Recently I met with Keith Wolter, who became executive director of the Maui AIDS Foundation in November 2005. My goal was to go over some statistics on Maui’s HIV cases—most importantly, I wanted the number of how many people on the island could develop AIDS. It was not to be.
Wolter said his organization had no idea how many people on Maui are HIV-positive. What’s more, he said state officials don’t know how extensive the disease has spread throughout the state. Because such numbers don’t exist, health officials here and statewide can only guess at the changing face of HIV as we proceed into the 21st century.
Hawai’i isn’t alone. In the U.S., 35 states have some statistical idea of the spread of HIV, though actual research and reported data only goes back to 2000. But those states only represent 61 percent of what officials feel are known HIV cases. As for the other 15 states, which include California, Oregon, Washington, Illinois, Georgia, Massachusetts and Hawai’i, they use a process known as “anonymous code-based testing,” which unfortunately doesn’t provide solid statistics.
“Anonymous testing records are not reportable,” said Pritty Borthakur, who handles HIV/AIDS surveillance for the state Department of Health. “It is only for public service of preventive measure. They are not reportable because they do not contain names to report AIDS or to create a code to report HIV.”
The problem is that officials can’t use anonymous code-based testing for statistical analysis because an individual could test positive in one clinic and then test again in another anonymous exam, which would count as two cases of HIV. As a result, the Center for Disease Control has recommended that Hawai’i change to a name-based code reporting system that, though entirely confidential, would generate proper, countable numbers of the number of HIV-positive individuals across the state.
In June 2005, the state Department of Health proposed to do exactly that and scrap what they referred to as their “Unnamed Test Code” (UTC) system. “[A]fter almost 4 years of collecting data using the UTC,” the proposal read, “Hawai’i still does not have validated HIV data that can be used for our own programmatic purposes or to apply for external funding.”
The department has come up with new data-collection rules, but implementing them is a lengthy process involving public hearings and, eventually, Governor Linda Lingle’s authorization. Given that it’s likely federal AIDS funding to states will eventually require hard statistics, it’s entirely possible the state will move quickly to pass the new rules. Likely, but not guaranteed.
Back in the Maui AIDS Foundation’s bright yet serene office, I asked Wolter to paint a picture of what he thinks HIV looks like on Maui using what national statistics and trends he knew. Wolter wasn’t optimistic.
“Asian Pacific Islander and Hawaiian populations are getting HIV,” he said. “But these folks would rather die than admit they have HIV. The shame runs deep here. They are kept silent.”
It gets worse. “If a man has sex with a woman with HIV his chances of contracting the disease are one in 500,” he said. “If a woman has sex with a man with HIV her chances of contracting HIV are one in 50. Female cases are on the rise.”
Wolter said the reason for the order of magnitude difference between men and women has to do with how human beings have sex. Put simply, the act of penetration exposes a woman to far more fluids than a man.
Of the 93,500 of women living with AIDS in the U.S., 64 percent were exposed through heterosexual contact. And AIDS is still on the rise for women with the number of diagnosed females increasing 10 percent in the years between 2002 to 2004. In Hawai’i the trend is also on the rise: women constituted five percent of cases prior to 1996, but 12.2 percent of cases by 2004.
There are, of course, plenty of drugs on the market, but none cure AIDS. The idea that people no longer die of AIDS because of Highly Active Antiviral Therapy (HAART) is a myth. Antiretroviral therapy achieved widespread use around 1996, but does not purge AIDS from the human body. In fact, while these treatments can delay the onset of AIDS, the drugs themselves damage. In a list of the top 10 causes of death for people in Hawai’i aged 25 to 44, AIDS ranks seven.
The irony here is that in Hawai’i, like the rest of the U.S., state and local health officials know how many people have AIDS. Those numbers are reportable, countable and definable, while HIV is not. Of course, 10 years ago all these people were HIV cases. While officials can infer trends from the AIDS numbers, they need proper HIV information. Without it, state health officials have no idea how many AIDS patients they’ll be dealing with a decade—much less a year—from now.
Wolter said he still deals with common misconceptions about HIV and AIDS—myths begun a generation ago that classify AIDS as a gay man’s disease, with hospices full of sickly homosexual men solemnly living out their final days.
For instance, he gave me a quick pop quiz on AIDS.
“What are the four body fluids that you can contract HIV from?” he asked me.
“Uh, saliva, blood, and… semen,” I stammered. “I can’t think of the fourth”
I flunked. There is not enough HIV in saliva to transmit the disease. The fluids are actually blood, semen, vaginal fluid and breast milk.
Wolter said that today, the majority of Americans suffering from AIDS are African American. In fact, AIDS is the leading cause of death among African Americans aged 25 to 44. In Hawai’i, AIDS has actually declined among the Caucasian population but increased in the Hispanic, African American, Asian Pacific Islander, Hawaiian and Filipino populations. (See accompanying chart).
Wolter and health officials agree the best way to control the spread of HIV is through prevention. In fact, the Maui Aids Foundation has a slogan called “The ABC’s of HIV Prevention.” They are “Abstinence, Be faithful, and use Condoms.”
But to prevent the disease’s spread, health officials need to know who is getting it now. And that requires hard data.
Across the country, prevention efforts have successfully decreased the number of HIV infections by focusing on groups exhibiting risky behavior, like sharing needles or engaging in unprotected sex. But here in Hawai’i, state officials have yet to act.
“AIDS is sex and drugs without the rock and roll,” said Wolter. “American culture is about youth, sex, health and beauty. AIDS attacks all of those things. But we need to be able to talk about the virus. It is human. There is no shame in sexuality.” MTW