The 7 Best HIV Support Groups of 2020

Find the community to suit your needs

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First Look

Best Overall: POZ Community Forum

"POZ Community Forums continues to attract thousands of people looking for insights and advice about HIV testing, treatment, care, and prevention."

Best for Women: The Wellness Project

"It is a nonprofit organization dedicated to the needs of women and girls living with HIV."

Best for African American Gay Men: THRIVE SS

"Central to the support model is "Judy Support," used to describe cultural self-acceptance and the rejection of homophobia and racism."

Best Facebook Group: Poz Place

"As a private Facebook group, Poz Place requires registration and an agreement to adhere to community rules."

Best Peer-to-Peer Support: TherapyTribe HIV/AIDS Tribe

"The HIV/AIDS portal has more than 11,000 registered users who offer words of support or encouragement whenever times get rough."

Best for Teens and Young Adults: Positive Peers

"Positive Peers is free but is only available to people between the ages of 13 and 34."

Best HIV Support App: MyHIVTeam

"This app allows users to connect with others taking the same drugs or experiencing the same health concerns."

HIV is no longer the life-threatening disease it once was, but people living with it still benefit from strong social and emotional support. As a disease characterized by high levels of stigmatization, finding people you can confide in safely will not only help normalize HIV in your life, but will help you overcome everyday challenges including treatment, prevention, relationships, and your general well-being.

At a time when digital interactions have become the social norm, online support groups offer one of the best ways to meet others living with HIV in a safe, open environment.

Our Top Picks

Best Overall: POZ Community Forum

POZ Community Forum

POZ Community Forum

POZ Community Forum is one of the largest and longest-running discussion boards for people living with HIV in the United States.

This around-the-clock community forum was founded by the publishers of POZ magazine in 2005. Because of the publication's high standing and continual presence in the HIV community, POZ Community Forum continues to attract thousands of people looking for insights and advice about HIV testing, treatment, care, and prevention.

While there are no bells and whistles to the POZ Community Forum, the boards are clearly laid out and monitored 24/7, so that abuses common in other forums (such as advertising and quack medicine) are avoided. The admins strongly encourage users to provide the full citation of any medical claims made, ideally with the website address so that members are not led astray.

The POZ Community Forum allows registered users to post three free messages per day. If you desire more interaction, you can purchase a seven-day subscription for around $10, a 30-day subscription for about $15, or a 90-day subscription for approximately $25 by PayPal.

When registered, you can opt to receive or send private messages. If you're interested in meeting and dating others with HIV, POZ offers a separate dating site.

Best for Women: The Wellness Project

The Wellness Project

The Wellness Project

According to the Centers for Disease Control and Prevention, women account for 23% of all new HIV infections in the U.S., while women of color represent 50% of new infections between the ages of 13 and 19.

The Wellness Project, founded in 2002, is a nonprofit organization dedicated to the needs of women and girls living with HIV. Part of its mission to increase health literacy and peer-to-peer support is the Wellness Project, which offers community boards, forums, and other features to registered members for free. Users can opt to either create a profile page (with a photo and personal details) or remain anonymous.

In addition to posting comments on boards and blogs, members can join public groups, request access to private ones, or start an open or closed community of their own. There is also a group and a one-on-one chat feature.

Additionally, the Wellness Project maintains two popular blogs: the English-language A Girl Like Me and the Spanish-language Una Chica Como Yo.

Best for African American Gay Men: THRIVE SS

THRIVE SS

THRIVE SS

African American men who are gay or bisexual are at the greatest risk of contracting HIV of any group in the U.S. The intersecting vulnerabilities that affect these men—including homophobia, stigma, poverty, and unequal access to healthcare—remain inadequately addressed by many local and state health officials.

This is why organizations like nonprofit THRIVE SS, found by three African American men in 2015, remain vital to this underserved population. Since its founding, THRIVE SS has grown from 45 men in Atlanta, Georgia, to over 3,500 in local chapters throughout U.S.

While the nonprofit's programs are mainly focused on live support groups—including BYOB brunches and potlucks organized by local chapters—there are also online peer support events and livestreamed webinars for those unable to attend in-person events.

