Imagine taking a long cab ride. The driver is lovely, and you’re having a nice chit-chat and a few laughs on the way. Imagine the driver sneezes. Nothing extraordinary, maybe he got an allergy or caught a cold.

Now imagine that you know your driver is HIV positive.

If you don’t cringe and take off out of the taxi like a shot from a gun at the mere thought of it, then you are a minority in this world.

In 35% of countries with available data, more than 50% of the population report discriminatory attitudes towards people living with HIV, according to the report by UNAIDS.

Paradoxically, despite the years of research, public and media attention, national initiatives, and abundance of educational resources for medical personnel and the general population, HIV/AIDS is still one of the most misunderstood diseases.

Continuous stigma, prejudice, and discrimination towards people with HIV in their day to day activities directly contribute to the further spread of HIV while deteriorating the quality of lives of those who already bear the burden of physical and health complications.

Stigma-HIV Conundrum

We have reached remarkable progress since the first case of human immunodeficiency virus in the 1980s. Nearly 8 million lives were saved over the last 15 years, and according to the WHO report from May 2018, HIV/AIDS is no longer among the world’s top 10 causes of death. Continuous years of medical studies and advances in science have given hope to those with HIV+/AIDS status, who, if diagnosed in the 90s, were given 6 months to live at best. Also, PrEP has proved to be highly protective against the infection.

People with HIV can now live longer and healthier lives. But why do the new annual diagnoses have been so ‘uneven’ and stagnating over the recent years?

According to the latest statistics on the AIDS epidemic, 95% of new HIV infections in eastern Europe, central Asia, the Middle East, and North Africa occur among key populations – men who have sex with men, people who inject drugs, sex workers, transgender, and incarcerated people. These marginalized groups of the society are especially vulnerable to the infection.

And there is a reason for that.

World Health Organization estimates that:

  • Nearly 37 million people were living with HIV in 2017 globally. The vast majority of the people with HIV reside in low- and middle-income countries.
  • Only 59% of the people living with HIV were undergoing treatment with ART.
  • So far, an estimated 35 million people have died from HIV-related causes.

 

The long-term target now is to decrease the HIV incidence rates and HIV-related deaths to less than 200 000 and 400 000 per year correspondingly.

Key populations are usually caught in the vicious circle of stigma and HIV. They remain on the fringes of the society, which makes them more prone to HIV, leads to poverty, and poor access to the healthcare services. Key populations are not always mentioned in HIV plans, and even if the policy exists, the quality of care for them is not equal.

If it seems that in 2018 negative attitudes prevail mostly in the developing countries, which are the most affected by HIV region in the world, this is not entirely the case.

In 2016, 60% of nations in the European Economic Area announced that prejudicial and biased attitudes of the healthcare sector employees towards marginalized groups such as men who have sex with men and people who inject drugs negatively impacted the provision of adequate HIV prevention services for these key populations.

People Living with HIV Stigma Index also indicates that on average 1 in every 8 people with HIV is being denied health services.

HIV-related stigma is a commonly cited barrier to HIV testing, disclosure to partners, engagement in biomedical prevention approaches, and medication adherence, particularly for vulnerable and key populations.

International Center for Research on Women

HIV testing is still limited. According to the 2018 WHO fact sheet, on average 25% of people with HIV or 9.4 million people remain undiagnosed and unconscious of their infection status. At the same time, those who are unaware of their HIV status are 3.5 times more likely to transmit the virus to another person if compared to people who know about their infection.

Fear of stigma and prejudice is one of the main reasons people hold off on HIV testing, disclosing their status and starting ART treatment. People with HIV are often ostracized by their immediate environment, family, friends, employers while lacking access to adequate healthcare. As a result, people are diagnosed late, increasing the likelihood of virus transmission to others, complications in treatment, and early death.

Early Diagnosis Matters

Surely, prevention of HIV is crucial, but an early detection is no less important to reduce the spread of the virus, decrease the likelihood of symptoms, and hinder the infection from penetrating the organs. It can also mitigate the side effects of anti-HIV treatment.

There is no cure for HIV/AIDS so far. The recent RIVER study, which showed promise in producing a remission or cure for AIDS and whose results were eagerly awaited, failed to live up to expectations and kill dormant HIV cells.

