Will global charter help accelerate action on NCDs to prevent untimely deaths?

Will global charter help accelerate action on NCDs to prevent untimely deaths?

A report released recently by NCD Alliance during the Annual Global Week for Action on Non-Communicable Diseases (NCDs), calls for integration of NCDs prevention and care into global health initiatives and universal health coverage.

Jointly produced by the George Institute for Global Health and NCD Alliance, the report makes a call for breaking down the existing silos in global health, and reorienting NCDs services to be people-centric and to be integrated. It argues that political commitments to integrate NCDs care and control with services for priority groups – such as people living with HIV, people affected by TB and malaria, and key populations from reproductive, maternal, neonatal and child health programmes – have not translated into reality on the ground in low- and middle-income countries.

Ignoring the interconnections between these target populations, and the reality of the epidemiological shift to NCDs, is resulting in drastic consequences, more so as co-morbidities between infectious diseases and NCDs are becoming more entrenched.

Even though NCDs are the leading causes of death and disability worldwide, and co-morbidities between infectious diseases and NCDs are becoming more entrenched, healthcare in many countries does not yet respond to the needs of people living with NCDs. Covid has further intensified the need to ensure that people can more easily access simultaneous services that prevent and treat both infectious diseases such as HIV, TB and malaria, and NCDs such as cardiovascular diseases, cancers, respiratory diseases, and diabetes.

At an event organised during the report launch, the NCDs community and experts voiced their concerns and shared personal experiences regarding NCDs care and control, especially in low- and middle-income countries.

Global health data is an evidence that year after year, infectious diseases and NCDs have been deeply entrenched but our healthcare responses have failed to integrate effectively to prevent needless human suffering and avert untimely deaths. Even progress on health and development cross-connections has been abysmal – for instance, malnutrition and TB both continue to fuel each other.

Katie Dain, who leads the global NCD Alliance said that, “Integrated care is the future of healthcare. The reality today is that ever more people are living with multiple chronic conditions. If we have to mount an effective public health response to the world’s biggest killer NCDs, we need to ensure that people living with NCDs are recognised as equal partners with the government, the scientific community and the private sector, across policy development, implementation and monitoring, and accountability. When policies, programmes and services are co-designed with communities they are much more likely to be relevant and appropriate to their needs, scalable and sustainable. It is nothing about us without us.”

NCDs account for 70% of the global deaths, killing 41 million people worldwide every year. and almost 66% of these deaths are linked to preventable causes like tobacco, alcohol, unhealthy diets, physical inactivity and air pollution. Also, the great majority (15 million) of these deaths are in people between 30 and 70 years. Then again, as per a Lancet Commission Report, 1 in 3 diseases affecting the poorest 1 billion people globally are NCDs and half of these are affecting children and young adults.

Even before the Covid pandemic less than 20 countries were on track to achieve SDGs target 3.4 (that is, reducing by one-third premature mortality from NCDs, by 2030). One of the reasons for this lack of progress could be a chronic lack of investments, as less than 2% of global financing is directed towards NCDs prevention and care even when NCDs are the major drivers of death and disease worldwide.

Globally, health systems are inequitable, inefficient and underfunded. Global health and development communities have for too long overlooked NCDs by either wrongly treating them as rich countries’ issues, or they have dismissed NCDs care as too costly. This reflects in deeply entrenched silos in global health programmes and funding, which is a real barrier to developing nations in adapting to real health needs. This siloed approach to treat all these diseases as very separate programmes is counterproductive, said Nina Renshaw, Policy and Advocacy Director, NCD Alliance.

Sally Agallo, a patient advocate from Kenya, shared her personal experience as a person living with HIV as well as cancer. Despite enormous odds, she somehow managed to live with HIV, which she contracted in the 90s, when no treatment was available for it. But it was not easy. She had severe mental health issues, lost two babies and faced stigma from her husband and in laws.

For Sally, lack of information about the disease is the biggest road block. “As a patient advocate I can say that a lot of people are dying not because of their disease but because of lack of information and because of not getting the required care. Lack of information also brings stigma. My husband left me when I was diagnosed with cervical cancer because he thought I could not give him a baby. What really helped me was treatment literacy training. If this compact model (of sharing correct information and treatment literacy with the patients) can be borrowed for all NCDs it would be very good. Another hurdle is the cost of treatment, which is very high. And the doctor’s room is a place where one cannot bargain”, she says.

Sally cautions that information sharing and treatment literacy training should not leave anyone behind. We must include each and everyone, including those who are visually or hearing impaired or differently abled.

Jaime Barba, from Mexico is a Covid survivor who is also living with chronic obstructive pulmonary disorder (COPD), as a consequence of his tobacco smoking. He lamented that some decision makers pretend to believe that people with NCDs either do not exist or that they are collateral damages and so they do not pay any attention to them.

Comparing the NCD response to a bicycle factory that manufactures the best bicycles aimed at winning races, but with hardly any focus on the persons or the community for whom they are meant, he said that the people living with NCDs, should not be made to ride bicycles that are either too small or too big for them to fit in. “Policy makers should heed our experiences, and our needs for an efficient response. Active participation of people living with NCDs will help to change the system and focus action on people”.

Covid has further increased mortality in people living with NCDs. Their prognosis has been more severe and their access to healthcare services for their existing health conditions has been severely reduced due to the pandemic. Like many others, Jaime has not been able to visit any doctor in the past 18 months for he could not get any appointment. Then he tested positive for Covid in October 2020. He managed to survive, but psychologically it devastated him. For many days he lived with the fear of impending death. Even now, after 6 months, he suffers from post Covid problems. Some of his colleagues died for want of timely medical care- one died due to shortage of drugs to treat her hypertension.

Guro Sorenson, Head Nurse at International Health Care Centre in Accra, Ghana, roots for a fully integrated and client-centred healthcare services. Although the main focus of the facility where she works are HIV positive persons, it also works as a general clinic and provides a variety of healthcare services, including for NCDs, for all. So any person who comes to the facility goes through the same patient flow at the facility. They are all seen by the same staff in the same consulting room and they all pick their medication at the same pharmacy.

“As a service provider we must provide holistic care, and when services are integrated it becomes easy to provide full care for the client. It also helps to ensure treatment adherence. In case of a client who comes because of HIV status, we are also able to take care of their other existing conditions like hypertension, diabetes etc. To our clients we are basically a one stop shop for several health services and that makes it much more convenient for them”, she says.

The NCD Alliance has also recently launched the inaugural Global Charter on Meaningful Involvement of People Living with NCDs, aiming to harness the value of lived experience in health policy, programming, and decision-making. The Global Charter lays out 10 key strategies to guarantee that the voices and concerns of people living with NCDs are considered in the response to the epidemic. It underlines that meaningful involvement is crucial at all stages – from design and planning, through to implementation, monitoring and evaluation of NCD initiatives.

(Shobha Shukla is the award-winning founding Managing Editor and Executive Director of CNS (Citizen News Service) and is a feminist, health and development justice advocate. She is a former senior Physics faculty of prestigious Loreto Convent College and current Coordinator of Asia Pacific Regional Media Alliance for Health and Development (APCAT Media). Follow her on Twitter @shobha1shukla or read her writings here www.bit.ly/ShobhaShukla)