Here is something I wrote a while back about NCDs. It is posted on LinkedIn.

Jamie

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Voice, representation, and community participation in the global response to NCDs

Among those of us with an interest in global health, it is encouraging to see that noncommunicable diseases are finally getting a bit of traction. A third high level meeting will be held this year, WHO has struck a high level commission, and Twitter is buzzing with NCD talk. There is broad agreement that civil society has a role in the global response. And we hear demands that communities be represented in governance of the global response. But how communities participate has not been clearly determined and there are questions about voice and representation being raised.

There has been a long, hard-fought struggle in order to ensure participation of communities of people living with HIV in the global response to the HIV pandemic. People living with HIV have lived and died on the front lines of the response. It took a long time for people who disclosed their serostatus to work throughout organisations working on HIV and to be a full part of the governance of the response. It is now impossible to imagine a response to HIV without them. There has also been a long struggle to bring into the conversation members of communities of ‘key populations’ of female sex workers, men who have sex with men, people who inject drugs, and in some places, transgender women. People self-identify with these identities and communities. Though community members with positions of power may not always speak for their communities or represent them well, they have a voice in the response.

Voice and representation for noncommunicable diseases is different. People do not usually self identify as having risk factors or living with a noncommunicable disease. There are exceptions. People living with diabetes often identify themselves as diabetic. And many people with mental health issues increasingly feel safe in self-identifying, for instance, as someone with an alcohol use disorder. People with mobility disabilities from road injuries also self identify.

As we age, almost all of us develop risk factors for or develop a noncommunicable disease. By age fifty, many people are living with one or more risk factors or noncommunicable diseases. By age seventy, most are. Many of us are at risk through no behaviour of our own: we live in polluted environments or have little choice over what we eat. And those of us without risk factors or NCDs have our lives affected by someone close to us living with risk factors or NCDs. In short, almost the entire population of the globe has a risk factor, has a noncommunicable disease, or is affected by one.

People living with HIV and members of key populations number in the millions. People with risk factors or living with NCDs number in the billions. How are we to ensure that their voices are heard and that they represent people who are suffering?

There are many ways for people with risk factors or NCDs to raise their voices, represent their communities, and participate in governance of the response.

1) The first is through social movements. The new taxes on sugary drinks that are being raised in the US are due to the joint efforts of thousands of citizen activists in concert with public health professionals and elected officials. GirlTrek is a social movement leading to social mobilisation and better health for African American women who participate in it by walking. And it is people in neighbourhoods who work together to demand safer streets shared by pedestrians, bicycles, and cars. It is in the intersections between social movements that they can have the greatest effect. Last year the cancer centre at Columbia University held a bicycle ride to raise funds for cancer treatment. Rejection of sponsorship by Pepsi would have had the dual effect of raising awareness of the effect of sugarydrinks on obesity and of exercise in preventing it. There are social movements around food everywhere.

2) Another way is for people to ‘come out’ in public about their risk factors and living with NCDs when they speak about NCDs. Can you imagine members of the WHO High Level Commission on NCDs speaking as social activists? “As a woman living with chronic lung disease I think we must support plans sustainable cities with no air pollution.” Or “As the brother of a man with diabetes I know that sugary drink promotion in sports needs to be regulated.” Or “As a person with opioid use disorder I demand that the overdose medication naloxone be available at all restaurants."

3) If we are forced to choose representatives of communities with risk of NCDs or with NCDs, we can demand that the people who represent us are speaking for us. We can ensure that they voices are saying what we want them to say by ensuring that they represent a range of people. The representatives must be age, gender, and ethnically diverse so that they represent as many people as possible. This is not identity politics: it is good governance. The NCD Alliance and its many partner organisations is just one voice among many from civil society. Not the only one. WHO chooses organisations to represent civil society all the time. If the wrong groups are chosen we must make the organisation accountable.

4) Finally, we need to be aware of the commercial determinants of health. Patient groups of people living with cancers or other noncommunicable diseasese often take funding from pharmaceutical companies. Can these groups then expect to speak for those that have no access to medicines? Some groups take money from Big Food or Big Soda. Can they speak objectively about nutrition? We know they cannot.

The learned experience of people working in HIV tells us that this will be difficult work. Onwards.

https://www.linkedin.com/pulse/voice-representation-community-participation-global-response-uhrig/