HIV and Social Drivers
The nine items completing that opening phrase "AIDS Will Only End When ..." are the kinds of things that Housing Works President & CEO Charles King is referring to when he says we will only end AIDS when we address the social drivers of the disease.
What does that mean exactly? In brief, it means that while living a healthy, productive life with HIV is possible when people have been tested and diagnosed, and then begin and maintain an effective treatment regimen, we face many challenges and obstacles in addressing and closing the HIV treatment gap (i.e., why the disease continues to spread worldwide and why so many people either are unaware they have HIV or are unable to get and remain on effective treatment).
Social drivers are the social forces beyond the virus itself, such as poverty, homelessness, joblessness, gender inequality, LGBT discrimination, transphobia, and human-rights violations, that influence HIV transmission and promote the spread of the epidemic.
To break that down further:
People with HIV cannot go on and maintain effective treatment if they don't know they have HIV to begin with. And today most people living with HIV outside wealthy countries don't know their viral load -- the level of HIV detectable in the blood -- and too many do not have the treatment they need to control the virus. All too often this is because they do not even have access to testing.
When people live under the threat of being shamed, discriminated against, arrested, assaulted, or killed -- whether that is because of who they are, who they love, how they make their living, because they are open about their HIV-positive status, or because they have the misfortune to live in a chaotic place besieged by regular danger and violence for other reasons -- they are less likely to get tested for HIV and into treatment.
It is for these very reasons that Housing Works and other AIDS advocates staged an action on the first day of the International AIDS Conference (AIDS 2014) a few days ago, demanding that leaders across the world commit to a goal of all people living with HIV achieving and maintaining an undetectable viral load by the year 2020.
HIV stigma falls under the larger category of social drivers above, but is so prevalent and has such a strong ongoing impact on the AIDS epidemic across the globe that it warrants its own commentary and analysis.
Housing Works President and CEO Charles King has said it many times and in many ways: From New York State, where marriage equality is the law of the land and which recently made history with the Governor's declaration to end the AIDS epidemic in the state by 2020, to Nigeria, where gay marriage and same-sex relationships are illegal and punishable by up to 14 years in prison, stigma remains the biggest driver of the AIDS epidemic.
A case in point: Stigma is a major reason that use of PrEP as an HIV prevention strategy remains controversial, as evidenced by the coining of the slur "Truvada whore."
HIV stigma refers to the spectrum of discrimination -- from prejudice and negative attitudes to abuse and mistreatment -- directed at and experienced by people living with HIV and AIDS. In the early days of HIV, it was believed that most stigma stemmed from ignorance and fear -- an ignorance about how HIV is and is not transmitted and a fear of contracting HIV, which was a virtual death sentence before the advent of antiretroviral medications in the mid-1990s. (In those early years, diagnosis of HIV usually took place only when HIV-positive people got sick, became symptomatic, and the virus had progressed to AIDS. Treatments at that time were few and far between, and often expensive and ineffective.) However, despite all the leaps and bounds in prevention, testing, in the medical treatment arena, and even in HIV education, HIV stigma remains a primary driver of the epidemic. How stigma shows up varies widely across nations, different communities, religions, and cultures and can manifest itself in many forms: everything from rejection by family, friends, peers, colleagues, and the wider community to mistreatment in the workplace and in health-care settings to verbal abuse to threats to physical assaults to criminalization. Likewise, the factors that may contribute to HIV stigma will vary from place to place and person to person. In addition to the aforementioned factors (it being a potentially life-threatening disease and the persistence of a lot of misinformation about the virus), stigma may have its sources in any of the following:
- HIV is associated with homosexual behavior, drug addiction, sex work, and promiscuity, all behaviors that are already judged and stigmatized in many communities.
- Most people become HIV-positive through sex. Sex itself -- who is having it, who is sleeping with who, and when, why, how, and how often people are having it -- is associated with a seemingly endless range of judgments in most communities.
- Because of the two factors above, many people regard HIV as being the result of personal irresponsibility and therefore, that the people who have HIV deserve to have it and deserve to be ill because they brought it upon themselves.
- Some religious or moral belief systems expand on that judgment of those with HIV and teach their proponents that HIV infection results from moral faults and flaws that warrant punishment, such as "deviant" sex, sex work, promiscuous behavior, or drug use.
- HIV stigma often works in tandem with other common types of discrimination, such as racism, misogyny, homophobia, and transphobia.
