Hooking Up to Social Media

How Apps and Social Media are Changing Life With HIV

Photo: iStockphoto.com/Visiofutura.
Photo: iStockphoto.com/Visiofutura.

The emerging role of technology is evident in the mobile phones most of us use on a daily basis. It's practically impossible not to do everything via your device at this point. Mobile applications (apps) have dominated every corner of the market and in some cases are revolutionizing the ways users get pertinent information, as well as changing the way gay men date as we know it. Apps are making it easier for men to pre-screen their potential partners as well as set up quick, casual encounters. Social media has also become a strong presence in advocacy and is being utilized left and right to promote, educate, and recruit.

"There's an App for That"

PozTracker is a secure health management tool for people living with HIV/AIDS. The website states that it is designed to help users track their medication, record test results, and monitor progress.

HIV and Your Heart is an app that encourages HIV-positive people to make changes in their life to achieve better heart health. Produced in conjunction with the American Heart Assoication, the app's companion website notes that cardiovascular disease is now one of the top causes of death for people who are HIV-positive. The app includes both heart health and HIV wellness goals, and suggests ways to reach each goal.

iStayHealthy lets users store lab results, HIV medications, and supplementary medications, as well as review CD4 and viral load results in simple charts. The app also provides a glossary of HIV terms and has a user-friendly interface to send results and charts via email.

For those who want concise and easy to understand definitions, AIDSinfo HIV/AIDS Glossary provides more than 700 HIV-related terms in English and Spanish. It also includes an audio feature to hear the pronunciation of terms in both languages.

Although not specifically designed for people with HIV, Dosecast is an app for people who take multiple doses of medications on a daily basis. Users enter basic information about each drug they take, including dosage, and can set up reminders on a daily, weekly, or monthly schedule. The app also tracks remaining quantities and can send refill reminders and log drug adherence.

Social Media

Social media have also taken a greater role in HIV awareness and prevention. AIDS service organizations (ASOs), governmental agencies, and even pharmaceutical companies now actively post on sites such as Facebook, Twitter, Tumblr and Instagram. These online communities and public discussion boards provide an outlet for people living with HIV to connect with others in similar situations. Posts encourage an open dialogue between users and give them the confidence to re-post certain articles, threads, or images to their personal pages or Twitter feeds, which leads to HIV-negative individuals learning more about HIV stigma and most importantly, prevention. Online social communities are formed and bonds are made. Twitter is inundated with individuals telling their daily life struggles and successes living with the disease. For some, it helps to vent what they have to deal with and for others, topics of dating or sex are prevalent on their feeds. These individual life stories are encouraging and inspiring to others. The use of hashtags such as #HIV or #AIDS helps users quickly search for relevant posts.


A number of organizations have taken to social media to promote their campaigns. Many are focused on the effort to end stigma against HIV and those affected by it.

Greater Than AIDS promotes images of individuals telling their story. The U.S. Centers for Disease Control (CDC) has a similar campaign, Act Against AIDS. Even regional organizations such as the San Francisco AIDS Foundation are currently developing campaigns around personal stories. Positively Aware's photographic anti-stigma campaign began in 2010 as A Day with HIV in America. In 2012, it expanded to include submissions from as far away as Brazil, Cyprus, and New Zealand and is now known as A Day with HIV. Promoted through social media, photo submissions are displayed in an online photo gallery.

"HIV Neutral"

Photo: iStockPhoto.com/KBF Media.
Photo: iStockPhoto.com/KBF Media.

The Stigma Project seeks to create an "HIV Neutral" world -- free of judgment, fear, discrimination, and alienation -- by educating both positive and negative individuals about the "constantly evolving state of the epidemic" in order to end the distinction between positive or negative. With the rise of HIV infections among young people, the Stigma Project is reaching out to them through the channels of communication that they use.

"Our message has to compete against the professional marketing and advertising campaigns of the public and private sector, and in order to get that 15 seconds of the public's attention, we use targeted ads, thought-provoking and trend-setting memes with branded, appealing graphics that stand out in social media," said Chris Richey, founder and president of The Stigma Project.

Dating and HIV

Mobile geo-location gay dating apps are popular among men looking for sex and/or a relationship. There are a handful of options. At first glance, many of these "hookup" apps don't seem concerned with the disclosure of HIV status. But after further research, it turns out that many companies actually have their own strategic and logical plans regarding HIV disclosure and how they incorporate them into their apps and websites.

Hornet has spent time developing its Know Your Status (KYS) campaign and the language surrounding it. The smartphone app's emphasis on users' self-disclosure is an essential feature -- it's one of the first options when registering a new account.

"For many of the members, our research showed they wanted the ability to let people know before they even started conversations that they are poz; that way, it is already on the table and they can feel safe talking about it and move on to additional meaningful conversations," said Sean Howell, Hornet co-founder and chief marketing officer.

The app allows use of the abbreviation "KYS" as a discreet signal that doesn't reinforce stigmatizing attitudes. According to Howell, fear of stigma is a major reason why people don't get tested. This lack of testing by people who think they are negative but in fact are positive is perpetuating the spread of the virus.

"It's easy to think that we are past the HIV epidemic, but we are not," said Howell. "Numbers are on the rise."

