Since the earliest days of the HIV/AIDS epidemic, the United States has invested in programs and research to fight HIV/AIDS. While there has been significant progress and work done, the HIV infection rate in the United States has failed to sufficiently decline, and many of the goals and objectives of the first National HIV/AIDS Strategy (NHAS) were not achieved within the established 5-year time frame. Meeting the goals and objectives of the NHAS update and extension to 2020 (NHAS 2020) requires a coordinated effort by all stakeholders. Much has been learned in the years since the introduction of the NHAS, and we must continue to aggressively address the challenges encountered. It is only through coordinated cooperation among federal agencies that we can begin to remedy the structural barriers that keep many from accessing and remaining in care and from achieving equitable health outcomes. To achieve an HIV/AIDS-free generation, APHA sets forth a series of recommendations, based on the most current science and shared by other advocacy groups, that can be used to advance specific policies or provisions toward the continued improvement of the NHAS and the accomplishment of the goals it sets. These recommendations range from research agenda setting to funding of allocation principles, retention of local jurisdictional autonomy, elimination of disparities, and ways in which the Ryan White Comprehensive AIDS Resources Emergency Act can be structured to meet new and ongoing needs in a post–Affordable Care Act society.
Relationship to Existing APHA Policy Statements
- APHA Policy Statement 201413: Strengthening the National HIV AIDS Strategy to Achieve an HIV AIDS Free Generation (archived policy statement)
- APHA Policy Statement 20012: Reducing Maternal-Fetal HIV Transmission with Rapid HIV Tests
- APHA Policy Statement 20033: The Importance of Prevention Efforts with HIV-Positive Individuals Receiving Clinical Care
For more than 30 years, the United States has invested in scientific programs and research to stop the spread of HIV/AIDS. Public health programs, researchers, and advocates alike have worked together to change a fatal diagnosis into a chronic and manageable disease. These efforts have significantly decreased the number of people dying from HIV-related causes. By some estimates, efforts over the past 15 years have averted 350,000 infections, which translates into a savings of $125 billion in medical costs. This achievement reinforces the need for and success of close collaborations among public health departments, health care systems, community-based organizations, the health care industry, and persons living with HIV to ensure access to prevention, care, and treatment services, particularly among low-income, marginalized, and otherwise vulnerable populations. It further demonstrates what can be achieved through comprehensive and organized approaches to addressing HIV/AIDS and exemplifies the need for a continuation of these approaches in a time of fiscal insecurity for public health initiatives and tightening budgets all around.
The American Public Health Association has long recognized the importance of comprehensive, coordinated scientific efforts in disease prevention, surveillance, testing, treatment, and reduction of health disparities (see, for example, APHA Policy Statements 20012, 20005, 20015, 2004-10, 2005-10, and 201116), yet HIV/AIDS continues to present a major public health challenge. The most recent surveillance data from the Centers for Disease Control and Prevention (CDC) indicate that approximately 1.1 to 1.2 million people in the United States are living with HIV/AIDS and that nearly 13% of these individuals do not know they are infected. Each year, an additional 50,000 (approximately) people become infected with HIV, an infection rate that had been steady for more than a decade but is recently beginning to decline.[3–5] Men who have sex with men (MSM), regardless of self-identified orientation or identity, have historically accounted for the largest number of new HIV infections, and they accounted for more than 67% of new infections in 2014. During the period from 2010 to 2014, this group saw an increase in new cases despite decreases for other demographic groups, representing growth in this disparity. Racial and ethnic disparities also persist in disease incidence and prevalence as well as access to treatment and drugs. Between 2010 and 2014, African Americans accounted for 44% of new infections. During the same period, Hispanics/Latinos accounted for 23% of new infections, while Whites accounted for 27%. The authors of a 2016 CDC study noted that if current HIV infection rates continue, approximately half of all Black MSM and a quarter of all Latino MSM will be diagnosed with HIV in their lifetimes. When viewed from overall percentages of the population, minority communities share a disproportionate burden of new HIV infections and HIV prevalence.
