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This World AIDS Day, We Study the Online Discourse on HIV/AIDS

World AIDS Day is observed on 1st December every year. As the first global health day since its inception in 1988, it has given people around the world an opportunity to unite in the fight against HIV and express support to those affected by it. While HIV/AIDS is now considered a manageable chronic condition and not a deadly disease, it’s estimated that over 1.2 million people in America and 38.4 million people globally (two-thirds from the African region) are still infected.

Despite four decades of HIV response, inequalities persist for basic services like testing, treatment, and contraception, and young women in Africa remain disproportionately affected by HIV. Further, the COVID-19 pandemic has adversely affected the global HIV response, leaving millions of people at risk.

With only eight years left to achieve the 2030 goal of ending AIDS as a global health threat, the 2022 World AIDS Day theme is “Equalize” — a global call to action to address the inequalities which are holding back progress in ending AIDS. According to UNAIDS, this entails:

  • Reforming laws, policies, and practices to tackle the stigma and exclusion faced by people living with HIV and by key and marginalized populations.
  • Sharing technology to enable equal access to the best HIV science between communities and between the Global South and North.

The Human Immunodeficiency Virus (HIV) targets the immune system and weakens the body’s defense against many infections and some types of cancer, gradually making infected people immunodeficient. It can be transmitted through unprotected sex, contaminated blood transfusions, hypodermic needles, and from mother to child during pregnancy, delivery, or breastfeeding. The most advanced stage of HIV infection is Acquired Immunodeficiency Syndrome (AIDS), which can take years to develop if not treated.

Online Discourse on HIV/AIDS

This World AIDS Day, we used our AI tool, Sphere, to study the online discourse on HIV/AIDS. First, we looked at the search volume for top-selling drugs for HIV/AIDS. Here’s the list, with Truvada topping the list, followed by Descovy:

We also studied trending Google searches related to HIV/AIDS.

Which topics have the fastest-growing search interest? What are patients, caregivers, healthcare providers, and scientists curious about?

Here’s a short list of trending topics:

1. Stem cell transplants for HIV

Search interest for stem cell transplants to treat HIV grew by 137% between July and September 2022. According to Jana K. Dickter, MD, associate clinical professor, Division of Infectious Diseases, City of Hope, stem cell transplantation is a complex procedure with significant side effects and isn’t a suitable treatment option for the majority of people living with HIV. However, as people living with HIV age, some of them may eventually develop blood cancer which can be treated with a particular type of stem cell transplant.

Search interest for Stem Cell Transplant HIV grew by 137% between July and September 2022.

2. HIV prevention drugs

Searches for HIV prevention drugs have increased by 135% between July to September 2022. The spike in September could be related to a ruling by a federal judge in Texas against a government mandate that requires employers to provide healthcare coverage for HIV prevention drugs. The ruling meant greater financial burden for those seeking HIV prevention drugs, making marginalized communities more prone to HIV infections. The ruling was also controversial as it stated that “this mandate required religious employers to provide coverage for a drug that encouraged homosexuality, prostitution and promiscuous behavior,” furthering the stigmatization of people with HIV.

Search interest for HIV prevention drugs grew by 135% from July 2022 to September 2022.

3. Does low CD4 T-Cell count mean faster remission?

A recent study published in Clinical Infectious Diseases found that people with HIV who started antiretroviral treatment early, i.e. before their CD4 T-cell count fell below 800, had a substantially smaller viral reservoir, thus, improving the prospects of long-term remission. A CD4 T-cell is a type of white blood cell that help fight infections by triggering the immune system to destroy viruses and bacterias.

Search interest for CD4 grew by 55% between July and September 2022. Antiretroviral treatment is also recommended by the U.S. Department of Health and Human Services.

Search interest for CD4 grew by 55% between July and September 2022.

4. Dolutegravir for HIV-1

Antiretroviral medicines are used to treat HIV by allowing the immune system to repair itself and prevent further damage to the body. Dolutegravir is one such antiretroviral drug and there is significant search interest for it from people in Michigan, Oklahoma, Maryland, Utah, and Georgia in the United States.

A study by Harvard T.H. Chan School of Public Health also found that Dolutegravir-based antiretroviral therapies for HIV-1 are more effective in pregnancy compared to other ART regimens. However, being recently approved, there is limited information on its safety compared to other common regimens.

Search interest for Dolutegravir grew by 97% between July and September 2022.

5. Cabotegravir: A long-lasting injectable PrEP

Cabotegravir, or Cab-LA, manufactured by the British pharmaceutical company ViiV Healthcare, is a medication that can be administered in the form of tablets or an injection. It can be taken every two months, instead of daily — which can limit side effects.

Search interest for Cabotegravir grew by 159% between July and September 2022 after the 2022 International AIDS Conference, where ViiV Healthcare presented research that Cab-LA is the only long-lasting injectable form of pre-exposure prophylaxis (PrEP). This means that medicinal consumption can be made much more accessible, with an 89% lower rate of HIV acquisition when compared to regular oral tablets.

Search interest for Cabotegravir grew by 159% between July and September 2022.

With the help of Sphere, we also looked at cultural trends and social media discourse related to HIV/AIDS. An analysis of Instagram posts revealed that the top emotions detected in HIV/AIDS-related posts are affiliation, creativity, affection, and happiness — proving the existence of a supportive and optimistic online community. The colors detected were also in-line with the red palette and red ribbon associated with HIV/AIDS awareness campaigns globally.

Some of the other social media trends and cultural discourse are as follows:

1. Johneri’o Scott: Living with HIV

People living with HIV/AIDS are taking to social media to express themselves, share their struggles, and educate others about their condition. Johneri’o Scott is a popular TikTok influencer with 29.9K followers who posts videos about HIV/AIDS symptoms, HIV/AIDS management, healthy diet choices, transmission myths, mental health, social stigma, medication, and HIV testing. He offers support and hope to others living with HIV through his posts.

2. The ‘Touch Me’ trend

In an effort to de-stigmatize HIV/AIDS, an HIV-affected person asks strangers to touch him, telling them he has HIV. Many of them go on to hug him — expressing support and empathy to him and those like him. The TikTok post has garnered 535K likes, 5596 comments, and 2837 shares, and inspired many others to do the same.

3. CRISPR-based HIV gene therapy

A new gene-editing therapy known as CRISPR which can potentially change the future of HIV therapeutics has generated a lot of curiosity and conversation recently. A Reddit thread on the topic has 363 upvotes.

4. Gena Tew: Positive ain’t easy

Gena Tew, a 27-year-old model, was diagnosed with AIDS in March 2022. She has 93.9K followers on Instagram and 841.1K followers on TikTok and has been documenting her struggle with HIV/AIDS.

Source: https://www.instagram.com/tewgena

5. Elton John receives the National Humanitarian Award

On 23rd September 2022, Elton John performed at the White House after which US President Joe Biden presented him with the National Humanities Medal for his HIV advocacy. This news has been widely shared on social media by his fans appreciating his efforts to raise awareness and end AIDS.

World AIDS Day 2022

According to the WHO, 70% of new HIV infections globally are among people from marginalized (and often criminalized) backgrounds. According to UNAIDS, in Africa, adolescent girls and young women are 3X more likely to acquire HIV than boys & young men. The AIDS epidemic can only end by making HIV awareness and treatment more accessible and removing the stigma and discrimination associated with it. A unified global response is the need of the hour and a nuanced study of the online discourse related to HIV/AIDS could help healthcare providers, advocacy groups, and global nonprofits drive impact at scale.

Write to us at anurag.banerjee@quilt.ai to learn more about our work.

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