HIV/AIDS activists and physicians say that despite the significant medical advances in treating the disease, many patients are being left behind because of their life circumstances. Groups that once held angry demonstrations against government agencies and pharmaceutical companies to speed access to affordable, life-saving HIV medications now emphasize the socioeconomic barriers that keep some people living with HIV from consistently obtaining and using those drugs to remain healthy.
“There is an extreme disparity when it comes to treating HIV and AIDS,” said Anthony Hayes, the managing director of public affairs and policy for GMHC, formerly Gay Men’s Health Crisis.
“It’s critical, when we talk about ending the epidemic, to not just to talk about the science. These are people who are incredibly vulnerable as it relates to all aspects of society. In contrast, more affluent HIV-positive people—specifically gay white men—are able to access care, they have jobs, they have homes, they have access to life’s basic necessities that many do not,” he said. “It’s very hard to talk about HIV prevention with someone who is homeless or someone who isn’t sure where they’re going to find their next meal.”
It’s not a simple matter of financing care for those who can’t afford it. Treatment and social services are currently available for low-income and uninsured or underinsured patients under the Ryan White Act. Once-long waiting lists for free HIV medications have virtually been eliminated. But basic survival—money to live, a place to sleep—often takes precedence over seeking help and closely managing a disease that can be symptom-free in its early stages, doctors say.
Loren Jones, 63, of Berkeley, California, was homeless when she was first diagnosed with HIV about 30 years ago. And for many years she wasn’t symptomatic, so her diagnosis was rarely at the top of her list of worries, Jones said. “It actually sinks to the bottom. HIV becomes another thing on your, like, to-do list.”
Jones eventually was able to find a government-subsidized studio apartment in Berkeley and qualify for Social Security disability benefits. She recently had a bout with eczema, a serious skin rash that can be a marker for the progression of HIV-related disease. Her blood pressure spiked, leading to discovery of kidney disease, a common complication of HIV.
With her health problems now coming to the fore, she is finally receiving HIV treatment.
Newer approaches to controlling HIV/AIDS focus on a “continuum of care,” from the very beginning. Federal health officials are trying to track improvements or setbacks at every stage: testing, linking the newly diagnosed to care within three months, getting HIV-positive people to remain in treatment, prescribing them antiretroviral drugs, and suppressing HIV viral load—the amount of HIV in the blood—to a very low level.