This is an edited version of a story originally published by News Watch. The full piece can be found at www.newswatch.sfsu.edu.
When VaxGen Inc. announced long-awaited safety and effectiveness data on its AIDS vaccine in February 2002, headlines varied wildly. “AIDS vaccine fails in studies,” trumpeted The New York Times. “Vaccine appears to work,” USA Today contradicted.
Why the discrepancy? The San Francisco Chronicle’s blunt headline offers a clue: “AIDS vaccine mostly a failure: Doesn’t help whites but may help some minorities.”
The news disappointed more than VaxGen’s investors. “The African-American community heaved a big, collective sigh – this isn’t for us or about us,” said Dan Hlad, communication associate for the Black Coalition on AIDS in San Francisco. Indeed, few reporters delved into the seemingly promising results among ethnic minority participants or questioned why the study included so few people of color, which made it nearly impossible to interpret those results.
AIDS has dropped off the agenda for most journalists, and the results are profound – especially in communities of color. A lack of familiarity with changes in the epidemic has led to gap-filled and sometimes off-target coverage. Many reporters work from the assumption that AIDS affects mostly a gay, white, male population in the United States and that new medicines and prevention strategies have contained it. AIDS service organizations say such misguided coverage has contributed to lackluster public interest and a plunge in funding at a critical time. Perhaps more dangerous, they argue, is how wrong-headed reporting reinforces complacency among those most at risk for contracting HIV.
“If you don’t see yourself reflected, that’s what comes to your mind: ‘This doesn’t really affect us,’ “ said Mónica Taher, people of color media director for the Gay and Lesbian Alliance Against Defamation in Los Angeles.
MISSING THE STORY
A look at the data shows that journalists are missing a dramatic story and the chance to help save some lives. Nearly 1 million people in the United States now live with HIV, and the number of infections grows by about 40,000 every year. The Centers for Disease Control and Prevention announced in November that HIV infection among men who have sex with men had surged 17 percent in the past three years. “The AIDS epidemic in the United States is far from over,” warned Dr. Harold Jaffe, director of the CDC’s National Center for HIV, STD and TB Prevention, in a news release in July. It is moving fastest within poor communities of color.
Certainly, journalists have become far more sophisticated about AIDS coverage in some ways. Medical reporters understand how the HIV virus gets into cells and how the latest drugs work against it. Culture and sports editors know how to cover a seropositive celebrity with sensitivity and fairness. Political writers have kept focus on the U.S. role in the AIDS funding crisis throughout the world. Announcements on infection trends, celebrity campaigns for AIDS prevention, and corporate reports on new medications do get column-inches and air time. But ever since The New York Times Magazine declared “The End of AIDS: The Twilight of an Epidemic” in 1996, coverage has steadily declined.
The focus now is primarily on Africa, with AIDS news mainly coming in bursts related to political events and international conferences. One comprehensive study by Media Tenor International, a content analysis firm founded by journalists in Germany, highlights a powerful skew in media attention to the subject. In the year 2000, ABC, NBC and CBS featured just 77 reports on AIDS and HIV on their evening news programs, about 0.6 percent of all stories. Nearly 60 percent, or 44 of those, were aired during the World AIDS Conference that year in Durban, South Africa.
The thrust of coverage in the United States has shifted from a story about crisis to one of managed care, according to Joy Van Fuqua, associate professor of communication at Tulane University. But such a picture can be cruelly false.
Many reporters don’t seem to be aware that, despite those handsome mountain climbers in AIDS pharmaceutical ads, anti-retroviral therapy doesn’t necessarily return patients to vibrant health. The regimens require a complicated schedule of dozens of pills at specific times of day and are far from the delightful “cocktail” their nickname suggests. Journalists must make it clear that these treatments, while they have added years to patients’ lives, haven’t transformed the disease into a mere inconvenience. They don’t work for everyone, and for some, the side effects can be overwhelming. Drug resistance remains a major problem, and while the death rate has dropped, it hasn’t stabilized at a low level. In recent years, the decline in mortality has steadily slowed – from 17 percent in 1998 to 5.9 percent in 2002.
U.S. news also offers little clue that infection rates are rising most rapidly among people of color. Heterosexual African-Americans made up three-quarters of the women infected from 1999 to 2002, according to data from a 29-state sample the CDC released in November. Among men, African-Americans accounted for 42 percent of new infections over that four-year period. Among all races, HIV diagnoses increased the most among Hispanics.
