Why did Thomas Duncan have to die?

Washington, DC, October 10,2014 (AMG) – Thomas Eric Duncan, the first person to be diagnosed with Ebola in the United States, died on Wednesday morning in a Dallas hospital, unlike several other Ebola patients who received care in America. But why?

Duncan’s friends and family have their own views. “He is a Liberian man”, a friend told The Washington Post,  “the family feels he wasn’t getting the right treatment because he was an African man. They feel America is fighting only for the white man, not the black man.”

The question of whether there is any truth to this sentiment begs an answer. Doubt has been cast on how well this Ebola case was handled in comparison to the white American citizens who were immediately flown home, but any accusation of discrimination has been vehemently denied by hospital officials, who point to their history of serving a multicultural community.

There are a number of factors that differentiate Mr. Duncan’s case from cases in US citizens: the delay in his diagnosis; the amount of time it took for him to receive experimental treatment; the absence of an available blood transfusion from an Ebola survivor; the fact that the hospital received no prior warning of his arrival; and his lack of health insurance.

Some of these factors were unavoidable. Others reflect a bigger, murkier picture.

Victim or villain: The media’s tone of coverage detailing Mr. Duncan’s battle against Ebola appeared at times to be accusatory rather than sympathetic, and used stark comparisons with ‘innocent victims’ such as school children for implicit emphasis. His photo and medical information were seen on news sites in a way reminiscent of a wanted poster, and differed considerably from the smiling images used for Dr. Kenneth Brantly and Nancy Writebol, the first Ebola patients to land in America.

The commentary focused on whether or not Mr. Duncan had declared his recent exposure to Ebola before boarding the plane and why he hadn’t gone to the hospital sooner. And while it is possible that he was not fully aware of the risk he had taken in helping an Ebola patient in Liberia during her hour of need, all of this should have been irrelevant next to prioritising his recovery. But it wasn’t.

The delay in Duncan’s diagnosis has been blamed on an electronic fault in the medical records, which prevented doctors from seeing his travel history and linking it to his symptoms. This unsatisfactory explanation has led to questions on whether there was a connection between Duncan’s delayed diagnosis and his nationality, ethnicity or lack of health care coverage. An even larger question remains: did he receive the same level of care as he would have had he been a ‘victim’ with a different racial profile?

Disease is engrained in the western world’s understanding of the African continent. Had Mr. Duncan remained on Liberian soil, he would be another tragic victim of Ebola. Instead, he travelled to the US where diseases like this are not supposed to happen.

Access to experimental treatment: There are two issues at play over the use of experimental treatment: whether a patient should be given a drug when its safety profile is not fully understood; and, if given, whether everyone should have access to it.

It is worth taking note of two relatively-recent examples of when trial research mattered. The fatality rate of anthrax infection through inhalation was initially thought to be 90%, until further research determined that it was closer to 50% with early intervention. Before this information was available, a treatment that reduced fatality to 60% would have been considered a success, but would not have given an accurate picture. This is particularly relevant in the case of Ebola, where early intervention is known to increase the chance of survival.

In April last year, an HIV vaccine trial was stopped after it was found that more people who received the experimental vaccine contracted the virus than those who received a placebo. The difference was not statistically significant, meaning there was no proof the vaccine caused HIV infection, but for ethical reasons it was deemed unsafe to continue. This trial had been in progress for four years and involved 2,500 people, eventually reaching Phase IIb of its trial before being discontinued. Current Ebola drug and vaccine trials are being rushed through Phase I, with the intention that they will be distributed to health workers by next year.

Because there are no proven drugs or vaccines for Ebola, whether or not anyone should receive them is up for debate. The decision to administer them has been made, though, but only for the Americans and Europeans airlifted out of affected areas to their own countries — not for the thousands of West Africans who have also suffered.

It has been said that, logistically, it is far easier to treat patients who are in the same location as a limited drug that must be kept refrigerated and closely monitored by clinicians due to its largely-unknown effects. From an economic standpoint, it is clear that the treatments  cost more than governments in West Africa can afford, and that pharmaceutical companies are more likely to provide them to those with sufficient medical insurance, who will generate more attention and potential investment.

Mr. Duncan was in the same location as the medication and had the benefit of clinical staff and infrastructure, however his family argues that his treatment may have been affected by his economic status and lack of insurance. He was the first to receive the experimental drug brincidofovir, but not until six days after his admission – far longer than any American citizens waited for their treatment. All the while, the Dallas hospital insists that everyone receives the same level of care, regardless of their ability to pay.

What this means: What is clear in this muddled case is that there lacks transparent and coherent guidelines detailing what to do when not everyone can live. The death of Mr. Duncan poses more questions than answers, not only regarding the preparedness of western countries in their ability to contain the epidemic, but also on their practices and attitudes generally when caring for non-nationals.

It is not only the family of Mr. Duncan that deserve answers, we all do.

Resource: A report of an advisory panel to WHO: Ethical considerations for use of unregistered interventions for Ebola virus disease