On January 26 – 27, a different kind of telethon will take place when Lyme patients and their supporters from coast to coast will make phone calls to their Congressional representatives demanding more attention be paid to the growing epidemic of Lyme disease—what many people believe to be the greatest threat to public health since the AIDS epidemic.
According to Debra McGregor, of the Texas Lyme Disease Association and a co-organizer of the campaign, “Unreliable tests, inadequate treatment regimens, insufficient funding for research, ineffective programs for prevention, combined with CDC’s endorsement of outdated treatment guidelines have created a perfect storm of unmet medical need and patient suffering.”
She continues, “Hundreds of thousands of patients suffer a greatly diminished quality of life; a tragedy compounded by severe financial hardships from out-of-pocket costs and lost income.”
Lyme disease continues to spread rapidly, with a 320% increase in the number of high risk counties from 1992 to 2012. The number of new cases annually acknowledged by CDC has increased dramatically from just 10,000 in 1995 to more than 300,000 in 2013—six times more than HIV/AIDS—and likely many more due to underreporting and misdiagnosis.
A review of studies from 1992 – 2008, shows that the two-tier test endorsed by CDC misses more than half the cases, even in the late stages of the disease. A 2015 report by the Johns Hopkins Bloomberg School of Public Health shows that treatment regimens endorsed by CDC leave up to 36 percent with persistent symptoms.
The position paper for the telephone call campaign says CDC provides preferential treatment to the Infectious Diseases Society of America (IDSA) by promoting the 2006 IDSA guidelines for Lyme disease, which are non compliant with federal standards, while withholding information from the public about the 2014 guidelines from ILADS, which are compliant with current standards.
According to Bruce Fries, a co-organizer of the campaign and member of the Mayday Project advocacy group, “It has been 40 years since Lyme disease was identified, yet CDC has failed to protect the public health and made matters worse by endorsing outdated treatment guidelines that misrepresent science and restrict access to care for chronically ill patients.”
What’s even more troubling says Fries “is that CDC officials who are providing the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a glaring and long-standing conflict of interest.”
Fries is also concerned that members of the IDSA guidelines review panel are awarded a disproportionate share of CDC and NIH research grants for Lyme disease, with two institutions, Yale University and New York Medical College, receiving more than $52 million over the past 17 years with few tangible benefits to patients.
In addition to legislation, such as S.1503, the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2016, which is under consideration in the U.S. Senate, callers want stringent legislative remedies to address the underlying problems and compel reforms of the CDC and NIH grant award process.
McGregor adds, “The costs of ignoring these underlying issues is continued unnecessary suffering and an escalating economic burden to our society.”
The two-day campaign is the result of collaboration of advocates and advocacy groups who are working together for the collective good of the community.
The complete text of the position paper for the campaign is available at: www.LymePatientAdvocacy.org
More details can be found at: www.Facebook.com/events/1739734586248693