In July 2010, the White House released the country’s first five-year National HIV/AIDS Strategy (NHAS), which provided a general framework for addressing HIV/AIDS within the United States and set forth a vision that “the United States will become a place where new HIV infections are rare and when they do occur, every person, regardless of age, gender, race/ethnicity, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.” To achieve this vision, the NHAS created four goals: (1) reducing new HIV infections, (2) increasing access to care and improving health outcomes for people living with HIV, (3) reducing HIV-related disparities and health inequities, and (4) achieving a more coordinated national response to the HIV epidemic. The NHAS also identified specific objectives to measure achievement.
In July 2013, President Obama signed Executive Order 13649, which sought to accelerate improvements in HIV prevention and care based on data made available subsequent to the release of the NHAS and, in so doing, demonstrate the possibility of updating and improving the NHAS as new discoveries and information become available. These data describe populations on a continuum comprising seven HIV/AIDS stages: infected, diagnosed, linked to care, retained in care, needing antiretroviral therapy, adhering to antiretroviral activity, and achieving viral suppression. This framework of assessing the movement of populations through the stages of disease acquisition and control is known as the HIV care continuum. Current CDC data related to this framework show that only 30% of people living with HIV in the United States are virally suppressed, demonstrating that 70% of those who have been diagnosed have not been supported in the necessary manner to navigate the existing system.
These CDC data also highlight disparities by race and age. For example, African Americans and younger Americans (25–34 years of age) are least likely to be retained in care or to have their viral load under control. Interestingly, while viral suppression improves with age, individuals older than 65 years exhibit a significant drop in the percentage with controlled viral loads. Executive Order 13649 called for an HIV care continuum working group headed by the Office of National AIDS Policy, with a prescribed membership of six federal agencies (and others at the option of the chair) and a 6-month mission to report on the progress of efforts to create a seamless and consistent continuum. While this continuum framework can help align efforts, comprehensive data must be available to maximize its usefulness in efficiently and effectively managing HIV infections. At present, national numbers are based on localized sample data sets and meta-analyses. Some states do not have data beyond the second or third stage of the continuum, and owing to wide variances in state and local surveillance systems, few states have data on individuals who are incarcerated or undocumented. Accurate and complete data at the state and characteristic levels continue to be vital in identifying areas of special need, guiding investments and interventions, and ultimately addressing HIV-related disparities. The NHAS cannot be effective unless it ensures that proper, accurate, and updated information is available to respond to the needs, challenges, and issues of affected populations.
In July 2015, the White House released an update to the NHAS, extending its goals to the year 2020. The update maintained the original four pillars, but with new steps and recommendations nested within these overarching themes. These additions were the result of a collaboration involving the Federal Interagency Working Group on the Intersection of HIV/AIDS, Violence against Women and Girls, and Gender Related Health Disparities, established in a presidential memorandum on March 30, 2012, and the HIV Care Continuum Initiative created by Executive Order 13649. Among these amendments were measures to protect the health of women and girls from intimate partner violence and other traumas and additional direction to improve cultural competency, battle stigma, and improve data collection, data dissemination, and research initiatives. Many of the alterations to the NHAS reflected recommendations from the previous iteration of the policy, indicating an excellent degree of responsiveness by policymakers, particularly within the time allotted. Appreciation should be given to the improved collaboration among federal agencies and the increased attention to structural barriers such as homelessness.
