A people’s movement against chronic disease

This week, in time for the UN NCD Review meeting in New York City, Dr. Jeremy Schwartz makes the case for a strong civil society movement against global Non-Communicable Diseases.  

In some way or another, every one of us has been touched by a chronic disease. Words like hypertension, diabetes, and cancer are part of our everyday vocabulary. But most people I speak with believe that these diseases only affect people in rich countries- that these are not afflictions of the world’s poor. This is a myth. Six out of every ten deaths on earth are due to chronic, non-communicable diseases (NCDs). What’s more, eighty percent of these deaths occur in low- and middle-income countries. In these countries, for reasons we do not completely understand, NCDs affect people at a younger age, during their most economically productive years. Because of NCDs, $47 trillion will evaporate from the global economy over the next two decades.

 There are many reasons for this rising tide of NCDs. Western countries have exported many of their worst habits- like smoking and diets high in fat and salt- that cultivate these “lifestyle diseases”.  In poor countries, sedentary desk jobs are replacing more active manual labor. Digging deeper, though, the NCD epidemic becomes entangled with the wills of multinational food, agriculture, tobacco, and pharmaceutical companies. Trade agreements favor exportation of countries’ fresh fruit and vegetable crops and importation of canned foods high in salt. Lawmakers lack the political will to slap taxes on tobacco products. Medicines that are essential to treating these conditions remain unaffordable.

How is it that an issue so grave is still news to so many? Let us not forget how HIV/AIDS leapt onto the global stage in the late 1980s. It was not simply because people were sick and dying. It was because scores of passionate activists banded together and forced the world’s decision-makers to pay attention. Money, political will, and progress in fighting back this pandemic followed.  NCDs need a voice. But the people must find it first.

HIV activists demonstrate outside the Food and Drug Administration Headquarters, October 1988. Source: The Atlantic

Here in the United States we have the luxury of a strong civil society- the collective of non-governmental organizations and institutions that advocate for us. We live amongst so many advocacy organizations that it is easy to lose sight of this. The American Heart Association, American Diabetes Association, and American Cancer Society are some of the largest. We wear ribbons and t-shirts displaying logos and disease-specific colors to show our support. We text-message donations from our cell phones. We take part in walk-a-thons, marathons, and telethons. According to The Giving Institute, Americans donated $33 billion to health-related organizations in 2013. These major organizations amass our donated wealth and are thereby able to act on our behalf- lobby government, fund biomedical research, and set up patient support networks.

Americans donated $335 billion to charity in 2013. Of this, 10% was directed to health-related organizations. Source: Giving USA 2014

Americans donated $335 billion to charity in 2013. Of this, 10% was directed to health-related organizations. Source: Giving USA 2014

Most of the world, however, lacks a strong civil society. Its people lack a voice and governments remain unaccountable. A critical check on the system is missing. But there has been some important progress. The NCD Alliance has provided a framework for evaluating a country’s commitment to, and progress in fighting, NCDs. An exciting effort in East Africa is bringing together the relatively new offshoot NCD Alliances in that region. Professor Gerald Yonga, a Kenyan physician and co-chair of this regional effort, spoke at the United Nations last month. He urged governments to prioritize NCDs in their development plans. He spoke of building this regional initiative and of its first product- a charter that was signed in early June by local advocacy groups from across the region. This is new and it is thrilling. It is giving a voice to the people. But ventures like this are not sustainable without financial resources. Our European counterparts have taken the lead on this. The Danish Civil Society Fund has underwritten the East African Alliances and provided much needed technical support.

East Africa NCD Alliance Initiative Planning Committee at Uganda NCD Alliance Headquarters, Kampala, Uganda.

East Africa NCD Alliance Initiative Planning Committee at Uganda NCD Alliance Headquarters, Kampala, Uganda.

Today and tomorrow, heads of state, diplomats, and ministers of health will convene at the United Nations in New York. They will assess progress made since a High Level Meeting on NCDs in 2011. My friend and role model, Dr. Sandeep Kishore, who founded the global, grassroots Young Professional Chronic Disease Network, will stand before this assembly. He will correctly insist that NCDs are the social justice issue of our time. Governmental and global priorities are misaligned. People are sick and dying from preventable diseases.

A Global Civil Society Fund for NCDs could change this. The United States and other countries of the “global North” must realign some of our aid toward supporting a vibrant civil society for NCDs. The East African example is a model that must be fortified and replicated. With far fewer dollars than is needed for prevention and treatment, a fund like this could catalyze a global people’s movement against NCDs. The people in this world who are most in need of a voice might finally be able to find one and true progress against NCDs will follow.

Dr. Jeremy Schwartz is a physician at Yale School of Medicine and Director of Chronic Disease Integration and Delivery Science at the Yale Equity Research and Innovation Center. Follow him @jeremy_schwartz

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