SNF Impact Report, 2022

Impact Report 2022

Our Vision

We believe in an Africa where children with type 1 diabetes have an equal chance at long, healthy, productive and gainful lives.

Thank you for a groundbreaking year!

In 2022, we served over 2,500 warriors at 32 clinics in two countries, Ghana and Uganda. We changed lives and made invaluable connections with affected families and communities. Thanks to you, our partners, donors and grantors, we made groundbreaking contributions to the type 1 diabetes discourse in Africa.

Again, thanks to you, we are now poised to grow our programs, strengthen our data and research to offer meaningful solutions and integrate them into local healthcare systems, and continue to chip away at the various parts of the problem in partnership with central and local governments and the many change agents in the type 1 diabetes space.

Screaming in a closet

Type 1 diabetes is deeply personal to me. When I lost my sister to the condition, the unsung children buckling under the weight of type 1 diabetes in Africa became my raison d'être. The children we serve don't have a simple solution to their diabetes care: they face poverty, illiteracy, food insecurity, stigma and many other externalities, so the problem is multifaceted.

In 2022 alone, 59 families lost a child to a preventable death. It begs the question, why? Why, despite decades of donations of insulin and medical supplies, glycated hemoglobin levels persist at an average of 10% above what International Society for Pediatric and Adolescent Diabetes (ISPAD) recommends? We believe that it is these externalities and multiple determinants of health that are impeding success and good clinical outcomes.

It has been difficult to find an audience that hears and heeds this message, that appreciates that the solution goes beyond clinical care and must include health equity. It has been akin to screaming in a closet, but we are getting there; our numbers speak for themselves. We are an underdog, punching well above our weight, and we're making a difference.

Life is a long-term plan

SNF's plans have all been short term because all funding since its inception has been dictated by the short funding cycles and limitations to specific programs. Brief funding cycles and grant restrictions tie our hands and prevent us from taking the long view, or ensuring adequate capacity to sustainably run our organization.

Long-term goals require long-term funding. Our mission to achieve self-sufficiency demands innovation and latitude that can't be built in short-term financial bursts. SNF is not a stop-gap charity organization. We aim to be a development organization that addresses the component parts of the problem and gets to the root causes to create sustainable solutions. And now we're at a crossroads. Our task is to reach those who recognize this vision and the importance of unrestricted funding, adequate operational capacity and/or multi-year funds to reach it.

From the bottom of our hearts

You, our donors, grantors and partners, have been instrumental in reaching this stage of impact. SNF has the trust of local communities and a strong regional network and local support, with expertise and brand recognition in the African diabetes space. We are ready to embark on the next phase of our journey toward sustainable impact and our collective effort, involving partners, donors and governments alike, to bring sustainable change to addressing type 1 diabetes and chronic illnesses in Africa.

We thank you from the bottom of our hearts for believing in these unsung warriors and for continuing to support SNF in our efforts to serve them.

Vivian Naba

- Founder & Executive Director

Our Collective Impact

2528 Warriors served

32

Clinics in Uganda and Ghana

772

5183

589

1312

Newly diagnosed and registered A1C tests administered COVID Vaccinations administered Village Health Teams trained and sensitized about T1D

Medicine on Motorcycles

Access to healthcare is one of the biggest hurdles for rural and lowincome households in Africa. Children with type 1 diabetes (T1D) often travel over five hours, mostly on foot, to get to the medical and lifesaving supplies they need. When COVID-19 placed a disproportionate risk on these already vulnerable families and households, SNF, in partnership with the Helmsley Charitable Trust, developed Project Boda-boda to improve access to insulin and essential medical supplies.

Boda-boda is the local term for motorcycle taxis in Uganda. Project Boda-boda is a motorcycle taxi network that delivers insulin and other essentials to children in Uganda or that delivers patients (aka warriors) to clinics to access their healthcare if their glycated hemoglobin (A1C) is consistently above 8%.

Project Boda-boda operates out of 31 T1D clinics across Uganda and at each clinic, the program is coordinated by a nurse/healthworker and a warrior coordinator, a young adult living with T1D and who holds the mandate to mentor and encourage compliance and adherence to medical regimes and prescriptions. Warrior Coordinators, under the leadership of the clinic nurse/healthworker, conduct community outreach and work with Village Health Teams to raise awareness about T1D in their communities.

Achievements

5099 glycated hemoglobin (A1C) tests conducted

The average A1C in 2022 was 10.6%

Clinic participation and compliance are up by 30% since December 2021

Insulin is a basic human right and it is wrong that globally, 1 in 2 people who need it, do not have access to it

Growing in Ghana. Expanding beyond Uganda.