With these new steps came a revised list of 10 indicators that will be used to measure the success of the NHAS 2020 over the coming years. Some of these indicators are simply revised versions from the original NHAS, modified to reflect the current climate and to ensure that they are inclusive of all people living with HIV. Indicator 4, for example, endeavors to increase the percentage of newly diagnosed individuals linked to HIV health care within 1 month of their diagnosis to at least 85%. By contrast, the original NHAS framework cited a goal of increasing the percentage of those linked to care within 3 months to 85%. Other indicators are new and represent considerations not included in the original NHAS (e.g., Indicator 8, which focuses on reducing the death rate among those diagnosed with HIV by at least 33%) or departures from earlier ways of thinking; this is particularly the case in the area of health disparities, with additional considerations given to MSM, youths, and people who inject drugs. For example, whereas the original NHAS sought only to increase the numbers of Blacks, Latinos, and MSM with undetectable viral loads, the NHAS 2020 measures include reducing disparities in rates of new diagnoses, reducing engagement in HIV-risk behaviors, and, more globally, increasing rates of viral suppression. Continuing to evolve the ways we measure successes and areas for improvement, regularly revisiting and redefining the problem at hand, is critical. With improved measures, however, comes an ever-increasing need for more comprehensive and quality data sources with which to gauge progress.
The NHAS 2020 also identifies three areas as priorities for future indicators (preexposure prophylaxis, stigma, and HIV among transgender persons), and innovations that occurred within the life cycle of the original NHAS will become important tools and key areas of focus in the years ahead. Preexposure prophylaxis has been integrated in many areas of the strategy, including calls for continued research. The previous version of this APHA strategy noted pilot studies and continued research into preexposure prophylaxis as positive steps, and the responsiveness of the NHAS 2020 authors in continually embracing new resources as they become available is a good sign. Other positive steps include CDC prevention grants for health departments, in which high-impact prevention is mandated while local jurisdictions retain autonomy to use other interventions as appropriate to their needs, and for community-based organizations; the latter grants help organizations deliver effective HIV prevention strategies aimed at reducing disparities due to racial, ethnic, or LGBTQ (lesbian, gay, bisexual, transgender, queer) status; improve access to prevention and support services such as preexposure and postexposure prophylaxis; and promote overall health equity in community settings.
Similar to its previous incarnation, the NHAS 2020 provides a broad contextual framework to address these goals. In doing so, it seeks to address health disparities as one of four cornerstones. While there has been some progress, many of the NHAS 2010–2015 goals and objectives have not been met. For example, health disparities remain a key indicator of HIV infection. Furthermore, despite the goals of the original NHAS, the overall HIV infection rate in the United States has failed to sufficiently decline. More work and continual updates to the strategy are needed to achieve the vision set forth in the NHAS 2020.
The evidence with respect to the issues discussed above is not in dispute. Data are consistent across governmental and private entities. This policy seeks to put forth science-based recommendations through a public health lens for the next generation of the NHAS. It is intended to supplement the existing NHAS rather than to supplant the goals and framework already established. The current NHAS is set to expire in June 2020, and this policy will contribute to the creation of the next strategy.
Debate is ongoing, however, on how best to allocate investments for the HIV response within a limited federal budget. Arguments will be made that the HIV care and prevention system was operating successfully and that the newly available funds resulting from the Affordable Care Act (ACA) and cost shifting should be invested in other programs that have recognized needs or have incurred reductions owing to sequestration. There has been an argument for many years known as AIDS exceptionalism. This argument, used by many politicians, posits that AIDS funding is more robust and offers more services than any other disease-specific funding for care services. As such, funding is not equitable for those who are not living with HIV but may be living with other chronic and serious illnesses. The response is a reminder that HIV/AIDS is the only communicable disease that can be sexually transmitted, has no vaccine, is likely fatal if not treated, and has no cure. Added to that is the element of stigma endured by HIV patients.
There will also be opposition from those who, as a result of their religious or moral beliefs, perceive HIV as something more than simply a viral infection. Many who make such arguments also attempt to stigmatize the most affected populations. Without any scientific basis to their claims, these claims cannot be addressed.
Evidence-Based Strategies to Address the Problem
Ultimately, the ability of the United States to achieve the vision set forth in the NHAS 2020 and any subsequent revisions will be contingent upon sustained efforts to maximize access to prevention, care, and treatment services, including programs supported by the US Department of Health and Human Services (Ryan White HIV/AIDS Program) and CDC’s Division of HIV/AIDS Prevention as well as funding through agencies such as the Centers for Medicare and Medicaid Services, the US Department of Housing and Urban Development, the National Institutes of Health, and the Department of Veterans Affairs. Community input and local self-determination remain critical. We must redouble our efforts to leverage past successes and invest in a new future to create an HIV/AIDS-free generation.
