NBA Hall of Famer Earvin “Magic” Johnson has inspired millions because of all that he has done with his success despite having HIV: start a foundation, spearhead redevelopment efforts in underserved communities, launch successful businesses ventures, and serve as an NBA commentator.
“I do have it and have had it for 22 years. It’s just laying asleep in my body,” said Johnson. “The virus acts different in everybody … so just because I’m doing well, you might NOT do well.”
Thanks to Johnson’s story and that of other celebrities, a generation of Americans removed from the AIDS epidemic of the 1980s don’t see HIV as a death sentence. Awareness campaigns, billions of dollars in research, and improvements in testing and prevention techniques have lengthened the lives of millions of people with the virus. In recent years, mother-to-child transmission of the virus also dropped by nearly 90 percent.
The nonchalance that people have toward HIV, however, has thwarted ongoing efforts to push back against the virus and ensure that the infected live long, fruitful lives.
A recent study by the Centers for Disease Control and Prevention found that 70 percent of HIV-positive Americans didn’t have the virus under control. Among that group, people either hadn’t received regular medical care or remained unaware of their HIV-positive status, according to a report recently released by the federal agency.
Among those who had not received medication that suppresses the virus, nearly two-thirds knew their status, 20 percent didn’t know that they had been infected, and 14 percent hadn’t been able to stop the virus’ development, even with treatment. Young people fared even worse: 13 percent have achieved viral suppression, according to the study.
Rolando M. Viani, professor of clinical pediatrics at the University of California, San Diego, foresaw this outcome in 2009 when he predicted a “silent epidemic” among young people during an interview with health website Infectious Diseases in Children.
“Young people today have not seen the epidemic killing their friends and partners like those at-risk did in the 1980s,” Viani said. “Among many young people, this has led to the development of a somewhat nonchalant attitude about HIV risk. Many young people do not understand the difficulties they will face if they acquire HIV infection and the enormous challenge of HIV treatment.”
CDC clinical guidelines require that the HIV-infected receive some form of treatment. Antiretroviral medication has been found to significant lessen the impact of HIV in the afflicted and reduce the spread of the virus to their sexual partners by 96 percent, according to the federal agency.
HIV patients can expect the virus to reproduce rapidly in their bodies within ten years without antiretroviral treatment, even if they show mild symptoms. Once HIV turns into AIDS, infected people usually have an average of three years left to live.
“For people living with HIV and AIDS, it’s not enough to know — you also have to go for health care,” CDC Director Dr. Tom Frieden told reporters earlier this week.
“For health care systems, it’s not enough to diagnose patients. You have to take accountability and responsibility for every patient diagnosed in your health center, to provide them with the most sensitive, effective, culturally appropriate care so that they will get onto treatment, stay into treatment, live longer, live healthier, stay out of the hospital and not infect others.”
For some HIV-positive people, however, receiving treatment often proves as much of a burden as the virus itself. While the Affordable Care Act forbids insurance companies from refusing coverage to people with preexisting conditions, many providers have categorized special drugs — including those that treat HIV — so that patients shoulder as much as 50 percent of the total cost.
While Obamacare caps annual out-of-pocket costs at $6,350 for individuals and $12,700 for families, patient advocates say that many HIV patients usually end up reaching the cap before insurance money kicks in. HIV patients living in states without Medicaid expansion fare much worse, making the Ryan White HIV/AIDS Program, a safety net for more than 500,000 HIV-positive people without adequate safety coverage, even more crucial.
Earlier this year, patient advocacy groups filed complaints with the U.S. Department of Health and Human Services in response to what they described as insurance providers’ attempts to shift treatment costs to HIV-positive consumers.
“By putting the drugs that are recommended up on the highest tiers in an unaffordable place, they are in essence discriminating against people with HIV because these are the lifesaving drugs they require to survive,” Dr. Melanie Thompson, a Georgia physician told Reuters in August.
That’s why the CDC plans to expand HIV diagnosis and treatment using its national HIV/AIDS strategy as a guide. The agency will lead efforts to identify and contact people who have fallen out of care. With World AIDS Day less than a week away, Johnson also plans to raise awareness among young people by cohosting events with fraternities and other young groups.