Let’s Demand the CDC Do More to Address Lead Poisoning and Lyme Disease

The Centers for Disease Control and Prevention have largely escaped scrutiny as problems with lead in water infrastructure and vastly under-researched chronic Lyme disease effect people nationwide.The Centers for Disease Control and Prevention have largely escaped scrutiny as problems with lead in water infrastructure and vastly under-researched chronic Lyme disease affect people nationwide. (Photo: Steven Roy / Flickr)

Reports on the lead poisoning scandal in Flint, Michigan, have rightly laid the blame for the travesty on Gov. Rick Snyder and the Michigan Department of Environmental Quality, a state environmental agency. Most reports also find fault with the Michigan Department of Health and Human Services, the state-appointed emergency managers who were responsible for switching Flint to inadequately treated water sources and the US Environmental Protection Agency (EPA). However, there is one federal agency that has largely escaped scrutiny thus far in relation to the Flint tragedy: the Centers for Disease Control and Prevention (CDC).

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In this presidential election year, voters have the opportunity to create political momentum to solve the various public health crises in this nation — including the nationwide problems with lead in water infrastructure and also the vastly under-researched chronic Lyme disease epidemic — by demanding that presidential candidates pledge to push the CDC to live up to its responsibility in both of these realms.

The CDC’s Responsibility for the Flint Disaster

The CDC’s National Center for Environmental Health (NCEH) is charged with “national leadership in prevention programs, global health, tests, and services” and provides the related “standards, guidelines, and recommendations” and “training and technical assistance of officials of state, local, and tribal environmental health agencies in preventing and responding to environmental public health challenges.”

The CDC Lyme response includes a nationwide approach that sounds good on its surface.

For example, the Florida Environmental Public Health Tracking program works in partnership with the Florida Department of Health and the NCEH “to track diseases that may be related to environmental exposures.” The NCEH has collaborated with the Florida Department of Health to gather data sets on environmental hazards — such as lead and arsenic — and associated health outcomes. The NCEH website states that it partners with all state, local and tribal health departments.

What responsibility does the CDC’s NCEH have in the case of Flint? As in Florida, has the NCEH collaborated with the Michigan Department of Health and Human Services to gather data sets on environmental hazards, such as lead, and associated health outcomes?

When I contacted the NCEH by phone on April 4, 2016, with these questions I reached a “public information representative” who declined to give me their name. In response to my questions, the representative read a script indicating that the CDC is working with many organizations to address the Flint situation, provided a webpage to link to more info and suggested that I contact the EPA.

This brief interaction left me with even more unanswered questions about the CDC’s role. What “standards, guidelines, and recommendations” has the CDC’s NCEH provided the Michigan Department of Health and Human Services regarding lead? Is the analytical incompetency that helped to create this lead poisoning tragedy a result of CDC/NCEH training or technical support? What role will the CDC/NCEH play in addressing the current crisis? Will it include data sampling, analysis training and technical support for the Michigan Department of Health and Human Services?

These are the sorts of questions about the CDC that we should be urging all of the presidential candidates to broadcast from the bully pulpit of the presidency. And while we’re at it, we would also do well to increase the pressure on the CDC to answer for its sorely outdated and insufficient approach to Lyme disease.

How the CDC Is Failing Lyme Disease Patients

The CDC response to the Lyme epidemic has been as disappointing as the CDC’s actions to date to prevent the lead poisoning epidemic in Flint.

The CDC Lyme response includes a nationwide approach that sounds good on its surface: It involves “training and technical assistance of officials of state, local, and tribal environmental health agencies” and the dissemination of “standards, guidelines, and recommendations.” The CDC also provides state-level training for Lyme surveillance and data analysis for Lyme infection rates. Moreover, the CDC is supporting a national public health program called Lyme Corps. The Lyme Corps program is training university students in the fields of health, and in turn, these students are “training” health provider centers and the public about Lyme.

The problem, however, is that the CDC promotes comprehensive outdated and subpar Lyme guidelines via their training in Lyme Corps.

Lyme Corps training materials are promoting the Infectious Diseases Society of America’s (IDSA) Lyme guidelines, even though these guidelines have been removed from the National Guidelines Clearinghouse (NGC). These outdated guidelines do not meet current NGC criteria, nor do they comply with the evidentiary standards set by the Health and Medicine Division, a division of the National Academies of Sciences, Engineering and Medicine.

The IDSA guidelines are keeping many thousands of Lyme patients from being diagnosed and accessing sufficient and quality treatment. Based on CDC numbers for the United States, annual Lyme infections break down to 900 to 1,000 new infections per day, or 40 new infections per hour.

Those who are able to access Lyme diagnostic testing face a 50 percent chance of inaccurate results. Inaccurate false negative test results often lead to delayed diagnosis and full systemic complications. These may include serious heart, nervous system and immune impairments, dysfunction and life-altering damage.

According to the IDSA and CDC, patients suffering deeply entrenched systemic Lyme complications should be cleared of infection with 21 to 28 days of antibiotics. Many such patients remain significantly compromised after the short course of antibiotics, and are denied additional treatment by the majority of medical professionals who are trained to follow CDC and IDSA Lyme guidelines.

In the case of the CDC Lyme response, the promotion of subpar guidelines via Lyme Corps may be driven by the fact that the CDC’s deputy director of the Office of Infectious Diseases, the director of the National Center for Emerging and Zoonotic Infectious Diseases and the director for the Division of Vector-Borne Diseases are in an unbroken chain of command, and all three are members of the IDSA.

Nationwide Dysfunctions in Our Public Health System

The infrastructure and governance failures in the Flint crisis are now being discussed as regional and national issues. In a similar vein, the Lyme epidemic is widely recognized as an expanding national health threat, rather than a hazard for those living and visiting the nation’s Northeast.

“For 20 years, I have been working in service of others as a licensed clinical psychologist,” said Dr. Lisa L. Lindsay of Rochester, New York. “I sought accurate diagnoses over seven years of health descent before I found out Lyme caused my illness. The number of people with Lyme and the cost to society is growing exponentially. It is time for presidential candidates to take on the Lyme epidemic.”

Like the Flint tragedy, the Lyme epidemic highlights the nationwide dysfunctions of public institutions at the federal, state and local levels. In both cases, many of those affected are children. And in both cases, much devastation and suffering could have been reduced or prevented if our public institutions and elected officials had fulfilled their duties.

“We need more accurate testing and more research into Borrelia and coinfections,” Sebastien Millon, an artist living in Phoenix, Arizona, told Truthout. “I want to hear presidential candidates say it is criminal that so few resources have been devoted to understanding these infections and helping patients.”

Lyme has been recognized for 40 years. The Lyme epidemic is nationwide. Its social, economic and human costs are spiraling. The response by public institutions has been slow and weak.

Like the nationwide problems with lead poisoning, the Lyme epidemic merits attention and discussion on the platforms of the presidential race.

This article was excerpted from a petition that calls on the CDC to stop a secretive and harmful program called Lyme Corps. A digital copy of the petition is available here.