Despite the huge impact of the epidemic on women, Media Tenor found that U.S. network news shows highlighted the stories and perspectives of men, who made up 75 percent of those quoted as sources or depicted for more than five seconds within a given report. Black women appeared in AIDS news only three times in nine months. There were no Hispanics, American Indians or Asians in any of the reports analyzed.
Contrary to stereotype, more people of color in the United States – primarily blacks and Hispanics – have died from HIV-related causes than whites since the beginning of the epidemic. Journalists covering AIDS today must be aware of these trends and acknowledge the historical relationship of U.S. communities of color to medical research and the health system, which has made their experience of HIV and AIDS quite different from that of white men.
Still seared in the memory of African-American communities is the Tuskegee syphilis study, in which 400 black men were not told they had the disease and were denied treatment until 1972, when a federal health worker revealed the deception. Recollections of segregated hospitals remain fresh. Other ethnic groups have similar histories of betrayal by government agencies and medical institutions. Reproductive scientist Gregory Pincus first tested the original progesterone-only birth control pill among Puerto Rican and Haitian women without informing them of side effects, for example, and a U.S. government campaign attempted to popularize sterilization there. Medical care provided by the U.S. government to American Indians remained horribly inadequate for decades.
Disparity in care hasn’t disappeared. After a review of more than 100 studies, the National Institute of Medicine concluded in 2002 that bias, prejudice and stereotyping continue to contribute to unequal treatment. The report singled out HIV as an example: One 1994 study found African-Americans less likely than non-minorities to receive antiretroviral therapy; another concluded in 1999 that both blacks and Latinos received protease inhibitors and preventive treatment for opportunistic infections less often than whites.
Reporters could expose problems such as the troubling lack of diversity in clinical trials. While the National Institutes of Health now requires investigators to include women and minorities in research, white males still make up the bulk of study participants. People of color are reluctant to sign up, and researchers’ outreach attempts are uneven at best. As in the vaccine trial, this disparity can make results hard to interpret, and it contributes to a cycle of distrust and lack of information about which treatments work best for whom.
AIDS service providers agree that lack of confidence in the health care system discourages people of color from getting tested for HIV and seeking treatment. Journalists could help make the tests seem less fearsome and identify culturally competent centers where men and women can be certain of confidentiality, says Hassan Sudler, chair of the National Lesbian and Gay Journalists Association’s diversity programming committee. He suggests stories about new tests that don’t involve a needle stick and that emphasize the importance of going back every six months for a recheck. “Mistrust of medicine is a very big issue,” Hassan said. “Yet a great deal of the mistrust results from mystery. Journalists can fight this, we really can.”
FOLLOW THE MONEY
For journalists, AIDS is a money story as much as it is a human tragedy. Despite the increasing infection rates, funding is dropping throughout the country. “That puts us in a real crunch,” said Deirdre Maloney of the Colorado AIDS Project, which serves mostly white men, many of whom also struggle with mental illness, homelessness and substance abuse.
“We have to say ‘no’ to clients more often when they need tokens for transportation, housing and counseling,” Maloney said. “They go out, they aren’t stable, they aren’t taking their meds, they may be spreading it. It’s just bad all around.”
Private donations have collapsed, causing AIDS service organizations across the country to lay off staff and cut programs. Whitman-Walker Clinic in Washington, D.C., for example, told the Washington Blade that support from individuals, corporations and foundations had dropped by $3.5 million over 2001-2002. Public funds at state and federal levels are deteriorating as well.
In April 2003, the Centers for Disease Control announced that community-based prevention efforts were not doing the job and that future monies would be directed toward stopping HIV positive people from transmitting the virus instead of helping others avoid risk. The change could jeopardize $90 million in funding going to community programs, according to the Kaiser Family Foundation.
Considering that one in four infected people don’t know they are infected, the change in policy could have a significant effect, Maloney says.
Maloney and her colleagues called upon journalists to ask tougher questions and begin to cover public health more aggressively. It’s time to ask what U.S. leaders are doing to stem the epidemic and who are in positions of accountability for its ongoing devastation, insists A. Cornelius Baker, executive director of the Whitman-Walker Clinic.
“Journalists can do a better job by being informed and educated, and by pressing to cover these issues as a beat,” Baker said. “Journalism must transform itself. Health issues can no longer be relegated to a special Tuesday section. They should be as closely covered as the Pentagon.”
Sally Lehrman is a freelance medical science and health issues reporter in California. She is chair of SPJ’s Diversity Committee.