Thirty years after first AIDS diagnosis, screening for HIV is easier than ever

Every Friday, Toni Philbrick rolls a fat wheeled leather briefcase and a small plastic cooler into the 23rd Street offices of the Neighborhood House of North Richmond.  The building embodies the cold utilitarianism of institutional design employed in mid-20th Century hospitals: thick white concrete walls punctuated by a few small windows and metal and glass doors.

Educational posters urging people to get tested for HIV.

Philbrick sets up shop in a room in the middle of the building’s first floor with her colleague, Tracey Walker: readying paperwork and setting out HIV tests. Then, she tells the coordinators of Neighborhood House’s substance abuse support groups, which are held on the second floor, that she’s open for business.  After that, it’s a waiting game.

Philbrick has worked for the Contra Costa County Health Department doing HIV outreach and testing for about six years.  A compact woman with a high voice, she’s cheery and affirming, her cadence deliberate and confident. But business is not booming on the day that I met Philbrick at Neighborhood House. “This is a really slow site,” Philbrick says.  She said that on an average Friday, between five and 10 people usually show up to be tested for HIV.

The room is sparse, with a few old, institutional plastic and metal folding chairs, and an old wooden desk. On the brown walls, a poster touting the ease of taking an oral HIV test by comparing it to a lollipop, a banana or other “things that are put in the mouth,” hangs side by side with its Spanish language counterpart.  Another poster—this one says that HIV does not have a face, that anyone can be HIV positive—covers the window in the old wooden door.

This summer marks 30 years since the first AIDS diagnosis.  Since then, advancements in anti-retroviral drugs used to treat the disease and better disease management practices have rolled out every few years. But until 2004, the way that health providers tested for HIV, the infection that causes AIDS, remained the same: a sample of blood, oral fluid or urine was taken to a lab and tested for HIV antibodies.

This method of testing for HIV was effective, but it could take weeks to get results from the test, which can be an agonizingly long wait for people worried they may have been exposed to the infection. Many people simply did not return for their test results. With the development of a new test in 2004, clinics can deliver results in just 20 minutes, and that has allowed HIV/AIDS support organizations to move people from diagnosis to treatment more quickly.

With the rapid HIV tests, results are available within 20 minutes.

“It’s a scary test to take.  I can’t imagine having to wait that three weeks, because that 20 minutes is really scary for people,” Philbrick said. “You can see the wheels turning in their head making a list of everything they’ve done.”

If the test comes back negative — in other words, if it shows no presence of HIV antibodies — it is considered final. But if the test comes up positive for HIV, Philbrick says that another, confirmatory test is required; this time a blood-draw test that is sent to a lab.  This is the mandated procedure, intended to be extra cautious, but the quick test is over 99 percent accurate, and is more sensitive than other available testing measures.

The HIV test the county now uses, called OraQuick, is made by OraSure Technologies, and was approved by the Food and Drug Administration in 2003 to test blood samples for one strain of HIV.  In 2004, it was approved to test for antibodies to both the HIV-1 and HIV-2 strains in oral fluid.  That year, Contra Costa County Health Services started using test in all of its facilities and testing sites, according to Carla Goad, who heads up the county’s HIV testing program.  The tests cost about $12 each, which Goad says is cheaper than the blood draw tests because you don’t have to pay for laboratory technicians to run the test.

The test kit consists of two parts:  The testing device, which looks like a home pregnancy test with a flat paddle on one end, and a vial of developer solution.  The paddle is rubbed along the testee’s gums, then placed in the developer solution. Twenty minutes later, it shows whether anti-HIV antibodies—proteins that are produced when the body is trying to fight infection—are present.  At the Neighborhood House site, it’s given one-on-one by either Philbrick or her associate Tracey Walker.

The test is essentially a gum swab. It's a little salty, Philbrick says, but it's better than a needle.

In the 20 minutes it takes for the results to come through, Philbrick goes over a questionnaire and talks to clients about their sexual history and practices, and the basics of protecting themselves from HIV and other sexually transmitted diseases.  If a person tests negative, she uses that information to make a recommendation about when to get tested again, because it can take up to six months for HIV to become symptomatic and register on the test.  “We always try to give them a holiday so they know when they should come back.  Do it by Halloween or something,” Philbrick said.

If the quick test comes back positive, Philbrick takes two more tests to confirm the diagnosis.  One is a finger-prick test that uses a drop of blood on another OraQuick test, and then another oral test is given and sent to a lab for confirmation.  She makes an appointment for the client to return within a week and get their confirmation results.

Perhaps the best benefit of the quick test, Philbrick said, is that people find out their status immediately, and if the test comes back positive for HIV antibodies, once the confirmation results come back she can connect people to doctors, health services, and support groups.  She can also get referrals to pave the way for them to use other county services like food banks, lawyers and transportation.  “It helps them maneuver around a the umbrella of services that can otherwise get kind of confusing,” she said.

Public health experts say the advent of rapid testing has profoundly changed the testing process and improved their ability to offer services to those who test positive.  Kevin E. Bynes, who heads the AIDS Project of the East Bay’s HIV testing and outreach program, has been working with HIV/AIDS organizations since the mid-90s, when he started doing outreach work as a student at Clark Atlanta University. “I tell people my career was hijacked by HIV.  As a black gay man in school for social work in Atlanta and looking for internships, I was pushed into HIV.  And I just kind of stayed,” he said in a gentle voice which still bears a slight Southern inflection.

