A Future Without HIV: Are We There Yet?
Last weekend was huge for HIV research. Literally epic.
The Guardian, CNN and other major news sources reported on the findings of a major eight-year-long HIV study known as the PARTNER2 study. This landmark study followed 1000 male couples where one partner was HIV positive and on antiretroviral (ARV) medication, and one partner was negative for the disease, across fourteen different countries across Europe.
The study findings showed that when men were adherent to their ARVs (when they took their meds daily and as directed), they became virally suppressed, and had no chance of passing on HIV to their sexual partner, even with unprotected sex. These couples reported engaging in unprotected sex more than 77,000 times collectively without any transmission of the virus.
You heard that right: so long as the HIV+ partners were being fully treated, it was found that there was no chance - zero — of passing on HIV to their sexual partner, even with unprotected sex.
The findings of this study were published in 2018, but the CDC recognized the fact that undetectable viral loads lead to zero HIV transmission in 2017, showing support of the Prevention Access Campaign’s “Undetectable = Untransmittable,” or “U=U." More than eight hundred organizations across one hundred countries have now joined together in support of the U=U campaign. HIV/AIDS has claimed the lives of millions since it was first discovered in 1983, but it seems things may finally be looking up.
This is obviously amazing news. This is also a lot to unpack, though, so let’s talk basics, filling in gaps you might have about HIV or AIDS, treatment, and their history, then let's take a look at the view from here.
What are HIV and AIDS, anyway?
HIV (Human Immunodeficiency Virus) is a disease that attacks the immune system, and which makes anyone who has it more susceptible to other infections that can then cause AIDS (Acquired Immune Deficiency Syndrome). A person living with HIV is considered to have AIDS when their CD4 count — the amount of white blood cells in the body — drops below 200 (the normal range is 500-1,500), and they have been diagnosed with what's called an opportunistic infection. Some of the most common opportunistic infections are recurrent pneumonia, toxoplasmosis, hepatitis B and C, and candidiasis (yeast infections or thrush) - though there are many. Basically, because HIV attacks the immune system, which makes it easier to fall seriously ill by another serious infection, and greatly inhibits the body’s ability to fight back. Good CD4 cells are destroyed, and HIV begins creating new copies of the virus.
One big misconception that still exists, thanks in part to stigma and lack of accurate education, is that HIV = AIDS, or even that HIV always leads to AIDS. That’s not true. With advances in research and treatment options, many people with HIV in developed nations now never experience AIDS.
HIV was initially found in 1981 and first called GRID -- Gay-Related Immunodeficiency -- because it was first seen in gay men. This framing unfortunately perpetuated stigma (negative, oftentimes shameful, perception) that still surrounds both gay men and HIV to this day. HIV isn’t just about gay men. It can be transmitted (passed from one person to another) through bodily fluids including blood, semen, vaginal fluids, and breastmilk. Though the virus passes most easily during anal sex (due to the ease with which anal tissue tears, making the act more “risky” for the receptive, or bottom, partner) HIV does not discriminate based on sexuality, gender, or skin color. Contrary to historical stereotypes, statistics show that globally heterosexual women are who experience the highest rates of HIV infection.
In the 1980s and 1990s when treatments were not yet readily available or affordable, hundreds of thousands of gay men had died from AIDS, largely due to homophobia. In the USA alone, "By 1995, one gay man in nine had been diagnosed with AIDS, one in fifteen had died, and 10% of the 1,600,000 men aged 25-44 who identified as gay had died." Gay men have accounted for more than half (55 percent) of all AIDS deaths since the epidemic’s beginning.
Sensationalized news articles and headlines across the world played a great part in this by demonizing gay men, using terms like “gay plague,” “gay cancer,” and displayed images of tombstones and the Grim Reaper. Heartlessly, HIV and AIDS were viewed by many as a punishment for what they or others considered “amoral behavior,” like sex between men, IV drug use, or sex work. This, combined with existing intense bias against these groups, led to a mass amount of fear, and tremendous silence surrounding the disease. At the height of the AIDS epidemic in the US and beyond, gay men led activist movements criticizing the government’s blind eye and lack of action at such a crucial time, fighting for the Reagan administration to pay attention and to fund research and treatment. It wasn’t until 1986 that President Reagan even mentioned the word AIDS publicly. During this time, HIV was still considered by many to be a death sentence, as affected populations continued to be further marginalized.
