Editorial, /

In the run up to the United Nations (UN) “High-level Meeting of the United Nations General Assembly on the prevention and control of non-communicable diseases” also known as the UN Summit on NCDs the International Alliance of Patients’ Organizations (IAPO) has been carrying out a number of activities to ensure that there is a strong patient voice in the development of strategies to fight NCDs.

The Summit will take place on 19-20 September 2011 in New York, USA and will bring together Heads of State and Government to discuss the issue. It is expected that the Summit will focus on initiating and strengthening action at global and national levels to halt and address the health and socio-economic impact of NCDs through multi-sectoral approaches. It is also expected that the Summit will generate global commitment and momentum to implement the World Health Organization (WHO) Global Strategy for the Prevention and Control of Non-communicable Diseases (NCDs) and its related Action Plan.

NCDs are the leading causes of preventable morbidity and disability, and currently cause over 60% of global deaths, 80% of which occur in developing countries. By 2030, NCDs are estimated to contribute to 75% of global deaths.[1]The World Health Organization defines NCDs as cardiovascular diseases, cancers, respiratory diseases and diabetes. These diseases are connected by four common modifiable risk factors: tobacco use, unhealthy diet, physical inactivity and the harmful use of alcohol. In discussions with many of IAPOs members, there was concern that by WHO limiting the definition to four disease areas, the conditions they represent will become less of a priority for decision-makers. IAPO will continue to advocate to WHO for a continued focus on chronic conditions more broadly and in particular, to include the patient voice in its work and hope to increase opportunities for IAPO members to engage with WHO in this area. Alongside IAPO, many IAPO member organizations will also be present at the Summit[2].

IAPO continues to advocate for appropriate focus on all chronic conditions with WHO, it also recognises the particular opportunity that the Summit presents to secure global commitment to a plan of actions and set of indicators that can lead to real improvement for all patients. Therefore, IAPO will also strongly make the case for a patient-centred approach and for securing wider commitment to ensure that chronic conditions are addressed while not undermining the opportunity to have, for the first time, high-level global commitment to addressing the NCDs identified by WHO.

Previous meetings of this nature have led to coherent strategies for action, secured pledges of financial commitment and political support and provided a stage for international advocacy. Therefore, some of the key asks from IAPO are that policies and activities must be patient-led i.e. designed in consultation with affected communities according to local priorities. Additionally the Summit needs to ensure the success of the implementation of the WHO Global Strategy for the Prevention and Management of NCDs is measured on its contribution to strengthening health systems in terms of chronic disease.

The NCD Alliance is a group of four NGOs representing the four disease areas identified as NCDs by WHO. They are the: International Diabetes Federation (IDF); International Union Against Cancer (UICC); World Heart Federation (WHF); and International Union Against Tuberculosis and Lung Disease. They are calling for:

1.     Governments to be accountable and measured on NCD plans

2.     Framework Convention on Tobacco Control (FCTC) to be fully implemented

3.     A global commitment to prevent the preventable

4.     Globally agreed approaches to NCD treatment and care

5.     Resources to deliver NCD interventions

6.     NCDs in the MDG successor goals

IAPO is a member of the NCD Alliance’s Common Interest Group and supports its position. In addition IAPO is working to ensure that the outcomes of the Summit lay the foundations for a wider approach to preventing and managing chronic disease that is patient-centred. IAPO believes that this is the best way to serve its members on this issue.

In the past year IAPO has conducted a number of activities to ensure that key messages on patient-centred healthcare systems are heard in the build up to and during the UN Summit. These include capacity building with members in Africa as part of a regional network meeting, facilitating patient engagement in the WHO global forum: Addressing the challenge of NCDs, interventions and a side meeting at the 64th WHO World Health Assembly and participation at the UN Informal Interactive Hearing on Non-communicable Diseases. In these activities, IAPO continues to call for the following actions:

  • Ensuring the WHO Global Strategy for the Prevention and Management of NCDs is implemented equitably to prevention, diagnosis, treatment, care and support. That the important focus on four diseases is not achieved to the detriment of all chronic diseases.
  • Ensuring effective implementation as measured by strengthening health systems.
  • Ensuring that the patient voice and perspective are solicited and actively engaged in the design, leadership, implementation, monitoring and evaluation of effective and sustainable interventions to prevent and manage all NCDs.
  • Ensuring that patients’ organizations have an active role in the development, implementation, and monitoring of legislation, health policies, regulatory frameworks, strategies, guidelines, and standards for NCD prevention and management.
  • Committing to a plan of improvements in health literacy.
  • Increasing research on the prevalence and incidence of NCDs and their impact on the lives of patients, families and their caregivers.
  • Promoting early diagnosis and treatment to reduce morbidity and mortality and improve quality of life.
  • Ensuring all policies, programs, and strategies are based on the fundamental right to patient-centered healthcare based on unique needs, preferences and values, as well as patient autonomy and independence.

For people living with NCDs, patient safety is a serious concern. People with NCDs may regularly be admitted into hospital where patient safety issues such as the threat of medical error or healthcare associated infections are an issue. They may also take medicine on a long term basis and need to take these correctly in order to be safe and effective. Therefore, it is crucial that there is a global commitment to improving health literacy and that patient safety issues such as these are considered when strategies are developed in order to effectively reduce the medical burden of NCDs.

An example of IAPO’s work in this area is Patients for Patient Safety (PFPS) which is an innovative model which is the patient-led action area of WHO Patient Safety.  IAPO has been on the Steering Group of PFPS since its launch in 2004. This initiative is developing and coordinating patient involvement in the WHO’s patient safety work to bring the patient voice to global initiatives.  In parallel it is supporting the development of a base of patient advocates skilled to participate in safety related health policy initiatives.

In order to effectively tackle NCDs, and to meet the needs of patients worldwide there needs to be increased patient engagement and a broad multi-stakeholder commitment to the recommendations made by patients and patient groups worldwide.

[1] WHO Moscow Declaration:

[2] IAPOs membership is made up of groups representing many disease areas that IAPO and other stakeholders have in the past also considered as ‘non-communicable’, a term which has been used interchangeably with ‘chronic disease’ and ‘long-term condition’.