Funding is a necessary component to achieve progress. A 2012 economic analysis of the original NHAS showed that an additional $15 billion would have been needed immediately if the objectives of the NHAS were to be achieved within the time frame established. While a large portion of that cost will now be covered through the ACA and through Medicaid expansion in some states, there will still be a need for significant investment in the Ryan White HIV/AIDS Program and other Department of Health and Human Services programs if the original objectives of the NHAS are to be met across all states.
A central part of the NHAS, the Ryan White HIV/AIDS Program represents the largest pool of discretionary funding for HIV care, and this funding has remained level despite a 33% increase in demand for services.[19,20] Despite the cost shifting of primary health care funds out of the Ryan White program and into Medicaid, the program will need increased funding to meet new demands. Nineteen states have not expanded Medicaid, and other individuals, such as those who are undocumented, do not qualify for coverage under the ACA. The Ryan White program must continue to provide primary health care as well as wrap-around services for Medicaid beneficiaries who have additional needs that are not covered. However, there are new areas that require investment, such as training the clinical workforce in HIV treatment and cultural competency appropriate to the multiple populations affected by the disease. Investments in interventions and training of clinical personnel and clinic administrators must be made to begin to eliminate institutionalized phobia related to HIV, which leads to stigma and prevents many from seeking treatment.
National health care reform is still in the process of implementation, and we exist in a period of transition, adjustment, and stabilization as new systems are developed, older systems are readjusted, and the responsiveness of service models is established. Many of the changes under way are a direct result of the Affordable Care Act, and improved access to care and prevention, both cornerstones of the reform, are expected to help reduce the number of new infections. One study showed that jurisdictions implementing multiple strategies, including improvements in access to care and individual-level interventions addressing a variety of barriers (including structural barriers), have greater success in retaining individuals in care.
Executive Order 13649 reinforces the need for interagency cooperation, as originally outlined in the NHAS framework. Coordinated cooperation among various federal agencies can begin to address and remedy the structural barriers that keep many from accessing and remaining in care and achieving equitable health outcomes. In addition, research is needed on how to invest wisely in the types of interventions and community efforts necessary to advance populations from one stage to the next along the continuum. The concept of implementation science, put forth by prominent advocacy think tanks such as the Treatment Action Group, could help define and establish priority issues for research. For example, there is a need to quantify the continued value of behavioral interventions and to design studies measuring optimal integration of behavioral and biomedical approaches. Such research would also include projects designed to understand motivators that increase demand for services and help retain people in care, the populations most in need, and the structural barriers that most interfere with care retention. Implementation science, in short, would provide a means of identifying the areas in need of most attention and the funding and resources that would lead to the most meaningful and significant changes at the population level.
Preliminary results of the first NHAS have been encouraging. Of the 13 annual targets set in 2013 for the original strategy, nine have been met, and there has been progress in the expected direction on another indicator. In a study of the strategy’s impact published in July 2016, the authors estimated a net decrease of 11.1% in HIV incidence and a 17.4% net decrease in the HIV transmission rate, as well as a reduction in all-cause mortality; however, they noted that this progress is insufficient and that increased effort is required. These early incremental successes represent an important step toward the long-term goal of the NHAS. A 2016 modeling study showed that the achievement of all NHAS targets (projected to 2025) resulted in a 58% reduction in new infections (if current trends continue, a projected 524,000 new infections) and 128,000 lives saved at a cost of $105 billion, further indicating a need for continued funding. Likewise, a CDC study presented at the Conference on Retroviruses and Opportunistic Infections in 2016 projected that meeting HIV testing and treatment targets and expanding the use of daily preexposure prophylaxis would prevent 70% of new infections (an estimated 185,000 infections) by 2020. These studies underscore both the potential of the NHAS to relieve the national burden of HIV and the continued need to foster an environment in which the strategy can succeed.
