Thanks to therapeutic developments in recent years, HIV/AIDS is now considered a chronic condition to be managed, not a deadly disease.
It is estimated that over 1.2 million people in America are living with HIV/AIDS, and many of them are sharing day-to-day management tips, raising awareness, and building communities online.
How are they demonstrating that life can be lived to the fullest with this condition? And which medications to treat or prevent HIV are people searching for the most?
The Trends Section provides an overview of some of the most recent and relevant topics that relate to particular health conditions.
It features a selection of the topics that have the fastest growing Google search interest across the last three months, and reflects the inquiries of patients, healthcare providers, scientists, and others who are invested in the topic.
This is valuable to understand people’s interests and concerns at the present moment, and often include the U.S. states that have the highest interest in a topic.
Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.
Search interest for national HIV testing day grew by 60% over the last 3 months, from April 2022 to June 2022.
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National HIV Testing Day is observed annually on June 27, and is intended to encourage people to get tested, know their status, and to get connected to care and treatment if necessary. Every year around this day, many HIV-positive people speak about their HIV status on social media, in order to educate others on the benefits of getting tested, as well as the ways in which they live normal lives while managing an HIV infection. This discourse seems to have led to an uptick in searches for “National HIV Testing Day 2022” over the past three months.
“HIV testing is self care” is the theme for National HIV Testing Day 2022. With the COVID-19 pandemic, the concept of self-care has emerged as a particularly powerful theme over the past two years. It has been widely embraced as a way to cope with the challenges to personal well-being that many faced during the pandemic. This greater emphasis on personal well-being continues to resonate with people, hence why it is an effective theme for this day this year.
People searching for HIV/AIDS are also making inquiries about the drug tenofovir alafenamide (TAF) as a related topic. Searches for this common antiretroviral medication were highest in the District of Columbia, Maryland, Massachusetts, Oregon, and Georgia. TAF is FDA-approved for the treatment and prevention of HIV, as well as for the treatment of the hepatitis B virus (HBV), which can be an opportunistic infection of HIV. It is most often taken in the form of a fixed-dose combination medication, and is a key component of widely prescribed HIV treatment drugs Genvoya, Odefsey, and Biktarvy, as well as the popular drug Descovy that is used both as an HIV treatment and a pre-exposure prophylaxis (PrEP) solution.
Recently, this group of TAF-containing drugs has been featured in news articles that discuss their accessibility to people who need them to either treat or prevent HIV infection. These therapies can cost thousands of dollars a month. Despite policies and subsidies that are designed to increase access among the most vulnerable, many people with HIV or at greater risk for contracting it continue to encounter barriers in obtaining these drugs.
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Search interest for tenofovir alafenamide grew by 6% over the last 3 months, from April 2022 to June 2022.
Search interest for how is HIV transmitted grew by 55% over the last 3 months, from April 2022 to June 2022.
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Searches related to HIV transmission have seen a substantial increase in the past 3 months. This is likely linked to efforts around National HIV Testing Day. Searches were highest in Indiana, California, Washington, Massachusetts and Oregon.
The related query “can HIV be transmitted by kissing” was also surging across the same time period. This reflects one of the most common misconceptions about HIV transmission – that it can be passed on from the bearer of the virus to another through saliva. (Note: HIV can only be transmitted through bodily fluids such as blood, semen, vaginal secretions and breast milk.) Reputable health sources such as the Centres for Disease Control and Healthline have debunked this myth, providing accurate information about HIV’s transmission.
A surge of people searching for HIV skin rash pictures has occurred over the past three months, and it is very likely that this interest is linked to people looking to distinguish it from the emerging monkeypox virus. The HIV and monkeypox viruses result in early symptoms that are similar to one another: mainly flu-like symptoms with an accompanying skin rash. Initial U.S. public health reporting has revealed that monkeypox is disproportionately affecting men who have sex with men (MSM). Because much of this mirrors the initial transmission pattern of HIV decades ago, popular reports have drawn comparisons between the two viruses.
The majority of people who contract HIV will experience a non-specific skin rash within the first two months of infection, which can be itchy or painful, and can be red or purple in color. It occurs as the body is trying to fight off the virus, and can often be confused as an allergic reaction or attributed to a different virus. Luckily, therapeutic advances have made such rashes less severe and shortened their duration.
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Search interest for HIV skin rash pictures grew by 258% over the last 3 months, from April 2022 to June 2022.
Search interest for Descovy vs Truvada grew by 50% over the last 3 months, from April 2022 to June 2022.
