Giving a voice to the voiceless
While NCDs have a somewhat unclear notion in most people's minds, even fewer people give voice to the issue that is creating havoc in the lives of millions of people around the world.
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Robert Maregwa speaks at the International Conference on the emerging burden of chronic
diseases and it impact on developing countries, held in Copenhagen 15- 16 April
(photo: Jesper Westley).
But what if you are already voiceless due to poverty - because you are among the half of your country’s population who live on less than US$ 2 a day?(1) And on top you carry a diagnosis which is not included in the global health priorities? Who will talk for you? Who will help you tell policy makers that chronic diseases including cancers, diabetes and cardiovascular diseases are not only for the wealthy?
A voice from the Viwandani slum
Like 848 million other people worldwide (2), Robert Maregwa lives in an urban slum. His home slum, Viwandani, is located in the Kenyan capital of Nairobi and is one of the largest slums in East Africa. Five years ago he was diagnosed with type 2 diabetes, a condition which requires life long medication and optimally lifestyle changes. But working as a welder gives him just US$ 2 a day and this obviously limits the lifestyle changes he can afford. Once he has paid housing, food, school fee for his daughter and his own medicine, he has 22 cents left on a daily basis – and whatever is left goes to sustaining his wife who lives in his Kikuyu home community 100 km from Nairobi. “I know that I could spend the double amount on food if I were to live healthily – now I try my best with beans, vegetables and a little meat,” he says.
With nothing to save, no social security to fall back upon and no public health support, should Robert need hospitalisation for his diabetes, which he most likely will in the future, given the inadequate treatment he gets, the consequences of catastrophic spending to impoverishment as indicated in the earlier article become very clear. Should that happen, the daughter will certainly stop schooling, resulting in impoverishment affecting the next generation as well.
When Robert was first diagnosed, he was referred to the Kikuyu Hospital at the opposite end of Nairobi from where he lives. He could neither afford the cost of the consultations and medicine nor the transportation to the hospital. Therefore, he went on living without treatment or counselling for two years - which is doable in the case of type 2 diabetes because patients do not die immediately without medicine. But in the long run, the body suffers and diabetes complications begin to develop. Medicine, regular blood sugar control and lifestyle management can halt such complications and ensure a healthy, close-to-normal life for diabetes patients. “After two years without treatment my body was starting to wear out,” Robert explains. “I was beginning to feel why people call diabetes ‘the silent killer’ because I could live but if I didn’t take my medicine, silently the disease was taking my life.”
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Health among the urban poor
Luckily for Robert, his part of the sprawling slum is included in a project called “The Nairobi Urban Health and Demographic Surveillance System (NUHDSS)” which collects demographic data from 60,000 individuals in 28,000 households in the slum areas of Korogocho and Viwandani three times a year. The NUHDSS is implemented by the African Population & Health Research Center (APHRC) and it seeks to demonstrate cost effective intervention strategies for improving the health of the urban poor. When analysing the data, researchers found poorer health outcomes than for the rest of Kenya: The under-five mortality rate was double; the maternal mortality rate was almost double; antenatal visits were half as frequent; and the HIV prevalence was almost double that of the national prevalence (12% compared to 7%). In addition to these maybe not too surprising findings of poorer health among the urban poor, researchers also found an alarmingly high rate of NCDs with 17% having either high blood pressure or diabetes (3).
The health facilities in the slum areas lack basic equipment to measure these conditions and health staff is not trained about the diabetes diagnosis, care or treatment. “So we decided to set up APHRC clinics to screen the people and provide free treatment,” says Dr Samuel Oji Oti, Research Officer at APHRC. “Since May 2008, free screening and treatment has been available at the clinic every other Saturday.” The APHRC clinics run in existing health facilities, like the Lunga Lunga Health Centre in the Viwandani slum where Robert now can get free treatment and better control his diabetes.
Free drugs – an unsustainable solution in the long term
Due to a donation, initially the patients could get free drugs at the Saturday clinics, but when the donation terminated in February this year, a new solution was needed. With a small amount of seed money and a larger amount of solidarity a plan has now been set up where the patients pay a monthly fee of 450 Kenyan Shilling (US$ 5.5) and in return they get treatment, care and drugs. Although drugs are no longer free, Robert who remembers how it was to not have access at all is grateful for this new plan. “As for the 450 KES for medicine and care, this is a price we obtained only because we have pooled money and teamed up with APHRC. Some people with diabetes cannot afford to pay 450 KES, but we try to find a way of helping each other,” he says.
Concerning the issue of sustainability of free medication, WDF Programme Coordinator, Ms Emilie Kirstein emphasises that out of principle, funds from WDF may never be used for acquiring medicine. “We are extremely aware of sustainability in our project management, and making patients dependent on free medicine during the time a project lasts is not our interpretation of sustainability. We support capacity building, and in this particular project this means training health professionals and equipping them with the basics for diabetes prevention, care and treatment,” she says.
With support from the World Diabetes Foundation, APHRC has collaborated with other stakeholders to train 117 health care providers in 15 health care centres in Nairobi on management and control of diabetes and high blood pressure. They have introduced what they describe as ’state of the art equipment’ to monitor these diseases, namely blood pressure machines, glucose metres, weighing scales and stethoscopes. With such cost effective interventions, APHRC is among the pathfinders to improving the health of the urban poor. And according to Alex Azeh, Executive Director of APHRC, this is a crucial development indicator because as he argues, “What happens to the urban poor will increasingly determine how the country fares and how it meets the MDGs.”
Aligning health priorities
In a city far away from the urban slums of Sub Saharan Africa, the emerging burden of chronic diseases in developing countries was the theme of a conference in Copenhagen hosted by the World Diabetes Foundation and the Danish Ministry of Foreign Affairs. Few donors were present at the conference – but those who were could not miss the repeated facts that the burden of chronic diseases must be taken seriously.
Dr William K Maina, Deputy Director of Medical Services & Head of Division of NCDs in the Kenyan Ministry of Public Health and Sanitation, attended the conference and he left little room for misinterpretation by saying: “My big message to the donors is that it is time to align their support to the health priorities. They need to look into these priorities and make chronic diseases one of them. It is time for the donors to turn around and influence governments and international companies on chronic diseases. The pharmaceutical industry also needs to reconsider their priorities in terms of accessibility and affordability of drugs in developing countries.”
Robert who has felt the silent killer approach his own body when he could not afford treatment had a clear message to those who do not think chronic diseases and poverty in the same sentence: “The majority of people who die silently at home today should not continue to die. Diabetes should be thought of as an epidemic in all countries – it should be taken care of just like HIV and tuberculosis.”
Read about the project to support diabetes care in Nairobi slums (WDF08-399). See video about the NUHDSS project.
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