A cause for inspiration

The past 25 years have seen an extraordinary amount of progress made in the battle against HIV/AIDS, but as Marc Longpre discovers, there is still a great deal of work that needs to be done on the communications front

The past 25 years have seen an extraordinary amount of progress made in the battle against HIV/AIDS, but as Marc Longpre discovers, there is still a great deal of work that needs to be done on the communications front

When Katharine Kripke, assistant director for the National Institute of Allergy and Infectious Diseases (NIAID) in the vaccine research program, talks about her research into the general public's understanding of AIDS vaccine research, it becomes apparent that she faces a mammoth task.

"We did a survey on awareness, and it was eye-opening in teaching us the level of misinformation out there, especially among African Americans. That's the basis for the work we're doing now," she says. "A large proportion of respondents believed you could get HIV from the vaccine or that a vaccine exists and is being kept secret. There's a huge mistrust for government - which is understandable, but we need to overcome that."

Kripke says the results also highlighted just how much a stigma still exists surrounding the disease. Measuring success can be a relative exercise. In some communities, even persuading people to talk about HIV/AIDS openly can be registered as progress.

Customized plans

What the research also uncovered was the importance of working within plans customized to each community. Earlier this month, the Academy for Educational Development (AED) - the nonprofit agency working with NIAID on an initiative to raise awareness for AIDS vaccine research - announced its selection of 14 partners around the country.

When AED came onto the account late last year, it teamed up with communications firm GYMR and issued an RFP for local partners in areas worst hit by the disease. The selection, which will give up to $35,000 annually in funding to local nonprofit, community-based groups through a subcontract with the agency, is seen as crucial to efforts on the ground.

"The biggest challenge around the initiative is that the populations that have been most affected don't have a relationship of trust with their government," says Cornelius Baker, AED senior communications adviser and lead on the NIAID account. "It really requires not only listening to these people, but we have to be developing and sustaining a relationship with the communities, which is where these partnerships come in."

The local partners include AIDS Alabama in Birmingham, AL; Gay City in Seattle; Latino Health Institute in Boston; and Planned Parenthood in Nashville, TN. AED will announce national partners later this summer, Baker says.

The local groups have been awarded funding through March 2009 that will allow them to hold town hall meetings, conduct community education programs with other local organizations, and provide educational materials about HIV vaccine research.

It is a fitting time to look back at the progress made in the fight against AIDS and perhaps an even more fitting moment to look at what the future holds. This month marks a decade since President Bill Clinton gave a stirring speech, urging Americans to do everything in their power to help find a vaccine for the disease within 10 years.

Of course, there is no vaccine today. But the day the speech was given, May 18, 1997, has marked HIV Vaccine Awareness Day (HVAD) ever since. While the date has been a reminder that there is much still to be done on vaccine research, it also reminds communicators how far they've come in a relatively short amount of time.

NIAID's initiative has evolved through five years of work with Ogilvy Public Relations Worldwide that ended last fall, and since then, with AED, into a wide-reaching program that now works year-round to educate the public on the nature of scientific research, separating myth from truth.

As vaccine research picked up steam, the team uncovered a disturbing trend: Clinical trials for drugs in the pipeline at all major pharmaceutical companies were largely devoid of African Americans, Hispanics, and other groups hit hard by the disease in the US.

Research education

"I think the stigma around HIV, in general, has to do with people's lack of scientific literacy and lack of trust for research," Kripke says. "People have to be willing to talk about HIV at all, and, in some of these communities, just that is a major challenge."

The initiative set out to correct this problem by educating the communities on what vaccine research is, how it's conducted, and the importance of the research in finding a cure for the disease.

Three years ago came the biggest shift for NIAID's effort. What was, up to that point, an effort largely organized around HVAD began to shift into a broader, year-round effort that would engage individual communities through local organizations on the ground.

Ogilvy, the agency working with NIAID on the effort at the time, recruited Michael Cover, SVP, specifically for the account. Cover, who had a deep background in HIV awareness efforts, said one of the first things he heard from local partners was the need to expand to a truly 365-day-a-year effort.

The team conducted extensive research, asking the public how much they knew about vaccine research, determining the myths and misconceptions surrounding vaccine research, and developing appropriate messaging. Finally, in early 2006, Ogilvy unveiled the Be the Generation campaign.

"We really wanted it to evolve into a more inspirational effort that was challenging the communities to learn more about vaccine research," Cover recalls. "We wanted to compare it to causes like equal rights and civil rights and say that no matter who you are or where you are there is something you can do to end HIV, even if it's just becoming more aware about the research [that] is going on."

