Summary
Tumaini La Maisha is a Tanzanian NGO dedicated to support children with cancer and fights every day to stop the unnecessary suffering and loss of young lives from a cancer diagnosis. Tumaini la Maisha (TLM) was registered in 2011 inspired by the commitment of the parents and staff and the incredible bravery of children who attended the first children’s cancer ward in the Ocean Road Cancer Institute.
Muhimbili National Hospital (MNH) now houses the largest children’s cancer ward in the country built by the Rotary Clubs of Dar es Salaam in 2013. TLM works in close partnership with MNH supporting the excellent work of the incredible paediatric oncology unit based at Upendo Children’s cancer ward in Jengo la Watoto MNH. Through this partnership all inpatient children’s cancer care is offered free of charge to all patients.
For the estimated 4,500 children who develop childhood cancer every year in Tanzania, the ability to afford the travel, medical and associated costs is a distant dream. As a result, TLM has set about supporting and connecting clinical facilities across the entire country in a collaborative National Children’s Cancer Network (NCCN). As of 2022 there are 12 participating sites across 10 regions (Dar es Salaam – MNH/ORCI; Kilimanjaro – KCMC; Mwanza – BMC/SDDH; Dodoma – BMH; Lindi – LRRH; Mbeya – MZRH/Baylor centre; Zanzibar – MMZ; Morogoro – SFRH; Consolata Hospital – Ikonda, Makete; Manyara- Haydom and Tanga- Bombo). The aim in the next 5 years is to have more than 30 sites across every region so that no child is more than a 4-hour journey from the Network.
Today, TLM funds, sources and provides a range of supports to these sites including all chemotherapy for every child in Tanzania; medical subspecialty training, nutritional support, transport, access to oncology diagnostics, health insurance, hostel, child and parent education and clinical outreach services, all offered completely free of charge. Survival rates have gone from less than 10% to more than 50% for children seen and numbers of children treated have increased from 120 in 2005 to 916 in 2023. However we will not stop until we’ve reached every child who needs care.
Tumaini la Maisha is run on a shoestring budget, while supporting and maintaining international standards of care. This is best illustrated as we estimate the cost of treating all 916 children in 2023 to be equivalent to the price of treating 5 children with leukaemia in Europe.
We believe reaching and treating every child with cancer in Tanzania is not only essential but also eminently possible.
Curing kids cancer in Tanzania – together we can! Please consider supporting our efforts.
PAST
Paediatric oncology started in Tanzania in 2005 with:
- One ward – 17 beds
- 120 new patients annually
- One doctor and three nurses
- Survival rates less than 10%
- Chemotherapy reliably available for one condition (Burkitts Lymphoma)
PRESENT
THANKS TO the efforts of the Tanzanian government and in partnership with TLM, THE FOLLOWING ARE AVAILABLE ENTIRELY FREE OF CHARGE TO CHILDREN WITH CANCER:
A Tanzania National Children’s Cancer Network of 15 collaborative treatment sites.
- TLM supports these sites by providing access to free chemotherapy for all; central cancer diagnostics; patient and sample rapid transport; remote paediatric oncology expert advice weekly and on demand; funding for national childhood health insurance to all enrolled.
In addition, TLM has worked with Muhimbili National Hospital to provide improved paediatric oncology facilities in the national Hub in MNH, Dar es Salaam including:
- A custom built Paediatric Oncology ward with 65 beds at our Hub in Muhimbili National Hospital
- A 22 bed home away from home, Ujasiri (Strength) House
- A paediatric and a Neonatal Intensive Care Unit (NICU)
- Support for hi-tech rapid (leukaemia flow and pathology immunohistochemistry) cancer diagnostic services
- Intensive nutritional support AND clean fresh drinking water throughout both paediatric and maternity buildings
- Comprehensive psychosocial support including school, play-therapy, parent education, social work support
- A TLM National paediatric oncology electronic medical record system which has been uniquely developed with African needs in mind
TLM also supports everyone’s participation in international collaborative research trials including:
- UCD – Tanzanian SALAMA Leukaemia study Birmingham/Warwick – Rituximab Lymphoma Study
RESULTS SO FAR:
These efforts and resources have had the following impact:
Supported the treatment of over 1000 children annually (new and ongoing treatment) with cancer across the network.
- Increased overall survival from less than 30% to more than 50%
- The number of children treated annually has more than doubled in the last 12 years
- Access to care has grown from 1 site at MNH to 15 sites (and growing) nationwide
All these achievements and lives saved have been fully funded by the many wonderful charitable donations TLM received and at no cost to the families involved
FUTURE
TLM’S SIGHTS ARE NOW SET ON THE FOLLOWING ACHIEVEMENTS: (Please note no other country in the entire region is aiming for such an ambitious collaborative and comprehensive children’s cancer plan)
- Reach every child with cancer in Tanzania. (4000 plus annually)
- Cure rates approaching those found in resource rich countries (0% +)
- Expand our National Network of clinical sites for Paediatric oncology to more than 30 sites. This will ensure no child is more than 4 hours journey from care.
