According to Joseph Amon, PhD, director of Global Health in Drexel University’s Dornsife School of Public Health, who has spent decades researching the epidemic, the goal of ending the spread of HIV is truly within reach — but making and measuring progress toward this end will require addressing discriminatory laws and the stigma that continues to surround the epidemic.
Amon recently co-authored a pair of studies about how to track progress toward the goal of ending AIDS, writing about the ethics and human rights considerations around new tools to identify “hotspots” of HIV transmission and approaches to measuring the end of the epidemic.
In a recent interview with the Drexel News Blog, Amon explained that effective interventions to stop the spread of HIV require both efforts to change the social and political environment around the disease, as well as careful consideration of how we measure progress in containing the epidemic.
What exactly does “ending AIDS” mean? When international organizations, or U.S. presidents, talk about this, do they mean “eradication,” “epidemic control” or something else?
The World Health Organization has a very specific definition for “eradication” which refers to the “permanent” reduction to zero of a pathogen. We’ve only achieved that with smallpox to date, although there are programs seeking to eradicate polio and Guinea Worm that are very close to being successful.
For HIV/AIDS, the discussion has mainly been around achieving “control,” a less rigorous standard of reducing incidence, prevalence, morbidity, and/or mortality to very low levels. But the level required to achieve “control” is not specifically defined, and for a lot of people the term “epidemic control” reflects an outmoded approach to public health — a time when public health authorities could sweep in, impose quarantines or vaccinate people, and stop an epidemic in its tracks, as was done with smallpox.
With HIV, as with a lot of complex epidemics, such as Ebola, zika, or drug-overdose deaths, a top-down “epidemic control” approach is not just ineffective, it’s often counterproductive. Those kinds of approaches can drive people away from programs that are working to end the epidemic.
What’s needed is partnership with communities, gaining trust, respecting human rights and ensuring everyone has access to evidence-informed prevention and treatment services.
There is no cure yet for HIV. But if individuals at risk of HIV seek testing and, if positive, start treatment promptly, and are able to maintain an undetectable viral load, the possibility of HIV transmission can be dramatically cut.
Are terms that denote levels of progress still useful when it comes to epidemiology?
Understanding trends in relation to an epidemic are fundamental to epidemiology. Are things getting better or worse? What country is seeing the fastest rise in HIV infections and what country or countries are seeing dramatic drops? This is information we need to know, and information which donors – public and private – want to know as well.
But here again, a term like “epidemic control” can be misleading. HIV epidemics are dynamic and diverse. What does it mean that the HIV epidemic is under “control” at a national-level when that might only apply to one population group, one age range or one part of a country? If a country’s epidemiological metrics fall under a target set as “epidemic control,” will complacency set in and a rise will follow?
What sort of terms should we be using to talk about progress when it comes to complex epidemics like AIDS?
In our paper, we talk about “epidemic transition” as an alternative to “epidemic control” to avoid the implication of a top-down approach and to highlight the understanding that progress toward the end of the HIV epidemic is not going to happen in a simple, linear fashion.
There are a lot of examples of this complexity. In 2016 Thailand was certified free of perinatal transmission of HIV infection. Yet, HIV incidence in Thailand has risen steadily among MSM and transgender women. Data from Kenya show that 65 percent of all new HIV infections in the country occurred in only 9 of 47 counties. Canada’s Saskatchewan province has triple the HIV incidence of the rest of Canada, and 79 percent of people newly diagnosed are indigenous peoples.
We need progress measures, but if they are too simplistic they can do more harm than good.
How should we go about monitoring progress of complex epidemics, since it’s not linear?
Last year, there was a meeting of HIV experts in Switzerland to discuss how progress toward ending the HIV epidemic could be best measured. Different approaches were proposed: some very simple, some more complicated. I suggested that rather than a single indicator, such as incidence or a ratio (such as incidence: mortality), countries should present evidence of their progress in a more comprehensive fashion.
In the paper published in December, along with my co-authors, I identified five categories of indicators:
- Levels of coverage of key evidence-based prevention and treatment interventions
- Incidence and prevalence of HIV infection
- AIDS-related or all-cause mortality among people living with HIV
- Stigma and discrimination
- The legal and policy environment
We also proposed that all indicators should be broken down, whenever feasible, to fully reflect progress and challenges relating to all populations and locations in the national response. We suggested that the process of evaluating indicators of national progress should meaningfully involve people living with HIV and from key populations as an important part of data validation.