Howell and his team at Hornet are looking to the community to help build a culture of doing good -- having health advocates who are HIV-positive and others making it normal to talk about HIV testing, disclosure, and having these become standards in the gay community. "Being responsible means talking about your status -- positive or negative," Howell said.

Hornet is currently the only app that offers HIV status on their mobile app. However, users can leave their HIV status blank, not disclosing whether they are positive or negative. The app also reminds users to get tested every six months. For those who claim they are "negative," there is the option to enter the date of their most recent test.

Asked why they allowed users to opt out of answering, Howell explained, "Hornet isn't just for people who are sexually active, so they might not have been tested lately or feel they need to be. Approximately six months after their last stated test date, if indicated, we prompt them to pick an option, and insert their new test dates, but the categories might not be so black and white. We don't want to force someone to put that they're 'unsure' about their status just because our belief is that sexually active users should test every six months."

In Howell's view, there are no current campaigns that are successfully reaching youth and males aged 35-55 among the groups most at risk. "Old print media is dead, and this is why Hornet works well," Howell said. "Users are on the app, making friends and talking about these issues."


"When it comes to safer sex, we believe that all members, regardless of status, need to adapt risk reduction strategies that protect themselves and their partners."

MISTER is leading the way in getting members to think about health, HIV, and dating. CEO Carl Sandler is outspoken on issues related to HIV and dating. A contributing writer for the Huffington Post, Sandler also discusses HIV in his role as the relationship and dating expert on Sirius XM Radio. Some of his articles, such as "Fear and Dating in the Age of HIV" and "I'd Like to Sleep with You and I'm HIV+," are sent to hundreds of thousands of MISTER members, who are encouraged to comment and discuss the challenges of dating apps and HIV status. Sandler's article on the meningitis outbreak in New York City was a call to action for HIV-positive members to protect themselves through vaccination. "MISTER is active in helping users to understand the options available to them for protection, and MISTER is leading the way in the use of Truvada for pre-exposure prophylaxis [PrEP]," said Sandler. (See "A Pill to Prevent HIV," in this issue.)

Through its app and website, MISTER encourages users to talk honestly about HIV and their status (see the Online Extra "Surface vs. Substance"). "We have created an environment where honesty and tolerance are valued and encouraged," said Sandler. The app actively discourages any type of language that might discourage users to reveal their HIV status -- such as negative users describing themselves as "clean." "MISTER members are adults who understand that dating in the age of HIV requires maturity, conversation, and compassion," he added.

"We don't see people as HIV-positive or negative, but as one community," Sandler said. "When it comes to safer sex, we believe that all members, regardless of status, need to adapt risk reduction strategies that protect themselves and their partners. This ranges from seroadaptive practices negotiated safely, suppressive HIV therapy, PrEP, condoms, HPV/HBV vaccinations and herpes suppression." According to Sandler, an upcoming version of the app will address disclosure in a new way.


One of the first geo-location dating apps, Grindr is still one of the most popular. Currently, users do not have an option to indicate HIV status, but the company has plans for a new "community."

"When we launch the new Grindr, users will be able to identify with an HIV-positive community called 'Poz'," said Joel Simkhai, founder and CEO. "We've decided to do this instead of providing an HIV status field in their profile, since [a status field] ... might lead to some people unknowingly stating that they're negative in a world where nearly half of HIV-positive gay men don't even know that they're HIV-positive." The Poz community is just one of many communities expected to appear on the app's new version set for release in early 2013.


Volttage.com is a social networking and dating website exclusively for HIV-positive gay men. Launched in October 2012, the site offers free profiles and has been quickly gaining members. Co-creator, AIDS activist, and Project Runway star Jack Mackenroth states, "Sex sells, but we are much more than a hookup site."

The site plans to combat stigma by creating a database of information, support, and resources for users. "We provide an alternative for HIV-positive men who often feel stigmatized and discriminated against on the other sites," Mackenroth said. No longer do poz guys have to worry about disclosure -- it's not a topic that needs to be discussed on Volttage as all users are presumed to be HIV-positive. "As the site develops and grows, we will incorporate features such as forums and blogs that will strengthen a sense of community and acceptance," said Mackenroth. "Volttage will be amazing for creating a very specialized target audience, one we expect to number over 50,000 within its first year."

The three-man operation has also partnered with Frank Spinelli, M.D., F.A.C.P., a licensed and board-certified internist working at Chelsea Village Medical in Manhattan. Dr. Spinelli is the author of The Advocate Guide to Gay Men's Health and Wellness and is an associate clinical professor of medicine at New York Medical College. In addition, Volttage is currently talking with other organizations and professionals about adding content to their site. They are constantly updating the site and adding new features and expect to have a multitude of guest bloggers by early 2013.

How Far Can We Go?

As with all aspects of modern life, the world of technology is ever-evolving and seems limitless in the ways it can affect our lives. For those living with HIV and any other chronic illness, access to the Internet, mobile apps, and social media is not only vital but can provide benefits in a much broader way than the resources of our past. Of course, for many HIV-positive people the issue of access -- whether to health care, treatment, computer time, or a smartphone -- can be a deciding factor in how, or if, technology can affect their lives.

As technology continues to dominate and make its way into our daily routine, doctors, patients, caretakers, and anyone affected by HIV will be forced to adapt and embrace the awesomeness of what the future in HIV care and prevention has to offer.

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