At the moment, it is possible to inhibit HIV. A therapy called antiretroviral treatment (ART) also known as ‘AIDS cocktail’ proved to be effective in decreasing the patient’s viral load by stopping the virus from reproducing and decreasing the risk of transmitting the disease to almost a zero. When stopping the ART, though, HIV tends to return after hiding in the so-called ‘reservoirs.’ It sure saves and prolongs lives, but solves only the part of the problem.

As every medicine, ART causes side effects, both short-term and long-term. They can vary from person to person and depend on a number of factors. These include genetic variations (e.g., anti-HIV drug abacavir causes a severe allergic reaction in case you have a particular gene), ethnic background, lifestyle choices (such as smoking, recreational drug usage, and consumption of high-fat food or alcohol), medical family history, and the timing of the diagnosis being one of the most important.

My daughter refused to go hospital to receive medicines [sic]. My daughter died because of the fear of stigmatization and discrimination.

Patience EshunA grandmother from Ghana who lost her daughter to HIV

Common short-term side effects may include a headache, diarrhea, sickness, fatigue, mood swings, sleep disruptions, mental problems including anxiety and depression, rash, and sexual dysfunction.

ART also often leads to various long-term side effects. Most of the anti-HIV drugs are processed in the liver, so long-term treatment might result in liver disease. The issue may be aggravated by heavy drinking as well as taking complementary medicine along with anti-HIV drugs.

Increase in lipids and blood sugar is common, which in its turn poses a higher risk of heart disease, heart attack, and stroke. In case your diet is not balanced, you may gain weight, feel dizzy, and have an increased chance of developing diabetes.

Most of the anti-HIV drugs can lead to kidney problems over time. Those who were suffering from kidney issues before starting the treatment are at the highest risk of developing complications.

Peripheral neuropathy is another long-term side effect of ART. Either HIV itself or the treatment with anti-HIV drugs give rise to the condition. Peripheral neuropathy results from the injury of peripheral nerves and manifests itself in numbness, tickling, and pain in limbs.

Some of the anti-HIV drugs have also been proven to cause changes in body shape through fat built-up or fat loss – lipodystrophy as well as the loss of bone tissue – osteoporosis.

The long-term side effects can be counteracted if diagnosed early, but that would mean consuming more medicine along with three essential anti-HIV drugs, which would put more pressure on your liver and thus keep the patient in the constant loop of health complications.

There is also evidence that people living with HIV suffer from an increased risk of cancer when compared to HIV negative people of the same age. By contrast to the general population, people with HIV are 19 times more likely to be diagnosed with anal cancer, 3 times more likely to suffer from liver cancer and 2 times – from lung cancer, according to National Cancer Institute. The risk persists even when undergoing an ART treatment. People with HIV also have a 50 percent higher chance of a heart attack and an increased chance of heart failure.

The main reason for the higher susceptibility of people with HIV to various health complications is because their immune system has already been impaired by the HIV virus. The longer you delay the treatment or the later you are diagnosed with HIV, the more damage is done to your immune system.

A recent study also found that 1 in 9 people may be able to manage their viral load after disrupting ART treatment. Most of the participants started treatment less than 6 months after having been infected. Researchers assume that interrupted treatment may play a critical part in achieving HIV remission.

There are many initiatives to normalize HIV testing and increase its frequency among affected key populations to foster early detection.

Self-testing kits have been proven to improve the early HIV detection in young South African bi/gay men who preferred to test in the privacy of their homes compared to testing in the clinical setting.

This spring Grindr, the world largest social networking app for queer people, released a new feature that sends users notifications with a reminder to get tested for HIV in a non-judgmental environment every 3 or 6 months. It also provides free ads for HIV testing sites across the US including those in rural and underserved areas. It allowed to reach the hard-to-get-at population and proved to be successful in engaging a large percentage of gay men who have never been tested before.

The Survival Advocacy Network (SAN), a Fiji based network of transgender and female sex workers, is one of the numerous organizations whose aim is to enable sex workers to access health care without fear of stigma or discrimination by training healthcare providers.

Prevention via condom use and access to health care is vital, but it is us who hold the key to eradicating the virus once and for all. By reducing the stigma and prejudice against marginalized groups, we can create a safe and trusting environment where every life counts and the help is given to those who most need it.