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We help shape global and local policy, develop leaders, and catalyze change to improve access to essential treatment for and prevention of chronic diseases among the world's poorest.

From boardrooms to city streets, we combine diverse technical expertise and grassroots advocacy inspired by the AIDS movement.

 

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RHD Action Awards Eldoret Chapter Small Grant Award

Launched this year, the RHD Action Small Grants Program funded five activities in low-and-middle income countries across the globe to support groups who are already addressing the work of RHD and to bring the work of key RHD stakeholders under the RHD Action banner. Successful applicants were awarded $2,000 with the expectation that the activity would be completed within six-months. Last month, our small grant winner in the Fiji was profiled.

Ms Dilys Kemunto Nyariki, a sixth-year medical student at Moi University, School of Medicine in Eldoret, Kenya was the project lead on behalf of the Eldoret Chapter of the Young Professionals Chronic Disease Network (YPCDN) for the project entitled, “Hearts to Hearts: A Rheumatic Heart Disease (RHD) Awareness Campaign.” This is the second RHD Action Small Grants Programme recipient to complete their project and a report of their accomplishments follows.

This ambitious project focused on both empowering People Living with RHD (PLWRHD) and educating school children on RHD prevention. Project volunteers included twenty students from the Moi University School of Law, School of Medicine, School of Public Health and the School of Business. Ms Kemunto Nyariki used the small grant award to supplement a larger project that was carried out in two phases: from January to April 2017, and then beginning again in July 2017, with the award of the RHD Action small grant.  

The YPCDN has an established track record in conducting RHD awareness activities in Kenya. In 2013, they carried out an RHD awareness project in Nairobi and launched the first RHD patient and caregiver support club in Kenya. A second RHD club was launched in Machakos town in 2015. In the first half of 2017, the Eldoret Chapter conducted a community awareness programme that reached approximately 5,200 primary school children and teachers. The team reached another 5,670 school children with the addition of the RHD Action small grant funds in the second half of 2017, bringing the total of children reached since the start of their campaigns to approximately 10,670.

These most recent school-based programs were carried out in Uasin-Gishu County and targeted children from low-and-middle income homes. As with the previous RHD awareness activities, YPCDN volunteers were trained with information on prevention, and the prognosis and progression of the Strep Throat-to-Rheumatic Fever-to-RHD valvular disease process in advance of the activities. During the sessions, children were divided into groups according to their class/age and then each group was assigned a team leader that taught them how ARF and RHD looks and feels, and how both conditions can be managed and prevented. The children were urged to spread the message to their family and friends through a chant: “tell a friend to tell a friend to save a life”. 

Since teachers are the first contacts that children have outside home, project leaders realised the importance of empowering both pupils and educators. Teachers were provided information in separate sessions on the symptoms displayed by children who might be at risk, disease prevention and how to navigate the referral channels to help children access the healthcare services they need. Posters with health messages and information about RHD were created and distributed to the schools to serve as a visible reminder to the children on how to protect their hearts. T shirts were designed and distributed for the school events and the organisers undertook the responsibility of animating and translating the Rheumatic Heart Disease Child’s Rights flier into Kiswahili with support from Australian-based Caring and Living as Neighbors’ (CLAN).

The second phase of the project was conducted at the Rheumatic Heart Disease Clinic in Chandaria Chronic Disease Centre in Eldoret - one of the largest public chronic disease centres in the country - where an RHD patient support group was launched. A patient event was organised to bring together PLWRHD and their families with clinicians and healthcare workers with a specific focus on women of child-bearing age (15-30 years) living with the disease.  

With the approval of the Ministry of Health and the cardiac clinic management, patients were selected from those attending the Thursday RHD Clinic and from inpatients who had been admitted for the management of their disease at Moi Teaching and Referral Hospital. Thirty-nine people attended the opening session of the patient support group. Among the invited guests were Dr. Phillipe, a resident in Reproductive Health with a special interest in cardiac disease in pregnancy, Lennah Ndung’u, a final year medical student who as a child was diagnosed with rheumatic fever, and Purity, a 24-year-old mother of one who had undergone open heart surgery to replace her mitral and tricuspid valves.

Ms Lennah Ndung'u sharing her story of living with rheumatic fever

The five-hour event kicked off with an information session describing what RHD is, its signs and symptoms, and management and prevention. Healthcare providers emphasized the importance of patient-health worker collaboration and the advantages of communities working with caregivers. Participants were reminded that working toward mental, physical and social well-being is everyone’s responsibility. This was followed by an extensive discussion led by the PLWRHD and their relatives seeking to find answers to some of their more worrisome questions and clarifications on the topics that were important to them.  

Later in the morning, patients and their families heard comprehensive descriptions of the surgical options for severe disease, and demonstrations on how each works and the after-lunch session was focused on the experience of living with RHD. Lennah shared her story of how she was diagnosed with rheumatic fever at the age of eight, and endured painful monthly penicillin injections for a number of years. She spoke about the challenges she faced during the period and the need for a strong support system that includes parents, guardians, siblings and caregivers to ensure adherence to her medication. She was keen to explain the intentional steps she takes in her day-to-day activities to protect her heart and maintain a high quality of life and health.

