Protecting the Public Against E.coli

Victim Support and Consumer Information Network
Heather Klinkhamer
Conference on Protecting the Public Against Food Borne Pathogens: E.coli
The Human Element Panel
Georgetown University
September 25, 2025

Good afternoon. My name is Heather Klinkhamer. I am the Program Director for S.T.O.P., which is an acronym for "Safe Tables Our Priority."

Before I go any further, I want to re-focus our attention on why all of us are gathered here at this conference today and tomorrow. We are here because hundreds have died, and continue to die, and many thousands have suffered torturous sickness and permanent organ damage, because their dinner, lunch, snack, or drink was contaminated with powerful and toxic microbes.

Everyone should understand the human consequences of a food production and supply system that delivers to America's kitchens food that may be deadly. Hemolytic Uremic Syndrome -a condition commonly induced as a result of infection with E. coli O157:H7 - turns a child's blood stream into a distribution system that carries poison to every organ in their body. If a child is lucky, he or she escapes, after emergency intensive care and blood transfusions, with the chance to keep on living. In other cases, treatment may consist of repeatedly replacing all of the blood in the body; dialysis; or removal of a portion of the bowel. As symptoms become even more severe, children may be put on heart-lung bypass machines and undergo open-heart surgery. Victims may be left blind, paralyzed or comatose. Pathologists who have conducted autopsies of victims describe the organs as having been liquefied. And those who survive can develop life-threatening complications many years later.

Representatives of S.T.O.P. can tell you this because our members know from very personal experience. S.T.O.P. was born out of the collective grief and anger of parents of E. coli O157:H7 victims. The January 1993 outbreak of E. coli in the Northwest associated with Jack-in-the Box hamburgers turned out to be a pivotal moment in contemporary food safety history. Because of the sheer magnitude of the outbreak, the threat of E. coli O157:H7 contamination for the first time garnered nationwide media attention. The broadcast of the names of those victims enabled victims of previous incidents and outbreaks of E. coli from around the country to find one another. It was those victims who had lost or nearly lost their loved ones, who came together from across the country to form S.T.O.P. Before their experiences with E. coli O157:H7, many of S.T.O.P.'s founders were unaware that this microbe even existed, or that it could be in the food supply or that the disease it caused could be so ravaging. S.T.O.P.'s founders learned later that branches of our government knew foodborne illnesses were occurring but had not adequately informed the public of the presence of pathogens and the potential threat they pose to consumers.

S.T.O.P.'s founders were propelled by a single mission with a single message. The mission: to prevent others from experiencing the anguish and suffering that they have experienced as victims of foodborne illness. The message: parts of our nation's food supply present a serious risk to the health of American consumers and to the very lives of their children. We knew this from personal experience.

S.T.O.P.'S PROGRAM

S.T.O.P.'s accomplishments are substantial. For example, in the year after the Jack-in-the Box outbreak, the national television news magazines did five separate meat and poultry safety show featuring victims of foodborne illness, many of them S.T.O.P. members who disclosed their personal tragedies for the sake of public education.

To date, S.T.O.P.'s program activities include:

• Playing a key role in the adoption of the HACCP regulation that overhauled the federal meat and poultry inspection system. Both the USDA and the President have credited our organization for the tireless efforts of our members, which included endless speaking engagements, picketing, and a candlelight vigil. It was our pleasure to be in the Oval Office when President Clinton announced the promulgation of the HACCP rule on July 6, 1996.
  
• Promoting this year's juice safety reforms. Again, through endless speaking engagements, development of an accurate juice safety information publicity campaign, and building alliances with leaders in industry, we have secured both a public dialogue and substantial change in this area.
  
• Insisting that government and industry accurately inform consumers of the risk in undercooked meat. S.T.O.P. members know from painful experiences that hamburgers can, and often are, dangerously undercooked and brown in the middle due essentially to oxidation. While some argued that consumers were not sophisticated enough to understand the message that an internal temperature of 160 degrees was the only reliable indicator of a safe hamburger, S.T.O.P. demanded that consumers had a right to accurate information. Days before the government's 1997 national conference devoted to exploring new strategies for educating consumers, USDA updated its "brown in the middle" message to provide a clearer time-temperature message in its consumer education materials. In the near future, ARS will conduct research to better evaluate the pre-mature browning phenomenon and the risk pre-maturely brown hamburgers pose to consumers. We applaud both efforts.
  
