A great challenge for NGOs

Cardiovascular diseases, cancer, chronic respiratory diseases, diabetes, and other chronic diseases are responsible for most deaths and much of the disease burden in the industrialized world. Due to globalization, urbanization, life style changes, and overall population aging, chronic diseases are also increasing at epidemic rates in low and middle income countries, straining health care budgets and competing with acute infectious diseases for limited resources. In 2005, 60% of the approximate 58 million deaths were from chronic conditions, compared to only 30% due to infectious diseases, even when including HIV/AIDS, TB and malaria (1). The proportion of deaths from chronic diseases exceeds that of infectious diseases in all regions of the world, except Africa.

Global life style changes are more threatening “infectious agents” than many bacteria and viruses known to-date. With the aggressive marketing of western fast foods, tobacco, and sedentary life styles, low and middle income populations are at great risk of becoming “infected.” At the same time, they lack the necessary information, tools, and alternatives for the behavior change needed to protect their health and well-being.

Opportunities for combating chronic diseases

Lifestyle factors are causally related to many chronic disease deaths. Therefore, life style changes, combined with basic treatment can save many lives and reduce premature death and suffering. Because it generally takes years for chronic diseases to establish themselves and for symptoms to appear, there are opportunities to intervene along the prevention continuum (2):

Primordial prevention approaches generally target large populations and are long-term investments to reduce the number of chronic disease cases, the burden of disease, and health care costs. Benefits may be reaped decades after the initial investment has been made. For example, smoking, alcohol consumption, and diet during pregnancy have been associated with increased rates of several chronic diseases decades after the child is born. Therefore, primordial intervention approaches can be integrated already into prenatal care in low and middle income countries. Similarly, nutrition education, exercise promotion, and substance abuse education during the school years may counter the increasing rates of teens and pre-teens smoking and childhood obesity, with benefits accruing during the adult years.

Primary prevention targets individuals with already known risk factors (for example: smoking, overweight) and provides them with special interventions (for example: smoking cessation and nutrition counseling, sports clubs) that can substantially reduce chronic diseases and premature death, while improving the quality of life. At-risk groups can be targeted through focused Behavior Change Communication approaches, empowered patient associations, and provider in-service training.

Training of primary health care providers and chronic disease specialists can reduce the burden of severe disease and premature death (for example: assist diabetic patients to control their blood glucose levels through regular testing, nutrition and exercise, foot care). Often health care providers in low and middle income countries lack protocols, basic equipments, tests, reagents, and medications, as well as the skills to counsel and actively involve patients as partners in the control of their chronic condition.

Not in line with the “innocent victim” perception...

Despite the significance of chronic diseases and multiple opportunities to intervene, non-governmental organizations are not yet significant players in countering the chronic disease epidemics. Several factors contribute to this low level of involvement:

Blaming the victim: There is a pervasive perception that chronically ill individuals are “less deserving” because they are to a large degree responsible for their disease and could have prevented it with greater control over food intake, tobacco, alcohol, drugs, and exercise.

Public health threat: With some exceptions (HIV), chronic diseases are generally not “communicable” in the traditional sense. The “infectious agents”, as for example life styles, are considered individual and not a public health issues.

Financial considerations: Closely related the above points are financial considerations. NGOs have to be able to raise funds for their activities. Pictures and stories of malnourished or critically ill children, refugees, and pregnant women engender more feelings of human empathy and willingness to help than pictures and stories of overweight children, insulin-injecting adults, or individuals on heart monitors. Exceptions are chronic conditions, for example visual impairments, which are more in line with the “innocent victim” perception (for example river blindness, severe vitamin A deficiency), with the result that NGOs have been more actively involved.

Low political commitment: The political commitment, particularly to the prevention of chronic diseases is emerging very slowly in low and middle income countries, where governments and health services are under pressure to prioritize emergency and acute care for the patients lining up at public health centers and hospitals. Low political commitment is also still evident in the donor community. Few foundations and bilateral donors are channeling resources to NGOs to deal with heart disease, diabetes, and cancer prevention and treatment programs in these countries, making it a great challenge for NGOs to contribute to chronic disease prevention and care efforts.

