Closing the Treatment Gap for Children with Severe NCDs Children & adolescent health 16/09/2022 • Kerry Cullinan Share this:Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Facebook (Opens in new window)Click to print (Opens in new window) Nurse Victor Kaphaso advises 14-year-old Wiliyamu Kerefasi about his insulin at Lisungwi Community Hospital in Neno District, Malawi Children with type 1 diabetes living in rural parts of the world’s poorest countries often struggle to get life-saving insulin as programmes addressing non-communicable diseases (NCDs) tend to be urban-based and adult-focused. But an initiative to address life-threatening NCDs affecting children and young adults – particularly type 1 diabetes, rheumatic and congenital heart disease, and sickle cell disease – is being extended to rural parts of a number of African and Southeast Asian countries. Called PEN-Plus, the initiative is based on the World Health Organization’s (WHO) Package of Essential NCD Interventions (WHO PEN), which encourages the decentralisation of NCD services to the primary care level. The “plus” indicates the inclusion of these more severe NCDs that mostly affect young people. “When we think of non-communicable diseases, we think of a problem that’s becoming epidemic that is associated with ageing, lifestyle diseases and urbanisation,” Dr Gene Bukhman, co-chair of the NCDI Poverty Network, told a meeting on Thursday to announce the extension of PEN-Plus to a further 10 countries. “But what’s lost in that narrative is the particular features of the burden of non-communicable diseases among the very poorest people in the world who live in largely in rural sub-Saharan Africa and South Asia,” he added. “There was a particular gap in treatment for a diverse set of diseases that were killing and incapacitating those under age 40,” said Bukhman, whose network is dedicated to addressing the gaps in universal health coverage for the world’s poorest one billion people. "PEN-Plus has already proven to be cost effective and impactful on the lives of people living with NCDs…but the success of this model hinges on global and local support." – @HelmsleyTrust Type 1 Diabetes Program Director Dr. Gina Agiostratidou — NCDI Poverty (@NCDIpoverty) September 15, 2022 Pioneered in Rwanda PEN-Plus was first pioneered by the Rwandan Health Ministry together with the international NGO, Partners in Health, and has since been extended to 22 countries. Ten of these countries were announced this week at a meeting hosted by NCDI Poverty Network, Helmsley Charitable Trust, UNICEF, and WHO AFRO. At last month’s WHO Regional Committee for Africa, the 47 member states also adopted PEN-Plus, committing to achieve high levels of coverage by 2030. “The strategy supports building the capacity of district hospitals and other first-level referral facilities to diagnose and manage severe noncommunicable diseases early, resulting in fewer deaths,” according to WHO Africa. In Rwanda, primary health nurses were trained to manage insulin, heart medications and echocardiography, services that previously had only been available in referral centres in the capital city. “This integrated approach allowed Rwanda to quickly decentralise the services down to intermediate care facilities, such as district hospitals, and to better support primary care,” said Bukhman. As a result, he added, the number of people receiving care for example, for type 1 diabetes increased by a factor of 10 between 2000 and 2015, reaching 202,000 patients by 2015. Haiti, Sierra Leone, Liberia, Cameroon, Nigeria, Burkina Faso, Benin, Ghana, the Democratic Republic of Congo, Rwanda, Uganda, Kenya, Tanzania, Ethiopia, Malawi, Zambia, Zimbabwe, Mozambique, Nepal, Chattisgarh state in India, Cambodia and, most recently, Bangladesh are all rolling out PEN-Plus programmes. Struggle for insulin Malawian clinician Dr Bright Mailosi (centre) Dr Emily Wroe, who has assisted Malawi to roll out PEN-Plus, said that treatment gaps manifested as patients showing up in hospitals with conditions that should have been managed at outpatients level: “A 16-year-old coming in with diabetic ketoacidosis (DKA), very sick. A small child with pneumonia non-attrition that we would find has sickle cell disease. A 28-year-old pregnant woman with heart failure because of severe mitral stenosis who had somehow had walked seven hours to see us.” “The gap was the fact they were in the hospital in first place, but also what was the discharge plan?” asked Wroe. “These were patients needed more than the primary care system. They needed labs, follow-up ultrasounds. They often needed food packages or school fees, and they needed to be back in school.” Malawian clinician Dr Bright Mailosi, who works full-time on implementing PEN-Plus in his country, mostly by training healthcare workers from rural facilities, says that his typical day can be summed up by one patient: “This 13-year-old girl has been two days in this ward. She’s a known type 1 diabetic. I realise she is in DKA because she had stayed for nearly a week without her insulin because her family cannot afford to get the insulin. Her guardian doesn’t have an idea of what to do. Even to get insulin from within the hospital takes like forever. “So my typical day, is trying to answer this question: How do we support this 13-year-old girl not to stay like for a week without insulin?” Resource shortages Mozambican physician Dr Ana Mocumbi, the other co-chair of the NCDI Poverty Network, says that the 10 new countries are each establishing two PEN-Plus training sites inand plan to enrol 500 to 1000 patients per siteto start with. “PEN-Plus providers, typically mid-level nurses and clinical officers, can be effectively trained within three to six months, with most of the focus being on mentored clinical practice, while master trainers need about a year.” The mentorship and supervision often involve specialists such as endocrinologists, cardiologists, diabetologists and haematologists “because PEN plus providers are dealing with risky conditions, and risky medications where the difference between too much and too little can mean a difference between life and death”, adds Mocumbi. “So we are also focused on efforts increasing the production of these types of specialists and supporting them to strengthen care at district hospitals in poor rural areas and not just in urban practises.” By 2025, the NCDI Poverty network could be ready to grow from 22 to 30 countries – with a total price tag of around $30 million annually. “This may not seem a lot of money,” said Mocumbi. “But we have found that even with very optimistic projections regarding economic growth, taxation in domestic investments in healthcare, low-income countries will simply be unable to finance their most basic services without external support for the next decade.” Image Credits: KSchermbrucker/PiH. 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