Domestic AIDS Crisis Drops off News Agenda

Wrong-headed reporting reinforces complacency among those most at risk for contracting HIV.

by Sally Lehrman

When VaxGen Inc. announced long-awaited safety and effectiveness data on its AIDS vaccine in February 2002, headlines varied wildly. ìAIDS vaccine fails in studies,î trumpeted the New York Times. ìVaccine appears to work,î USA Today contradicted.

Why the discrepancy? The San Francisco Chronicleís blunt headline offers a clue: ìAIDS vaccine mostly a failure: Doesnít help whites but may help some minorities.î

The news disappointed more than VaxGenís investors. ìThe African American community heaved a big, collective sigh ñ this isnít for us or about us,î said Dan Hlad, communication associate for the Black Coalition on AIDS in San Francisco. 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, wrong-headed reporting reinforces complacency among those most at risk for contracting HIV.

ìIf you donít see yourself reflected, thatís what comes to your mind: ëThis doesnít really affect us,í î says MÛnica 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 U.S. 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 2003 that HIV infection among men who have sex with men had surged 17 percent over the past three years. . ìThe AIDS epidemic in the United States is far from over,î Dr. Harold Jaffe, director of the CDCís National Center for HIV, STD and TB Prevention, had warned in a press release that July. It is moving fastest among 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 ìThe End of AIDS: The Twilight of an Epidemicî 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 donít seem to be aware that, despite those handsome mountain climbers in AIDS pharmaceutical ads, antiretroviral therapy doesnít 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 ìcocktailî their nickname suggests. Journalists must make it clear that these treatments, while they have added years to patientsí lives, havenít transformed the disease into a mere inconvenience. They donít 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 hasnít stabilized at a low level. In recent years, the decline in mortality has steadily slowed ñ from 17 percent in 1998 to 5.9 percent in 2002.

Historic Distrust U.S. news also offers little clue that infection rates are rising most rapidly among people of color. Heterosexual African Americans reported 72 percent of new infections among women from 1999 to 2002, according to data from 29-state sample CDC released in November 2003. Among men over that four-year period, African Americans accounted for 42 percent of new infections. The number of HIV diagnoses increased the most among Hispanics.

Despite the huge impact of the epidemic on women, Media Tenor found that the 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, who are experiencing the highest U.S. infection rates among women, appeared in AIDS news only three times over nine months. There were no Hispanics, Native Americans or Asians in any of the reports analyzed.

Contrary to stereotype, more -people of color in the United States ñ 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 that 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 Native Americans remained horribly inadequate for decades.

Disparity in care hasnít 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.

AIDS service providers agree that lack of confidence in the healthcare 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 Associationís diversity programming committee. He suggests stories about new tests that donít involve a needle stick and that emphasize the importance of going back every six months for a recheck. ìMistrust of medicine is a very big issue,î Hassan says. ìYet a great deal of the mistrust results from mystery. Journalists can fight this, we really can.î

Reporters also 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 researchersí 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.

Leaping Economic Barriers Journalists continue to overlook the core of the AIDS story, blindfolded in part by our own socioeconomic status. Like other upper-middle class professionals, we tend to take water, sanitation, garbage disposal, vaccination, basic medical care and other public health concerns for granted, suggests A. Cornelius Baker, executive director of the Whitman-Walker Clinic, a comprehensive HIV care facility in Washington, D.C., Most of us donít understand the health care delivery system very well, let alone follow it closely. ìThe media donít have standards and accountability for public health,î Baker says. ìWhy are thousands of people every day dying from a disease that is preventable or treatable? We need to print healthy births, infection rates and deaths from different diseases on a weekly basis and really begin to promote public health as a value.î

Trends in the current epidemic underline the importance of public health policy and delivery as a beat. Both Latinos and African Americans are far less likely to enjoy private health insurance than whites. More than half of both groups depend on Medicaid, with nearly one-quarter uninsured. The under-funded, historically inadequate Indian Health Service is the only source of healthcare for 60 percent of Native Americans.

In fact, many people of color discover they have AIDS in an urgent visit to the public hospital. Distrust, lack of access, embarrassment about sex and the stigma of HIV often conspire to keep them unaware of their infection status and out of treatment until severe illness forces them to find help. More than 40 percent of people of color testing positive for HIV from 1990 to 1999 were diagnosed with AIDS within one year ñ although the disease typically takes 10 years to develop. ìA large proportion of the black community finds out theyíre HIV positive in the emergency room,î says Daniel Hlad from the Black Coalition on AIDS in San Francisco. Across the country at Philadelphia-based AIDS Services in Asian Communities, referrals from urgent care facilities soared in 2003. . The small agency has had to expand its services to take hospital patients into account, adding site visits, family counseling, and AIDS services brochures in several languages for them. ìFor us, itís dramatic,î says Laura Lau, program operations coordinator.

Within Diversity Lau must develop programs for a diverse population about 60 percent African American, Latino and white, with the other 40 percent mostly Cambodian, Thai and Vietnamese refugees. She emphasizes that Asians defy homogenized interventions, in part because the population can differ radically from region to region. The same is true for every community, service providers emphasize. They urge reporters not to assume that prevention and treatment will work equally well across a racial group. Spirituality, language and history contribute to critical differences among Native Americans, for example. ìThe Navajo have two AIDS agencies on the reservation ñ thatís rare,î explains Irene Vernon, a University of Colorado professor and author of Killing Us Quietly: Native Americans and HIV/AIDS (University of Nebraska, 2001). ìIn Alaska, they didnít have a word for ëcondom.íî

Follow The Money AIDS is a money story as much as it is a human tragedy. Despite the increasing infection rates, funding is dropping throughout the country. ìThat puts us in a real crunch,î says Deirdre Maloney of the Colorado AIDS Project, which serves mostly white men, many of whom also struggle with mental illness, homelessness and substance abuse. ìWe have to say ënoí to clients more often when they need tokens for transportation, housing, and counseling,î Maloney says. ìThey go out, they arenít stable, they arenít taking their meds, they may be spreading it. Itís just bad all around.î

Private donations have collapsed, causing AIDS service organizations across the country to lay off staff and cut programs. Whitman-Walker Clinic, for example, told the Washington Blade that support from individuals, corporations and foundations had dropped by $3.5 million over 2001-2002. [http://www.washblade.com/2003/9-19/news/localnews/clinic.cfm]. 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 donít know they are, the change in policy could have a significant impact, Maloney says. The increasing focus on an abstinence-only approach also has AIDS service providers worried. ìItís really starting to feel uncomfortable ñ like someoneís looking over our shoulder,î she worries.

Maloney and her colleagues called upon journalists to ask tougher questions and begin to cover public health more aggressively. Itís 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 the Whitman-Walker Clinicís Baker. ìJournalists can do a better job by being informed and educated, and by pressing to cover these issues as a beat,î Baker says. ìJournalism must transform itself. Health issues can no longer be relegated to a special Tuesday section. They should be as closely covered as the Pentagon.î

Sally Lehrman is an award-winning reporter and writer with byline credits in national consumer, specialty, and science media including Scientific American, Health, the Washington Post, Salon.com and NPR. She specializes in medical and science policy reporting. Lehrman serves as national diversity chair for the Society of Professional Journalists and is active in several organizations that promote diversity in the media.