Since 1982, more than 690,000 Americans have died of HIV-related illnesses. That’s more Americans than were lost in any armed conflict in this century or last – combined.
It has been nearly 40 years since a new public health threat first appeared in the United States on June 5, 1981, when the Centers for Disease Control & Prevention reported five cases of Pneumocystis carinii pneumonia. Identified as a gay-related disease, it would later be labeled as Acquired Immunodeficiency Syndrome (AIDS). Some years later, the human immunodeficiency virus (HIV) caused AIDS was discovered, and it started the dark legacy that lives on today.
Fortunately, things are changing. Significant advances in care and treatment mean people with HIV are living longer.
In other words, HIV is turning gray.
In the U.S. today, young adults with HIV-infection who adhere to their antiretroviral treatment maintain lower viral loads and live longer. Many such patients are expected to mirror someone’s life expectancy in the general population, which is around 78 years. Antiretroviral therapies have transformed HIV/AIDS from a death sentence to a manageable, chronic illness like diabetes, epilepsy or cardiovascular disease, according to a 2017 World Health Organization report. This stands in stark contrast to the early days of the AIDS epidemic – before there was an HIV-specific test – when life expectancy was often one or two years after diagnosis.
Indeed, what once seemed unthinkable is now more common. According to the CDC, half the people living with HIV-infection in 2016 were 50 and older. That is not to suggest the epidemic is over, because that same year, there were 10,944 deaths among people in the U.S. with HIV aged 50 and older.
Still, the demographics of HIV are shifting. Next year, as many as 65 to 70 percent of people living with HIV-infection will be 50 or older. But as the face of the epidemic has aged, so have the challenges facing people living with HIV-infection.
For many long-term survivors, the evolution of this epidemic has been mentally and emotionally taxing. After all, they watched so many around them lose their battles with the disease. For patients who lived through the dark days of the epidemic, it has also taken its toll on their bodies. AIDS-defining illnesses among people aging with HIV have been replaced with HIV-associated non-AIDS conditions. Common are cardiovascular disease, lung disease, certain cancers, dementia, and liver disease, according to HIV.gov.
Other troubling trends are emerging. Co-morbidities among long-term survivors typically associated with people in their 60s and 70s are striking two decades earlier. And despite ambitious plans to end the epidemic by 2030, our public health system needs to adapt to these new challenges. Older HIV patients struggle to cope with many obstacles – among them mental health problems, homelessness, and co-morbidities – daily.
Research has shown that anxiety, mood disorders, and depression are common among people living with HIV-infection, yet fewer than one-half of the cases get recognized clinically. We have an opportunity to integrate HIV/AIDS programs and mental health care, which would improve these patients’ overall health and outcomes. Long Term Survivors Awareness Day, which is now recognized nationally on June 5, represents an excellent first step in raising awareness.
As HIV grays, the need for a community-based long-term care system is needed more than ever. A successful program must be blind to disabilities while focused on patient-centered care and a sliding-fee scale to ensure that people who can afford to pay more do.
The need is great and growing. A Biden Administration cannot ignore reality: community-based long-term-care services for all Americans is a national priority. But unlike other federal programs, we must build solutions based on income, so the wealthy pay their fair share.
Jeffrey Lewis is the President and CEO of Legacy Health Endowment in Turlock, Calif. The views expressed are his own.