This policy statement demonstrates APHA’s firm support for an HIV/AIDS-free generation and proper, equitable care for those already infected through revisions to the NHAS. As a means of fulfilling these aims, APHA:
- Urges Congress to fully fund the Office of National AIDS Policy to revise, implement, monitor, and evaluate the NHAS 2020 action plan.
- Urges the US Department of Health and Human Services and its member agencies to create an HIV research agenda based on the principles of implementation science to clearly establish priority issues for further research and funding.
- Urges the Centers for Disease Control and Prevention, state and local health departments, and private health insurers to improve their data collection efforts to provide for comprehensive local, state, and population characteristic profiles under the care continuum framework with the goal of both improving surveillance and increasing the quality of evidence-based research to achieve the goals of the NHAS.[11,27]
- Urges the US Department of Health and Human Services, specifically the Health Resources and Services Administration and the Centers for Disease Control and Prevention, to continue and increase its investment in evidence-based, high-impact prevention efforts, especially among those who are HIV positive. The aim is to ensure that viral loads are fully suppressed, which is the ultimate goal of the continuum of care.
- Encourages Congress (through the Ryan White Comprehensive AIDS Resources Emergency Act and its periodic reauthorizations), as well as the Health Resources and Services Administration and the Centers for Disease Control and Prevention, to continue to support local autonomy and local decision-making mechanisms as a means of maintaining proper responsiveness to individual jurisdictions.
- Urges Congress to fully fund the Ryan White HIV/AIDS Program as part of the federal government’s HIV prevention-focused programs and implement flexibility in funding formulas to better reach the most marginalized populations. To best achieve this goal, it is suggested that the Ryan White program:
o Provide for and permit expenditures for the resources and capacity building needed to integrate HIV care expertise into the mainstream health care system.
o Provide support to help expand and develop the HIV clinical workforce.
o Retain the AIDS Drug Assistance Program as a critically needed initiative providing coverage that includes a robust minimum drug formulary, medications used to treat common comorbid conditions, and liberal income eligibility criteria.
- Urges public health and health care communities to organize and work with multisectoral coalitions (consumers, government, businesses, and nonprofit agencies) to reduce individual and structural barriers to HIV/AIDS prevention and treatment (e.g., lack of housing and lack of access to food and nutrition services), promote the dissemination of accurate health information, and advocate for the right of vulnerable populations and communities to informed health decision making.
1. Centers for Disease Control and Prevention. HIV in the United States. Available at: http://www.cdc.gov/hiv/statistics/basics/ataglance.html. Accessed November 28, 2016.
2. Centers for Disease Control and Prevention. HIV prevention in the United States at a critical crossroads: the status of HIV prevention in the United States. Available at: https://knxup2.hsdl.org/?view&did=33921. Accessed November 28, 2016.
3. Centers for Disease Control and Prevention. New hope for stopping HIV. Available at: http://www.cdc.gov/vitalsigns/hivtesting. Accessed November 28, 2016.
4. Centers for Disease Control and Prevention. National HIV prevention progress report. Available at: http://www.cdc.gov/hiv/pdf/policies/progressreports/cdc-hiv-nationalprogressreport.pdf. Accessed November 28, 2016.
5. Centers for Disease Control and Prevention. HIV in the United States: at a glance. Available at: http://www.cdc.gov/hiv/statistics/overview/ataglance.html. Accessed November 28, 2016.
6. Centers for Disease Control and Prevention. HIV surveillance report, 2014. Available at: http://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-report-us.pdf. Accessed November 28, 2016.
7. Centers for Disease Control and Prevention. Lifetime risk of HIV diagnosis. Available at: http://www.cdc.gov/nchhstp/newsroom/2016/croi-press-release-risk.html. Accessed November 28, 2016.
8. Centers for Disease Control and Prevention. HIV/AIDS surveillance by race/ethnicity. Available at: http://www.cdc.gov/hiv/pdf/library/slidesets/cdc-hiv-surveillance-race-ethnicity.pdf. Accessed November 28, 2016.
