No longer a death sentence, HIV care is changing as patients become elderly

Once a death sentence, HIV infection is now a lifelong condition with which you can live a long, healthy life. But as life expectancy of the much stigmatized disease increases, physicians must now grapple with how to care for HIV at the same time as old age.

MultiCare primary care physician Rachel Safran, who has specialized in HIV care for many years, has seen how care has changed. When the sexually-transmitted disease first arose in the 1980s and long afterward, patients would typically not receive treatment until their immune system showed signs of damage. Medications were not terribly effective and often were toxic, she said.

“HIV quite honestly it was a death sentence in the 80s and 90s and people didn’t expect to live very long. But now people living with HIV can lead a totally normal life,” she said.

Because of this improved treatment, HIV infection now rarely develops into AIDS – a disease that develops from the human immunodeficiency virus and was the cause of high rates of mortality for patients last century.

Also a medical researcher, Safran helped develop a new HIV medication lenacapavir, which was approved by the FDA in 2022. The drug is specifically engineered to replace other drugs when patients become resistant to them over time. According to Safran, that need becomes greater the longer a patient has HIV.

“It works in a totally different way than other drugs. And that’s essential because it can be added on to other medications if those are failing,” she said. Typically those who have had HIV for decades start to run out of options because their medications stop working.

A principal investigator on the initial studies for the drug, lenacapavir is now being researched for its possible use in HIV prevention.

According to a 2021 Washington Department of Health report, 61% of Washingtonians living with HIV were older than 55. But between 1983 and 2021 a majority of those with HIV were under 45.

But because life expectancy used to be so low, it is still unclear how HIV interacts with the disease that comes with old age and how best to treat it, Safran said. HIV is a disease that attacks the immune system, so even if it is fully treated, an HIV positive individual may have a more difficult time when combating an unrelated disease

“Even if well controlled and on treatment, there is some amount of background inflammation from the HIV virus being in the body. We believe that contributes to issues like heart disease and cancer and cognitive decline as we age,” she said.

Spokane HIV awareness advocate Dale Briese believes that HIV is “aging people faster,” even when it is fully treated.

“The HIV positive person is an old and aging population with a lot more co-morbidities. Diabetes, heart disease cancer – all that hits so much harder and earlier in life because the virus is still there,” he said.

Briese was diagnosed with HIV in 1985 and has lived to 60 years old so far. Even through his treatment for HIV, Briese has had several medical emergencies he believes were exacerbated by the virus.

“I’ve had decades with the thought of dying, and so there’s some trauma that is really, really present in my life,” he said.

HIV in Spokane

As of 2023 there are 15,000 cases of HIV in Washington state with 400 new cases diagnosed each year. According to a Department of Health report, Spokane County has 828 people living with HIV.

Since the 1980s the Spokane AIDS Network has existed to give support to those with the virus. According to SAN director Grant Ogren, the organization currently serves between 100-200 people in Eastern Washington.

At times providing medical care, SAN’s larger focus now is giving community to those they serve. While some may believe stigma for the sexually-transmitted disease is of a bygone era, most served by SAN are still not open to those in their life about their HIV status.

“They’re still hiding. You are looked down on being HIV positive as dirty and a bad disease when it’s no different than having heart disease or diabetes,” Ogren said. “You take a drug to maintain your resistance to the disease and you get up the next morning and you take it again.”

Those who come to SAN are afraid of being shunned by their family, and afraid of being discriminated against at their work, he added

“I have clients that tear the labels off their medicine, so it doesn’t have anything written on it. They don’t want their kids to find out,” Ogren said.

Even though it can be spread in other ways, HIV is still seen as a “gay disease” – one that denotes the infected as immoral and reckless and dangerous, he added.

Correctly treated HIV patients typically achieve an undetectable viral load. This improves the patient’s health but also ensures the patient cannot transmit the disease to someone else, even through unprotected sex. According to the Washington Department of Health, 79% of those being treated for HIV in Washington have an undetectable viral load.

In the same report, 52% of new HIV infections are transmitted through sex between two men. But it is also increasingly common for it to be transmitted by heterosexual sex or through drug use.

In the past year SAN began hosting a women-only support group. According to Ogren, most of the women in attendance are heterosexual immigrants from Africa who contracted HIV from their husband or needle usage.

“These women already can live precarious lives and don’t want their employer to find out about their status. They are so afraid they’ll lose their job or their housing or their friend group,” he said.

Brise, who is on SAN’s board of directors, said stigma is the “biggest barrier still to people accessing care or disclosing to their providers.” Safran said there is “no doubt” stigma remains top of mind for those living with HIV.

“I hope and believe that has gotten better. But there is still so much the broader public does not know about the lives of those living with this disease. We still need more public health campaigns and education about HIV – that it is not a death sentence,” she said. “I still unfortunately have young people who come when they’re newly diagnosed and ask how long they have to live.”