- Create/support a secure reliable national transport network for patients, samples medications and cold chain items.
- Improving the support we offer at each site to include (where appropriate) all services mentioned above plus: a hostel, nutrition, psychosocial programme, education, chemotherapy, staff, protective equipment and consumables.
- Complete the development of our revolutionary CleverChemo prescribing App, which will remove 90% of written prescribing errors. We hope to share this right across the continent of Africa and beyond wherever there is need. There’s nothing like it in the world!
- Roll out our CleverCharts programme across the entire National Childrens Cancer Network so that accurate information can be gathered securely and in a standardized manner to improve care and treatment and highlight areas in need of additional efforts.
- Continued participation in International collaborative research including Multicentre Randomised Controlled Trials (RCT)
- Build and grow our incredible donor base and in particular our regular monthly/annual donors to support the quality curative treatment for every child with cancer in Tanzania into the future. Their LIVES MATTER!
Our Story so far …
Before this journey began, nine out of ten children with cancer who reached treatment facilities in Tanzania, died. In addition, those that reached these facilities represented less than 10% of children with cancer in Tanzania. As a result – in overall terms a cancer diagnosis was fatal for almost every child in the country.
The opening of the first Children’s Cancer Ward in Tanzania, at the Ocean Road Cancer Institute (ORCI) under Dr Jane Kaijage in 2004, marked the start of national efforts to bring about significant change in this neglected field. The Children’s Cancer Ward immediately took part in a multi-centre study for the Treatment of Burkitt Lymphoma (BL), at the time the most common children’s cancer in Tanzania. This was coordinated by the International Network for Cancer Treatment and Research (INCTR). Within three years, cure rates for BL had improved from less than 10% to greater than 70% for children treated.
In April 2006, Paediatric Oncologist Dr Trish Scanlan conducted a needs assessment of this children’s oncology ward and reviewed outcomes of new patients from 2005. Results showed that while the outcome for BL children was steadily improving thanks to Dr Jane and the study, most other children attending the ward were dying.
In 2007, supported by the INCTR, Dr Trish returned to join the dedicated team changing the narrative of children’s cancer in Tanzania. While compassion and respect for the children were in high supply on the ward, the same could not be said for the supply of drugs, consumables, adequate staffing numbers, services and sub-specialist professional education for everyone involved in their care. From this lack of resources and sustainability came the idea for Tumaini La Maisha, Hope for Life, which would become the international NGO collective; We Are TLM.
Also in 2007, the Ministry of Health, Community Development, Gender, Eldery and Children (MoHCDGEC) formed the Cancer Control Steering Committee (CCSC). This 13 member group was tasked with developing the National Cancer Control Strategy, and creating an action plan to provide cancer treatment free for all citizens. Free cancer treatment at the ORCI was then covered by national policy to be offered to all patients including children. In reality this meant free radiotherapy for all and free chemotherapy when it was available. Chemotherapy was reliably available for one condition – BL – thanks again to the INCTR led study. For other conditions regular stock outs were common.
In 2008, Children in Crossfire (CiC), a Charity from Northern Ireland, registered in Tanzania committed their support to the development of Paediatric Oncology provision. This decision was transformative. CiC provided all chemotherapy and other hi-tech medications required, diagnostic consumables, and improved staffing numbers by funding nursing overtime.Combined with the government’s initiative to provide free access to ward based care and treatment, this partnership immediately started to have an impact on the children’s survival across a range of conditions.
With the support of CiC, in November 2011, Tumaini La Maisha (TLM), hope for life – the first NGO in the We Are TLM network, was launched in Dar es Salaam.
TLM is dedicated to caring for children with cancer and their families and provides both clinical and nonclinical supportive services.
The late Mr Ali Hassan Mwinyi (Former President of Tanzania) kindly agreed to be our patron.
In April 2012, the Children’s Cancer Ward moved from the ORCI to the Children’s Department at MNH. This was made possible by an agreement between ORCI and MNH facilitated by MoHCDGEC. Space for new wards was made available by MNH and refurbished thanks to a donation from The Love Hope Strength Foundation. Instantly, the children’s care improved. As part of Tanzania’s largest University Hospital, access was now available to services previously lacking such as expert paediatric sub-specialist colleagues, CT/MRI scans, surgical and emergency services and a 24 hour laboratory.
Before February 2013, most children and their guardians lived on the ward for many months at a time. Not only was traveling vast distances home between cycles of treatment impossible, it was often dangerous. In the same year, we were delighted to finally offer a home away from home and a safe and nurturing environment for children discharged from the ward to Ujasiri House, our family-style hostel. Comprising of 22 bed spaces, a kitchen, living room, classrooms, office space and skills room as well as an outdoor playground and a garden. The land was provided by MNH and the build was financed by generous private donors and the Abbott Fund. The hostel and all its’ facilities are managed by TLM.
