These Death Detectives Are Keeping Track of HIV Related Fatalities

San Francisco’s Susan Buchbinder and Sandy Schwarcz are obsessed with death. In fact, they’re so familiar with the Grim Reaper that no one dies in their city without them knowing about it. And when someone does die, they want know why — and if they could have stopped it.

These two San Francisco Department of Public Health employees are less fascinated with death than they are determined to prevent it. Like ever-vigilant superheroes, they feel every death in their city as though it is some kind of personal failure.

Buchbinder and Schwarcz pour over death certificates, and reams of data — including statistics about illnesses and diseases (particularly HIV), and their symptoms and side effects — in order to understand why someone has died. They cross-reference death certificates with the national database of death records from each state’s vital statistics office.

“We get the death certificates… and then we do matches with the National Death Index that records everyone’s death. So, we get the underlying cause of death and we also get multiple causes of death.”

For example, Schwarcz explains, “if someone with HIV dies from a heart attack, the underlying cause of death is heart disease. HIV may be listed on the death certificate as a condition present at death, and if so, HIV would be listed as a cause of death but not as the single underlying cause.”

Schwarcz, who is overseeing a pilot project diving even deeper into the data around deaths of those with HIV, adds “there are known inconsistencies in how death certificates are completed and the coding of causes of death are based only on information from the death certificate,” which is not always completed by the person’s primary health care provider.

“To obtain a better understanding of the documentation of causes of death on death certificates,” Schwarcz says, “this project includes an independent review of the circumstances surrounding death — as obtained through the medical chart reviews — by physicians who provide care to persons with HIV. We will compare the information on causes of death as determined by these physicians to the information from the death certificates.”

Buchbinder — who is the director of Bridge HIV, San Francisco County’s HIV prevention research unit — looks at HIV-related deaths and how to prevent them. “We’re trying to identify, first and foremost, how do we prevent HIV-associated deaths? But secondly, how do we prevent preventable death?”

You read that correctly: San Francisco Public Health wants to eliminate preventable deaths, almost like some kind of futuristic pre-crime department bent on preventing murder.

“We are collecting information regarding possible risk factors associated with death,” Schwarcz says. “Such as inconsistent primary care, poor medication adherence, inadequately treated mental illness, etc., as well as more detailed information concerning the circumstances of death.”

“Here in San Francisco,” Schwarcz adds, “we have seen that despite the widespread prescription of antiretroviral therapy, persons with HIV [or] AIDS continue to experience premature death. Our data indicate that although deaths have declined, we continue to have about 200 deaths every year in persons who were reported with HIV in San Francisco. We know as well that about 40 percent of these deaths are attributed to HIV and that the most frequent non-HIV related underlying cause of death has been due to non-AIDS related cancers, heart disease, [and] accidents — mostly drug overdoses.”

“We’ve seen an uptick in the number of drug overdoses of people living with HIV,” Buchbinder says. That bothers her because “that should be a completely preventable cause of death. And we’ve seen a small increase in the number of suicides. So, we are looking at this as both HIV-associated causes of death, but we’re also looking at preventable causes of death.”

As part of that quest to preempt preventable deaths, Buchbinder has begun looking for cases where, “for instance, if someone who’s pretty young — under 40 or under 50 — dies of something that we think generally should kill someone who would be much older? Well, we’re also looking at those cases to see if that’s HIV-associated or not.”

That’s because studies have suggested some aging is happening faster for people who are on antiretroviral therapy.

Ultimately, Buchbinder says, “We’re trying to do a deep dive into the causes of death and do as much as we can to do a structural autopsy of each person — as we get a report of death — to figure out how did the system fail this person? And is there some way that we could have intervened to have kept this personal alive?”