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17 May 2019

Meet our Community Advisory Network of Patients Living with RHD and Frontline Health Workers

Reach Community Advisory Network
Reach Community Advisory Network

Reach values Inclusivity, Respect and Equity. We believe that first and foremost, our activities are driven by the needs of people living with RHD and the people who care for them. In keeping with this standard, Reach is proud to announce the creation of our Community Advisory Network (CAN), made up of patients and frontline health workers from around the world to provide a formal forum for their voices, expertise and experiences to be heard and included in our mission:
 
"To promote the health of vulnerable populations through technical support to local, regional and global efforts to prevent and control rheumatic fever and rheumatic heart disease (ARF/RHD)."
 
We have asked our network members to provide their vital feedback for the development of appropriate and relevant resources that Reach strives to provide to the global RHD community. CAN members are appointed for a term of one year with the ability to serve one additional year at the discretion of Reach.

CAN members have agreed to devote 6-8 hours per month to respond to Reach requests to review documents, tools and/or planned activities and to provide thoughtful feedback on the usefulness, appropriateness and relevance of the tools and/or planned activities. Our plan is to add more members over the coming year to help us capture the voices and contributions of this very important constituency in the global RHD community.

Please meet our three, very special founding (inaugural) members here in this brief introduction.

 

Elizabeth Machilla

Name: Elizabeth Machila
Organization: BEATRHD ZAMBIA
Position Title: Registered Nurse and Coordinator for BEAT RHD ZAMBIA
Country: Zambia

Elizabeth Machila is described by her colleagues in Lusaka, Zambia, as a dedicated nurse with a passion for the well-being of her patients living with Rheumatic Heart Disease/Fever. Elizabeth is a registered nurse /midwife and the coordinator for Beat RHD Zambia Program. Beat RHD has been actively involved in a school screening program for subclinical disease using a portable echocardiogram as well as clinic sensitization on the use of benzathine penicillin for treatment of bacterial sore throat.

Elizabeth has been actively involved in the Beat RHD Zambia Program since January 2015. The multiple aspects of her position include making sure children identified in the school screening programme attend their appointments, keeping RHD project records, and giving health talks on the use of Benzathine penicillin. She is actively involved in activities for championing sexual and reproductive health among women and adolescents living RHD in Lusaka, Zambia. This project is important since so many women and girls fall pregnant without optimising their health and prenatal care, and contraception is not widely used in this population.

Patients and co-workers describe Elizabeth as a reliable, trust worthy and compassionate advocate for RHD prevention and care. For patients who already have the disease, she encourages her patients to make health lifestyle choices and that leading a normal life is possible! She has travelled internationally (to Japan) and works with international project teams. She is fluent in English, computer literate and has access to the internet for effective communication.

Samuel Phiri

Full Name: Samuel Phiri
Organisation: Police Force (National Assembly of the Zambian Parliament)
Title: Police Officer
Country: Zambia

Samuel Phiri or “Sam” is also from Lusaka, the capital city of Zambia. He is a police officer for the National Assembly of the Zambian Parliament where he has worked for the past five years. He represents RHD patients on the Reach Community Advisory Network. As a young child, Sam was sickly and small. His journey took his parents along the all-to-familiar path of missed diagnoses and treatments that didn’t help until he got specialist care many years later at the University Teaching Hospital in Lusaka.  

Sam’s story from sickness to health can be found here in a video recorded at the Uganda RHD “Listen to My Heart” patient event and Stakeholders’ Meeting in 2017. He recounts the burden that RHD created for his family where his hospitalisations and medical care took most of their resources; his education was disrupted and worst of all, he felt a stigma from his community members who didn’t understand what living with RHD is all about. As a result, Sam was reluctant to go outside to play with other children. He even felt some of his family members avoided him – thinking they would catch the disease from him.

Sam met other RHD patients for the first time at the University Teaching Hospital where he was thrilled, excited and relieved to meet others who shared his experiences. Sam eventually had valve replacement surgery in South Africa and now he is a vibrant, healthy and productive man who is passionate to see RHD eliminated from his country. He has experienced the inconvenience, cost and discomfort of monthly penicillin injections. He also has first-hand knowledge of managing the anticoagulation therapy required after valve surgery in a resource-constrained setting.  

Sam was chosen to serve on our CAN because of his experience, knowledge and empathy for PLWRHD, where he can represent their interests in providing experience-based feedback on the work of Reach.  

“I am passionate to eradicate RHD in my country, Zambia, and the world... Sensitization of the community in order to raise awareness on how to prevent RHD is important to me.”

Januario Dos Santos

Full Name: Mr Januario Dos Santos
Organisation: Maluk Timor
Title: Rheumatic Heart Disease (RHD) - Penicillin Register Coordinator
Country: Timor-Leste

Januario Dos Santos is a community health worker with a background in public health. He was integrally involved in the first echocardiography-based screening study which described a very high prevalence of RHD in Timor-Leste. He is the coordinator of the first RHD register in Timor-Leste, which was created in 2016 as a result of that screening study.

With the help of other staff from Maluk, Timor, Januario has been effectively delivering penicillin to patients on the RHD register, mostly in remote regions of Timor-Leste.  His engagement with the communities he serves, plus his dynamic nature, have resulted in 70% of the Timorese registry patients reaching 100% compliance with their secondary prophylaxis. Januario regularly interacts with doctors in Australia via internet to ensure that he is delivering the best possible care to his patients, and that they receive appropriate follow up. He is a truly committed advocate, a good public speaker, and is fluent in English.