Central to the THRIVE SS support model is something it calls "Judy Support," a term used to describe cultural self-acceptance and the rejection of homophobia and racism.

In an effort to reach the larger community of gay and bisexual African American men, THRIVE SS has introduced a Victories In-Health app (iOS only) to connect users to support networks, as well as information about HIV treatment, prevention, and housing resources.

THRIVE SS is free, but it asks members to donate if they can afford to do so.

Best Facebook Group: Poz Place

Poz Place

Poz Place

There are numerous HIV communities on Facebook, many of which are undermined not by their mission but by the lack of community involvement or facilitation. That's why many fizzle out a year or so later.

One Facebook community that's been able to sustain momentum for more than seven years is Poz Place. Founded in 2012 by Brittany Cameron, an HIV-positive mother and peer engagement specialist, Poz Place offers a free, safe space for anyone in need of HIV support regardless of their sexual orientation, gender, or HIV status.

As a private Facebook group, Poz Place requires registration and an agreement to adhere to community rules. This not only ensures confidentiality but provides users with an open, honest, and non-judgmental environment.

With over 5,500 registered members, Poz Place is among the largest private support groups on Facebook. As a member, you can expect to see anywhere from five to 10 posts per day and a quick reply to any questions you may have about HIV.

Best Peer-to-Peer Support: TherapyTribe HIV/AIDS Tribe

TherapyTribe HIV/AIDS Tribe

TherapyTribe HIV/AIDS Tribe

TherapyTribe is a free online wellness community that offers people with specific support needs a place to connect safely and confidentially. Among the eight major groups listed on the website is an HIV/AIDS Tribe for people in search of peer-to-peer support from others living with the disease.

While the primary goal of TherapyTribe is to connect users to licensed therapists and counselors, there is a members-only forum that allows users to post comments or reply to questions and/or concerns from others in the community.

Where TherapyTribe succeeds is in its ability to address the emotional needs of its members. While it may not be the first place for you to turn for doctor referrals or to ask about the latest research or treatments, the HIV/AIDS portal has more than 11,000 registered users who offer words of support or encouragement whenever times get rough. And that's no small thing.

You can also send and receive messages from your mobile device, create a circle of friends among registered users, and even start a blog to share with your social network. If there is any downside to TherapyTribe, it would be the lack of a facilitator and discussion boards.

Best for Teens and Young Adults: Positive Peers

Positive Peers

Positive Peers

In the U.S., roughly one in five new HIV infections occurs in people under the age of 25, of whom only 30% are able to sustain an undetectable viral load while on therapeutic medications.

Addressing the barriers to treatment and care in young people with HIV is different from those in older adults. Not only do attitudes and social pressures differ, but so do the ways in which younger people communicate.

Among the newer platforms able to reach this younger population is Positive Peers, a private support app designed specifically for teens and young adults living with HIV.

Positive Peers is a 24/7 support system that delivers all of the features savvy mobile users demand: community forums, private chats, group chats, health and wellness blogs from other young people with HIV, medication refill reminders, an appointment calendar with automated reminders, as well as blood test charts to record, track, and share your results. There also are meditation videos to help reduce stress and a crisis hotline for those in need of one-on-one support.

Positive Peers is free, but it's only available for people between the ages of 13 and 34. To get the app, you must first provide a scanned copy of valid ID (such as a driver's license, passport, or birth certificate) and confirmation of your diagnosis (such as an HIV test, a copy of your viral load and CD4 count, or a signed release from your doctor).

Best HIV Support App: MyHIVTeam

MyHIVTeam

MyHIVTeam

Another free app that works similarly to Positive Peers but is available to anyone over 18 is MyHIVTeam, one of over 35 mobile apps created by the San Francisco-based MyHealthTeam.

Designed to enhance the user experience, the MyHIVTeam app asks registrants to provide details about their diagnosis (including current symptoms and the date of the initial diagnosis) along with a list of medications and side effects.

This allows users to connect with others taking the same drugs or experiencing the same health concerns. You can also filter members by lab results, symptoms, or side effects (such as nausea, lipodystrophy, or neuropathy). 