Ian Green, Chief Executive of Terrence Higgins Trust, a British charity that provides services relating to sexual health and HIV, was diagnosed with HIV 23 years ago. In a recent interview, Ian, now undetectable, disclosed fears he had when he was diagnosed that many still have today when they test positive for HIV. “The most significant [emotion] at that point in time was how long did I have to live. The other thing that really concerned me for a very long time is am I a risk to other people?” I can only imagine the immense relief that might now be felt by a person living with HIV to learn they are unable to pass it on to anyone else – to not feel as though they are any sort of danger to other people, so contrary to perceptions and experiences of the past.
In the United States, specifically, the population most affected by HIV is still men who have sex with men, accounting for 26,000 new infections each year. Worldwide, though, women represent the majority — 52% — of all adults living with HIV. Though we know anal sex poses the greatest risk of transmission, penis-vaginal intercourse is also a leading cause of transmission worldwide. Similar to the anus, it's easy for the vaginal wall to experience small (usually unnoticeable) tears during intercourse, providing a route for HIV transmission. Vaginal tissue is highly susceptible to any type of infection. Beyond basic physiology, women (including those who don't have vaginas) also remain disproportionately affected by the virus due to vulnerabilities created by social, economic, and cultural status. Gender inequality, as well as intimate partner violence, reinforce harmful power dynamics, both on a personal and systemic scale. In many countries, women face significant barriers to education and healthcare, contributing to a known lack of understanding around pregnancy and HIV.
What about treatment?
HIV treatment medications (ARVs) became available in the late 1980s, starting with the first licensed drug, AZT (of the drug class Nucleoside Analogs), which was initially highly toxic.
Fast forward to the 1990s and a new era of ARVs. Researchers began to realize that one class of drugs was not enough to control CD4 counts, and eventually introduced HAARTs – highly active antiretroviral therapies – made up of combinations of Nucleotide Reverse Transcriptase Inhibitors (NRTIs), Non-nucleoside Reverse Transcriptase Inhibitors (NNRTIs), Protease Inhibitors, Fusion Inhibitors, CCR5 Antagonists, and Integrase Inhibitors. Not only were these treatments (called “cocktails” in early years) numerous - sometimes 20 or more pills a day - but many doctors refused to even treat people living with HIV. Then there’s the fact that even seeing a doctor and paying for these incredibly costly meds meant having health insurance (something many, many people didn’t have), and a plan that would potentially pay thousands upon thousands monthly for treatment.
Through years of advocacy and research, ARVs became more effective in treating the virus, and HIV resource agencies began growing around the world, making it easier for more people to access these medications. Drug trials continued, and researchers found the right combination of these different classes of drugs.
Today, people living with HIV who are connected to treatment can now take as little as one single pill per day as their full treatment. (That one pill contains at least three types of medications, though.) By finding these effective combinations, remaining adherent to one’s ARVs has become much easier than not only remembering to take, but having to swallow, handfuls of pills per day.
This brings us back to the results of the PARTNER2 study and what life looks like for people who receive HIV treatment today.
UNAIDS data from 2018 reported that 21.7 million of the 36.9 million people living with HIV worldwide were receiving treatment in 2017. Their current initiative and goal is 90/90/90: that 90% of people living with HIV will know their status, 90% of those people will be on treatment, and 90% will be virally suppressed. Adherence to treatment is key to suppression of the virus.
Current standards of treatment include taking daily medication and having lab work done every six months prior to checking up with a healthcare provider. Today there are many ARV medications, and doctors choose the best regimen for each individual patient. Typically, after a few months of taking medication (and depending on how long they have been living with the disease untreated), people diagnosed with HIV will have such a small amount of copies of HIV in their blood that they are considered “undetectable.” People achieve viral suppression (a controlled, lowered amount of the virus) when the copies of HIV are less than 200 per milliliter (mL) of blood. This doesn’t mean that a person with an undetectable viral load will test negative for HIV, but during routine labs (which check the CD4 – the level of good white blood cells, and the amount of HIV copies in the blood) their amount is so small that it will not show up on that particular test.