In June 2022, SNF partnered with Sanford Health to establish a type 1 diabetes clinic in Ghana with seed funding from the Stavros Niarchos Foundation and Schwab Charitable. Thanks to our partnership with Life for a Child the clinic has guaranteed supplies of Eli Lilly Insulin, Roche glucometers and other essential medical accessories to the clinic. On World Diabetes Day in November 2022, the Clinic at Sanford Health in La Nkwantanang Madina was officially opened by the Honorable Mayor Jennifer Dede Ajabeng and Honorable Francis-Xavier Sosu of the Madina Parliament.

Since opening, the clinic has become a thriving hub of care and community support providing critical insights such as the 15% suicidal ideation rate among warriors caused by social isolation, financial burden, and ineffective coping mechanisms. The multidisciplinary team comprised of a pediatric endocrinologist, psychologist, dietitian and specialized diabetes nurse is up to the task of addressing these challenges and providing holistic healthcare to children, adolescents and young adults with T1D in Ghana towards improving their clinical outcomes. As is typical of our clinics, the team is supported by a Warrior Coordinator, a young adult with the lived experience charged with mentoring and supporting the warriors in the community.

1 Clinic open serving the greater Accra region

Over 50 warriors diagnosed, registered and served

South-South Cooperation

There has long been an emphasis on South–South cooperation and collaboration In building medical capacity where shared experience and resources can build the capacity necessary to meet similar health challenges. Whether it is the exchange of physicians and medical experts or residency training programs, there are a multitude of examples within the field of medicine that show the importance of South-South cooperation. We are proud to reinforce this tried and tested mechanism by borrowing a diabetes specialized nurse expert, Jeofrey Ojilong, from Uganda to join the Sanford Health team in Ghana and transfer his knowledge and share his experience for a period of 18 months. Together with the holistic team, the T1D Clinic at Sanford health in Ghana is benching marking a model of care in low-income settings.

Image Description (L to R): Nurse in training: Yaa Amoah Bimpeh (also a warrior), Dietician: Mr. Maxwell Konlan, Clinical Psychologist: Mr. Abishai Anlimah, Diabetes Specialist Nurse: Mr. Jeofrey Ojilong (borrowed from Uganda), Pediatrician: Dr. Sroda Hottor. Missing from this picture is our Pediatric Endocrinologist: Dr. Laila Adutwum who is one of only 3 pediatric endocrinologists in the whole of Ghana and Clinic Warrior Coordinator: Mr. Issaka Abdallah.

Contextualized Solutions

Data from our camp in Ghana in 2019 showed that nearly 20% of the 60 campers experienced nocturnal hypoglycemia more than once a week and 26% had fainted from a low blood glucose. Even more concerning was that only 62% of campers reported not having juice or sugar available to treat a low blood glucose. Cincinnati Children's Hospital has therefore joined our search for contextualized solutions for hypoglycemia. Led by Dr. Nana-Hawa Yayah Jones and Dr. Alison Murray, the research project will assess the probability of a multidisciplinary and multifaceted clinical approach to type 1 diabetes care for the reduction in the rate and severity of hypoglycemia in Ghana. The research will also assess social determinants of health (non-medical factors like poverty, food insecurity, illiteracy that affect health) in order to determine their impact on rates of hypoglycemia.

This is the beginning of our research program for contextualized solutions for type 1 diabetes in low resource settings.

WARRIOR. A person with type 1 diabetes who lives with great courage, strength, perseverance, resilience and optimism. An inspiration to all.

Testimonials of impact

“Even without my type 1 diabetes life had been hard. My grandmother and father would struggle for school fees and now, with type 1 diabetes, they also had my medication to burden them. When I could, I would cut firewood and sell it to people in the village to help with my school fees and medication. This is how I completed Senior 4.

After Senior 4 all hope was lost as my grandmother and father had done all they could. For 2 years I woke up with no sign of a future. God must have been watching over me because I was invited to apply for the SNF Vocational Studies scholarship and it has changed my life. To be in school, to be assured of three meals a day, to have a community of fellow warriors from whom to learn and share has changed my life. When I complete my program in welding and metal fabrication, I will be able to find employment and to take care of myself which to me was not something I could never have imagined after completing my Senior 4 where one meal a day, if that, was all I had. Now, I have hope and a community of warriors to learn from and share with and the means to support myself.”