Purity described her personal experience of living with severe RHD and the ultimate turn-around in her life after open heart surgery. She spoke about the many challenges faced before and after surgery, and the hope and determination she now has in pursuing her dream of become a nurse. The information and discussions were reviewed by participating in a Jeopardy game quiz at the end of the event that covered the many aspects of living with RHD.  

The personal experiences shared by PLWRHD were by far the highlight of the event; this was the first time that most of the patients and relatives had attended an event such as this, and the first time for many to meet and share experiences with fellow PLWRHD. The sentiments shared at closing were those of hope, encouragement and desire to be more involved in the fight against RHD. 

A strong call from the community included the inclusion of local and international health bodies, including the government, to make child health a priority so that no child is deprived of his/her right to access affordable health care services, asserting that where a child lives should never determine whether that child lives or dies. Patients expressed the need for Universal Health Coverage and other ways that would lower the cost of treatment and increase access to affordable, high-quality care. 

Ms Kemunto Nyariki on behalf of the Eldoret YPCDN expressed her gratitude to RHD Action for their continued support, Drs Mellany and Myra for the guidance provided throughout the project, and CLAN (Caring and Living as Neighbours) who assisted with the Child’s Rights flyers. Management from the Cardiology Clinic at the Chandaria and Chronic Diseases Centre. Thanks were also extended to GK Prison Schools, the school administration of Langas, Sosiani, and the University of Eldoret, the County Department of Health (Uasin-Gishu) for allowing the team to work in their schools. Lastly, gratitude was expressed to the teachers for their support and patience, all the volunteers who dedicated their time and energy to the project, and pupils who were present and made the activity an eventful and fun project.

RHD Action Awards Eldoret Chapter Small Grant Award
RHD Action Awards Eldoret Chapter Small Grant Award

YP-CDN Partners in Youth Innovation Lab held at WHO Financing Conference in Copenhagen, Denmark

The WHO Global Dialogue was part of the informal process leading up to the United Nations General Assembly Third High-Level Meeting on the Prevention and Control of Non-communicable Diseases in September 2018. It was co-organized by the World Health Organization and the Government of Denmark and supported by the Organisation for Economic Co-operation and Development, the World Diabetes Foundation, the International Federation of Pharmaceutical Manufacturers and Associations, the World Economic Forum and the NCD Alliance. 
 
To enhance innovation at the Global Dialogue, a Youth Innovation Lab hosted 20 young talents from around the world in a 4-day creative process. The outcome was five ideas to help close the financing gap for NCD responses, two of which were presented to Global Dialogue delegates at the meeting’s conclusion. All five ideas are available online; the global network of aspiring NCD-leaders behind these ideas will continue to work on realising them in the months ahead. 
 
The Youth Innovation Lab was co-organised by the World Diabetes Foundation, the International Federation of Medical Students Associations (IFMSA), NCD Child, Young Professionals Chronic Disease Network and NCD Free.
YP-CDN Partners in Youth Innovation Lab held at WHO Financing Conference in Copenhagen, Denmark
YP-CDN Partners in Youth Innovation Lab held at WHO Financing Conference in Copenhagen, Denmark

Inappropriate prescribing among Ethiopian cardiovascular patients using STOPP/START criteria.

Cardiovascular disorders are among the leading chronic illnesses. Medications play a pivotal role to control the signs, symptoms and progression of these disorders. However, the outcome of the management is depend on the delivery of the right regimen to the right patient. A recent prospective evaluation of prescriptions among Ethiopian cardiovascular patients have identified that approximately, two-thirds of elderly cardiovascular patients encountered potentially inappropriate prescription which is more significant.  The magnitude of inappropriate prescription is aggravated by long hospital stay and large number of medications. Therefore, it is essential to evaluate patients’ medications during hospital stay to reduce the burden of potentially inappropriate prescription. Members of the young professionals’ chronic diseases network-Gondar chapter have been engaged in the acquisition, analysis and interpretation of results on this project.

Readers are advised to visit the following link to access the full text of the article.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0195949

Inappropriate prescribing among Ethiopian cardiovascular patients using STOPP/START criteria.
Inappropriate prescribing among Ethiopian cardiovascular patients using STOPP/START criteria.

Older patients’ perception of deprescribing in resource-limited settings

As people get older, Chronic diseases become common causes of diseases, having multimorbidity. This will lead to have polypharmacy in older patients contributing to the regimen complexity which can affects patients medication adherence, prescribing quality, adverse drug reaction, health related quality of life and death. All these necessitates a clinical intervention such as deprescribing (reducing inappropriate poly-pharmacy). But such intervention should consider older patients decision/willingness in medication discontinuation process as it may affects the ultimate their clinical outcome. Though this has been extensively explored in developed countries, no attempt was made to explore willingness of older adults with chronic disease for discontinuation of inappropriate medications. 

Young Professionals Chronic Disease Network (YP-CDN) Ethiopia chapter, has worked with older patients living with chronic diseases and has identified their priorities for advocacy, and were used as an input for this research project.

Medication safety for older patients with chronic disease requires deprescription of the inappropriate prescriptions. 

Find the full article at http://bmjopen.bmj.com/content/8/4/e020590

 

Older patients’ perception of deprescribing in resource-limited settings
Older patients’ perception of deprescribing in resource-limited settings

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