It’s important to note that just because a person achieves undetectable status does not mean they can stop taking medication. If a person begins missing more than 3-4 doses of their ARV per month regularly, their viral load can climb to a detectable value, and they may need to switch medications to get that number back under control.
So, what does this news mean for everyone?
Obviously, the fact that HIV treatment has now been proven to prevent transmission when taken properly is incredible news, and is potentially momentous both for people living with HIV and those of us who have worked or are currently working to prevent it. Researchers have been working hard for decades on the science behind HIV and developing and administering effective treatment.
But what about the people who don’t have access to these medications? In developing nations, poor economy contributes to a lack of healthcare, and the availability of medication to fight HIV. UNAIDS estimates that more than $26.2 billion will be required to combat HIV/AIDS in the year 2020. Treatment is expensive.
Stigma plays — as it always has — another huge role in the ability to receive treatment. Even just being tested for HIV is scary because of fear of judgment and discrimination. In terms of HIV, however, ignorance is not bliss. It is crucial to know one’s status so that treatment can be initiated, and more people will not come in contact with the virus. 73 countries worldwide still consider homosexuality to be a prosecutable offense, sometimes punishable by death: these attitudes and policies obviously keep many people from even getting tested. A key proponent to HIV prevention is education and counseling, but for many, the idea still exists that HIV = gay, and it can be dangerous to discuss either.
There are many other barriers that exist that prevent people from receiving HIV treatment. People of color and those who are low-income are incredibly underserved. Many people do not have access to health insurance or appropriate healthcare. ARVs cost upwards of $3,000 per month without insurance. Even with insurance, lack of education often leads to the inability to understand a diagnosis and other parts of health, and makes it difficult for many marginalized people to communicate their needs with a doctor. What about transportation? Just getting to a doctor’s office or pharmacy is often a task on its own, especially in rural areas or healthcare deserts (areas with no clinics or hospitals). Additionally, housing and food security play their own roles in creating barriers to optimal HIV health. Without a safe place to live, many people lack a safe place to store their medications even if they can get them. Most ARVs need to be taken with food to be absorbed properly: not knowing where your next meal will come from adds another layer to the struggle with adherence.
Luckily, there are many HIV resource agencies to assist people with some of these barriers and help to make access to HIV healthcare easier. In the United States, the AIDS Drug Assistance Program (ADAP - though the name varies by state; for example, this resource is called MIDAP in Michigan) provides free HIV healthcare and HIV medications for people enrolled in the program. This organization even covers undocumented citizens. HIV resource agencies often provide testing, education, counseling, and HIV health management services (including social work, and food, housing, and insurance assistance) for people who are lucky enough to have an organization in their area.
There are also other recent HIV advancements to be excited about. Pre-Exposure Prophylaxis (PrEP) was initially approved by the FDA as a preventative medication for adults in 2012 and is gaining popularity: last year it was approved for adolescents, too. PrEP is a common ARV known as Truvada, but there are four other medications currently being studied for effectiveness - Maraviroc, Rilpivirine, Tenofovir, and Dapivirine. PrEP is intended to be taken by people considered high-risk for contracting HIV, like negative partners of someone living with HIV, men who have sex with men, injection drug users, and sex workers. PrEP, taken once daily, acts as a protective shield from the virus, preventing transmission by over 90% from sex, and over 70% for needle drug users. You can think of PrEP as sort of a birth control, but for HIV. If you think PrEP might be right for you, you should talk to a healthcare provider. As expected, it's an expensive medication, but the manufacturer provides discount coupons that work with insurance and can usually be found at your local HIV agency or even online.
If PrEP is an analogy for birth control, then Post-Exposure Prophylaxis (PeP) would be the morning after pill.
