Left behind: Who's being treated for HIV in the U.S. -- and who isn't

Loren Jones takes antiretroviral drugs to suppress her HIV viral load.

Story highlights

  • An estimated 1.2 million Americans are living with the human immunodeficiency virus that causes AIDS
  • HIV/AIDS activists and physicians say that many patients are being left behind because of their life circumstances

A major insurer said recently it would offer life insurance to HIV-positive people because of their rising life expectancies, prompting cheers from AIDS activists. But on the very same day, the nation's top disease control official described an America falling far short in its fight against AIDS.

It might seem a jarring disconnect — but it reflects very different realities dividing the estimated 1.2 million Americans living with the human immunodeficiency virus that causes AIDS.
    While life expectancies are approaching the national norm among white, affluent gay men, about 66 percent of the 1.2 million people living with HIV/AIDS in the United States are not in treatment, imperiling their health and putting them at risk for infecting others.
    African-Americans, mostly gay or bisexual men, account for nearly half of the approximately 45,000 Americans infected with HIV each year. Both African-Americans and Latinos are less likely to remain in treatment than whites. Compared to white men, African American men were more than seven times and Latino men were almost twice as likely to die from HIV-related complications.
    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, 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.
    "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, Calif., 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