9. White House Office of National AIDS Policy. National HIV/AIDS Strategy. Available at: https://www.aids.gov/federal-resources/national-hiv-aids-strategy/nhas.pdf. Accessed November 28, 2016.
10. Executive Order No. 13649, 78 FR 43057 (2013).
11. Centers for Disease Control and Prevention. HIV stages of care fact sheet. Available at: http://www.cdc.gov/nchhstp/newsroom/docs/HIV-Stages-of-Care-Factsheet-508.pdf. Accessed November 28, 2016.
12. US Department of Health and Human Services. HIV/AIDS continuum. Available at: https://www.aids.gov/federal-resources/policies/care-continuum/. Accessed November 28, 2016.
13. Thompson M. Creating a continuum of care: the HIV treatment cascade in the U.S. Paper presented at: Revitalizing the U.S. National HIV/AIDS Strategy Meeting, December 2012, Washington, DC.
14. White House Office of National AIDS Policy. National HIV/AIDS Strategy update. Available at: https://www.aids.gov/federal-resources/national-hiv-aids-strategy/nhas-update.pdf. Accessed November 28, 2016.
15. White House Office of the Press Secretary. Establishing a working group on the intersection of HIV/AIDS, violence against women and girls, and gender-related health disparities. Available at: https://www.whitehouse.gov/the-press-office/2012/03/30/presidential-memorandum-establishing-working-group-intersection-hivaids-. Accessed November 28, 2016.
16. Centers for Disease Control and Prevention. Comprehensive HIV prevention programs for health departments. Available at: http://www.cdc.gov/hiv/programresources/healthdepartments/index.html. Accessed November 28, 2016.
17. Centers for Disease Control and Prevention. Community-based organization awards for HIV prevention. Available at: http://www.cdc.gov/nchhstp/newsroom/2015/cbo-foa-awards-press-release.html. Accessed November 28, 2016.
18. Holtgrave DR, Hall HI, Wehrmeyer L, Maulsby C. Costs, consequences, and feasibility of strategies for achieving the goals of the National HIV/AIDS Strategy in the United States: a closing window for success? AIDS Behav. 2012;16:1365–1372.
19. Crowley JS, Kates J. Updating the Ryan White HIV/AIDS Program for a New Era: Key Issues and Questions for the Future. Menlo Park, CA: Henry J. Kaiser Family Foundation; 2013.
20. Health Resources and Services Administration. Ryan White HIV/AIDS Program funding. Available at: http://hab.hrsa.gov/data/reports/funding.html. Accessed November 28, 2016.
21. Gallant JE, Adimora AA, Carmichael JK, et al. Essential components of effective HIV care: a policy paper of the HIV Medicine Association of the Infectious Diseases Society of America and the Ryan White Medical Providers Coalition. Clin Infect Dis. 2011;53:1043–1050.
22. Higa DH, Marks G, Crepaz N, Liau A, Lyles CM. Interventions to improve retention in HIV primary care: a systematic review of US studies. Curr HIV/AIDS Rep. 2012;9:313–325.
23. Revitalizing the U.S. National HIV/AIDS Strategy: Action Plan. New York, NY: Treatment Action Group; 2013.
24. Bonacci RA, Holtgrave DR. Evaluating the impact of the US National HIV/AIDS Strategy, 2010–2015. AIDS Behav. 2016;20:1383–1389.
25. Shah M, Perry A, Risher K, et al. Effect of the US National HIV/AIDS Strategy targets for improved HIV care engagement: a modeling study. Lancet HIV. 2016;3:e140–e146.
26. Centers for Disease Control and Prevention. HIV Prevention Modeling Study. Available at: http://www.cdc.gov/nchhstp/newsroom/2016/croi-press-release-prevention.html. Accessed November 28, 2016.
27. National HIV/AIDS Strategy: Implementation Progress Report. Washington, DC: US Department of Health and Human Services; 2012.