Action on Non-Communicable Diseases Will Fail Without the Involvement of Patients

By International Alliance Of Patients Organizations iapo, PRNE
Wednesday, April 20, 2011

JOHANNESBURG, April 21, 2011 - Patient advocates have called for greater involvement in the
design and delivery of strategies to prevent and manage non-communicable
diseases (NCDs), and chronic diseases, at the International Alliance of
Patients' Organizations (IAPO) African Regional Network Meeting in
Johannesburg, South Africa. The meeting was held with the support of two
South African patient groups: the South African Depression and Anxiety Group
(SADAG) and the Patients' Health Alliance of NGOs (PHANGO).

It is urgent that effective strategies are put in place to
protect people from the threat of chronic disease to their health and quality
of life. There are many challenges to improving healthcare for people in
Africa and efforts have been met with varying degrees of success. In 2011,
there is an important opportunity for political leaders and key stakeholders
to renew their commitment and efforts to meet the ever-growing threat of NCDs
to the social and economic development of people in Africa. The burden of
NCDs is predicted to rise sharply with the greatest increases in the poorest
regions of the world.

Bringing together 18 patient groups from nine African
countries: Cameroon, Ghana, Liberia, Malawi, Nigeria, South Africa, Uganda,
Zambia and Zimbabwe, the meeting participants shared challenges and solutions
to overcome them whilst committing to working in partnership with all
stakeholders. In a seminar entitled, 'Building cross-sector partnerships to
meet patients' needs', patients were joined by representatives from the
Department of Health in South Africa, the WHO and the health professions
amongst others. The discussion was open, with recognition of the many
challenges to delivering equitable and appropriate healthcare and the role of
patients' organizations as a vital stakeholder in policy-making.

Participants expressed frustration that health policies and initiatives
rarely include patient involvement. They felt that their expertise as the
person living with a condition was rarely taken into account and yet, those
with chronic conditions know best how they affect their lives. They can help
ensure healthcare services are developed to make the most efficient and
appropriate use of limited resources. In addition, they raised concerns about
the inequity of provision of funding and services between chronic conditions
which leads to competition between disease areas rather than treating all
patients whether they have a common and well known condition, such as cancer,
or a rare disease. Nana Yaa Aygeman, Coordinator of Sharecare Ghana, who has
a rare autoimmune condition, shared her experience, she said, 'Patients
suffer the consequences when diseases are not understood or seen as a
priority impacting on funding for education, diagnosis and treatment and
dismissive treatment of patients'.

Highlighting the need for official recognition of patients'
organizations to be full and equal partners in decision-making processes,
Regina Namata Kamoga, IAPO Governing Board Member and Country Manager
(Uganda), stated, 'Patients' organizations need to be recognised in official
relationships with the World Health Organization on a national, regional and
international level and with national Ministries of Health as they are a
vital partner in realising success in the design, delivery and implementation
of healthcare policies'.

IAPO member patient groups in Africa are positive about taking
forward work with these groups and the potential they have together to
effectively advocate to strengthen healthcare systems ensuring they better
address patients' needs in Africa.

Note to Editors:

About IAPO: IAPO is the only global alliance representing
patients of all nationalities across all disease areas and promoting
patient-centred healthcare worldwide. Our members are patients' organizations
working at the local, national, regional and international levels to
represent and support patients, their families and carers. IAPO has over 200
members which span over 50 countries and 50 disease areas and through
membership represents an estimated 365 million patients worldwide.

    For further information, please contact:

    Mr Jeremiah Mwangi, Policy & External Affairs Director, IAPO
    T: +44(0)20-7953-7613;



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