Rising Up to the Challenge
RiseUpToHIV Breaks Down Stigma One Social Media Project at a Time
by Connie Rose

RiseUpToHIV was founded by Kevin Maloney, formerly of Albany, New York, and boasts a social media audience to date of more than 7 million viewers! This very active group has sent in more than 700 My Positive Message videos, ordered more than 700 No Shame T-shirts (I have the black and white one), and uploaded more than 300 #UequalsU profile photos. So, it came as no surprise that this campaign has two full-time volunteers who help with projects.

CJ Stobinski from Ohio completing a triathalon

But, let’s go back to the beginning for a moment. After facing down the multiple challenges life was throwing his way, Kevin was inspired by the many obstacles he had risen above and named his campaign RiseUpToHIV, thereby launching a life of advocacy that continues to grow, with RiseUpToHIV recently becoming a 501(c)3 non-profit. While there are no plans to grow into an ASO there are various possibilities to partner with one in the future. Currently, RiseUp receives zero funding from outside sources and runs on a shoestring budget, using the limited personal funds of their founder to promote projects on social media.

Projects like last year’s “My Positive Message” video series, where PLWHA and their allies submitted a short video detailing their positive message for others living with or affected by HIV/AIDS. Or projects like creating the RiseUpToHIV campaign picture frames, and last year’s #NoShameBeingHIV+, which generated a lot of interest. This year’s frame, released at the end of May, supports the #UequalsU campaign.

Kevin Maloney is partnering with Bruce Richman from Prevention Access Campaign (PAC)

Maria Mejia

to help promote this new reality-altering, scientific information. When I reached out to Kevin one of the first things we discussed is why he decided to support the #UequalsU, or Undetectable = Untransmittable, campaign.

Kevin said that in May 2016 Bruce Richman, founder of Prevention Access Campaign [A&U, December 2016], reached out to him in a private message to learn more about RiseUp and the No Shame campaign. Kevin took this time to research #UequalsU and after carefully reading the consensus statement and information about PAC and finding out for the first time in his life that PLWHIV could not transmit HIV to their sexual partners if they have a sustained undetectable viral load for more than six months, he knew that such a simple, yet profound message needed to get out to the masses. Since then they began strategizing, and have been working closely ever since.

“It’s been amazing to see how far PAC has come, working with community partners around the world to get the message out. RiseUpToHIV is one of over hundreds of community partners dedicated to sharing this information,” notes Maloney.

The indescribable connection RiseUp’s campaigns inspires can be seen in the numerous people who participate in them. I spoke with a few of those people and the resounding consensus among them was that “the science proves #UequalsU and PLWHIV deserve full disclosure of all information.”

Dr. Carrie Foote

RiseUpToHIV is reaching all hues of people, positive and HIV-negative and that is the ultimate goal of today’s advocates. Advocates who are working on outreach must strive to reach all people because all people are at risk and deserve authentic, truthful facts. Many PLWHA, for example, are high-risk cases for isolation, and social media is the one thing that gets through even that barrier. This connection reaches people where they are most vulnerable and have feelings of loss and worthlessness; many succumb to depression. Social media campaigns like RiseUpToHIV are fast becoming the single most effective means of reaching people living in those situations. From the moment a person logs online they are inundated with information so that is why today’s advocates are using this same method, social media, to bombard them with healthy, joyful, encouraging information, even if they are isolated.

There is no pressure to join a campaign. For many, it’s enough seeing others participating to give them hope to successfully make it through another day. It’s that hope that fuels the imagination and fills a person with enough courage, if they see it enough, to, possibly, one day step out of the shadow of stigma and find the courage to proclaim that they are going to be neither overshadowed nor defined by HIV. Self-empowerment is not automatic; it takes time. RiseUpToHIV does not want anyone to become discouraged if they are “not there yet.”

It’s important to remember that the HIV community is growing in both directions. We have our newly diagnosed persons as well as our long-standing community that is aging with HIV. RiseUpToHIV states that reaching people where they are in their journey is fundamentally important to them and wants to ensure the community also knows that “the long-term goals of Rise Up To HIV are to promote better services for long-term survivors of HIV/AIDS. Survivors who many view as warriors coming back from a battle who need the continued support and care from the communities they live in. Remaining hopeful for a cure for all is of course, the goal for all PLWHA….”

HIV advocates are furthermore aware that aging with HIV is the next frontier and the next

Robert Breining

visible challenge for case managers, peer advocates, and grassroots campaign managers doing outreach work around the world. Our increasing elder community is fast becoming our next highest “at risk” community and it’s going to take the HIV community as a whole to come together to ensure they are not overlooked and forgotten.

The founder of RiseUpToHIV perceives his dream becoming much more interactive with a focus on elder and low-income needs, such as food security. For example, many organizations are seeking to incorporate food pantries into their projects because so many in the elder, low income and the HIV community consistently use them.

A future project that RiseUpToHIV has in the works is called Strike Out HIV Stigma & Hunger. “Around the country there are many food programs that specifically cater to PLWHA,” notes Maloney, about why RiseUpToHIV wants to develop and organize three-hour bowling events in cities across the U.S. with prizes, entertainment, and HIV testing and a raffle. Communities could raise money for each strike or spare someone bowls, and donate any monies raised back to the local food delivery or pantry services that help people living with HIV. Considering many communities already have bowling leagues, and food pantries, and even HIV-specific food pantries, this idea could potentially be just the life boost these neighborhood pantries need to put their food supply over the top and ensure that the guests who use the facilities are getting fresh food and produce and not outdated food to survive on.

Davina Conner

As a contributing writer to A&U, each time I take on an assignment I am fortunate enough to interview someone from whom I learn something new. Sometimes I learn about new, enticing, upcoming projects or I meet someone whose upbeat attitude replenishes my very spirit and that is what RiseUpToHIV did for me during this unforgettable interview. Kevin did not want this article to be solely about him but I did get him to give me a final thought to end with: “I am someone that always has a million and one ideas running through my head on how to better the lives of people living with HIV, empower hope, and inspire lives. Who knows what my next idea will be, but I hope you will continue to follow.”

Follow RiseUpToHIV on Twitter @RiseUpToHIV and on Instagram @riseuptohiv.

Connie Rose lives in Las Vegas and is the founder of the blog Livingapozlife. She is a mother and grandmother living and loving life as a LTS for more than twenty years. Currently, she’s a volunteer at The Gay and Lesbian Center in Las Vegas.