In addition, the MyHIVTeam app allows you to build teams, post updates about yourself, and send and receive private or group messages. Because people on MyHIVTeam tend to be more open about the status, the response is often more helpful, detailed, and friendly than you might find on a community board.

How We Chose the Best Online HIV Support Groups

Although there are numerous HIV support groups you can find online in places like Facebook, Meetup, and Yahoo Groups, the ones selected aim to replicate the features of an in-person support group.

This includes ensuring members' confidentially, having rules of participation, and delivering some level of oversight and moderation to prevent abusive interactions and misinformation. There must also be a reasonable level of online interaction so that people in need can get a prompt reply to questions and concerns rather than having to wait (or get no reply).

What Are HIV Support Groups?

HIV support groups are vital for many people living with HIV, providing them the means to share their experiences, seek advice and referrals, and receive support from others who fully understand what they are going through.

HIV is different from many other diseases that are characterized by high levels of stigmatization, in part because most cases are sexually acquired. Because of this, as many as 20% of the 1 million Americans living with HIV remain undiagnosed, while fewer than 70% of those on treatment are able to maintain the necessary levels of drug adherence to keep the infection fully under control.

While many people will turn to in-person HIV support groups, LGBTQ+ community centers, and public health clinics are great resources. Those living in rural areas or who fear disclosure connect with online support groups that offer convenience and confidentiality.

HIV support groups are sometimes advertised as HIV/AIDS support groups, although they mean the exact same thing. Because people with HIV can enjoy a near-normal life expectancy thanks to modern HIV therapies, health professionals no longer feel the need to distinguish people by the stage of their disease.

Is an Online HIV Support Group Right for Me?

In addition to offering comfort, HIV support groups aim to overcome the numerous barriers that keep people from accessing care and treatment or taking their medications each and every day as needed. Those challenges may include emotional issues like depression or the fear of abandonment or structural problems, such as accessing affordable treatment, care, or housing.

An online support group may be ideal if you are isolated, either by location or a lack of individuals to safely confide in. While they may not be as intimate as live support groups, these offer privacy and the platform to fully express yourself.

Moreover, many online groups—including those on Facebook—are designed for people of specific ages or cultural identities, providing them the means to communicate in the "same language."

How Are Online HIV Support Groups Structured?

The best online support groups aim to replicate the same features of traditional, in-person support groups: a safe, non-judgmental environment, confidentiality and strict privacy rules, and some level of facilitation to avoid abusive interactions and the spread of misinformation.

Choosing the group that's right for you depends on your individual needs. It may be that you are struggling to cope, are seeking advice or education, or simply desire a sense of community among others like you. There is not a one-size-fits-all solution for everyone.

While some of the more productive online groups are larger in size, there may be smaller groups with shared values that allow you to interact more intimately. By identifying your needs, you will be better able to find a group that meets them.

Are There Groups for the LGBTQ+ Community?

In the U.S., men who have sex with men (MSM) account for around 68% of all new infections. Because of this, there tends to be a greater number of HIV support groups addressing the needs of gay and bisexual men in general.

This is not to suggest that such groups are tailored to the needs of all gay or bisexual men. The interest of gay men of color, for example, remains largely underserved in the U.S. As a result, African American MSM have no less than a 50/50 chance of getting HIV in a lifetime, according to the CDC.

Statistics like these highlight the need for support groups able to address the needs of underserved, high-risk populations, including people of color, youth, women, and transgender people.

How Much Do HIV Support Groups Cost?

By and large, online HIV support groups do not cost anything. Many are run by nonprofit organizations, and even those operated by commercial entities offer free limited access. Registration is typically required, and some sites have eligibility criteria.

Online HIV support groups should not be confused with online HIV counseling, which are often paid services offered by licensed therapists.

Although support groups may help you overcome an emotional crisis, they are not meant to replace a psychiatrist or another mental health professional if you have severe depression or thoughts of suicide.

In such cases, you should call either your state's HIV/AIDS hotline or the National Suicide Hotline at 1-800-273-8255, both of which are available 24 hours a day, seven days a week.

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Article Sources
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