12/05/2013 05:28 pm ET Updated Feb 04, 2014

What Next for Those Living With HIV?

Rob Stephenson, Public Voices Fellow, the OpED Project and Associate Professor of Global Health, Emory University.

Mohammed K Ali, Public Voices Fellow, the OpED Project and Assistant Professor of Global Health, Emory University.

December 1 was World AIDS Day, a critical day on the advocacy calendar to increase public discourse around the global HIV/AIDS epidemic. Since identification of the HIV virus in 1982, the number of people infected with HIV has risen to approximately 35 million globally, of which approximately 1.1 million are in the U.S. This year's World AIDS Day theme is "Getting to Zero -- HIV and adolescents," focusing the world's attention on the 2.1 million 15- to 24-years-olds globally who are living with HIV. HIV is clearly a terrible disease and one often associated with death and suffering. But with the advance of anti-retroviral therapy (ARV), medications used to suppress the HIV virus and slow disease progression, we are seeing significant gains in life expectancy among the HIV infected: people are now, more than ever, living with HIV.

The recently released movie The Dallas Buyers Club provides a stunning portrayal of the early days of HIV/AIDS in the U.S. Those infected with HIV are gaunt and have short life expectancies -- at one point in the movie, a physician states that 96 percent of those testing positive for HIV will die within six months. Popular culture often perpetuates these images: depictions of HIV positive individuals are often sickly gay men or people from Africa, framed in victimhood and vulnerability. But for those with access to ARVs, it can be a very different story. People with HIV who adhere to their ARV medications now have a life expectancy around 73.5 years, which compares well with 78.7 years for the general U.S. population. Don't get us wrong: we are well aware that there a millions of people living with HIV who do not have access to ARV medications, or for whom the adherence necessary to reap health rewards is problematic.

But for those who are living with, and therefore aging with, HIV, there is a new set of issues: people with HIV are developing diabetes, high blood pressure, high cholesterol, cancers, and heart disease, in addition to HIV-related infections. Additionally, people with HIV are prone to new conditions such as lipodystrophies (redistribution of fat pockets to uncommon locations on their bodies) that weren't described in the medical literature until the last two or three decades. With multiple conditions to manage, higher risks of experiencing side effects due to interactions between drug regimens for HIV and non-HIV conditions, and increased levels of mental health disorders such depression, anxiety, and substance abuse, people aging with HIV pose a serious medical care challenge.

Just as medical and public health responses had to evolve in the 1980s as the HIV epidemic unfolded in front of them, we are now faced with this next wave of medical challenges. HIV prevention efforts are largely dominated by the idea of "treatment as prevention" -- identifying those who are HIV positive through routine testing; linking them and retaining them in medical care; and treating them with ARV to achieve viral suppression (the point at which the HIV virus is not detectable, but is still present. (It is important to remember that ARVs are not a cure for HIV). To visualize gaps in HIV care in the U.S., Gardner developed a cascade of care for HIV illustrating that only 28 percent of those with HIV in the U.S. are currently achieving viral suppression. In response, our efforts have focused on expanding testing and coming up with innovations to keep people in care and on ARVs. While all of this is vital, the cascade stops at viral suppression. For those who achieve this, what models lie ahead for the management of their complex health issues?

The time to address these new challenges is now. Over the last few decades, scientists have warned that the aging U.S. population would lead to massive growth in health care costs. Quite predictably, we now have astronomical health care costs driven by those with multiple conditions (who tend to be mostly elderly). The long-term HIV infected will be the new "super-users" of health care in the near future. Aside from thinking about how to pay for this, we should also be thinking about whether our health systems have the capacity to care for these people. Medical specialties largely work in silos, creating fragmented care and adding to health care costs. Thinking about ways to integrate care -- involving multiple specialists and providers -- may be both more efficient and more effective in the long run. Those most affected by HIV are often those who are the most economically marginalized: economic conditions that are also known to be associated with the greatest burden of chronic disease. This poses another significant challenge, managing multiple complex conditions in a group often experiencing a lack of insurance or access to health care.

This World AIDS Day provides a critical opportunity to think about long-term management of HIV and chronic diseases in an aging HIV-positive population. New models of care management, new funding streams for testing these innovations, and a focus on care for HIV-positive people beyond viral suppression alone, are vital. To be clear, we are not arguing that this is more important than HIV prevention; preventive behavior change, the ongoing search for a cure, testing, and access to ARVs are all equally important in trying to eradicate HIV. But, there are approximately 76,000 13- to 24-year-olds living with HIV in the U.S. Now is the time to plan for effectively managing their health over the next 50 years as they continue to live with HIV.