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Beating AIDS With the Help of Data—and Engaging Directly With Your Care

How a multi-disciplinary approach can reduce transmission and encourage patients to engage consistently in their treatment.
Dozens of volunteers join a human chain in downtown Taipei. (Photo: Patrick Lin/Getty Images)

Dozens of volunteers join a human chain in downtown Taipei. (Photo: Patrick Lin/Getty Images)

My patient, Albert, a 30-year-old gay man who was the anchor of his family’s business, recently died in the intensive care unit, of central nervous system lymphoma—a byproduct of his immune system weakened by AIDS. Even though the medical establishment has not found a cure for AIDS, we have made massive advances in the treatment and prevention of HIV, the virus that causes AIDS. Just recently, the city of San Francisco announced its aim to be the first city in the nation with no new infections. At the recent European AIDS Conference in Barcelona, guidelines advocating universal antiretroviral treatment echoed those released by the World Health Organization. These are optimistic times for the AIDS community. So how did Albert slip through the cracks?

Until the mid-1990s, AIDS was uniformly fatal. But the past 20 years have seen an explosion of highly effective antiretroviral medications, including many single-pill, once-a-day regimens with few side effects. Today, patients with a new AIDS diagnosis who can begin antiretroviral treatment early have nearly the same life span as those uninfected by HIV. These advances have transformed the management of this disease both in terms of individual treatment and public health approaches.

Unfortunately, the fruits of these developments have not been fully realized. Recent estimates released by the Center for Disease Control and Prevention suggest that, of the 1.2 million Americans living with HIV infection, 39 percent successfully stay in regular medical care and only 30 percent achieve the optimal medical goal of full viral suppression by taking medications. So why do patients, knowing they have HIV infection, end up dropping out of care?

What we doctors are not so good at is making sure our patients are effectively engaged in their care.

Part of the answer lies in stigma. Despite greater social acceptance of gay men (still the largest epidemiological risk group for new cases), stigma persists, particularly in certain conservative communities. Admitting to being HIV-positive would result in having to “come out”—a process, for some, more painful than dealing with the disease itself. In Albert’s case, his family never uttered the word AIDS throughout his long hospital course.

But stigma is not the only culprit. How physicians administer care also has an impact. Clinics are pretty good at checklist items—making sure our patients get preventive health measures such as vaccines, Pap smears, and colonoscopies. These are performance measures that physicians are incentivized by insurance companies to provide as proof of effective delivery of care. What we are not so good at is making sure our patients are effectively engaged in their care. Are they showing up for appointments? Are they taking their medications? Are they practicing safe sex? This is a challenge for all primary-care clinicians who try to motivate behavior change to improve an individual’s health (e.g. weight loss, smoking cessation). However, with HIV infection, unsafe sex and imperfect adherence to medication regimens have a further effect: spreading the virus and perpetuating the epidemic.

How can doctors improve patient engagement? One approach is through the use of multi-disciplinary teams. In HIV care, such teams have always been part of the deal. In the days when AIDS was uniformly fatal, it was critical to have social workers, mental-health specialists, and pastoral-care providers working alongside nurses and physicians. In fact, the Ryan White HIV/AIDS program, a federally funded initiative that serves more than half a million people living with HIV, requires that its grantees demonstrate use of multi-disciplinary teams. This is because the program allocates its funds not only to clinical care but also to ancillary services such as medical case management, substance abuse, mental-health treatment, and housing services. The results are telling: In 2011, of those who received RW-funded HIV medical care, 82.2 percent stuck with their treatment, and 72.6 percent achieved viral suppression.

Clinics should also keep better track of their patients. While maintaining a database is costly, collaboration with the State Health Department could provide a solution. Traditionally, health departments have collected and reported statistics related to the AIDS epidemic, including the number of new cases, deaths, and demographic trends, as required by the CDC. Some of these statistics are based on laboratory reporting, since all laboratories are mandated to report on blood tests related to HIV to the health department. If clinics collaborate with their state health departments, they can use the collected data to identify patients who have been skipping their HIV lab tests. This approach, called “Data to Care” is being piloted in a number of different sites. In our own site, the Yale AIDS Care Program, we are going a step further: As part of a CDC pilot project, we are working with the Connecticut Health Department to identify and send out state-funded workers to link out-of-care individuals back to a clinic.

Such a “SWAT team” might have been able to identify Albert and bring him back into care before he became so ill.

The medical-care industry continues to focus primarily on what happens solely within our hospital and clinical settings. While this approach has many advantages, including preserving patient privacy, the dismal outcomes of AIDS patients tells us that we need to re-think our methods of delivering care.

San Francisco’s goal to prevent new HIV infection is ambitious and admirable. But even with promises to begin treatment for patients the day they are diagnosed, there will need to be follow up. As physicians, we have the potential to create the first AIDS-free generation, but we can’t do it alone. We may be able to achieve it, though, if we work with multi-disciplinary teams and re-think our approach to care. If we do that, then perhaps, in such a world, patients like Albert would have had a far different outcome.