PeP, initially created for medical workers and police officers who could potentially be pricked by a needle in the field, PeP is also available for anyone who believes they may have come in contact with HIV. PeP - a combination of ARVs Truvada and Isentress, should be started within 72 hours of potential exposure, and continued for 28 days. Similar to PrEP, PeP is not 100% effective, but if taken correctly it greatly minimizes the risk of transmission. If you think you may have come in contact with HIV through unsafe sex or needle use, go to your nearest hospital or HIV agency to discuss the potential risks so that a healthcare professional can decide if PeP is right for you. PeP is intended to be an emergency option to provide protection in the event of unsafe contact, like unprotected sex or sharing needles with a partner who is unaware of their status or is living with HIV but not on treatment. The results of the PARTNER2 study indicate that PeP is not necessary if your partner is undetectable ,as we now know they cannot transmit HIV. In the event of sexual assault, PeP can be cost-free.
It's important to remember that both PrEP and PeP only protect against HIV, not any other STIs (most of which are more common than HIV, so you’re actually more likely to get them in the first place). Safer sex precautions like consistent and correct barrier use should still be taken to prevent transmission of all infections. This is also important to remember for people living with HIV who are undetectable. Though they can’t transmit HIV, this does not mean they should stop having protected sex with new partners or with partners who don’t know their STI status. It’s important to note that the participants in the PARTNER2 study were all in monogamous relationships and reported not using condoms regularly at the time the study began.
What does this all mean for the fight to end HIV?
After many years in the dark, it's amazing to see mainstream media address advances in HIV treatment and start conversations, a gigantic step in the right direction when it comes to eradicating the virus. It is also obviously amazing beyond amazing that so many people living with HIV can now also live without fear of transmitting the virus to partners.
Simply talking more widely about HIV and advancements in research helps to squash out stigma and educates people about the truth about living with HIV in 2019, not 1989. I spoke with Levi Berkshire, Non-Medical Case Manager at CARES, an HIV resource and education agency, and Co-Chair on the Michigan HIV/AIDS Council, who is open with his clients and his peers about living with HIV.
Levi shared that he's excited to see articles about undetectable in the news, and that people are talking about HIV, but states that “There still needs to be a lot of education about HIV in general, even for people living with HIV – a lot of people do not understand.” He makes the point that, though it has been proven that HIV treatment works, it is hard for some people to separate the traumatic history of the virus from new research and what life with HIV looks like today. “With younger people it seems easier to accept that one pill a day can stop transmission of HIV, but people who have lived through the dark ages and how bad it used to be still have the same mentality. We need to continue to educate and uplift, not shame.”
Decades after advocates fought the Reagan administration to take HIV seriously, there is still a lot of work to do, even in the U.S.. In Trump’s 2019 State of the Union Address he announced an initiative to end HIV transmission by 2030, however he spent a mere 63 words detailing his plan. In order for this to happen, the president would need to not only have a real plan, but change his dangerous rhetoric surrounding at-risk populations, including LGBT, people of color, sex workers, injection drug users – and women, as history has taught us that increasing stigma leads to greater fear and suboptimal health outcomes. Given the results of the PARTNER2 study, it seems unconstitutional to limit healthcare access and subsequent treatment for people seeking both HIV prevention and treatment. To really see an end to HIV in our lifetime, MORE funding (not budget cuts!) for research, education, and affordable and accessible healthcare is an absolute necessity.
As simple as some of these things may sound, we direly need to normalize conversations around testing and knowing your status, and to limit stigmatizing language. These changes can save lives and massively improve the quality of people’s lives, especially those living with HIV. You can help by avoiding words like “clean” vs. “dirty,” “infected,” or “diseased” when talking about people living with HIV or other STIs. Person-first language like “people living with HIV” can really make a difference for a person who lives in fear of shame and stigma of their diagnosis.
For so many years, HIV/AIDS has been viewed as an automatic death sentence, which simply is no longer the case for those able to access treatment. We now know that people receiving HIV treatment who have achieved undetectable status can have safe and healthy sex lives with no risk of passing HIV to their partners. By continuing to educate that HIV is now a very livable diagnosis, and by working to eliminate stigma, more people may be tested knowing they are capable of a long and fulfilling life, regardless of test results. The science around HIV is constantly evolving, as shown by results of the PARTNER2 study that indicate Undetectable=Untransmittable, but we must change the way we think of and talk about the virus to continue to support a real future without HIV.