Profile

Organization Overview

Friends of Children with Cancer Tanzania, is a registered society under the Societies Act (Cap. 337 R.E. 2002) with registration number S.A.19229, having its registered postal address as PO Box 84 Dar. Head quarters in Dar es Salaam, Posta House Building, Ghana/Ohio Street, 3rd floor, room 315.

 

It started its operations in 2013 working with the main referral hospitals in Tanzania in the field of Childhood Cancer. In 2014 FoCC increased its scope of intervention and included Neuro Tube Defect of Childhood Hydrocephalus and Spina Bifida.

 

In 2017 FoCC Tanzania went internationally as a result of developed partnerships with different organizations around Africa to address various challenges by sharing of knowledge and exchanging experiences through best practices and successful interventions in an African context.

 

Vision

Our vision is to see a generation where child’s health is a priority and free treatment of all childhood non communicable diseases and Neuro Tube Defects.

 

Mission

Our mission is to raise awareness, access and advocacy of Children with non communicable diseases and Neuro Tube Defects for quality treatment, care and support in Africa.

 

Objectives

The main objectives of Friends of Children with Cancer and SBH Tanzania are to raise awareness, access and advocacy for quality treatment, care and support for children affected by NCDs and Neuro Tube Defects before diagnosis, during and after treatment in Africa.

 

Legalities & Governance

FoCC is a membership, non-profit organization governed by a Constitution passed during the Annual General Meeting. The Executive Committee is responsible for all day to day operations of the organization, working with the Board of Directors in major decision making process. Membership is open to all individuals and organizations, at annual membership fees of Tsh 60,000 for individuals and Tsh 500,000 for organizations

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FoCC Source of Funding

  • Fees and donations from friends and Members (organizations & Individuals)
  • Grants from organizations and goodwill individuals
  • Project Proposals

 

Financial Accountability

We maintain a main bank account with dual signatories for all funding and periodic reports are provided.

 

Analysis of Childhood Cancer

Background and Situation

Non-communicable diseases (NCDs) such as cancer currently cause 63 per cent of all disease related deaths worldwide and the World Health Organization (WHO) estimates that deaths from NCDs will increase by a further 17 per cent in the next decade. In Africa, that number will jump by 24 per cent. “Non-communicable diseases are a threat to development.”

 

United Nations Secretary General Ban Ki Moon told the opening session of a landmark General Assembly meeting on NCDs in September 2011, “NCDs hit the poor and vulnerable particularly hard… with millions of families pushed into poverty each year when a member becomes too weak to work or when the costs of medicines and treatment overwhelm the family budget.”

 

Status of Childhood Cancer in Tanzania

Cancer in Tanzania is currently a public health concern to such an extent that concerted efforts both from the government and other stakeholders including individual efforts have been called upon, so as to build synergies in the efforts to combat cancer in the country. Currently the number of cancer cases has surpassed the number of HIV/AIDS, tuberculosis and malaria patients put together. Recent national statistics (Globo can database) show, that at least 40,000 people develop cancer each year and 27,000 die of cancer annually.

 

Tanzania is the only country in Sub Saharan Africa that has pledged to make cancer care and treatment free for all patients. The Government, through the MHCDGEC, has developed a National Cancer Control Strategy (NCCS)[1] that aims to implement a comprehensive and responsive cancer control program integrated into the existing health care delivery system.

 

Statistics

With an estimated population of 49.25 million people (2013), Tanzania would expect to see as many as 2,300 new cases of childhood cancer each year. Sadly, many children go to Hospital too late for treatment to be effective. Muhimbili National Hospital received new cases around 400, Bugando Medical Centre around 200 and Mbeya Referral around 50 cases annually (2012) A number of different factors work together to delay their presentation at the cancer wards.

 

Analysis of Childhood Hydrocephalus and Spina Bifida

Background and Situation

The term hydrocephalus is derived from the Greek words “hydro” meaning water and “cephalus” meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as “water on the brain,” the “water” is actually cerebrospinal fluid (CSF)–a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.

Statistics

MOI has been receiving about 200 new hydrocephalus and spina bifida cases annually. Most of the cases come from Dar es Salaam and neighboring region.  However the follow up clinics done at MOI records a very small number of these children, about 30%, posing a question of whereabouts and outcome after surgery. Is the treatment given at MOI successful or not?

 

The status of hydrocephalus in Tanzania

There is no established population study to estimate the magnitude of childhood hydrocephalus in Tanzania. However the hospital based study done at Muhimbili National Hospital revealed about 3 per 1000 live births are hydrocephalus/spina bifida victims. This rate is higher compared to established world prevalence of 2 per 1000 livebirth. Going by this prevalence rate it is estimated that 4,840 new born babies are born with this problem in Tanzania every year.

 

The main treatment option for hydrocephalus is either VP shunt or etv; while the former is very commonly adopted in Tanzania it also carries higher rates of complication and mortality. MOI is currently performing etv to most hydrocephalus children thus escaping many complications of VP shunt.