• Playing a key role in connection with the Hudson Foods recall. From our own investigation, we learned that the initial Hudson recall was grossly underestimated and that contaminated product may have been distributed to top retailers across the country. S.T.O.P. alerted the media to warn the public about the threat the contaminated product posed to public health. We provided information showing how we deduced that the company underestimated the recall. We also used the incident to highlight loopholes in recall policy: USDA lacks mandatory recall authority, often declined to notify the public of recalls, and frequently refused to announce where contaminated products were distributed. The Secretary of Agriculture asked Congress for mandatory recall authority. Yesterday, USDA held a meeting - in which S.T.O.P. participated - to gather comments and recommendations for altering its recall policy.

VICTIM ASSISTANCE

While our single greatest form of victim assistance is to work to reduce the number of victims, our most critical link to the public is our 1-800- 350-S.T.O.P. victim's hotline. We receive frantic calls from parents whose children are battling E. coli O157:H7 in intensive care units. The volunteers who staff the hotline provide an empathetic and understanding ear, but also essential information about foodborne diseases. We typically match new victims to members who have suffered from the same foodborne illness: E. coli to E. coli, Salmonella to Salmonella, Hepatitis A to Hepatitis A and so on. Those members are uniquely suited to counsel and to offer advice to victims. By phone or through our reference packets, we provide callers with recently published studies and information about diagnostic techniques. We also take our information from the hotline to local health departments and appropriate federal agencies.

PUBLIC EDUCATION FOR CONSUMER PROTECTION

Because most of our members feel information that could have prevented their personal tragedies was not adequately conveyed, many of our members have a passion for knowledge that makes us particularly strong champions of public dialog. Indeed, in our efforts to gather information, we often find we know more or are more up to date on a topic than members of government or industry. This is one of the contributions we make to the issues.

As the victims of foodborne diseases that maimed or killed their loved ones, our members know the sheer folly and the deadly results of hiding or sugarcoating information about foodborne illness. Even today, some industry and government representatives continue to obfuscate about the fundamental point: food is arriving in our homes and our restaurants already contaminated by potentially deadly microbes.

A new and equally false and dangerous claim is being concocted by industry associations and condoned by some representatives of USDA and FDA - the idea

that food producers can continue to turn out product contaminated with deadly bacteria, and that the consumer should shoulder the responsibility for decontaminating products through proper preparation. This is the worst form of caveat emptor. It is an insult to the memory of our collective experience that consumers should continue to be made the parties responsible for handling and decontaminating the food they buy. This proposition is supported by government and industry through almost imperceptible shifts in consumer education that address how consumers can supposedly remedy the food safety problem, and how consumers are therefore implicitly at fault when illness occurs for not keeping clean kitchens and washing their hands.

These education programs will not succeed in reducing the public threat of pathogenic E. coli. The pathogen has an infectious dose estimated to be between 1 and 100 microorganisms. Microbiologist tell us that this pathogen requires aseptic technique, something impossible for the consumer or retailer to execute in the kitchen or restaurant.

S.T.O.P. seeks to understand why we appear to be one of very few parties interested in ensuring that the public is informed about the prevalence of foodborne pathogens and the severity of foodborne illness. Those with the clout to help ensure a full public understanding of these diseases have not yet stepped forward to do so. The CDC is widely regarded as the national repository of the best information about foodborne illness outbreaks. Unfortunately, it lacks the funding and jurisdictional power to fulfill roles that the public expects from this agency: public notification of foodborne threats and public education about foodborne illness. CDC doctors publish in medical journals papers about outbreaks they investigate. However, these papers are published months or even years after outbreaks occur and are not widely accessible to the public.

Despite its suspicions otherwise, the CDC will often make only the most preliminary of statements of how or why contamination has occurred. This leaves concerned consumers and victims with the responsibility of filling in the blanks. The CDC has not managed to compile a comprehensive list of all known outbreaks, despite the fact that the information would be invaluable to consumers. CDC is limited to providing information about incidents that the agency itself has investigated.

Under-reporting is another failure in the system that prevents consumers from getting accurate information about foodborne illness. The CDC should have mandatory reporting authority from the states so it can accurately track these diseases across the country.

Industry has taken steps to discourage the public from sharing in an open discourse. Agricultural disparagement or "veggie libel" laws proposed and implemented in many states are a blatant attempt to hinder the flow of information and free speech. Indeed, our members have received veiled threats of legal retribution as a result of their attempts to gather and disseminate accurate information and scientific discourse on pathogenic E. coli contamination.

