Activist discusses challenge of growing old with HIV

November 30, 2012 by Jean-Louis Santini

Old age comes faster and hits harder for those infected with HIV, a fact aging health activist Ron Swanda knows all too well.

Swanda, 66, diagnosed as HIV-positive in 1989, takes six different drugs to keep his illness in check and to treat a litany of from cardiovascular disease to depression.

He is taking stock, as World AIDS Day approaches on December 1, of the long, circuitous and often heart-rending course of his life since his diagnosis more than two decades ago.

He knows he is lucky to be alive, having lost many loved ones to AIDS, which is caused by HIV, over the years.

"The number of people who died still breaks my heart. Many close friends here in (Washington) D.C. and in New York and in other parts of the country passed away," he said.

And while the advent of in 1996 changed an HIV diagnosis from a to that of a chronic, managed disease, Swanda said the long-term effects of living with the virus—and with the drugs that keep it in check—are still being uncovered.

Anthony Fauci, a highly regarded expert in the area of , noted that "the good news is that people who are infected with HIV, with antiretroviral drugs their projected is essentially approaching normal."

On the other hand, he said, doctors have noticed that many of old age "tend to occur with a greater frequency in people who have been HIV infected for a long period of time."

The virus appears to send the immune system into overdrive, and "when the immune system is chronically activated, essentially all the time, that leads to that deleterious effect of promoting the ," explained the doctor, who heads the National Institute of Allergy and (NIAID), the federal health institute responsible for AIDS research.

From outward appearances, Swanda—trim and fit-looking—is the picture of health. But the longtime gay activist, who works in Washington with other HIV-positive senior citizens, said he feels older than his years.

"For instance, I got cataracts at 66 years old. My mother got cataracts when she was 76 years old," said Swanda, a volunteer with the National Association of People with AIDS.

He also suffers from high blood pressure, is in the early stages of heart disease and osteoporosis, and has been diagnosed with "pre-diabetic" symptoms.

Depression also seems to be a common ailment for those living with HIV.

"I think almost everybody with HIV is taking anti-depression medication of some sort," Swanda said.

Meanwhile, the antiretroviral drugs on which Swanda depends to keep his HIV in check cost an exorbitant $1,800 per month. Although health insurance covers 90 percent of the cost, he still has to dig into his pocket to pay $4,700 each year.

And the high price tag appears to be only one of the costs associated with taking the powerful drugs over decades, said Swanda.

He suffers from high cholesterol—a known side effect of the HIV-fighting antiretroviral medication.

"The antiretroviral causes your cholesterol to go way up, so you take anti-cholesterol medication," he said, but that comes with side effects of its own.

"I started to take anti-cholesterol (medication) at (a) fairly young age... and there are side effects to that—muscle deterioration," he said.

The US Centers for Disease Control and Prevention said that by 2015, nearly half the people with HIV will be aged 50 or older, and that a growing number of people are getting infected with the virus when they are over the age of 50.

"In the US they are starting to do more research on the long term use of the antiretrovirals. That is the good news. The bad news is that there is a long way to go" towards understanding what the drugs do to the body," Swanda said, adding that the effects of the drugs have also not been thoroughly tested in older populations.

He hopes that research into these issues will make it possible for future patients to age more gracefully with HIV.

But his activism is also motivated by the memory of HIV-infected friends who, unlike him, were not lucky enough to grow old at all.

"They are gone, I am here, and it's a reason why I am an activist," he said.

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