Irrespective of its forms, what all HIV stigma has in common is the damage it does -- not only to the mental state of people living with HIV, who either feel perpetually beaten down, under threat, or in physical danger on a constant basis, but also on the success of HIV testing and treatment. United Nations Secretary General Kan Bi-moon summed up the massive blow stigma deals to us all as follows:
"One of the biggest hurdles for our global response to AIDS is psychological. ... Stigma remains the single most important barrier to public action. It is the main reason too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason the AIDS epidemic continues to devastate societies around the world."
Other Social Drivers of HIV
Even once people are diagnosed, getting into care, beginning a treatment regimen, and maintaining treatment consistently over time comes with its own difficulties, and the list of challenges grows as a result of the other social drivers of the disease, which include poverty, homelessness, unemployment, mental illness, and substance abuse.
People who are poor, homeless, jobless, or all three do not always have access to affordable, regular health care. Maintaining HIV treatment on a consistent basis becomes a lot more difficult when the major pillars that support a stable life are shaky or not there at all. Imagine having to choose between feeding yourself and your family and paying for your HIV medications. Imagine trying to stay on HIV treatment and work with doctors to monitor your care when you don't know whether you will have a roof over your head that night.
Add in additional challenges like being part of a marginalized and/or at-risk population -- men who have sex with men, transgender women, people of color, sex workers, people with mental illness or substance abuse problems -- and the chances of becoming infected with HIV are much higher, as are the number of obstacles involved in getting tested, treated, and staying healthy.
All of these social drivers affect people's abilities to get tested for HIV, have access to care, and get on and stay on effective treatment.
We call them social drivers because although they do not medically/physically spread the HIV virus in and of themselves, they are among the major reasons so many people are in and out of medical care and therefore are inconsistent in continuing treatment. As a result, they account for the big gap between the number of people who know they are HIV-positive and the number of people who have an undetectable viral load.
Being an Undetectable: What It Is and Why It Matters
As this post was being written, someone on Facebook commented on the photo and asked: "What exactly is undetectable viral load?"
This important question is a reminder that being "undetectable" is a relatively new idea in the grand scheme of an epidemic that has plagued us worldwide for more than 30 years. To those at the heart of the fight to end AIDS, the notion of "undetectable" (also called viral suppression) is not new, and therefore it is easy to forget that a significant swath of the general public doesn't know what it means much less why it matters. It also underscores that one of our ongoing challenges is keeping all people, whether they are HIV-positive or HIV-negative, well-educated and informed not only about the basics of HIV prevention, testing, and transmission, but also about the many advancements being made in data collection and sharing, in testing, in treatment, and in expanding accessibility to all those things.
Here's the current answer to that question asking for a definition of "undetectable viral load":
Viral load refers to the level of HIV in the blood of someone who has HIV and can be assessed via viral load testing, which measures the number of copies of HIV RNA per milliliter (ml). For HIV-positive persons, reaching an undetectable viral load is one of the key goals of HIV treatment. "Undetectable" HIV is generally defined as having fewer than 50 copies/ml in a blood sample.
The reasons being undetectable is a major goal if you are HIV-positive:
- When HIV-positive people are undetectable, chances are high they will remain at optimal health and chance are low that they will develop any resistance to their anti-HIV medications.
- A lot of scientific research and evidence mounted in recent years -- and many of these studies are ongoing -- indicates that undetectable HIV-positive individuals are virtually unable to transmit HIV to anyone else.
In essence, effective treatment is win-win for everyone, both HIV-positive and HIV-negative persons.
The call in the graphic that opens this blogpost for leaders to commit to helping HIV-positive people become undetectable stems from this challenge: While a ton of progress has been made in the biomedical arena and in making HIV testing and treatment more accessible, we have a lot of work to do in getting more HIV-positive people to be undetectable. Even in the United States, a wealthy country where HIV is regarded by many to be manageable and under control, for example, of the 1.1 million people living with HIV, 902,000 know they have HIV (82%), but only 275,000 (25%) are undetectable.
The flip side to effective treatment being win-win is that ineffective or inconsistent treatment is a lose-lose game for everyone, too. It means HIV-positive people are more likely to get sick and that the risk of them transmitting HIV to other people is much higher. Gaps in care are part of the reason annual rates of new HIV infection have been difficult to drive down, even in countries with the best access to the best care.
The graphic below for the United States, called the HIV Care Continuum (or "HIV treatment cascade") comes from the Centers for Disease Control, and is a visual model being used to identify challenges across all stages of HIV care from initial diagnosis all the way to undetectable status. In brief, it shows us where we're failing and by how much, and gives us an idea what bridges we need to build or strengthen in order to do better.