When it comes to advocacy work, don't be shy to ask

In 2010, two research scientists, frustrated with the lack of attention and movement associated in battling hepatitis, thought of setting up an advocacy group whose main purpose will be to push for public policy reform to reduce the burden of the disease in Asia-Pacific. Without the necessary resources and with the two’s limited experience in advocacy work, however, it was difficult to get the idea off the ground. But luck was on their side, and as Dr. Stephen Locarnini and Dr. Ding-Shinn Chen would later learn, all they really needed was to ask for help, which in their case came in the form of Jennifer Johnston, an advocacy expert who has been leading the Coalition for the Eradication of Viral Hepatitis in Asia-Pacific for the past five years. Johnston, who has spent years in public policy and the private sector, has just set up her own public affairs consultancy firm Advocomm Australasia Pty Ltd., when the request came in. Back then, she was helping them convene a policy workshop in Beijing, China, with a group of clinicians and research scientists from different parts of the globe. While knowledgeable about hepatitis, these clinicians and scientists had little to no experience when it comes to policy work, which Johnston would later realize is “desperately needed in hepatitis.” Johnston had heard a lot about hepatitis while working with pharmaceutical company Bristol-Myers Squibb, but admitted that she didn’t know enough about the disease. She thought she needed to understand it better, as do the rest of the world. So the policy expert came on board with the idea, and agreed to help for a very modest retainer fee, which she says is based on 8 hours a week. The rest of her time will be on a volunteer basis — a setup her good friend and former colleague at BMS, Vicki Ang, has also agreed to do. “Vicki and I both have the same commitment, and she has an accounting and finance background, which is perfect, and I policy and communications,” Johnston told Devex. For the past five years, the duo has been instrumental in keeping CEVHAP together, while building its brand in the region as the “go-to organization” for anything policy-related to hepatitis. In conferences, Vicki would do logistics and take on the organizer role, while she would do the program, theme and all the writing. But as the organization — and demand for CEVHAP’s services — grows, especially that hepatitis is expected to gain more attention post-2015 given its inclusion in the just-adopted set of the next development goals, Johnston knew running it with only two pairs of arms is no longer sustainable. CEVHAP would need full-time staff to take it to the next level, and Johnston is targeting to achieve that in the next two years. The ‘chicken and egg’ dilemma But first, she needed to find the funds to make that happen. Like most nonprofit organizations, securing funding remains a major challenge for CEVHAP. Most of its donors and supporters continue to come from the private sector. Pharmaceutical companies like BMS provide funding for its policy work. For a very basic fee, global communications firms, such as Fleishman-Hillard, assist CEVHAP in its communications outreach, including for workshops and meetings and in their campaigns surrounding World Hepatitis Day — again a product of “just asking.” “Four years ago, we told them we can’t afford your fee — is there a way you can assist us?” she recalled. It’s not surprising that CEVHAP seems to rely so much on private sector support, given Johnston’s network and background. Many of the private sector companies the nonprofit engages with are knowledgeable in the area of hepatitis as well. But Johnston is aware this model will not be sustainable in the long run. Businesses can change direction in a heartbeat, and can leave organizations reliant on them empty handed. “We always knew we need to broaden our funding base beyond the pharma industry, and we can’t rely on them to carry us into the future,” she said. Over the past year, Johnston has spent a lot of time with fundraising consultants, looking at options on how CEVHAP can broaden its funding base. The nonprofit is now putting together a chart of all potential foundations to approach and submit grant applications. CEVHAP has amassed a number of communications materials through the years, such as infographics that compare deaths from hepatitis with those arising from complications related to HIV and AIDS. Johnston said such materials have made it easier to explain the need to tackle hepatitis, and make the case for an organization like CEVHAP. A huge factor behind the limited funding for hepatitis was the “extremely low awareness” about the disease at “all levels of society,” including potential funders, according to Johnston. “Engaging with potential funders takes a lot of education, and tailored education [at that],” she said. And “we have to conduct that before we even start asking for money. So it’s a bit of a chicken and egg, the fact that there’s such low awareness, it’s really hard to get people to actually say, ‘yes, this is a compelling issue and we will fund you.’” Most of the donor funding is still very much tied to the Millennium Development Goals, she argued. “I don’t know how many calls I’ve made to get any one at the [Bill & Melinda Gates Foundation] to respond, especially in the early stages when we don’t have any profile whatsoever. And then to educate them about hepatitis when they’re saying we only fund HIV,” she said. In both circumstances, however, the challenge is to get donors to provide unrestricted funding, which can use to pay for other costs associated to their work — a dilemma many nongovernmental organizations are struggling with. “It’s really easy for [organizations] to fund a project because they can see results in a report or in another form, but no one likes to fund operational costs. And as an advocacy organization, that’s the tool of the trade. You need reports, meetings, people-to-people contact, persuading, talking and engaging. And in a big region [like Asia-Pacific], that requires travel and attending meetings,” she said. In advocacy work, Johnston is a firm believer in investing in operations first. “Making sure you have capable people as a first step, you’ll get the outcomes you want faster,” she said. The next step for CEVHAP Next on CEVHAP’s work is to carry out a scoping study, which Johnston says will help bring the case for hepatitis investments at the government level. After years of doing public policy work, the advocacy expert has come to understand that governments, no matter what the social impact is, are not going to “act until there’s a strong economic argument.” “If they can’t find the funding [and] justify spending the money, nothing will proceed. And it doesn’t matter whatever persuasion [you use], the government is basically driven by the need to keep the country afloat and justify their expenditure,” she said. So having that data is critical, although she anticipates collection would be challenging across Asia where there’s a poor system for surveillance and record. But again, to get all this work done, she is hoping the organization would finally be able to have full-time staff, something that she admits she couldn’t fully give the organization. Johnston hopes to be able to take on more work with small businesses, yet, remain closely involved with CEVHAP in the next five years. “I can’t imagine not working with CEVHAP now. It’s come this far. I’d like to see it in a much more secure footing within the next two years,” she said. She however hopes that whoever comes on board would have the same energy she and Ang have exerted, including working virtually, which would keep overhead down and allow them to work with more flexibility — putting sustainability at work. Check out more insights and analysis for global development leaders like you, and sign up as an Executive Member to receive the information you need for your organization to thrive.