Another effort to suppress public dissemination of the facts on foodborne illness is based on the notion, suggested by some members of industry and government, that consumers don't need to be informed because they would become confused, or they don't need labels because they won't read them. Tax payers and food buyers need to know the whole truth. They are already paying for it in both dollars and lives. Both industry and government should re-evaluate their descriptions of the consequences of these diseases. Consumers who hear sugarcoated messages about foodborne pathogens have little incentive to follow recommended handling procedures. Only when industry and government honestly convey information about these diseases, will consumers understand the gravity of these problems.

Our methodology toward spreading information is simple. As individuals and as an organization we speak publicly on this issue wherever and when ever possible. We have spoken to our PTA' s, our churches and synagogues, and our professional associations. Our members have spoken to associations such as the Poultry Science Association, the United Fresh Fruit and Vegetable Association, and the Association of Food Journalists. We regularly participate in USDA and FDA public meetings. We are in constant communication with members of the press.

This year we created an educational brochure on common foodborne bacteria with the National Consumers League. The brochures are distributed to consumers who contact S.T.O.P. for general food safety information. Copies of the brochure are available in the hallway.

This year, a S.T.O.P. victim member put S.T.O.P. on the world wide web. The page provides information on steps consumers can take to reduce their chances of contracting foodborne illness. The site also serves as an outlet for our recent press releases and policy positions. We also post a journal of food borne illness victims and their stories, which graphically reveals the true nature of these diseases.

GRASSROOTS ADVOCACY

By assisting victims and educating the public, we are addressing important immediate needs. But we should not confuse these activities with solving the problems of foodborne illness. Illness and death will continue and increase unless and until we reform the policies and practices at the heart of the food safety problem. Our greatest contribution to food safety, therefore, is the grassroots advocacy campaigns that we organize.

In the last year, S.T.O.P. has been joined by victims of E. coli O157:H7 from sources other than meat, such as apple juice and lettuce. Although we do not have a chapter in Japan, our members were regularly consulted by the Japanese Ministry of Agriculture, consumer groups and the media. Of course, you are all aware of the recent outbreak of O157:H7 in alfalfa sprouts.

I'd like to take a minute here to emphasize a point. S.T.O.P. can be distinguished from almost any other organization in one particular way. While most organizations constantly seek ways to increase their membership, our goal is just the opposite. A surge in our membership is an indication of a major failure in the safety of our food supply. Every time we take on a new issue, it arises out of the agony of someone's suffering.

With an influx of new members comes a new group of victims angry that their loved ones were made ill from contaminated food and eager to do something about it. In the last year we assisted new members and old in mobilizing grassroots campaigns.

Here is a brief overview of some of our current advocacy campaigns:

FRESH FRUIT AND VEGETABLES

Over the next few years we will work to improve both the minimum and average safety of fresh fruit and vegetables through mandatory HACCP. We believe that a successful program must be mandatory because our food supply is only as safe as its weakest link. We cannot raise the minimum standards in the industry unless everyone complies. We also expect to see farm of origin labeling placed on fresh produce and fresh produce products to assist in trace backs and recalls.

STATE INSPECTED MEAT

Legislation is now being considered to allow state-inspected meat into interstate commerce. It is clear that some state inspected plants are not "at least equal to" federally inspect plants. This was revealed in newspaper articles such as the one appearing in the Wall Street Journal dated July 17, 1996. To allow state inspected meat into interstate commerce would create 26 different inspection systems. To add yet another link in the chain would necessarily make it weaker. S.T.O.P. will oppose allowing state inspected product into interstate commerce until it is proven that state inspected products - not systems - are at least as safe as federally inspected products.

PATHOGEN SPECIFIC TESTING

As I said earlier, S.T.O.P. was pleased with the promulgation of the HACCP rule. However, there were some glaring omissions such as no testing for E. coli O157:H7 and no testing of generic E. coli in ground product. Testing for Salmonella in ground beef will not contribute to detecting enterohemorraghic strains of E. coli, which is the main pathogen of concern in ground beef. S.T.O.P. has always voiced its disappointment in the rule's lack of pathogen-specific testing requirements for various species. We consider this a serious flaw and will continue to press the government to rectify this error. In reality, industry is discouraged from testing ground beef because if O157:H7 is found, the company must report it to FSIS. We believe that species-specific pathogenic testing is a necessary component in an inspection system that is truly focused on public health.

CONCLUSION

S.T.O.P. is a key participant in the dialogue on foodborne illness. We hope that you understand that an educated consumer's perspective is vital to any discussion on food safety, whether it be victim assistance, medical or production information, handler education, or policy decisions. Accurate information about foodborne pathogens will reach consumers eventually, and our participation will ensure that it gets there sooner. Isn't our mutual goal to save lives?