This approach would engage countries in a more thoughtful assessment both of their progress, but also of the potential stability and sustainability of their response, drawing upon the enabling environment that has been created to facilitate HIV programs.
So is “ending AIDS” actually a goal that’s within reach?
I think it is.
We now have effective medicine that can suppress the HIV virus so that it’s undetectable in the blood and unlikely to be transmitted. And we also have a drug that can prevent people at risk of infection from contracting the virus.
While many people could still have the virus, if they are getting treatment they are less likely to have any negative consequence or develop the disease.
With these treatments, in combination with other proven prevention strategies, such as needle and syringe exchanges, I believe ending HIV is truly within reach.
I’m pleased to see the president has this on his list of priorities. But all of this still hinges on removing the stigma surrounding HIV/AIDS that persists here and abroad and ending discriminatory laws and policies.
How has that stigma made it difficult to control the HIV/AIDS epidemic?
We know what we need to do to end the epidemic. We have proven prevention approaches and effective drugs. But discrimination and stigma are barriers to reaching everyone we need to reach.
For example, in some countries there are punitive laws targeting sex workers, men who have sex with men and transgender individuals, and people who use drugs. The result is that people are concerned about getting tested and getting treated, or taking pre-exposure prophylaxis, because of fears of discrimination, violence and violations of confidentiality for being positive. In the U.S., undocumented immigrants might have little access to medical care and fears of deportation accessing prevention programs.
It is not a coincidence that HIV rates are highest in populations that are often stigmatized. Where discriminatory laws deny individuals basic rights, HIV will spread. At the start of the epidemic in the U.S., although there was no evidence of airborne or casual infection, the police demanded protection from contact with HIV-positive individuals; HIV-positive children were barred from attending public school; and HIV-positive individuals were evicted from their homes.
Nearly 40 years after the CDC first reported on AIDS, stigma and discrimination continues.
If public health interventions are constrained by ideology and tainted by stigma, they’ll fail. In the U.S. we are continuing to see high rates of HIV in minority communities in the South, among people who inject drugs and can’t access needle and syringe exchange and among transgender women.
Stigma and discrimination both cause vulnerability to infection — through punitive drug laws or job discrimination, for example — and barriers to treatment, such as the rejection of Medicaid expansion in some states.
The same is true globally. There are lots of examples I could provide here, but take Tanzania for one. Until recently the country’s response to HIV was considered one of the most effective and inclusive in sub-Saharan Africa. Between 2000 and 2016, new HIV infections in the country decreased by more than half. Coverage of ARV therapy increased from 18 percent to 62 percent, and AIDS-related deaths declined from 120,000 in 2005 to fewer than 34,000 in 2016.
However, with a change of government, there has been a swift increase in stigmatization of some of those groups at risk for HIV. This was followed by cuts in funding for HIV prevention services, such as lubricants for gay men and men who have sex with men, as well as needle exchange for people who inject drugs. Nongovernmental organizations and community leaders working with these populations have also been harassed and arrested.
How do organizations working on HIV exert pressure to eliminate political stigmatization, or criminalization, of the disease and behaviors that are risk factors?
It is not simple to convince countries to abandon laws grounded in deep-seated prejudice, which can be good politics. But governments can be pragmatic, and they can reform laws and policies when they see that they are counterproductive to achieving their public health goals – goals that are also tracked globally, for example as a part of the sustainable development goals.
They can also see the experience of neighboring countries where reforms might not cause the apocalyptic consequences that are sometimes proclaimed.
Money also talks. Sometimes donors have indicated that they have no interest in funding the government to run HIV programs while regressive laws are in place that restrict any possibility of progress.
How has media coverage of the HIV/AIDS epidemic and public health efforts to address it affected the public’s perception of the disease and its prevalence today?
Media coverage can further stigmatize or combat it. In some ways, it was the arts in the U.S. that humanized the disease and those affected by it. I remember seeing the AIDS quilt on the National Mall in Washington, D.C. and being overwhelmed. Essentially, the quilt did what the media should do – reveal the stories of individuals affected, demonstrate the immense collective loss, and ask, “how could we have let this happen?”
Amon is director of the Office of Global Health and a clinical professor in the Department of Community Health and Prevention at the Dornsife School of Public Health. He is a member of the Strategic and Technical Advisory Group of UNAIDS and co-chair of the organization’s Reference Group on HIV and Human Rights. He is also a member of a working group on monitoring and evaluation at the Global Fund and has served on several WHO advisory committees related to ethics and human rights.
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