Bynes says reducing the time spent waiting for results has dramatically increased the number of people who stick around to get them. Before the quick test, he said, people had to return to the testing site to get their lab results.  Many of them simply did not come back. “When we were testing people and sending them home to stew, we were losing about 60 percent of people, who just never came back for their test results,” he said.  With the rapid test, he says it’s practically unheard of for people not to stick around to get their results.

Philbrick is positive about the advancements that have been made for treating HIV. “Thirty years ago I don’t know if I could have done this job. But there’s such hope today.”

Without knowing their status, positive people could infect more sexual partners.  And if a person does not know they are positive, they cannot begin pharmacological treatments for HIV, which can massively improve their ultimate prognosis and stave off the progression from HIV to AIDS for years.

Waiting weeks to get results also made testing more emotionally draining, something Bynes said he knows firsthand. Years ago, he said, he’d had a scare, and was worried that he had possibly been exposed to HIV.  He had to wait two weeks before he got news that he was negative. “It’s the most torturous thing I’ve ever been through in my life,” he said.  “It’s a torturous thing to go through two weeks of guessing and hoping and praying and bargaining.  And the [rapid] test kind of eliminates that.”

Although the testing process is more streamlined and effective than ever, there are still barriers to testing, Bynes said.  “Stigma is really a big deal,” he said.  He said a lot of people do not have conversations with their sexual partners about their HIV status, because they’re afraid their partners will assume that they are HIV positive if they initiate such a conversation.  And if people aren’t willing to have that conversation, he said, people are not likely to get tested.  In some cases, he said, people just don’t want to know.

That stigma extends to seeking HIV treatment, even after people have gotten tested, Bynes said. “We have folks dying because of stigma, they didn’t go and get the medical attention they needed because the shame they have around being HIV positive,” he said.  “I’ve seen young people, 19, 20 years old, die because they didn’t go get the medical attention that they needed when they could have lived long.”

The AIDS Project East Bay, which is based in Oakland, is planning to expand into Richmond, setting up a satellite office focused on outreach and education first, and then possibly expanding to provide the whole range of clinical, therapeutic and case management services they offer at their Oakland offices.

Bynes says that they’re going where they see a need. “What we’re starting to realize is that there aren’t enough services in Richmond,” Bynes said.  “Most of the services are concentrated in Oakland, which makes a little sense because there are more cases in Oakland, but people are transitioning all the time between Oakland and Richmond and across the East Bay.”

In Contra Costa County, there are roughly 1,875 people living with HIV or AIDS, according to data available on the county’s public health services website.  According to the Carla Goad, men who have sex with men make up the majority of new reported HIV cases, about 60 percent, along with intravenous drug users who account for about 20 percent.  Over the last few years, the numbers of new reported HIV diagnoses have been increasing, from 44 in 2006 to 87 in 2009.  In 2010, the last year with data available, 51 new HIV cases were diagnosed in the county.

But the data on HIV cases only tells part of the story.  Data on new, positive HIV diagnoses have only been collected by public health agencies in California since 2002.  Before then, only diagnoses of AIDS cases were reportable in the state. “We needed a way to know what was happening to people with HIV,” Goad said.  “So the Centers for Disease Control started noting HIV diagnoses separately from AIDS diagnoses.”

But new drug treatments which became available in the mid-90s vastly increased the amount of time between HIV diagnosis and the development of AIDS, meaning that many people infected with HIV — but who had not developed AIDS — prior to 2002 would not have been tallied in the county’s data. The county has used statistical modeling to fill in data on HIV infections before 2002, but that information is not necessarily as accurate as the information collected now.

Finally, Goad says, HIV infections are undercounted because nationally, one in four people who are HIV positive do not know their status. Many people simply never take the test.

Goad says that as reporting HIV infections has become a more common practice among doctors and hospitals, and the data has become “mature,” infection rates have also shown a steady increase, partly because reporting became more consistent and partly due to an actual rise in the rate of HIV infection.

It’s important for everyone to get tested and know their HIV status Goad says, which is a major sea change in public health policy from the beginning of the AIDS epidemic, when testing services were targeted towards gay men and intravenous drug users. Since that the early days of the epidemic, HIV has spread into many more populations, including women, children and men who have sex with men but don’t identify as gay. Twenty percent of those living with HIV or AIDS in Contra Costa County are female, according to information on the county’s website.

“Early on in HIV we talked a lot about discrete risk populations.  If you’re engaging in ‘risky behavior,’ in quotation marks, then you should get a test.  And we missed individuals that way.  Because some people don’t identify themselves as being at risk,” Goad said. “So by saying everybody should their HIV status we’re able to make sure that no one gets missed that way.”

On the Friday I met Philbrick at the Neighborhood House, she was tired. Although nobody came by in the first two hours for testing, it had been a challenging week, she said.  She’d spent four hours talking with a man who was just tested positive for HIV, reassuring him and telling him that HIV was not a death sentence. “I don’t usually have that time, but I did this week and I’m just grateful that there’s not any cuts [to HIV health services budgets] because people need it,” she said.

The work can be tough, she says, because she will inevitably deliver bad news to some of the people she tests.  But she is upbeat about the prospects for survival, the availability of effective treatment and services for people with HIV. “If you do test positive, well the meds have changed and if you get into care, the life span can be 75 or 80 years,” she said.  “Thirty years ago I don’t know if I could have done this job.  But there’s such hope today.”

The easiest way to find where to get an HIV test is by texting your zip code to “KNOWIT” (566968), which will return a list of nearby testing facilities from the CDC’s registry of testing sites.  The database can be accessed and mapped at www.hivtest.org. For information on the county’s free testing sites that are open to the public, click here. The tests are available for free to people who are uninsured or underinsured, and they do not turn anyone away or check finances.