1. Revitalizing the NCD Movement: The Case for
An Africa Advocacy Network for People Living with
NCDs (ANPLN)

2. 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

3. 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.

4. 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.

5. 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.

6. 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

7. 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.

8. 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.

9. 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.

10. 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)

11. 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.

12. 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.

13. 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+)

14. 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.

15. A Strong NCD Movement
The NCD movement has grown stronger as more specialized
organizations have arisen to fill niche areas. But new organizations are
always initially seen as competitors or potentially threatening. For
example:
>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 living
with NCDs. Entities that do not add value won’t have longevity,
those that do will. Together, we all working for the benefit of
People Living with NCDs.

16. How to Support
This proposal is still being discussed by key stakeholders and
Groups in East and South Africa, with a possible launch in
Q1 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.