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Background and Situation Analysis of Childhood Cancer in Tanzania

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

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 MoHSW, has developed a National Cancer Control Strategy (NCCS) that aims to implement a comprehensive and responsive cancer control program integrated into the existing health care delivery system.

With an estimated population of 45 million people, 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.

 

Background and Situation Analysis of Childhood Hydrocephalus and Spina Bifida in Tanzania

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. 

The neurosurgery department of MOI since its inception is catering for all neurosurgical services in Tanzania. It is the only stablished specialized center in Tanzania and acts as the tertiary referral center for the entire population of 45 million.

Due to its location, the neurosurgical services have been inaccessible to some Tanzanians including children with disabilities such as hydrocephalus and spina bifida. To offset this obstacle CCBRT between 1992 and 1998 embarked in collecting and ferry patients from upcountry to Dar es salaam for treatment. This project proved very expensive and nonsustainable thus failed.

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, (table 1). 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.

 

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 13549, Dar es Salaam. The main objectives of FoCC Tanzania is to create awareness and help children affected by NCDs before diagnosis, during and after treatment by supporting their daily needs of educational, emotional and recreational in the hospital and at home.

 

Legalities & Governance – FoCC is a non-profit organization under. It’s governed by a Constitution passed during the Annual General Meeting. The Executive Committee is responsible for all day to day operations of the organization under the Executive Secretary. Members of the Executive Committee are elected during the AGM and serve for 3 consecutive years.

VisionHelping children with NCDs be children

MissionTo raise awareness and become advocate for the children with NCDs by providing them with the information, educational, emotional and recreational support needed in the hospital and at home.

 

The main challenge of Childhood Cancer

A fact about Childhood cancer is that, there is severe lack of awareness and young lives are being lost due to late diagnosis while most cancers are curable with early detection. Because of this children spend months in local hospitals or traditional healer where they try all sort of treatment before referring the child to the regional hospitals for further diagnosis.

When the child finally makes it to the oncology ward, it’s too late and treatment 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. Majority come to the hospital not knowing that they will stay for that long and they don’t even know the cost of treatment and its complexity. This reality shocks most families especially parents and sick children.

The main Challenges of Childhood Hydrocephalus

Despite MOI embarking in full-term care of hydrocephalus children, still there are challenges that MOI need to overcome before establishing a full-fledged comprehensive care of hydrocephalus and spina bifida program.

Funding

Financial suport is needed to cover for the social welfare of children and their families. They need all range of suport from transport fare back home, food while in hospital, free medicines and investigations (lab, xray, ultrasound and CT scans).

Supplies

The fulfledged program requires constant supply of VP shunt kits, solvents and detergents for cleaning the scopes etc.

Our Intervention

To address the above Friends of Children with Cancer Tanzania have established different chapters around Tanzania as supporting network for awareness creation, speeding the process of referrals and supporting the daily needs of children with cancer in hospitals and homes.

Our Chapters

The role of each chapter is to educate public of Early Warning Signs, work with local hospitals to speed the process of referrals and provide these special children and their families with information, education, emotional and recreational support needed throughout illness.

Dar es Salaam ChapterIt was established in August 2013 by a group of passionate friends who saw the needs of children with cancer and acted upon it.

Mwanza ChapterIt was established in October 2013 by a group of friends, working directly with Bugando Medical Centre in its Oncology ward to provide a daily school for children undergoing treatment and other support services for families.

Mbeya ChapterEstablished in December 2013 by a group of friends involved in Coffee industry to fundraise and create awareness of childhood cancer especially in Mbeya Districts involved in mining production.

Morogoro Chapter – Established in February 2014 by a group of friend working with Sokoine University, SICID and others to support the children with cancer in Morogoro Region.

Kilimanjaro & Arusha Chapter – To be opened in May 2014

Karage Chapter Opened in April 2015

 

Our Objectives

  • To raise awareness of the signs and symptoms of childhood hydrocephalus and cancers to the clinicians, traditional healers, parents, teenagers, children and general public.
  • To raise awareness of the importance of pregnant women to take folic acid
  • To work with local health canters to speed up referral procedures of children to reach to the Paediatric Oncology and Paediatric Orthopaedic wards early
  • To support children with special investigation/tests/drugs undergoing treatment
  • To support the educational, recreational and emotional needs of children and their families in hospitals and at home
  • To follow up on all the children during and after treatment
  • To fundraise for the needs of sick children in Tanzania
  • To mobilize donation for the children needs

 

Our Programmes 

  • Early Warning Signs Campaigns in Schools, clinics & villages
  • Daily School for children in Paediatric Unit of Hospitals
  • Home based programmes for Palliated children
  • Transport Programme for follow ups of children and referrals
  • Income Generating Activities for parents of children
  • Sponsor a child’s treatment campaign to cover treatment costs
  • Annual Mt Kilimanjaro Charity Climb
  • Monthly Occupied Leisure meetings

 

Membership

Membership is open to all individuals and organizations, at annual membership fees of Tsh 50,000 for individuals and Tsh 500,000 for organizations.

                      

Benefit for members

  • The opportunity to receive training on Childhood NCDs
  • The opportunity to raise awareness of Early Warning Signs
  • The opportunity to volunteer to work with health care workers to speed up referral procedures
  • The opportunity to mobilize donations for these children
  • The opportunity to support families affected by childhood NCDs
  • The opportunity to fundraise for the needs of children
  • The opportunity to volunteer to the Paediatric wards
  • The opportunity to network with other people with the similar interest with children
  • The opportunity to attend our Monthly occupied leisure where you can meet new friends in the network
  • The opportunity to receive by email our newsletter, reports and other updates

 

FoCC Source of Funding

  • Fees and donations from Members (organizations & Individuals)
  • Fundraising Events
  • Annual Kilimanjaro Charity Climb
  • Grants from companies
  • Grants from goodwill individuals
  • Project Proposals

 

Financial Accountability

FoCC operates within the Strategic Operational Plan and Annual Operational Budget passed during the AGM. We maintain a main bank account with dual signatories for all sources of funding and later distribute to the chapters. Periodic reports ot members, donors and supporters.

 

You can donate to us today on

  • By MPESA   0762 520642
  • Bank Account KCB BANK TANZANIA
  • Account Number 3300989515 Tshs
  • Account Number 3300989523 Usd
  • Branch Samora

 

Join Us today

  • CALL +255 762 520 642
  • To save lives & give hope to the families affected by NCDs in Tanzania