And yet, despite widespread knowledge of the risks, global obesity goes largely unchecked, while tobacco and alcohol use continue to rise. It is against this backdrop that networks of NCD alliances met December 9-11 at the second Global NCD Alliance Forum, in the United Arab Emirates.
As they search for solutions to bring NCDs under control, they should look for inspiration to the movement to fight AIDS. People living with and affected by HIV continue to drive response efforts, and their unique form of mobilization has been instrumental to progress. While the battle is not over, AIDS activists know that it can be won.
Similarly, a mobilized NCD movement can turn the tide against that epidemic. Yet, in 2015, Richard Horton, the editor of The Lancet, described the NCD community as needing an “electric shock to its semi-comatose soul.” He added: “But who has the courage to deliver it?”
We believe there are lessons to be learned from AIDS activists. As global attention focuses on NCD prevention, those seeking to control preventable illnesses should look to the “ABCs” of AIDS organizing for guidance.
The first letter that the NCD community should consider is “A,” for activism. Anyone over 40 will recall images of AIDS activists performing “die-ins” at scientific meetings around the world. In the United States, AIDS activists took to the streets, even shutting down the Food and Drug Administration’s headquarters for a day in October 1988. Globally, activists lobbied governments and pharmaceutical companies to make medicines more affordable. This activism continues, and should serve as a model for action on NCDs.
Next, the NCD community must adopt a bolder approach to budgets – the “B” of the AIDS movement’s strategy. Civic organizing and grassroots activism may fuel early energies, but organizing and sustaining a broad-based coalition takes money. The AIDS movement was clear about this from the beginning, and lobbied for resources to support its advocacy and accountability effectively.
“C” is for coalitions: the AIDS movement was quick to understand that progress would come only with diverse support. Activists established links between people living with HIV and those with other concerns, such as women’s rights, intellectual property, nutrition, and housing. Issue-specific coalitions and campaigns work best when they bring together government insiders and outsiders, to combine perspectives and expertise.
The AIDS movement also understood that a holistic response to the epidemic was essential if support was to spread. Thus, “D,” the determinant of success, was to draw attention to the interconnectivity of the challenge. For example, lobbying education leaders to keep girls in school longer has contributed to providing young people with the knowledge and agency to make smart decisions about when and with whom to negotiate safe sex. Similarly, links were forged between groups working on poverty, gender, and nutrition – factors that played a role in driving the AIDS crisis. NCDs are no less isolated in their causality, and similarly require a multi-sector approach to prevention.
Engagement – “E” – was what helped the AIDS movement become so influential. By borrowing from the playbook of the disability rights movement, which championed the mantra “Nothing About Us Without Us,” AIDS advocates demanded representation on the bodies established to address the disease. For example, UNAIDS remains the only United Nations agency with seats on its board for representatives from civil society. This norm is so powerfully embedded in the AIDS movement that it would be almost unthinkable for an AIDS meeting to take place without representation from the community.
Disease prevention movements must also develop persuasive narratives, and “F” – framing the issue – was essential to the AIDS community’s effort to gain support from political leaders. In particular, access to AIDS treatment was framed as a matter of economic justice. Framing the narrative this way led to a dramatic reduction in the price of medicines, so much so that more than half of people living with HIV in low- and middle-income countries are in treatment.
An equally important framing issue for AIDS, which is highly relevant to the NCDs movement, is that of responsibility. The AIDS community worked hard to shift the focus from blaming individuals’ lifestyle choices to putting the onus on the state for providing health care and removing legal discrimination.
In the AIDS debate, gender – our movement’s “G” – was a significant focal point. HIV was initially seen as a “gay disease,” and gender identity was embedded in the DNA of the AIDS movement early on. Gender dimensions of NCDs are no less important; one only has to consider how alcohol and tobacco are marketed to understand that. Gender, therefore, must become a focus of NCDs prevention efforts.
Finally, “H” – human rights – was the bedrock of the AIDS response. Campaigns were launched against discrimination in workplaces, schools, and health centers. Strategic litigation helped ensure equality under the law. The AIDS movement refused to hold major conferences in countries with punitive laws against people living with HIV. The NCD movement could take a similar tack by, for example, refusing to meet in countries that fail to restrict advertising of junk food to children.
The list of AIDS lessons could continue throughout the alphabet, but ending with “H” is apt, given that human rights drove the response, and should drive the response to NCDs. Poverty, exclusion, and social and economic marginalization put people at higher risk for HIV. It is no different for NCDs.
The early mainstream reaction to the AIDS epidemic was to ask, “Why don’t those people make better choices?” The AIDS movement made clear that that was the wrong question. Today, with 70% of the planet at risk of premature death from preventable illnesses, “those people” are many of us. The NCD and AIDS communities can learn from one another. We are a stronger movement when we join forces.
The views expressed here do not necessarily reflect those of UNAIDS.
Kent Buse is Chief of Strategic Policy Directions at UNAIDS
Laurel Sprague is Executive Director of the Global Network of People Living with HIV