What People Really Want to Know

For our World AIDS Day 2010 section, we wanted to capture the diversity of the AIDS community. So, we reached out to people across the world -- mostly those who have never written for us before -- and asked them to guest blog. These columns are written by people who are living with HIV, have been affected by HIV, or work in the field.

Gerry Christopher Johnson
Gerry Christopher Johnson

Five years ago, thanks to an HIV testing campaign launched by the Kaiser Foundation and Viacom, Common looked up at us every five minutes from under his newsboy cap with intense black eyes and confidently cooed three smooth words: "Knowing is beautiful." Coming from the conscious rap star, it was as cool, breezy and romantic as "Love of My Life," his recent collaboration with Erykah Badu. His message was simple, it was sexy.

It was so 2005.

Knowing is beautiful for those whose results turn up negative, but for people not so lucky, knowing can be absolutely frightening. Ever since the recession rocked the economy off of its hinges in 2008, with jobs, savings, and employer-provided health insurance going by the wayside, I have met people who barely want to know the status of their 401K, let alone their health. Indeed, people are reluctant to find out what they think they can't afford.

It becomes evident, then, that the inherent joy in knowing one's status is not enough to push many people to get tested. For those who have yet to take that swab or feel that prick, for those who do not think they can handle the financial implications of a HIV positive result, they need to know that, if they are indeed positive, there are organizations out there to support them and affordable medication out there to save their lives. And for them to know that, Americans must ensure that this is true.

I recently wrote an article about the recession's impact on HIV/AIDS in the Delaware Valley region. When interviewed, every single Philadelphia HIV/AIDS organization said the same exact thing: that the economy has changed the landscape in two different ways. First, they said, their clients needed more help than ever. Jobless and disproportionately in poverty, there was no way many of their clients could pay rent, let alone pricey HIV medications..

Secondly, they said, AIDS organizations are now scrambling to provide more services with less money. With Pennsylvania's 34 percent slash to HIV funding in July and dwindling donations from cash-strapped do-gooders, service providers worried about their ability to keep up with the rising demand.

The decrease in funds to those on the frontlines of AIDS outreach is not just a Pennsylvania problem. The AIDS Coalitions of Southern New Jersey, the region's only drop-in center offering centralized services for low-income HIV-positive people, shut its doors in August, citing "cuts in governmental support of 40 percent over five years and ever-shrinking private-sector support."

In 2009, California Governor Arnold Schwarzenegger slashed $52 million in AIDS funding from the state budget, forcing Los Angeles' largest AIDS organization to cut more than 20 percent of its staff. This year, the California legislature tried to restore the much-needed funding. Governor Schwarzenegger vetoed the legislation.

Also at stake around the country are AIDS Drug Assistance Programs delivering treatment to low-income patients. With many people unemployed and underemployed in this economy and a record 43.6 million Americans living in poverty, many HIV-positive patients cannot pay the $26,000 a year price tag that antiretrovirals can entail. Therefore, state-administered ADAPs are vital to ensuring that people—especially African Americans, those most dependent on the programs—get life-saving treatment.

Nevertheless, ADAPs are underfunded nationwide, with more than 3,800 people on waiting lists in nine states as of November. Eighteen states have even tightened restrictions on ADAPs, including Ohio, which has removed people from the program, and New Jersey, which lowered its income cap from $54,000 to $32,000 a year.

To provide relief to the states, President Obama has announced $25 million in emergency funds to ADAPs. However, advocates say that amount is a pittance compared to the $126 million needed to fully restore the states' HIV treatment programs. In response, a frustrated Michael Weinstein, head of the Los Angeles-based AIDS Healthcare Foundation, posed an ominous question to the L.A. Times: "Why should anyone be tested if they don't have access to medications?"

That is the question that must be tackled by people around the world on World AIDS Day, as global AIDS donations shrank by $100 million between 2008 and 2009. It's a question that must be tackled in America going into the new year with a new slate of politicians, and, inevitably, new cases of HIV.

The answer lies in investment: When the government and individuals give to AIDS organizations and ADAPs, it sends the message to people wary of getting tested, louder and clearer than any MTV PSA, that their health is a priority no matter the result. Of course governments have to watch their wallets closely in this economy, but adequately funding AIDS service providers and ADAPs now is far cheaper than footing the bill for avoidable AIDS hospitalizations later.

Although Common isn't around to rap this with his trademark charm, five years later, it needs to be said: Knowing one's HIV status is beautiful. But in this economy, knowing that there is access to affordable, life-saving treatment is imperative.

Gerry Christopher Johnson is writer, editor and cultural critic. He writes on LGBT issues as a columnist for Philadelphia Weekly.