Listen to an audio recording of this blog
There’s a saying that “what gets measured gets improved.” While that is often the case, we sometimes learn that, despite the efforts of many, the improvement desired isn’t achieved. This is certainly the case in our fight against HIV. The indicators used to monitor progress towards our nation’s HIV prevention, care, and treatment goals show that we’ve made important progress overall in reducing new HIV infections, improving health outcomes among people living with HIV, and reducing some HIV-related disparities. But, they also show that a great amount of work still needs to be done to ensure that this killer that has taken the lives of hundreds of thousands of Americans is no longer a threat to the survival of the men, women, and children in this country who are living with and at-risk for HIV infection.
The most recent National HIV/AIDS Strategy Progress Report (Dec. 2016) [PDF 1470 KB] provided an update on the 14 indicators being used to measure progress toward achieving our nation’s HIV prevention, care, and treatment goals and three developmental indicators. The report showed many important signs of progress; the annual targets were met for nine of the indicators. The indicators that improved over time were: decreasing new HIV infections; increasing the percentages of people living with HIV who are aware of their HIV status, linked to and retained in HIV medical care, and virally suppressed; reducing the death rate among people diagnosed with HIV; reducing disparities in new diagnoses among Black females; and increasing the percentage of youth and people who inject drugs in HIV medical care who are virally suppressed.
However, progress was not observed across all indicators. The most recent annual targets were not met and in some cases showed movement in the wrong direction for five of the indicators:
Reducing homelessness among people living with HIV;
Reducing disparities in HIV diagnoses among people living in the Southern United States;
Reducing disparities in HIV diagnoses among gay and bisexual men;
Reducing disparities in HIV diagnoses among young Black gay and bisexual men; and
Reducing HIV-risk behaviors among young gay and bisexual men.
(The remaining three indicators were developmental measures that reported for the first time in the December 2016 report. These new indicators measure progress on increasing viral suppression among transgender women, increasing the number of adults prescribed pre-exposure prophylaxis (PrEP), and decreasing stigma among persons diagnosed with HIV infection.)
Obviously, simply measuring progress on key indicators is not enough. We have to understand what is working, so that we can replicate it. We also have to recognize what is not working so we can re-reconsider the planning behind it and its implementation. We need to learn from our successes and from our efforts that have not delivered the desired results. Even when the indicators showed progress, there is still substantial room for improvements. In some cases, the improvements are not happening fast enough, and in others they are not reaching everyone equally. Some people and places are being left behind. As a result, some disparities are getting worse, the improvements that are taking place are not happening fast enough and/or are not reaching as many people as is needed, and sometimes are not reaching those in greatest need. This lack of progress is a concern to all of us, especially those of on the National HIV/AIDS Strategy Federal Implementation Workgroup (FIW), which Rich co-chairs.
NHAS Federal Implementation Workgroup
The FIW works to better coordinate, monitor, and advance Federal efforts toward achieving our national HIV goals. In order to determine why these indicators are not improving and what changes to programs, policies, services, and/or investments we can propose that could better move the indicators in the right direction, the FIW established three ad hoc subgroups:
1.) Homelessness among persons living with HIV (co-chaired by Amy Palilonis, Department of Housing and Urban Development, and Harold Phillips, Health Resources and Services Administration, HHS)
2.) HIV diagnoses in the Southern United States (co-chaired by Donna McCree, Centers for Disease Control and Prevention, HHS, and Steven Young, Health Resources and Services Administration, HHS)
3.) HIV-related disparities among gay and bisexual men (co-chaired by David Purcell, Centers for Disease Control and Prevention, HHS; Susannah Allison, National Institute of Mental Health, National Institutes of Health, HHS; and Timothy Harrison, Office of HIV/AIDS and Infectious Disease Policy, HHS. This subgroup is examining three of the indicators that are interrelated.)
Each of these subgroups is comprised of subject matter representatives from various Federal agencies that have a role in addressing each issue. Each group is reviewing available data from a variety of sources including the indicators, data from various Federal agencies, relevant research, and the action items from the NHAS Federal Action Plan [PDF 773KB]. They are using the data to create a plan that identifies the inputs and activities necessary to create short- and long-term changes in outcomes that have the potential to drive population-level impact. Part of this process includes determining what is already being done across the Federal government that works so that it can be scaled up and disseminated across other programs as well as determining what approaches do not show evidence of improving outcomes and recommending that those efforts be scaled back.
In developing their plans, the workgroups have been strongly encouraged to reach out to and engage with the community to obtain input on what others across the country have found to be successful strategies for addressing these three target populations.
Each of the groups has undertaken a slightly different approach to their assigned tasks. The subgroup on HIV diagnoses in the Southern United States, for example, took advantage of the CDC’s recent HIV in the South town hall meeting to hear more about the challenges and strategies for providing prevention, care, and treatment services to people living with and at risk for HIV in the South. Meanwhile, the subgroup on HIV-related disparities among gay and bisexual men, which Nate is a member of, held a full-day in-person meeting to review the data on drivers of the health disparities observed in the three indicators for gay and bisexual men and recommend solutions that lay the groundwork for the plan they are developing.
Simply measuring outcomes won’t lead to improvements. What truly matters is how we understand and respond to the data. Much of the progress achieved in our fight against HIV has been the result of monitoring the epidemic and responding by aligning resources with those populations and areas disproportionately impacted by the epidemic. Likewise, as we continue to monitor the NHAS indicators and other tools such as the continuum of care we must focus our efforts on areas where we do not see sufficient progress while sustaining and even expanding programs and activities that we know work. The work of these three ad hoc sub groups, reviewing the data and offering solutions for moving forward, is critical to realizing the vision and goals of the NHAS for all Americans.