INCTR: Newsletter

Partner Profile

Children Cancer Hospital, Karachi
A Project of Children Cancer Foundation, Pakistan

Children Cancer Hospital, Karachi.

Pakistan is a developing country with a population of about 140 million people — of whom 45% are under 15 years of age. Malnutrition and communicable diseases are still the major killers of children. The country has a very limited health budget — only 0.7% of the gross national product is allocated to health. The major focus of the government is on maternal and child health and infectious diseases. The level of health care is drastically different for the rich and poor. The 30-40% of people living below the poverty line have access only to government hospitals, where the facilities are far from satisfactory. Private sector hospitals have much better facilities, but are expensive and cater to patients from the upper socioeconomic class.

There is no national tumor registry. Most of the available information on childhood cancer comes from hospital-based data or data from IARC or other agencies which have small population-based registries in selected cities. Childhood cancers are more often diagnosed now due to better diagnostic facilities and the availability of treatment centers. With the decline in childhood mortality from infectious diseases, cancer is becoming a significant cause of death in children. The common childhood cancers in Pakistan are leukemia, lymphoma, soft tissue sarcoma, retinoblastoma, Wilms tumor and neuroblastoma. Only 3-4% of patients seen at our center have brain tumors.

The facilities for childhood cancer treatment in Pakistan are very few. There are eight to ten centers and only five fully trained pediatric oncologists in the entire country. Only a few hospitals in the government sector have a facility for the treatment of some children with cancer, but most do not provide free cancer treatment to children due to lack of funding. Therefore, almost all patients in government hospitals and 80% of those in private hospitals need financial support. Fortunately there are many charitable organizations supporting health care in Pakistan; philanthropists and non-governmental organizations support most government and private sector oncology services. One of these is Children Cancer Foundation, a registered charitable organization established in December 1999 by a group of medical professionals, social workers and parents of children suffering with cancer.

The CCF Mission

The majority of children referred with cancer to CCF need partial or full support for treatment. Initially, such support was provided by relatives and friends, but soon, the parents of children suffering with cancer and philanthropists joined hands with us to establish the Children Cancer Foundation. The Foundation’s goals are to:

Provide financial support for the diagnosis and treatment of children with cancer
Create awareness about childhood cancer and its potentially excellent outcome
Promote research and training within the specialty of pediatric oncology
Establish a Children’s Cancer Hospital in Karachi where treatment could be offered to every child regardless of the ability to pay.

Resources at CCH
Total Inpatient Beds	14
Total Daycare Beds	8
Pediatric Oncologist	1
Pediatrician	3
Resident doctors	5
Oncology Nurses and technicians	11
Nutritionist	1
Social worker	1
Pathologist	1
Laboratory - Routine services
Hematology
Microbiology
Biochemistry
Radiology - Routine services
Plain X-rays
Pharmacy
* For Blood Bank, flow cytometry and CT/MRI and other expensive tests, we contract with other hospitals.
* A radiotherapy facility is available at a nearby hospital.
PATIENTS IN 2004-05
Total OPD visits	6,554
Total Daycare visits	4,016
Average daily inpatient occupancy	11
Total new referrals	277
Total new cancer	218

Our Evolution

We started our project with very limited resources but with a clear vision. We planned the journey in small phases and so far our progress has been very encouraging. We count among our major milestones:

February 2000: The first office for Children Cancer Foundation was rented. An accountant and an office secretary were hired to run the cancer drug bank and maintain CCF accounts.
June 2000: The office was moved to a private “polyclinic.”
August 2001: Children Cancer Hospital Phase 1 started functioning. The facilities included an outpatient clinic, daycare chemotherapy and pharmacy, and a procedure room for bone marrow examination and intra-thecal chemotherapy.
March 2002: Inpatient admissions began with a seven-bed facility. By 2003 the growing number of referrals necessitated our own laboratory and x-ray facilities. With no room for expansion, we planned to move again. Although our funding was limited, we were able to rent a floor in a hospital.
May 2003: Children Cancer Hospital Phase 2 became operational in our new premises. Our additional facilities included inpatient beds and more daycare beds, an isolation ward with four rooms, a medical record department, a laboratory and diagnostic X-ray facilities.

In the course of 2004, further additions were made, including an information technology department and hospital information system, a seminar room and a microbiology laboratory, an intensive care unit, an infection control team and a playroom.

The average monthly outpatient and daycare admissions are 550 and 230, respectively. We have on average eleven patients admitted in the ward. At present, we are treating more than 150 new patients a year. More than 50% are treated free of charge, 30% pay partially, while only 20% pay the full cost of treatment. We recuperate only 20% of our monthly expenses from patients, while we generate the rest from donations and zakat (a wealth tax paid by affluent Muslims). This support comes mainly from the community and other charitable organizations.

Leukemia	31%
Lymphoma	20%
Sarcoma	8%
Bone Tumor	8%
Brain Tumor	7%
Retinoblastoma	6%
Wilms Tumor	5%
Germ Cell Tumor	4%
Neuroblastoma	4%
Others	7%

Table 1: Common Childhood Cancers (figures derived from 764 patients seen at Children Cancer Center between March 1997 and March 2005)

The number of cancer referrals has increased from 55 in 2000 to 218 in 2005. We have maintained our institutional tumor registry since our founding. The major childhood cancers treated at our center are leukemias (31%) and lymphomas (20%) (Table 1).

About 20% of children are given palliative chemotherapy or supportive care because of advanced or unfavorable disease (e.g., stage IV neuroblastoma and sarcomas). Approximately 10% of patients are lost to follow-up.

One of the main reasons for a poor outcome of cancer treatment in Pakistan is lack of awareness — not only among the general public, but also among medical professionals. Children Cancer Foundation and Children Cancer Hospital have, therefore, created awareness about childhood cancer and its possible excellent outcome through lectures, articles and interviews in newspapers and magazines. We have published educational leaflets for parents on various topics related to childhood cancer. The unit is actively involved in clinical research, and we have presented our data regularly in national and international meetings. There are regular awareness seminars and clinical meetings in liaison with other hospitals and associations such as the Pakistan Pediatric Association. The journey that started with a single room has now taken shape as a well-established Children’s Cancer Unit with nearly all its facilities under one roof. Still, we have a long way to go to make this unit a center of excellence not only for treatment but also for cancer research, including the development of a program of relevant clinical trials in Pakistan.

Physicians obtaining a sample of bone marrow from a patient.

The Future Vision

Our goals are to: • Establish a 50-bedded unit within a new children’s hospital with all necessary facilities for childhood cancer treatment and research, including palliative care services • Undertake national and international clinical trials • Provide training for doctors and nurses in pediatric cancer • Establish a childhood cancer registry • Develop shared care with similar facilities, to improve access and follow-up.

INCTR and CCF

The organization of the first Inter-national Pediatric Oncology Con-fer-ence in Pakistan in July 2005, in collaboration with INCTR, has been a wonderful experience for us. Although the formation of the Pakistan Society of Pediatric Oncology is one of the remarkable events of this meeting, the stronger and better relationship with INCTR is the far more important achievement. This partnership will go a long way in helping us to collaborate with INCTR in future projects. Through INCTR we are making new friends and benefiting from the learning experience of medical professionals at other centers.

M. Shamvil Ashraf, Children Cancer Hospital, Karachi, Pakistan

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