“Being a refugee from South Sudan, 14-year old Patrick Bojo has suffered severe trauma. His mother is a paraplegic and could not care for Patrick when he was diagnosed. So she sent him to an orphanage in northern Uganda and later, he was moved to one closer to Kampala so he could receive care from the T1D clinic at Mulago Referral in my charge. The immersive psychosocial and mental health program instituted by SNF from which Patrick has been a beneficiary has had startling results. Patrick was withdrawn catatonic and within a month has started talking and communicating clearly, managing to answer all my questions which he wasn't able to do until now. Moreover, and more importantly, his A1C has come from an average of 14.4% to 8.3%.”

“As a Warrior Coordinator with SNF, it is my job to be on the lookout for children in my village who might have type 1 diabetes and as God would decide, I was on a bus from Kampala to my home in Arua in Northern Uganda when I noticed Sharon a 12year old sitting in front of me with her Uncle her caretaker. She was asking for water and frequently stopping the bus to urinate. Being a warrior myself, I recognized exactly what was happening and I asked her caregiver to bring her to the T1D clinic at Arua Regional Referral hospital where I work and indeed, Sharon was diagnosed with type 1 diabetes. We have a long way to go but she is under the care of a committed clinic with support from SNF I have been able to use my own diagnosis to support her and to support others”

Roman's last attempt at running away from his family that had labeled him “troubled” due to his diagnosis resulted in him falling unconscious on a roadside in Busia, a border town between Uganda and Kenya where a good Samaritan took him to the nearest hospital.

“When I woke up in the hospital, I was depressed and was hoping that I would just die because life at home was miserable. I am alone, I am not allowed to play with other children in the village because I might give them my disease. My first clinic day at the T1D clinic in Masafu is the first day I had smiled in a very long time. I made many friends and the clinic team came home to talk to my father and my siblings and tell them about the free services and medical supplies at the hospital. I was so thin now I am fat. I am now back in school under the SNF scholarship program. I cannot believe that this is my life now and I am grateful to Egessa from SNF and Henry from my Village Health Team that has nursed me back to health and continue support me”

Michael Muwanguzi, 23 Mulago T1D Clinic

Dr. Thereza Piloya Were Pediatric Endocrinologist (1 of only 4 in Uganda) Mulago T1D Clinic

Dankan Onzima, 25 Arua T1D Clinic

Roman Bwire, 13 Masafu T1D Clinic

T1D education, community building, peer-to-peer activities are 3 important aspects of helping warriors cope with chronic illness

Camps for Community

SNF believes in inclusive, supportive, stigma-free and empowering “we can do this” environments where warriors with the lived experience come together for 4 days to enjoy community building activities, learn T1D basics of self-management, interact with doctors, specialists, nurses and psychologists and bolster peer to peer learnings. Project Tuyinza is our inaugural and ongoing initiative which aims to create this environment and develop knowledgeable, empowered and educated warriors to improve their long-term health prospects using camps and other community building mechanisms.

Due to COVID-19, SNF halted camps and instead instituted one-day Warrior Workshops which are held twice a year at each of the 31 clinics in Uganda and select subjects are taught and discussed. SNF conducted COVID vaccination survey and determined the low vaccination rate amongst warriors was due to limited access. In November and December 2022, SNF supported the Ministry of Health facilitating the vaccination of all eligible warriors. We expect to reinstate the warrior camps in 2023 including in Malawi where we have renewed our partnership with Partners in Health.

COVID-19 didn't stop our knowledge sharing tools and as such Project Tuyinza expanded to include video and literature publications on type 1 diabetes education in local languages to further the learning that was interrupted by the pandemic.

Achievements

62 Warrior Workshops were held (2 at each of the 31 clinics) on diabetes, mental health, and insulin pen education

7 T1D Educational videos were produced and developed by a Ugandan production company, Savannah Moon

Educational videos were translated into English, Swahili, and Luganda

6 guides and other informative materials have been developed for warriors, parents and caregivers

Guides have been translated into the 20 most common African languages with a plan to translate into an additional 20 languages

589 COVID vaccinations administered

CASE IN POINT

Technology and medical advancements improve the lives and outcomes of our warriors so we are always updating our training modules. The T1D clinic at the Jinja Referral hospital boasts over 70 warriors for whom the split insulin regime (short acting + long acting) is available, thanks to Novo Nordisk. However, 56% of these warriors continue to manage their blood glucose with the human premixed insulin regime (mixtard) which is not recommended by The International Society for Pediatric and Adolescent Diabetes (ISPAD). All 56% do this because they are yet to understand the administration of the complex split insulin regime and therefore experience frequent episodes of hypoglycemia due to overdosing. This highlights the need for continuous and ongoing T1D education through our Warrior Workshops, Camps and Home Visits.