NGOs must become involved

Non-governmental organizations can make critical contributions to counter chronic diseases in low and middle income countries, building on their particular strengths and expertise.

Delivery of targeted services: While it is important to strengthen the public sector, there is a clear role for NGOs to deliver services in geographic regions with severe human resources constraints or to populations with special needs (homebound patients, visually impaired, etc.). Governments may also decide to contract NGOs, because they represent or have special knowledge of special-needs populations (for example diabetes patient associations, cancer survivors, etc.) as well as can deliver services with greater efficiency through their existing community-based networks.

This unique access and understanding of vulnerable populations has been critical to the success of many health interventions. DOTS for TB treatment and prevention, integrated management of child hood illnesses, reproductive health, malaria and HIV prevention and treatment would not have reached the community and household level without the leadership role of NGOs in the design, planning, implementation, and monitoring and evaluation. Increasingly, donors, such as The Global Fund, have recognized the value added by NGOs and are formalizing NGOs participation in addressing infectious diseases. This involvement must be extended to chronic illnesses.

Development of human resources: NGOs can leverage technical resources through creative partnerships with universities, medical centers, consultancy firms and individuals. Such partnerships can assist in the introduction of efficient, evidence–based approaches to chronic illnesses, the transfer and adaptation of international protocols, assistance in the development of local training capacity, and direct training, mentoring and coaching of local partners in program design, marketing, financing, program implementation, quality assurance, and monitoring and evaluation.

Resource mobilization: For sustainability reasons, NGOs have developed an expertise in resource mobilization with various types of donors to finance new projects. In addition, they have leveraged in-kind assistance of volunteers and products for infectious diseases. Such resource mobilization skills are key to success in countering chronic diseases in resource constrained environments.

Innovation and research: NGO staff often work in environments that encourage innovation and operational research. The NGOs commitment to make a difference in the lives of their target groups, combined with organizational flexibility, capabilities to raise resources, and understanding of program design provide a fertile environment for piloting new approaches that can, if successful, be scaled up by the public sector. Innovative partnerships entered by NGOs, linking the public and private, for-profit and not-for-profit sectors have contributed to innovation (for example Rollback Malaria) in communicable diseases. Such innovative approaches and partnerships are particularly needed to counter the chronic disease epidemics.

Advocacy role: NGOs have served as primary advocates for vulnerable and at-risk populations in maternal and child health, women’s health, HIV, and visual and mental impairments in low and middle income countries. They have worked with governments to better meet the needs of some of these target groups, increased access to care, pushed for changes in laws and regulations, and introduced new protocols for service providers. These advocacy skills need to be extended to chronic diseases.

Given the global, societal, community and family impact of chronic diseases, NGOs must seize the opportunity to become involved at a time when their role in advocacy, public health and service delivery is essential in saving lives and reducing health care costs. Whenever feasible, chronic disease prevention and treatment can and should be integrated into existing NGO programs. The donor community can support NGOs in taking this step, as well as provide support to the development of new innovative approaches.

*Bettina Schwethelm, PhD, MPH, is the Executive Director of Fondation Partnerships in Health, a Swiss NGO working in chronic and infectious diseases advocacy, prevention and care in the Western Balkans and Central Asia. As a founding member of the CORE Group, Inc., a US NGO umbrella organization, and a member of the Medicus Mundi Switzerland Board, she promotes NGO involvement and multi-sector linkages in new disease initiatives. Contact: bsch@partnershipsinhealth.ch

Francisca Merino, MD, a family physician from Chile, is the Medical Advisor of Partnerships in Health. She is involved in the conceptualization of chronic disease initiatives, including the diabetes prevention and care project in Bosnia and Herzegovina. Contact: fm@partnershipsinhealth.ch

References

1. WHO Global report. Preventing Chronic Diseases: A Vital Investment.
2. Gaziano, T.A. (2007). Ovations Option Paper: Clusters of Excellence for Chronic Disease: www.oxha.org/knowledge/publications/ovations-option-paper-final-010507.pdf