Lack of communication between the medical community and the public was the topic of interest at Thursday’s Ford Hall Forum, where a panel gathered to share their unique experiences in the field and discuss how society as a whole responds to viruses and pandemics.
Moderator Jean McGuire, executive director of the Metropolitan Council for Educational Opportunity, began the conversation by sharing an anecdote about a doctor who wanted to inform a patient’s wife that the patient was HIV-positive, but could not because of how difficult of a conversation it was. Such a story portrayed how society struggles to deal with medical issues.
The panel featured Associate Hospital Epidemiologist at the Boston Medical Center Dr. Nahid Bhadelia, Executive Director of the AIDS Action Committee Carl Sciortino, and distinguished Professor and Chair of the Department of Health Law, Bioethics, and Human Rights at Boston University George J. Annas
“The name of the forum tonight, just the word ‘Virus’, it’s kind of a scary word. If it was called ‘Bacteria’ or ‘Disease’ or ‘Public Health’, those are safer words. Viruses are kind of scary,” said Sciortino.
Sciortino, who is HIV-positive, shared a few stories of his own about how the disease can affect patients and their loved ones. Specifically, he described how hospital officials accidentally exposed to a young woman’s family that she had AIDS. The patient was not originally in the hospital for AIDS treatment, and her partner had knowledge of her disease but did not want the rest of their family to know. She has since lost her partner, and her family is now estranged from her.
“I know very many people in my social network in this city who are living with HIV today in progressive bastion Massachusetts in absolute secret because they don’t want anybody to know,” said Sciortino. “Why? Because we don’t talk about it. We are living in the past, and that secrecy and that shame have real effects for people and public health.”
Sciortino, a former Massachusetts state representative, said state quarantine laws have changed since he was in legislature. What Sciortino said he doesn’t understand is why the public is still uninformed of various drugs that could help HIV patients live through their disease without the negative side effects.
In addition to sharing how viruses are dealt with on a personal level with patients, the panel discussed how medical issues are handled on national and international levels.
Bhadelia said viruses test the kinks in the public health defense, and that these pathogens seem to accentuate economic differences within communities. She added that those in lower socioeconomic classes seem to suffer more from epidemics than those in higher classes, as most medical facilities lack the capital to combat epidemics.
Because diseases like Ebola share symptoms with other diseases, they can be extremely hard to diagnose, Bhadelia said. Some were threatened with losing their jobs if they requested to take leave to treat Ebola patients, she said.
“For example, anecdotally, there were 10 doctors and nurses with me in November. Four of the people down there had to either quit their job or fired,” said Bhadelia. “They were basically told, ‘If you go down there, don’t come back.’”
Annas, lauded by McGuire as the “patron of patients,” talked about how medical conditions are much worse internationally, but lamented that Americans are particularly terrible at dealing with uncertainty. An example he used was the imbalance of communication with those averse to the idea of vaccinating their children. Annas said there have been pediatricians who refused to care for children who have not been given immunizations in order to push parents to have their children vaccinated.
The panelists said there are times when a disease is only taken seriously when certain kinds of people are dying and Americans are mostly concerned with what is going on in the the U.S. and not globally.
“It kind of depends on who’s dying, doesn’t it? It’s interesting,” said Bhadelia. “I think it depends on where it is.”
Annas supported this with a thought on the circumstances that surrounded the concern with Ebola in the U.S.
“When it becomes enough for the United States is when two white people were brought back for treatment,” Annas said.
