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Long-term Survivors

Aging with HIV: Roy Ferguson

Roy Ferguson

Despite multiple drug resistances, survivor guilt, and AIDS diagnoses, these poz folks prove you can do more than just survive HIV.

In 2008, Roy Ferguson was laid off from the job he’d devoted 14 years to. No longer able to afford the premiums, he lost his insurance. Then 57, he went off antiretroviral medication for two years. 

His viral load skyrocketed to over 700,000 and his T cells dipped to under 28. He lost his home to foreclosure. Ferguson fell into a depression and was coming to a point of accepting his inevitable death. After all, when he was first diagnosed he was told he wouldn’t see 50. Now he’d surpassed that by nearly a decade. 

Instead of giving up, Ferguson found his way to the Edward Hines Jr. Veterans Administration Hospital. It was there, Ferguson says, he came back to life. After nursing him back to health, the Veterans Affairs doctors started him on his third regimen of antiretrovirals.  Meanwhile, other VA providers helped Ferguson work through his foreclosure, homelessness, bankruptcy, and depression.

Today, Ferguson is one of Chicago’s most outspoken activists. He’s lobbied federal legislators on behalf of those with HIV, and is currently a voting member of the Chicago Area HIV Integrated Services Council, which is part of the Chicago Board of Health. He’s even spoken with Illinois Governor Bruce Rauner about issues concerning veterans, the poor, and the HIV community at large. 

“I am a blessed man because of the good people at Edward Hines Jr. Veterans Hospital,” he says. “I carry the stories of my fellow HIV-positive veterans with me in everything I do now as I advocate for everyone who is living with HIV.” (Ferguson has chosen his words carefully, to make it clear “we are not dying” with HIV.)

At 65, Ferguson has been living with HIV for over two decades. Partially due to his break in treatment, his HIV has become multi-drug resistant.  He has “M184V, V118I, T215F, and M36I resistances,” which means he’s resistant to multiple classes of drugs including reverse transcriptase inhibitors (RTIs), protease inhibitors (PIs), and nucleoside reverse transcriptase inhibitors (NRTIs). He’s also been diagnosed with hepatitis C, a common comorbidity for those living with HIV. 

Ferguson is now on his fifth antiretroviral regimen, this one a combination of Triumeq (itself a combo of abacavir, dolutegravir, and lamivudine) and Viread (tenofovir). Even with all that, he’s managed to get his viral load in control and is now undetectable, so he can’t transmit HIV to others. 

Still, Ferguson admits, he continues to see the obvious signs of aging, which affects how he monitors his meds. 

“I had a heart attack a year ago,” he explains, “but lots of men in their 60s with a family history of heart problems, and who are not HIV-positive, have heart attacks. I work out at the gym four to five times a week. The gym I go to in the morning is populated with men and women from mid-60s to their mid-80s, with one World War II veteran who is 94 and in the gym three days a week. The commonality is they, we, are all living well. Exercise is one of the best ways for those of us living with HIV to live the best we can.” 

This is a drastically different life compared to what Ferguson experienced when he first went on treatment in the 1990s.  His first regimen of AZT and Sustiva worked well for him at the start, but after a year or so in treatment he began having central nervous system side effects due to Sustiva. 

In addition to “extreme grogginess in the morning and wide-ranging mood swings,” Ferguson says he had nightmares “where I was hurting myself or others. The dreams were very dark.” But when Ferguson shared his concerns with his doctor, he recalls, the doctor, “didn’t seem to react to my issues.”

These nightmarish side effects were so disturbing, Ferguson says, he reached a point where he “would rather die than ever deal with the side effects [again].” He stopped taking the meds and soon ended up in the hospital. During that hospital stay, Ferguson recalls, he fired his infectious disease doctor. 

Ferguson argues that veterans, especially those dealing with post-traumatic stress disorder, shouldn’t be given Sustiva. He says the VA no longer prescribes efavirenz (the generic name equivalent) as a first-line HIV treatment.  

Now retired, Ferguson spends his time volunteering at the VA, the AIDS Foundation of Chicago, and the Chicago Board of Health. 

“I’m lucky and blessed to be able to do the work I do now — best job ever!” he says. “No pay, but the most rewarding work I have ever done.”

Read more from our Long-Term Survivor series here.

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