Revitalizing the NCD Movement: The Case forAn Africa Advocacy Network for People Living with

NCDs (ANPLN)

The Role of People Living with NCDs (PLWNCD) in Global Advocacy

Peter Piot, Former Head of UNAIDS

People living with HIV have been playing a key role in raising the profile of AIDS, holding governments and international organizations accountable and mobilizing affected communities. With the exception of survivors of breast cancer, this is rarely the case with NCDs. People affected with NCDs must step forward and play a more prominent role.

International Alliance of Patient Organizations

We Call on member states to…Ensure that the patient perspective is solicited and patients actively engaged in the design, leadership, implementation, monitoring and evaluation of effective and sustainable interventions to prevent and manage all NCDs

The Role of PLWNCD in Global Advocacy

Sandeep Kishore, Chair, Young Persons Chronic Disease Network

We cannot wait for world leaders to act -- we must move from the bottom-up, building momentum at the social and community grassroots level. We refuse to sit on the sidelines.

Foreign Affairs Journal, May 2012

Although 130 countries, 30 heads of state, and hundreds of NGOs came to advocate for action on a bewildering array of diseases, when the conference opened, the streets outside the UN were empty of the masses of supporters and patients that had characterized the UN high-level meetings on HIV/AIDS.

The Myths

People Living with NCDs in LMCs are silent – Wrong

In several countries surveyed in Africa, there are 10+grassroots PLWN groups with vocal leaders and members.Many have no funds or website.

The Myths

There is no grassroots movement for NCDs – Wrong

Over 20,000 people living with diabetes recently took to the streets for World Diabetes Day (organized by International Diabetes Federation on Nov 14th). There are huge grassroots movements for cancer,diabetes and other NCDs in many countries.

Strong Progress

• There has been strong progress to mobilize PLWNCDs• Examples include:

– International Diabetes Federation – World Diabetes Day, Diabetes Voice regularly highlights PLWNCDs

– World Heart Federation – World Heart Day– Union for International Cancer Control – World Cancer Day– International Alliance of Patient Organizations – A variety of

work raising awareness of PLWNCDs (Conferences, News Releases)

– NCD Action and Young Persons Chronic Disease Network – Mobilizing youth and grassroots, organizing grassroots advocacy and country meet-ups

The Reality

Many NCD leaders have highlighted the lack of grassroots NCD patient

mobilization pioneered in the AIDS community by groups such as ACT UP, HealthGap and the Global Network of People Living with NCDs (GNP+)

However, people living with conditions like cancer and diabetes are no less vocal or passionate advocates then those living with AIDS.

So what’s missing?

A patient led platform through which to share and amplify their voices. Much like the cancer movement created in the US by organizations like American Cancer Society and LIVESTRONG, with the appropriate support and outlets, the passion of people living with cancer, diabetes and other NCDs can be amplified through a patient led platform which reaches the right actors.

The Need

• There is no PLWNCD led policy platform to input into global policy processes.

• National NCD Associations in Africa are almost all led/governed by doctors. Most work for their national governments, and most rely on pharmaceutical sponsorship.

• PLWNCDs often have limited platforms to unite for key campaigns, such as the recent one by Oxfam / MSF on a key Cancer drug patent case, which almost no major NCD organizations joined.

The Need (2)

• Several international federations for the main NCDs only allow one organization to represent each country, and those that don’t have annual fees (USD500 and up) which small grassroots patient groups cannot afford. This limits the global reach of small grassroots groups.

• These factors do not preclude or prevent strong involvement of PWLNCDs, but patient led NCD groups can complement the work of these national and global organizations.

• The lack of direct advocacy from People Living with NCDs to their governments (and internationally) has been a critical gap in the response to NCDs to date.

The Solution

Many of these grassroots organizations for people living with diabetes, cancer & other NCDs have strong advocates with little voice beyond their borders. Most have no opportunity to shape global priorities or input into UN and global processes.

A devolved platform to connect these organizations is needed

The Answer:

An Africa Advocacy Network of People Living with NCDs (ANPLN)

What Would the Network Do?

• It would be a ‘light touch’ network of PLWNCD groups with no priorities other than to ensure their voices are heard at national and global levels.

• This network would operate on volunteers and have little or no financial needs.

• This network would not compete with the functions or any of the current national or global organizations representing people living with NCDs, nor would it seek profile, but rather add value to their work by uniting grassroots PLWNCD groups.

• It would also include AIDS groups as cancer is a leading cause of death for People Living with HIV/AIDS.

Key Objectives

• Unite PLWNCD networks in Africa to ensure a larger collective voice and impact.

• Coordinate policy positions for major meetings and events and issue joint statements.

• Provide easy access to the voices of people living with NCDs and provide and promote contact with the focal points of grassroots PLWNCD groups in Africa.

• Add value to the work of current global advocacy organizations by uniting grassroots groups of people living with NCDs in Africa and providing a platform for involvement with no entry or cost barriers.

Proposed Structure

Phase 1 (3 months)• Begins in East and South African countries.• Comprehensive mapping of PLWNCD organizations.• Interim volunteer coordinators would be sought for each

country during this phase while operating & governance mechanisms are explored.

• Proof of concept is explored with key NCD groups in this region (and National NCD Alliances), Key Global NCD Groups (IAPO, IDF,UICC,WHF, NCD Action), and Key Global AIDS Groups (HealthGap, GNP+)

Partnerships Approach

• The ANPLN would not establish formal partnerships or organizational links in its initial stages.

• The ANPLN will accept advice, assistance, and other resources from organizations that would like to support it work and mission.

• Based on the principles of self-determination, the ANPLN would operate as an independent, autonomous and transparent network of people living with NCDs operating primarily through list serves and social media.

A Strong NCD Movement

The NCD movement has grown stronger as more specializedorganizations have arisen to fill niche areas. But new organizations arealways initially seen as competitors or potentially threatening. Forexample:

>The NCD Alliance was initially seen as a competitor to many global organizations working on NCDs.

>Groups like NCDChild and YPCD were initially seen as competitors to some, but significantly strengthened the global NCD movement and reached new audiences.

Over time however, each of these entities have benefited people livingwith NCDs. Entities that do not add value won’t have longevity,those that do will. Together, we all working for the benefit ofPeople Living with NCDs.

How to Support

This proposal is still being discussed by key stakeholders andGroups in East and South Africa, with a possible launch inQ1 or Q2 2013 if it secures sufficient support.

There are several ways to get involved at this early stage

1. Sign Up as a ‘Supportive Organization or Individual’. This signals your support for the concept of a PLWNCDs led network.

2. Tell us how you could help, or connect us with others who might be interested.