HIV experts say improved treatments have reduced fear

The good news about the once-terrifying disease HIV is that it’s now tamed and shoved into a small box: an FDA-approved home test kit you can buy at the grocery store.

The bad news is the same. HIV has been so defanged in a series of medical successes that doctors get more upset at a diagnosis than their patients.

Doctors occasionally find it necessary to confront a ho-hum, just-another-pill reaction with the harsh reality: It’s still deadly. That pill can cost thousands of dollars a month. And it’s still risking the lives of many partners.

The journey from panic-inducing epidemic to mundane disease is “the bane of public health,” as one Denver expert puts it.

The announcement last week of an at-home test marked the success of medicine at the cost of productive popular fear. How do you combat what is still an epidemic when a test and a treatment seem so routine?

“People in their 20s, they’re pretty unfazed,” even when handed positive HIV test results, said Dr. Michelle Barron, an infectious-disease specialist with the University of Colorado Hospital and medical school. “They say, ‘Yeah, my friends take pills.’

“The normalization of the disease, now people live relatively normal, healthy lives, and that’s a great thing,” said Barron, echoing the conflicting thoughts of other Colorado HIV experts. “But not having seen people die changes people’s behavior. They just don’t get it.”

Many medical officials, though, welcomed the landmark step of at-home testing, some with more reservations than others. The current mantra among HIV experts is “test and treat” — they want nearly all adults to be tested for their HIV status.

“Fantastic,” Denver Health’s Dr. Mark Thrun said of the at-home-test announcement. Thrun believes OraQuick’s over-the-counter kit will cost between $17 and $60, based on existing test prices.

Thrun, Denver Health’s director of HIV prevention, said many patients at risk for carrying HIV still find stigma in seeking a test. Doctors, meanwhile, are often still uncomfortable recommending testing to high-risk patients without seeming presumptuous or judgmental, Thrun said.

When it comes to testing, “normalization” is exactly what public-health advocates should want, he said. “We know very well that when people know they have HIV, they keep their partner safe, and overwhelmingly so.”

Philip Doyle, 47, sees the generational difference and wonders what it would have been like to have either choice or apathy. He didn’t find out he had HIV until he landed in Denver Health in 2008, with HIV-related pneumonia.

“The fear of knowing — that’s the attitude that got me into the hospital,” said Doyle, who is now healthy on HIV drugs and serves on a patient advisory board. Doyle said he feels a “payback” responsibility to tell all ages to get tested.

“It’s so much better to know,” he said.

New HIV cases peaked in the 1980s in the United States and have been relatively steady since the late 1990s, according to the Centers for Disease Control and Prevention.

In Colorado, state health officials call new cases “stable,” at about 384 for 2011, from 436 in 2007. A total of 16,900 HIV cases have been diagnosed in Colorado since the first case in 1982, and about 11,300 of those patients are still living.

Nationally, the CDC estimates about 1.2 million Americans have HIV, with as many as 1 in 5 not knowing it. Annual new cases in the U.S. peaked at 130,000 and are now about 50,000.

A positive HIV test has not been a death sentence for years now. A drug cocktail that halts and shrinks the virus keeps HIV patients alive for decades, apparently to normal mortality.

The “cocktail” itself, which used to be up to 10 pills, four times a day, is now down to one pill a day for many patients, Barron said. Studies show patients’ life cycle may speed up — earlier heart disease or cancer than expected, for example — but they live relatively healthy lives.

Researchers still want a vaccine.

They are also debating using the same treatment cocktail as a preventive measure in high-risk patients who don’t yet have HIV. Such an approach would be an expensive prophylactic and would send other dangerous signals, Barron noted — “So you don’t get HIV, but you get herpes, syphilis — those have big impacts too.”

Some HIV experts raise more issues over home testing.

They like the idea of more people knowing if they have HIV; yet they worry a home-alone subject might not know where to turn with a positive test, or may intentionally do nothing at all.

Public-health officials want those patients to consult with a doctor, confirm their test and start care. They also want to instruct the patient about transmission and do partner-tracing to help stop the spread of the disease, as required by surveillance laws.

And “some people don’t receive that news very well,” said Ralph Wilmoth, an HIV expert working with the Colorado Department of Public Health and Environment.

“The last thing we want is for people to ‘freak out’ without proper support,” said Dr. David Cohn, who founded Denver’s infectious-disease clinic in 1984.

The current “mixed message” state of HIV has another label, Wilmoth said. Younger sexually active people have “the Magic Johnson model in mind,” he said.

An older generation might remember how stunning Johnson’s HIV-positive announcement was in 1991. Now, people see Johnson as “very healthy,” a far different outlook on the disease than “when there was no effective treatment and people died from it,” Wilmoth said.

Doyle, the patient advocate, said he will try to spread the message of “knowledge is power” as at-home tests become available in stores this fall.

“I represent a very fortunate segment of the population that has the opportunity to grow old now,” he said.

Michael Booth: 303-954-1686, mbooth@denverpost.com or twitter.com/mboothdp