In August 2013, thanks to successful fundraising through the Rotary Dar Marathon for the two previous years, a new custom designed Paediatric Oncology facility was opened at MNH by Dr (Dame) Jane Goodall DBE. The combined Upendo & Tumaini Children’s Cancer Ward, with a capacity of more than 65 beds, is the only specialized Paediatric
Oncology facility in Tanzania, providing cancer care and treatment free of charge. The majority of children admitted are from poor families and have travelled long distances from all over this vast country.
During the planning and construction, TLM provided regular technical assistance to the design team and formed part of the Project Management team. TLM currently helps MNH maintain the wards to a standard befitting a Children’s Cancer ward.
As the clinical services and facilities advance, improving expertise became a priority. TLM partnered with Muhimbili University of Health and Allied Sciences (MUHAS) to create and maintain a locally based MSc programme in Paediatric Haematology/Oncology based onsite, and shorter courses to Tanzanian sub-specialty doctors. Local and international teams of experts visit Upendo & Tumaini Children’s Cancer Ward allowing almost all training to stay in Dar es Salaam, thus contributing to the care of all the children both present and future as they guide the students through the programme.
The initial MSc was launched in October 2013 and was financed by generous donations from Resolute Mining and the Karimjee Foundation. The next important milestone for children’s cancer in Tanzania and TLM was hosting the international society for Paediatric Oncology’s Africa meeting in 2014 (SIOP Africa). The conference was entirely managed by a group of local volunteers coordinated by TLM. A great success, the meeting was attended by delegates from all over the continent of Africa and, indeed, the world. This firmly placed both Upendo & Tumaini Children’s Cancer Ward and TLM on the map for Paediatric Oncology services in Africa.
From the very beginning of these efforts, professionals from across Ireland and elsewhere began offering their expertise free of charge to assist in a variety of ways. In particular the positive impact of the efforts of the staff of Children’s Health Ireland (CHI) (formerly Our Lady’s Children’s Hospital in Crumlin), cannot be overemphasised. In 2015 a Memorandum of Understanding (MoU) between MNH and CHI was successfully agreed upon, formalising this very close relationship which had developed over the previous eight years. This was facilitated by the Esther alliance, a European group working to promote quality health services in lower resourced environments.
CHI have been providing crucial clinical and technical support to Upendo & Tumaini Children’s Cancer Ward in Dar es Salaam. This has included regular expert site visits, weekly assistance for over 10 years processing histopathology specimens, interpreting radiology investigations and donation of decommissioned equipment. This is only a sample of the support given.
To assist TLM in achieving our ambitious mission, two new sister charity entities were created, one in Ireland and one in the UK, both registered in 2015. Although governed by separate laws and guided by separate management boards, these two NGOs were designed with the aim of supporting all activities conducted by TLM in Tanzania. It was felt that a recognisable English name should be chosen with the same acronym (TLM), ‘Their lives Matter’ was the obvious choice. These three organisations work together to provide children’s cancer care in Tanzania and make up the group; ‘We Are TLM’.
In 2016 TLM established a National Expansion Plan of Paediatric Oncology care (centrally coordinated) to other regions of the country. It is crucial that a sick child be within no more than a one day distance of an appropriate treatment site so as to provide the best possible chance of survival. Late presentation, misdiagnosis and inability to pay for travel are all factors that impact the chance of a sick child becoming well again. In the period 2016 to 2018, seven collaborations have been formalised with centres across Tanzania who now enjoy free access to chemotherapy, diagnostic pathology services, transport and procurement. At the end of 2019, we had grown that number to 11! Weekly expert conference calls where every active case is discussed are also provided by We Are TLM experts. We aim to expand to more than 30 sites in the coming years.
In 2019, We Are TLM proudly built and handed over to MNH, the first Paediatric Intensive Care Unit (PICU) ever established in Tanzania. This service is open to all critically ill children attending the hospital. (We Are TLM also supported the development of a Neonatal Intensive Care Unit {NICU} facility at MNH). The development of these units were financed by the Big Heart Foundation and FoCP group in Sharjah.
The first intensive Paediatric Oncology Clinical training course for nurses was launched the same year which has transformed the care the children receive on the ward. We also began to use our automated chemotherapy prescribing tools which were developed in-house and have reduced prescription errors by over 90%.
2020 and the Covid – 19 pandemic arriving on the wards and in the world meant that many children presented to the hospital later than usual, the importation of drugs became more costly and difficult and the expectations and pressure on staff increased overnight. As we continue to navigate the complexities of providing childhood cancer treatment for vulnerable children in the midst of a global pandemic, we thank our staff, volunteers and the children for their bravery, resilience and teamwork – You Are TLM!
In October 2021 Tumaini La Maisha Tanzania began the second intake of pediatric oncology fellowship at Muhimbili National Hospital and has included 2 more sites to our network.
We are very proud to report that throughout all these years all TLM services both clinical and non-clinical are given completely free of charge to every child and every guardian.
Their Lives Matter!