HIV End the Epidemic in the South: The Importance of Measuring Progression to AIDS and Death

This is a historic moment for the HIV community. The availability of effective treatment and preventive care mean that significant reductions in new HIV transmission can be achieved. Recognizing this moment, many cities and states and the federal government have formally declared their goals for ending the HIV epidemic. The City of San Francisco, California, and New York State, early actors in this effort, are seeing significant reductions in new diagnoses. However, according to the most recent comparison, HIV was still the sixth highest cause of death for people aged 25 to 44 years (http://bit.ly/2XmZvSm), demonstrating the level of effort needed to reduce the effect of HIV on our communities.

The availability of effective treatment means that nearly all people living with HIV have the potential to live into old age.¹ Death at a younger age thus indicates a system failure: failure of the medical care system to help someone living with HIV to effectively access care, or failure of larger social systems and communities to help a friend or family member to effectively access care. By removing financial barriers, the Ryan White Care Act has supported access to care, so that disparities in engagement in care and viral suppression continue to be meaningful but small (in 2016, disparities between African Americans and Whites hovered around 10%).² By contrast, large disparities in death rates still exist (in 2016, African Americans were almost seven times more likely to die from HIV than were Whites).³

The South in general bears a disproportionate burden of HIV-related mortality; both AIDS diagnosis and death rates are higher in the South than in other regions of the country. Deaths of people with HIV residing in the South comprise more than half of deaths from HIV in the United States (53% in 2016), whereas only 44% of people living with HIV reside in the South.³ Death rates have declined since 2007 in the South, but the rate of decline is smaller than that observed in other regions, signaling that there are barriers to effective HIV care in the South. Because death rates should decrease for those receiving effective care, analysis of death rates by population characteristics will point us to needed improvements in care access.

Using surveillance data from Tennessee from 1996 to 2016 and accounting for year of diagnosis and age at diagnosis, Rebeiro et al. (p. 1266) identified higher rates of progression to AIDS and death among people with heterosexual sexual relations or injecting drug use identified as the most likely route of HIV infection. They also identified higher rates of AIDS and death among men and African Americans. By contrast to new diagnosis rates, which are much higher among young men who have sex with men (MSM) of color, outcomes of AIDS and death were less common for MSM; this is a tribute to community support for people living with HIV. In North Carolina, as in Tennessee, viral suppression is lower for people reporting heterosexual sexual relations and injecting drug use exposure than for MSM.⁴ Although both this analysis and national data demonstrate decreasing disparities in death rates, this finding directs our efforts at reducing the stigma of an HIV diagnosis and increasing community support for heterosexuals living with HIV as well as for MSM.

It is clear that the intersection of HIV infection and injecting drug use results in a heavy burden on people experiencing both. However, in North Carolina, our experience of controlling an outbreak of HIV in a rural community of people injecting drugs shows us that, with effective community support, sustained viral suppression can be achieved in this group.⁵ Indeed, effective HIV prevention efforts in New York City have resulted in low incidence of HIV among people who inject drugs and a goal of eliminating injecting-related transmission of HIV.⁶ These rural and urban successes are useful counterexamples to the Scott County, Indiana, HIV outbreak and remind us that it is possible to support, and plan for, good health among people who inject drugs.

In 2016, all-cause mortality among people diagnosed with AIDS was 46% higher than the rate of death from HIV itself (www.cdc.gov/hiv/pdf/library/slidesets/cdc-hiv-mortality-2016.pdf).This analysis (and Centers for Disease Control and Prevention surveillance reports) use all-cause mortality among people living with HIV to calculate death rates. Although this measure avoids issues with identifying death from HIV, it is affected by factors other than untreated HIV infection and by factors that will affect both HIV and other mortality, such as poverty and structural racism.⁷ If access to treatment improves and more people living with HIV die from non-HIV causes, such as cancer, use of all-cause mortality will begin to obscure HIV-specific outcomes. To avoid this, it may be appropriate to restrict future assessments to consider only death from HIV.

New diagnosis rates, linkage to care, and viral suppression are key measures for HIV End the Epidemic efforts. This analysis points to other measures, progression to AIDS and death, which are also key to understanding system failures and making needed changes. Higher rates of AIDS and death highlight the greater stigma and lower funding available for HIV care that characterize the South. These measures are important indicators and should remain at the top of our list for assessing efforts to end HIV in the United States.