In the summer of 1987 Robert Gillum, then 21, went to see a doctor for swollen glands in his neck. The glands had been swollen for about a week, and Gillum had no idea that it was a sign his body was fighting an infection. Nor could he have imagined the kind of infection he had.
When lab results came back and Gillum learned that he was HIV-positive, he was shocked. But he’s not the only one who was – or is – in the dark about their status.
HIV may not be making national headlines like it did in the ‘80’s and ‘90’s. But it should. Way too many Americans today have never been tested for it, so don't know whether they’re carriers of the virus.
Among all 1.2 million Americans living with HIV, the CDC estimates that about 15 percent are unaware of their HIV-positive status.
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According to a November 2017 report by the Centers for Disease Control, half of Americans recently diagnosed with HIV had been living with the virus for at least three years without realizing it. (One-quarter had been infected for more than seven years.)
Indeed, among all 1.2 million Americans living with HIV, the CDC estimates that 15 percent are unaware of their HIV-positive status. And people who don’t know they have HIV are thought to be responsible for 40 percent of new HIV transmissions.
The Center for Disease Control recommends that everyone between the ages of 13 and 64 get tested for HIV at least once as part of their routine health care. For those with specific risk factors, the CDC recommends getting tested annually.
Just as troubling as the lack of HIV testing and awareness about one's status is this: way too many of those who have been tested and found out they have HIV aren't taking the medications that today can effectively suppress it. That's why, while HIV testing is important, so is what comes after it.
For instance, recently diagnosed individuals need support to mentally and emotionally process their status. And they may also need help linking to HIV treatment (or addressing barriers like transportation or lack of medical insurance that they have to linking to treatment).
Gillum puts it this way: “If I had just found out I had HIV, it wouldn’t have been enough. When you just focus on the [results of the] test, you forget that people have a whole life outside of the HIV test.”
Gillum is personally aware of the importance of what comes after the test.
When he was diagnosed in 1987, it took him seven years to accept his status. During that time, he lived with intense denial, fear, and shame.
He didn’t seek HIV treatment during those years (and was initially hesitant to seek treatment for substance abuse issues he was also experiencing). Nor did he disclose to anyone that he was HIV-positive except for his aunt and mother.
“For me, I first had to deal with my self-esteem,” Gillum says, explaining that he grew up in a church environment where there was stigma around sexuality and substance abuse. “First I had to get clean [of pot, cocaine, and alcohol], and then I had to start to heal emotionally and mentally so that I could deal with my status.”
In 1994 Gillum finally came out publically. Some of the first people he told were those in his church.
“[I’d been] watching people die in the church and the church would say that they'd died of cancer or that they'd died of pneumonia, but they’d never say that the person died of complications due to HIV and AIDS,” he says. “So I wanted to get out that HIV affects people in the church … and that we’re not talking about it … It was important for me to start [my activism] at the place where my life started.”
That same year, Gillum began doing HIV outreach work professionally for the Minneapolis Urban League. He’s since been an HIV outreach worker for several hospitals and clinics and is currently a community health specialist at Hennepin County’s Red Door.
“Information can change behavior,” Gillum, now 51, says of his work. “And the more you know the better choices you can make.”
To that end, Gillum says he tries to meet clients where they’re at and asks questions that let them direct him.
“Where do you feel most comfortable getting treatment?” he might inquire. “What are the best hours that work for you to see a provider? Do you need assistance, like bus tokens, to get to your medical appointment? Do you need me to make the appointment for you so that you don’t have to call from a household where you might not be able to maintain your confidentiality?”
In addition to taking a patient-centered approach, Gillum stresses to clients that things are drastically different than when he tested positive in 1987.
Now with advances in biomedical technology people can receive treatment so that their levels of virus are so low they’re undetectable. And once they’re undetectable, they can’t transmit the virus. So, with proper treatment, an HIV-positive person can safely be in a sexual relationship with someone who is not HIV-positive. And they can have children without passing on HIV, too.
Says Gillum, “There’s so many things you can do once you’re in care.”
HIV testing is covered by most health insurance plans and is provided by most primary health care providers. Three Hennepin County affiliated health providers offer HIV testing, HIV counseling, and linkage to HIV care and treatment. These services are offered at low or no cost for people who are under-insured or uninsured.
• Red Door at Hennepin County Public Health Clinic, 525 Portland Avenue, Minneapolis; 612-543-5555
• Hennepin County Medical Center Positive Care Center, 915 Seventh Street South, Minneapolis; 612-873-2700
• NorthPoint Health & Wellness Center, 1313 Penn Ave. N., Minneapolis; 612-543-2500
Written by: Lori Imsdahl