Education is the most important modifiable social determinant of health, and has been shown to improve health outcomes across the lifespan

Education is everything

Education is a major determinant of health, without which Warriors will continue to have poor clinical outcomes. Education empowers and improves skills such as literacy, numeracy, cognitive ability which can affect health directly (understanding and complying with health care regimens, improving doctor-patient communication, empowering children to advocate for themselves particularly in communities where stigma is rampant) and indirectly (foundation for productive and gainful lives).

Project Mishra, named after its seed funders, the Mishra Family, therefore provides primary and secondary level scholarships and healthcare to the most vulnerable warriors in Uganda. In partnership with Diabetes Empowerment International, Project Mishra expanded to provide vocational level education to five warriors who show promise as community leaders.

Achievements

20 Mishra Warriors performed at the top of their classes because the program made provisions for continued remote education throughout lockdown which NYT called the world's longest lockdown in Uganda.

5 new vocational enrollments

Comprehensive education and medical campus

Social determinants of health like literacy and poverty prevent children with type 1 diabetes in developing countries and low income settings from thriving even with basic necessities like insulin and glucometers in hand.

Project Elimu is a comprehensive medical campus and special needs boarding school that will provide contextualized care for these vulnerable children and give them a chance for long, heathy, productive and gainful lives.

In addition to medical, chronic and psychological care, housing, and education, thanks to seed capital from McPike Zima Foundation, Freeman Family Foundation, Davis Family Foundation, Doyle Trust, Saltz Foundation, Mishra Family Trust, Valdes Family and the Vanguard Charitable Trust, Project Elimu will pioneer the research and exploration of low-income solutions for type 1 diabetes so even more children in low income settings can benefit from our combined efforts. We are determined to see Project Elimu become a pillar of socio-economic endocrinological and chronic healthcare in Africa, and home of T1D medical capacity training in Africa and we invite you to share in this future with us.

Policies for Permanence

Donations of insulin and essential medical supplies are critical to the implementation of our programs, but sustainability and permanence comes from government and community ownership. SNF works to create a world in which no one has to rely on donations.

The Pamoja Advocacy Program, a partnership with T1Interntional, equips advocates from 6 African countries with the tools, strategies, and skills to create this world. Advocates with the lived experience are trained and given skills to fight for policies that represent their needs and those of people living with T1D in their countries and across the region.

Achievements

4 skills building training workshops for 22 advocates in Ghana, Kenya, Tanzania, Uganda, Nigeria and South Africa

It is not enough to provide insulin and a glucometer when a child is surrounded by abject poverty. We have to address these externalities for good health outcomes

In 2023, thanks to you, SNF will focus on:

Data to illustrate the scope and scale of type 1 diabetes in Africa and to inform decisions, responses, policies, and deployments or meaningful interventions and innovations to improve the quality of care and patient outcomes.

Sustainability of SNF and growing unrestricted funds as well as operational capacity that matches an organization at this stage of maturity and with a mandate to provide lasting change for the communities in which it operates.

Growing existing programs and renewing partnerships to continue to transform lives in a sustainable way.

Researching and delivering practical and contextualized solutions for type 1 diabetes in low resource settings.

Leading the type 1 diabetes discourse in Africa towards improving clinical outcomes.

Board of Directors

President, Board of Directors

VIVIAN NABETA Founder & Executive Director

INYANG EBONG - HARSTRUP, Ph.D

MARIANNE MUCHURA, MD Medical

RAFAEL TOVAR Fundraising

XAVIER PATTERSON

Digital Marketing & Technology

CHRISTINE

OPHELIA NABETA

In-country operations & Regional coordination

EFUA COBBINA, Esq

FREEMAN Legal Research & Data

In Memoriam

Celebrating the lives of these 40 warriors along with the 19 not listed who prematurely succumbed to complications of type 1 diabetes. Average years with type 1 diabetes was 5.5 years.

Brian Canwat

Katalya Kabiira

Babirye Lahiba

Patience Mary Ntegeke

Nelson Byuhanga

Phiona Nakabitto

Sophia Tenywa

Racheal Nakalema

Mercy Kaboya

Takia Namusoke

Anisha Naiga

Agnes Nakalega

Doreen Baizire

Steven Komakech

Sheknia Iriho

Stella Aol

Aziz Masaba

Beatrice Kamukune

Phiona Agenorwot

Paul Otulo

Babirye Petrina Watson Ssekkide Wilson Tusiime

Gloria Auma

Sarah Akello

Musa Mayanja Mudoyi Swalih

Shamim Bule

Gracious Ahwera

Kato Lutaaya

Francis Kisembo

John Lendriyo

Medius Kembabazi

Ivan Oforywoth

Innocent Karoro

Sandra Namuyimba

Haruna Droma

Vicky Adivuya

Gloria Asidroru

Morish Ojaku