as original co-sponsors.
After the hearing, LDA Presidentt Pat Smith said, “the Energy and Commerce Committee should be commended for placing TBD legislation on the agenda. I was happy that several questions were asked concerning Lyme and the bill and hope that all committee members will review all submitted testimony and recommend this much needed bill in its original form up before the full House for a vote.”
What is HR 610?
HR 610: Requires the Secretary of Health and Human Services (HHS) to establish the Tick-Borne Diseases Advisory Committee to advise the Secretary and the Assistant Secretary for Health regarding the manner in which they can: (1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases, (2) identify opportunities to coordinate efforts with other federal agencies and private organizations addressing such diseases, (3) ensure interagency coordination and communication with constituency groups, (4) ensure that a broad spectrum of scientific viewpoints is represented in public health policy decisions and that information disseminated to the public and physicians is balanced, and (5) advise relevant federal agencies on priorities related to Lyme and tick-borne diseases.
History of House Lyme Bills and Hearings
Congressman Smith, who ranks fourth among all Members of the US House over the last two decades in the number of bills authored which have been signed into law, has a long history of working on Lyme disease issues and promoting Lyme disease legislation. In 1993, he offered an amendment -which became law- to establish a Lyme Disease Program through the Environmental Hygiene Agency of the U.S. Department of the Army. He also successfully secured increased funding for research on Lyme in the Department of Defense and in CDC. Smith first introduced a bill including the establishment of a federal advisory committee on Lyme disease with members drawn from the public and private sectors in 1998, when he introduced HR3795, the “Lyme Disease Initiative Act of 1998” (LDI). This bill’s chief findings and multiple goals have reappeared in modified form in later House and Senate bills on Lyme and associated TBD. In addition, in 2012, Congressman Smith also held the first congressional hearing on Lyme and other TBD disease in 19 years and the first ever hearing to examine the global implications of TBD; Pat Smith also testified during that hearing.
The Story of 2 Current House Bills
Currently, in the House, all federal legislation which provides for increased funding must contain offsets realized by reducing at least as much funding from other existing programs. So Mr. Smith introduced 2 bills, HR 610, focusing on the important goal of establishing a TBD advisory committee─ the subject of Wednesday’s hearing, and an expanded bill, HR 611, which includes an advisory committee plus $100,000,000 in increased funding over five years. That bill is not up for discussion.
Current Government Lyme Working Group
Currently, there is an interagency working group within the federal Department of Health and Human Services, established in 2011, to coordinate activities on TBD. However, there is no provision for input from the public which limits opportunities for changing the status quo. Establishing an advisory committee with voting members who are not federal employees, but include patient representatives, advocates, TBD experienced health care providers, and scientists representing a broad spectrum of viewpoints, is essential to enable meaningful change. An advisory committee will provide an established venue for public input, open the dialogue to different viewpoints, and increase transparency. Input via the advisory committee would apply to all agency programs – surveillance, education, research, etc.
Spread of Lyme
Lyme is steadily increasing its spread in the US and is found in more than 80 countries worldwide. In August 2013, the Centers for Disease Control & Prevention (CDC) confirmed a 10-fold under-reporting of Lyme cases, estimating 300,000 Lyme cases annually. No one is safe from the disease; thirty-seven percent of reported cases of Lyme are children from birth through 18 years. Besides Lyme, other TBD of serious concern 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 parkeri, Ricketsiosis found increasingly along the Gulf Coast and in the South; Borrelia miyamotoi, first identified in Japan and now found in the US; newly found Ricketsia species 364D in the Pacific Region; and a newly discovered tick-borne virus in Missouri, Heartland. It is past time to enact federal legislation to help address the problems associated with TBD.