The materials developed around Be the Generation include posters and brochures tying the cause to defeat AIDS to great movements of the past, with the tagline "Every generation has its great cause, ours is ending AIDS." The team also created a Web site - BetheGeneration.org - giving people access to information on vaccine research and clinical trials.

Kripke says that today there are greater numbers of Hispanics and African Americans taking part in clinical trials, but there is still a large barrier that exists within the communities. And while Clinton may have wished for a more effective vaccine by now, Kripke believes NIAID's work is leading down a promising path.

Nonprofits go global

While the government's communications work continues to focus on getting as local as possible, nonprofits are evolving in the opposite way, looking for communications strategies that will suit the international arena.

The Elizabeth Glaser Pediatric AIDS Foundation, started in 1998, initially set out to protect children either born into the disease or contracting it early in life.

But what happened in the nearly two decades since it was founded has dictated the nature of the foundation's work. Today, the number of children with the disease in this country has dropped to 200 new cases annually, while 1,500 children a day contract it globally. That, says Darin Dusan, senior media and communications manager, has forced the foundation to make its outreach more international in nature.

"It has been really challenging, and it's a completely different ballgame," adds Ashley Wolfington, media manager for policy and programs at the foundation. "When you're working here in the US and have spent your whole career knowing how to navigate the US press and then suddenly turn to the international scene, especially Africa, the purpose of what you're trying to do changes a little."

Wolfington says that while the near elimination of children born into this disease in the US is certainly a blessing, it also changes the communications strategy.

"One goal is to use communications tools to remind the public and donors of the ongoing importance of pediatric AIDS research - even when most think AIDS in children 'isn't a problem anymore,' at least here in the US," she says.

Meanwhile, the foundation has learned how difficult it is to balance that domestic communications challenge with the international ones. Several years ago, controversy erupted after the Associated Press published reports that a study on the drug nevirapine may have been flawed. The drug can dramatically decrease the chances of a mother with the virus passing it on to her unborn child.

The foundation worried that women who read the accounts would assume the drug was ineffective and not seek it out.

"It took a lot of US and in-country communications efforts to get the headlines turned around," Wolfington says. "And even then, you know that more people read the scandalous headlines than read [those] saying the product is safe."

Still, the outreach proved to the organization that the ante had been upped as it develops from a purely domestic entity into a truly global one. Now, with its International Family AIDS Initiatives, which have been established in African countries to improve access to care and treatment, Wolfington says the organization has evolved to operate in a more global nature.

The initiatives include Project Heart and Call to Action, both rapidly expanding in Africa. Wolfington says experience has shaped the foundation's communications effort, and it tends to supply people on the ground with the tools to do local media outreach and operate communications.

"We're looking to help our country offices produce their own material because sometimes they know the situations better than we do," Wolfington says. "Part of the growing pains is figuring out how to best do this, but we try to weigh in and give advice and give editorial guidance wherever we can."

Meanwhile, her team oversees the overall effort. It sees to it that those materials are available, attends to US media outreach, and supports online information tools. The foundation's Web site, for example, provides an interactive guide to the initiatives, complete with national objectives for each site. Added to that work, of course, is outreach to donors.

The price of visibility

Likewise, the AIDS Healthcare Foundation (AHF) has sought to use communications domestically to raise awareness on the drug price fight in less visible places.

The organization's current campaign focuses around Mexico, a place that experiences extraordinarily high drug prices and receives very little of the American press's attention.

"People are more aware of the situation in Africa, and that focused attention is part of what brought the prices down," says Lori Yeghiayan, AHF associate director of communications. "Obviously, if we can use advertising and communications to help raise awareness about the problems in Mexico, we can begin to see change."

The organization has tried to engage people through an extensive online campaign, sending electronic newsletters on the issue, directing the public to the campaign's Web site, and engaging press in both Mexico and the US. As part of the online efforts, the AHF has created personalized letters to executives at the major drug companies, urging them to address the problem. To supplement those efforts it has made advertising buys in both countries, as well.

"I would say we have several audiences we need to reach: the general public in Mexico and Latin America, and the public in the US, which is where the largest drug companies are based," says Yeghiayan. "It's also elected officials in both countries, as well as the actual executives at the drug companies, who we engage and have meetings with to let them know our concerns."

While the flush nonprofits of such well-known names as Clinton and Bill Gates have raised the visibility for these and other groups, both Yeghiayan and Wolfington warn that the new danger is public complacency. And while communicators from the last generation worked simply to get AIDS on the map, the next challenge may be the one that makes the difference.

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