 

Due to the scarcity of cheaper VP shunts and surgery skills and expertise, only four hospitals in Tanzania perform this surgery. These are MOI, Bugando, Seliani, Hydom and KCMC. Of these only MOI perform the surgery regularly. The other three rely on foreign visiting experts to perform the surgery.

 

The main challenge of Childhood NCDs and Neuro Tube Defects

  • Lack of Awareness, Education, Information and research
  • Severe Poverty – extended siblings, under $1
  • Bureaucratic referral system – 6 levels of referral
  • Distance to the hospital – big country in landscape (lodging)
  • Mindset/ignorance (stigma of witchcrafts)
  • Few specialized treatment centers to cover the population
  • Cost of treatment –medicine, investigations, administration, diet
  • Prolonged Length of treatment
  • Lack of Rehabilitation services-e.g speech therapy, physiotherapy
  • Lost to Follow up
  • Limited medical staff per patient seen
  • Lack of proper registries-National Data collection

 

Our Intervention

To address the above Friends of Children with Cancer Tanzania has established different programmes to achieve its vision, mission and objective.

 

Medical Surgical Camps

We work with medical teams and families of children with hydrocephalus and spina bifida to provide free surgical treatment to the children in need. We conduct outreach surgical camps around Tanzania by taking team of specialists in remote places where the service is not available to reduce the travel distance for patients. Also such outreach camps serves as training ground for general surgeons to learning to perform shunts. Thereafter with few resources and capacity building we enable the new centre to provide such services. We work with partner hospitals and sponsors to support this programme.

 

Medical Volunteer Programme

We work with United Planet Tanzania and other international organizations that provide long-term skilled volunteers to our partner hospitals and centre around Tanzania and Africa. These volunteers bring new skills, experience and expertise in the medical field through sharing with our local teams.

 

Children’s hospital Volunteer’s Play Programme

Treatment of Cancer requires a long stay in the hospital. It takes between 2 weeks to a year stay in the hospital. This is a very long time for a child to be away from parents, siblings, relatives, friends and school. We have established hospital schools in our partner hospitals to give the children an opportunity to be children. We support the educational, recreational and emotional needs of children and their families in hospitals. We work with Ministry of Education department of Adult Education who provides volunteer teachers in the hospital.

 

Palliative Care Programme

Due to lack of awareness majority of children arrive in the treatment center when the disease has advanced. We support families during this challenging moment by visit the child at home and support in bereavement. We work with different organizations like Mohamed Punjani Foundation to support with medical Aids for terminal and permanent disability.

 

Screening and Awareness Raising Campaign

We conduct medical screening campaigns and raising awareness of the signs and symptoms of childhood hydrocephalus and cancers to the clinicians, traditional healers, parents, teenagers, children and general public. We conduct screening and awareness raising campaign for both public and health care providers. We provide information and education to families affected. We use all types of media to reach out to people. We also organize various screenings events during a year. We have partnership with various organizations, Medical Associations, students, volunteers, media such as Print, digital and electronic media who support our campaigns.

 

Family support programme/Medical Insurance

Due to poverty most families can’t afford to pay for various needs including transportation, hospital administration cost, drugs and diagnosis during treatment like X-Rays, CT-Scans, MRI, Blood, shunts and proper diet to support medication. Also we work with local health centres to speed up referral procedures of children to reach to the Paediatric Oncology and Paediatric Orthopaedic wards early. We follow up on all the children during and after treatment and establishing a database for future research activities. We have partnerships with diagnostic centers, pharmacy, transport companies and individuals who support our needs. We have now embarked on the medical insurance support for families to cub the above challenge.

 

Fundraising Campaigns and Resources Mobilization

We have partnerships with different individuals and organization that fundraise and mobilize donations for the needs of sick children. Our volunteers has played a crucial role in fundraising.

 

Mwanangu Special Inclusive Pre-school and Rehabilitation

As part of our ongoing initiatives to support the needs of vulnerable children in Tanzania, in April 2017, we started a special inclusive Pre-school and Rehabilitation Centre for disable children. We currently have 30 children with Hydrocephalus, Spina Bifida and Cerebral Pulse. Parents and children attend the school on daily basis, five times a week. We have four semisters in a year which gives our children 40 weeks a year attendance in the program. The age range from one year old to 9 years old. We offer education, care, rehabilitation, meals, transportation and medical check up. Located in Vikindu- Mkuranga District, Coastal Region.

 

Income Generation Activities

IGA is an important component of the women empowerment program that FOCC & SBH Tanzania initiated, especially mothers of children with disability. They have a full time responsibility to support the child and still expected to take care of their families. Our Income Generation Activities for the mothers of disabled chldren, has various sub projects-Tailoring skills, catering skills, food vendor, farming, to enable them to sustain their lives and poverty reduction.

 

Mwanangu House of Hope

In February 2018, Friends of Children with Cancer and SBH Tanzania established a recovery home in Mwanza. The house has 4 self contained rooms which serves as hostel for families who are awaiting surgeries, follow up clinics, rehabilitation services etc. Many caregivers were faced with a challenge of accommodation during treatment or follow up clinic for their children. The house since its establishment in February 2018, has housed more than 100 children and their caregivers.