Involvement of people living with diseases in the NCD response

Sanjeev Raj Neupane

In last four years I lost five of my close relatives due to different form of Non-communicable diseases (NCDs). They all passed away in between the age of 50 to 55 and they all look apparently healthy before they passed away.
As a common man, I also had a belief that science has solution to every problem and medicine has a cure for every ailment. But I lost belief in science and medicine when a physician looking after my mother in law in a hospital in Kathmandu says they could do nothing to save her and asks us to fulfill her last wishes if there are any. In next week she passed away. She was diagnosed with a rare form of Cancer at a very late stage. One of my uncle who was just 57 years fell suddenly due to heart attack while he was in a morning walk. By the time he was rushed to hospital he was declared dead. He was apparently very healthy and was doing household chores as regular before the sudden heart attack. These two cases are just an example of how brutally the cruel NCDs are affecting families around the globe like slow poison.
We have lived and taught in such a way that only the communicable diseases are serious problems whereas non-communicable diseases have always got less attention. Some of the non-communicable diseases (Such as obesity) are even linked as a marker of affluence and a good standard of life. Sometimes NCDs kill people instantly like sudden heart attacks and sometimes they can even lead to devastating long-term economic consequences for individuals and household in resource-limited settings. In many cases, people don’t consider NCDs as a problem until and unless it happens to themselves or to their close family members. In many cases, those who are living with NCD don’t know or sometimes don’t even believe that they have NCD problem.
A recently released NCDI poverty commission report has mentioned that in Nepal in last twenty-five years the burden of non-communicable disease has more than doubled and 51% of all deaths and disabilities are accountable to NCDs. Though NCD is included in basic health services the availability of medications and readiness of NCD services in Nepal is very limited.
If we see the numbers; the numbers are huge. Non-communicable diseases kill 40 million people each year, accounting for 70% of all deaths globally. The total death toll and the economic loss due to NCDs and its consequences are huge. However, the response in regards to the burden is very negligible. If substantial investments are not made quickly for NCDs there is the likelihood that all the progress made as of now on Health Sector will be pushed back.
There are many lessons and success stories that the newly emerging NCD programs need to learn from other successful public health programs. I have been working in the field of HIV for more than a decade. One of the major successes in HIV programme is the involvement of people living with the disease and people affected by the disease in HIV programming. One of the elements that is currently missing in the response in NCD globally is the involvement of people living with NCD and families affected by NCD in its response. There are many technical working groups and different high-level meetings happening somewhere at some point of time to discuss on the strategic responses for NCDs, however, the participation and representation from the People affected or living with NCDs(PLWNCD) is very limited or none at all. If the NCD programs need to succeed they need to urgently involve people living or family members affected by NCDs in the planning and response of NCDs.

Sanjeev Raj Neupane, Technical Specialist for Global Fund Programs, Save the Children US

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