Scientists, researchers, public health groups and many others worldwide are working tirelessly to address HIV.
One such group in Indianapolis, Brothers United, began in 1999 as a group of concerned community members passing out condoms on the street. Today, the organization’s programs focus on prevention, care, advocacy and support for Indiana’s Black residents living with HIV.
“A few Black men got together and said, ‘We need to start having a conversation about HIV in our community,’” Terrell Parker, program director at Brothers United, said about the group’s inception. “The epidemic had shifted from the white community, and it was heavily impacting the Black community.”
With countless organizations working to learn more about the disease, our understanding of HIV — what it is, how it spreads, what a diagnosis means for a person’s future — is constantly evolving.
From his perspective with Brothers United, Parker recently shared some insights with the Indianapolis Recorder. Here are four things from that conversation that struck a chord:
‘If you’re Black, you’re
high-risk’
When discussing who’s most at risk for contracting HIV, Parker did not mince words.
“If you’re Black, you’re high-risk,” he said.
Parker explained that half of all gay Black men will contract HIV, compared to about a quarter of gay Latino men and about one in 11 gay white men.
But the problem extends beyond men.
“After Black gay men, Latino gay men and white gay men, Black women are the most likely to contract HIV,” Parker said. “Black women are most likely of any group of women to contract HIV.”
Further, Parker said, one in eight Black people living with HIV doesn’t know they’ve got the disease, and Black people who are HIV positive have worse outcomes than people of other races.
“(Looking at the stats), that’s when you start to see how the epidemic has changed and how it’s very specifically hitting the Black community, regardless of your sexuality,” he said.
Parker said one unique aspect of Brothers United — which, by the way, works with women in addition to men — is that, of all of Indiana’s groups working with people who have HIV, Brothers United is the only one focusing its work solely on the Black community.
“All of our messaging, programming, efforts and initiatives are targeted specifically to Black people in Indiana,” Parker said.
‘HIV in 2017 is a totally preventable disease’
Parker said Brothers United puts a lot of emphasis on getting the word out about PrEP (pre-exposure prophylaxis), a daily regimen of medicine to help high-risk people avoid contracting HIV.
Beyond spreading information, Parker said Brothers United caseworkers will help clients get their hands on the necessary drugs.
“If you’re a young person who comes into Brothers United and you have an HIV test, and your HIV test is negative, our goal then is how do we keep you negative?” Parker said. “That means making sure people have access to PrEP, which means having access to health insurance.”
Parker said research has shown PrEP to be effective in preventing the spread of HIV. He mentioned one particular study done in San Francisco, which focused on 1,500 couples in which one partner was HIV negative and one partner was living with HIV. Over the study’s three-year period — during which the couples had condomless intercourse and the HIV-negative partner took PrEP — zero new infections occurred. Parker said with those kinds of results, PrEP can completely change the way HIV impacts communities.
“HIV in 2017 is a totally preventable disease,” he said. “We can end HIV.”
‘Life expectancy is pretty much the same’
In addition to being preventable, HIV is treatable, Parker said, explaining that most people living with the disease can reach “viral suppression” by taking one pill a day.
Viral suppression means a person’s “viral load” — the amount of HIV in their blood — is undetectable, which happens because the medication, if taken according to a doctor’s orders, prevents the virus from making copies of itself. Parker said a person living with HIV who is virally suppressed does not reach the point of an AIDS diagnosis and is also unlikely to pass the virus on to someone else. Parker said after a person has been diagnosed with HIV and linked to care, it could take about three to six months to reach viral suppression.
“If we can test people early, get them linked to care, they can live healthy, live happy, and have a regular life expectancy,” he said, adding that with proper treatment, the disease is as manageable as diabetes or high blood pressure, and people living with HIV can have a life expectancy essentially equal to someone who’s HIV negative.
“If you take your medication every day, you take it how your doctor prescribes it, you’re going to be healthy. It’s going to work,” he said.
But none of this matters if people don’t get tested to learn their HIV status, Parker said, adding that the Centers for Disease Control and Prevention recommend annual testing for anyone between the ages of 13 and 64 who is sexually active. Despite the recommendations of experts, many people still will not get tested.
“Some people would rather not know than to have to face the consequences,” Parker said.
Brothers United works hard to help people get tested, visiting college campuses, skating rinks and other places to reach the community. Parker said some people even plan HIV testing house parties, inviting loved ones (and Brothers United) to their home to learn their HIV status.
HIV advocacy is about more than treating HIV
“HIV doesn’t have to be life-threatening, but it is life-changing,” Parker said, which is why care coordinators at Brothers United take a holistic approach with anyone who seeks their guidance.
“Yes, HIV is what helped start Brothers United, but our mission says we help enhance the health and wellness of the community,” he said. “Our mission doesn’t explicitly mention HIV, because we have to look at health from a more holistic standpoint and understand HIV is a part of the puzzle. But a lot of the factors that cause someone to be high-risk for HIV can be the same factors that cause someone to have diabetes or high blood pressure.”
As part of the holistic approach, case managers at Brothers United help with anything from navigating the health insurance marketplace to finding housing, from obtaining food assistance to coping with the emotional stress of being diagnosed with HIV.
“We’re trying to think about what barriers do people have that’ll prevent them from going to the doctor? What can we do to remove some of those barriers so the client can focus on their health?” Parker said.
For more information on Brothers United, visit brothersunitedinc.org.