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Searches comparing brand-name drugs Descovy and Truvada have been up across the last three months, with most searches coming from people in Florida, Texas, New York and California. These antiretroviral medications are among the most commonly prescribed for HIV treatment and prevention in the U.S. and globally, and they are similar in composition as both contain emtricitabine and a form of tenofovir. They are both FDA-approved to treat HIV infection, and for use as PrEP in order to significantly reduce the chance of contracting HIV. Both are products of GIlead Sciences.
Truvada was the first drug approved for use as PrEP in 2004, and because of this, has been studied more extensively and is offered in generic form. Descovy is newer and research indicates that it is safer for the kidneys and for bone health. However, Descovy is not approved for use in females at risk of contracting HIV through vaginal intercourse, whereas Truvada is approved for use as PrEP in both males and females. The increase in searches may be driven by recent articles that highlight the high cost of both drugs and that discuss strategies for obtaining them with or without insurance.
The Culture Section highlights emerging cultural trends, new products, and notable dialogue about a variety of health conditions. The purpose of this section is to zoom in on what has been happening within the cultural and professional landscape of a particular health condition–stories that are often missed by quantitative searches.
By featuring influential social media items, patient discourse, professional dialogue, product innovations, and impactful news items, this section illuminates the lived experiences of many patients, while also providing a snapshot of the developments happening around them.
Here, Quilt.AI offers a detailed and nuanced perspective of what is new and what is meaningful.
Many people living with HIV/AIDS have emerged as social media influencers, and Krazy and Nosey (@krazylovesnosey)--whose tagline is “Full Blown AIDS and Beautiful”--offer a unique perspective within this community. They give their followers a view into their relationship as they navigate being a same-sex, serodiscordant couple.
They cover a wide range of topics including HIV/AIDS symptom management, healthy diet choices, dispelling transmission myths, mental health, social rejection, medication regimens, exercise, and HIV testing. Their TikTok posts have received almost 70K likes and their account has 18.4K followers. Through these posts, they offer support and hope to others living with the virus, esp. those who like them are in serodiscordant relationships.
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The NAMES Project AIDS Memorial Quilt has been a key topic of conversation on social media over the past few months. It has seen a 170% increase in searches over the past 3 months.
Online activity around the quilt spiked around June 12 and 13 when the quilt’s panels were laid out in San Francisco’s Golden Gate Park. This year saw 3,000 additions to the AIDS Quilt, which was started 35 years ago. The quilt represents grief and serves as a memorial to loved ones lost to the HIV/AIDS pandemic. However, it also represents activism as it brings attention to the tremendous impact of loss to anyone viewing it.
To date, the entire quilt weighs 54 tons and includes nearly 50K panels that are dedicated to over 110K individuals whose lives were taken by the virus. Pictures of the event have been trending on social media, particularly under the hashtags #namesproject and #aidsquilt on Instagram.
The Reddit community r/hivaids has almost 11K members and states that its primary purpose is to “deal with the social, cultural, and historical implications of the virus' past, present, and future.” Although readers are advised to redirect advice and emotional support inquiries to the private community r/beingpoz, people living with HIV/AIDS and their loved ones often utilize this public community for these purposes.
Perhaps as a result of the open nature of this forum, many individuals post, and respond to posts, about how to handle a new HIV diagnosis, among other emotionally-charged topics. The shock, social stigma, and sense of isolation is real for many who face this diagnosis, and luckily the response threads are incredibly supportive and reassuring about treatment options.
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TAmerican HIV/AIDS advocate, vlogger, fitness model, and award-winning pro bodybuilder, Raif Derrazi (@raifderrazi), is a public figure who demonstrates that having HIV does not preclude one from living life to the fullest and with great purpose. He currently has 25.4K Instagram followers, where he primarily focuses on HIV/AIDS advocacy work and fitness instruction.
Raif’s April 25 post that addresses misconceptions about sexual intimacy with an HIV-positive partner has been viewed 14.7K times. In it, he suggests that people take their antiretroviral medication to become undetectable and thus untransmittable. There is a considerable amount of fear about romance/intimacy prospects among those who are living with HIV, and so contributing to this conversation contributes positively to the well-being of many individuals who are HIV-positive.
iNew York City-based POZ Magazine is a multi-faceted brand that offers a publication and also facilitates HIV-positive community and connection. It bills itself as “the premier HIV/AIDS advocacy, lifestyle, treatment and information resource,” and the majority of its activity happens on Facebook (where is has over 42.2K followers) and Twitter (where it has over 27.8K followers).
Recently, POZ has been posting research articles about how the COVID-19 pandemic has uniquely impacted people living with HIV/AIDS. One article drew attention to the psycho-emotional effects of the pandemic as people with HIV experienced a significant amount of stress, isolation, and concerns about how Long Covid might affect them. Other articles feature the latest on treatment and prevention, as well as personal stories of resilience. POZ even features a personals section and a large online social network.
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