The future of chronic diseases through the eyes of youth

Young people make up nearly half of the world’s population. And even though global health policy-making impacts them — think vaccinations, reproductive health or preventative care — young people far too often don’t have a say in that process.

On non-communicable or chronic diseases, several youth advocacy groups are pushing to change that.

Currently, the debate on NCD policy is playing out in exclusive circles, including government ministries and institutions like the World Health Organization, World Bank and other United Nations agencies. Young people often encounter barriers, rather than open doors, when trying to access these circles; as a result, NCD policy — especially around prevention — is developed for youth, not with youth.

“Traditionally, these organizations will develop ideas and then push them onto young people, seeing millennials and younger generations as less experienced or knowledgeable,” suggested Allesandro Demaio, a global health fellow at Harvard Medical School and co-founder of NCDFREE, a social movement committed to ending preventable deaths from NCDs.

What’s the alternative?

“Don’t engage — include,” Demaio said.

Whether through participation in boards of directors, advisory committees or strategy sessions, young people have something to offer, he added: “They don’t have [fewer] skills, they have different but complementary and essential skills.”

When decision-making bodies include young people from the beginning, the result is often more effective policy. It’s a core tenant of global health and international development: Engage the people that will be affected by a policy or program. If that doesn’t happen at the policy-level, the likelihood of failure may grow.

Efforts are underway to afford young people a legitimate seat at the table. It’s one idea behind WHO’s Commission on Ending Childhood Obesity, for instance, a 15-person panel launched last year that features Sachita Shrestha, a youth advocate from Nepal. The new Youth Commission on Global Governance for Health, launched by the Lancet medical journal and the University of Oslo, similarly looks to young people as valuable voices in global health policy-making. As stated by the commission itself, it hopes to harness the “open-mindedness and innovative thinking that young people often display” to inform health policy at the national and global levels.

Technology’s potential as game-changer

One such area of innovation is the use of technology to advocate for social causes, including health and development. More information, more transparency and more tools for citizens to engage with policymakers mean more opportunities to hold them accountable. It’s helping to give voice to the voiceless.

Global NCD advocacy groups and campaigns, such as NCDFREE, the Young-Professionals Chronic Disease Network and the Healthy Caribbean Coalition are all successful because of technology.

Take crowdsourcing as one example. NCDFREE is crowdfunded, using the Internet and new online funding platforms to scale its appeal for funding to an exponentially larger group of people compared to simple word of mouth. YP-CDN used crowdsourcing in a different way, not to aggregate funding but to curate ideas. The organization’s Youth Manifesto on NCDs is the result of crowdsourced ideas from young people in dozens of countries who offered their recommendations on global NCD policy.

“Our members were no longer satisfied with simply building a community,” said Sandeep Kishore, founder and president of YP-CDN. “We realized we could not assemble together in-person but had a rare advantage in having a compassionate and creative digital community.”

The Youth Manifesto on NCDs became the first-ever broad-scale articulation of policy directives on NCDs from young people, and it was used in advocacy at the 2011 United Nations High-Level Meeting on NCDs and subsequent gatherings like the World Health Assembly.

The Healthy Caribbean Coalition used the ubiquity of cell phones and text messaging in the Caribbean to gather petition signatures that called on heads of state to attend the U.N. meeting on NCDs in 2011. Now, the text message platform delivers NCD prevention and health promotion interventions.

More than anything, technology and the growing use of social media platforms offer opportunities for youth to engage directly with decision-makers and influence policy in a less structured, but more profound way.

Some recent polling has suggested millennials are disengaged with politics and the policy process. While this may be the case in some countries, millennials are not disengaged from major global issues — quite the contrary. Millennials are disengaged from institutions that have traditionally controlled these major global issues. They’re seeking new approaches to influence policy and challenge the status quo.

Pocketbook advocacy

Instead of competing with lobbyists for the limited attention of government officials and other decision-makers, young people have taken to influencing policy through their purchasing power. Take food, for example: Research on millennials, especially in the United States, suggests they’re more apt to pay a little more for healthier food options, and even seek them out.

They also demonstrate much less brand loyalty and an affinity for specialty sellers that offer organic and ethnic foods as opposed to large grocery stores. Food producers are feeling the ripple effects of these preferences and some of them have taken steps to modify existing products or introduce new ones. General Mills Inc. has been developing healthier alternatives to sugary cereal, for instance, after experiencing a significant decline in sales these past few years that has been partly attributed to shifting eating habits among millennials.

Idealism versus realism

Though youth advocates often bring a distinct, fresh perspective to policy discussions, their idealism can sometimes backfire. This was almost the case with the political declaration signed at the 2011 NCD summit hosted by the United Nations. Access to essential cancer medicines became one of the event’s most contentious discussion topics, with many advocates calling it a human right.

Advocates from YP-CDN insisted on a more aggressive policy position beyond that of many governments and a number of other prominent cancer advocacy organizations, including the Livestrong Foundation.

“We are very much about the patient voice,” Loyce Pace, the Livestrong Foundation’s director of health policy, told me, recounting the incident. “We just wanted agreement on off-patent drugs as a compromise [and it] got to a point where the entire process was being held up because of an all-or-nothing ask.”

Youth advocacy groups have the ability to push the envelope, much like HIV and AIDS activist groups, such as Health GAP, have done.

“We need someone to play that role,” said Pace.

Challenge may arise when ambition overshoots what’s politically feasible and jeopardizes incremental progress.

Wanted: NCD-fighting capacity

Young people can only become advocates when they have knowledge and experience to tap into. Yet today, global health education and training opportunities for NCDs remain scarce.

Curricula of many public health schools heavily favor infectious diseases as well as maternal, child and reproductive health, or those areas with commensurate government or donor resources.

Early career opportunities are in large part influenced by the priorities of governments and their partners. And although attention to NCDs is growing, it doesn’t seem to have registered enough yet.

Young people are “going after jobs that are available,” said Jordan Jarvis, executive director of YP-CDN, which now has a presence in 144 countries.

As world leaders finalize a post-2015 framework for global development this year, and as they take steps to improve health care, they have an opportunity to engage with young people and leverage their unique assets and creative thinking.

“Youth engagement should not be viewed as token,” Kishore stressed. “It must be viewed as central to the mission of these actors.”

Want to learn more? Check out the Youth Will website and tweet #YouthWill.

Youth Will is an online conversation hosted by Devex in partnership with Chemonics, The Commonwealth Secretariat, The MasterCard Foundation and UN-Habitat to explore the power that youth around the globe hold to change their own futures and those of their peers.