Fighting the Ebola Stigma

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Fighting the Ebola Stigma

October 31, 2014 by Hope Ferdowsian

We’ve seen it before. Discrimination based on fear and misconceptions about disease. Too much of what we have seen in the response to Ebola is reminiscent of the early days of the HIV/AIDS epidemic.

As a medical doctor double-board certified in internal medicine and preventive medicine and public health, I’ve seen how stigmatization can devastate patients and the public health response to HIV/AIDS and other diseases in the United States and abroad. Over the past decade, I’ve worked in several African nations including the Democratic Republic of Congo, Ethiopia, Kenya, Malawi, South Africa, and Uganda.

Unfortunately, people of African descent are now being stigmatized because of the fear and hysteria surrounding Ebola, even if they never traveled to West Africa. But a Liberian-American woman is now challenging xenophobic attitudes, after her niece was sent home after she sneezed in school. The child has never been to Liberia.

Around the country, people of eastern, central, and western African descent are facing similar forms of discrimination in schools, restaurants, hospitals, and airports.

Launching an Internet campaign with the slogan “I am a Liberian, not a virus,” aunt and mother Shoana Solomon is challenging the growing stigmatization of people of African descent.

Unfortunately, the stigmatization associated with Ebola also extends to health care workers who are returning from countries ravaged by the disease. Nurse and epidemiologist Kaci Hickox was the first health care worker to be quarantined under a New Jersey and New York policy, shortly after another health care worker who recently returned from the region tested positive for Ebola in New York City.

Politicians reversed their decision to hold Ms. Hickox after scientists including Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, pointed out that there was no medical basis to quarantine Ms. Hickox.

Ebola is not a death sentence. Though it is a public health threat that needs to be taken seriously, people can survive the disease. As cofounder of Partners in Health, Dr. Paul Farmer, said, “Ebola has not yet come into contact with modern medicine in West Africa. But when protocols for the provision of high quality ‘supportive care’ are followed, the case fatality rate for Ebola may be lower than 20 percent.”

We need to continue to mobilize resources to resource-strapped areas affected by Ebola. This is the only way we will contain the disease.

Immediate public health action is critical. Thousands of children are being orphaned in Guinea, Liberia, and Sierra Leone, some left homeless and alone because of the hysteria surrounding the disease.

A dog in Spain was even stigmatized and killed, despite testing negative for the virus. But, too often, animals bear our burden. It is entirely possible that our treatment of animals is what landed us in this situation in the first place. The Ebola virus is typically transmitted to humans by killing and eating animals like bats, pigs, monkeys, and chimpanzees.

In fact, both of the two American outbreaks of Ebola are traceable to the maltreatment of animals. In 1989, a mutated form of Ebola was discovered in Reston, Virginia, after monkeys were imported in crowded, inhumane conditions from the Philippines to the United States for use in laboratory experiments. The outbreak was the basis for Richard Preston’s The Hot Zone.

The discrimination and stigmatization we are witnessing is very different than the actions of the health care providers at Texas Health Presbyterian Hospital who cared for Thomas Eric Duncan, the Liberian man who died of Ebola in Dallas, Texas. In an interview with 60 Minutes, Duncan’s nurses described how they sat with Mr. Duncan, comforted him, held his hand through protective gear, and extended the compassion due any living being – even as he died.

We should reward these acts of kindness, not penalize them.

 

Filed Under: All Blog Posts, Ethics, Human Rights, Medicine and Public Health

Rethinking the Ethics of Animal Research

April 13, 2014 by Hope Ferdowsian

In 1965, Americans were stunned to read about Pepper, the Lakavage family’s affectionate Dalmatian, whose story changed America. Pepper was often found accompanying Julia Lakavage on her nursing rounds in an Allentown, Pennsylvania hospital. One summer evening in 1965, Pepper disappeared. After a desperate search by Pepper’s family and her supporters, Pepper was found dead in a New York hospital laboratory. She had been stolen by dealers and sold for use in research experiments. Pepper’s story, published in Sports Illustrated, along with a Life magazine article, “Concentration Camps for Dogs,” showing starving, chained, and dead dogs at a breeding farm, galvanized support for the US Laboratory Animal Welfare Act.

When the US Congress passed the Laboratory Animal Welfare Act in 1966, it provided minimal protections to every dog, cat, monkey, and other nonhuman animal living in taxpayer-funded laboratories. But, in 2002, Congress inserted a loophole to arbitrarily exclude birds, mice, and rats from being counted as “animals.” There are still no absolute limits as to how much nonhuman animals used in research can suffer, even for those covered by the Animal Welfare Act and other international guidelines. Upwards of 100 million nonhuman animals are used in experiments each year.

Many of the ways that nonhuman animals are used in society, including in research experiments, are reminiscent of the ways in which humans have been maltreated. Sometimes changes in laws only occur in response to public fury, as in Pepper’s case. Concerns about systematic selection of humans for research because of their easy availability, class, compromised position, or manipulability have also led to significant improvements in human research protections. Recorded abuses of human research subjects served as the impetus for the establishment of the Nuremberg Code, the Declaration of Helsinki, and the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research and resulting Belmont Report.

Once again, public concerns have driven a recent shift in US federal policy governing animal research. Concerns about chimpanzee research have moved front and center. My colleagues and I have shown that chimpanzees used in laboratory research experience signs of posttraumatic stress disorder and other psychiatric disorders, similar to mental illnesses experienced by war veterans, rape survivors, and human torture survivors. The results of our purely observational international study were featured as a reason for Scientific American editors’ call for a ban on chimpanzee experiments.

In response to public concerns about chimpanzee experiments, US Senators Bingaman, Udall and Harkin, and former New Mexico governor Bill Richardson requested the National Institutes of Health commission an independent report by an Institute of Medicine committee to analyze the need for chimpanzees in biomedical and behavioral research. Unlike virtually all previous federal-level reports regarding the protection of human and nonhuman research subjects, this report was accepted as federal policy within two hours of its public release on December 15, 2011. The resulting report recommended what are unusually demanding guidelines for taxpayer-funded animal research. The policy change opened the door to larger questions about the lives of other nonhuman animals who are used in research experiments: What about other nonhuman primates? Or dogs, cats, or mice?

A new article collection entitled, “Rethinking the ethics of research involving nonhuman animals,” published in the esteemed journal Theoretical Medicine and Bioethics, openly challenges traditional notions about animal experimentation. Editors Tom Beauchamp, John Gluck, and I asked authors to examine how concepts traditionally reserved for human research could be applied to considerations about the use of nonhuman animals in research. In this original article collection, authors explored how major concepts in human research ethics – such as autonomous decision-making, informed consent, assent, dissent, obligations to avoid harm, and demands of justice – could and should be applied to decisions about animal research.

The time has come for a more honest and thorough evaluation of the ways in which humans use and treat nonhuman animals. Barring nonhuman animals from basic protections undermines the fundamental principles on which protections for humans are based, and exclusion of nonhuman animals from basic protections opens the door to subjugation, discrimination, and abuse of nonhuman animals and vulnerable humans. Only when we take these issues seriously will we see justice for all animals – including humans.

 

Filed Under: All Blog Posts, Animal Rights, Ethics, Medicine and Public Health

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