MAHAK: An Iranian Charity Organization for Children suffering from Cancer

The MAHAK Rehabilitation and Cancer Center

In affluent countries, childhood malig.nancies are, after traffic accidents, the leading cause of mortality in children older than five years, and approximately 120 per million children aged 0-15 years will suffer from cancer. Due to improving socio-economic conditions and public health services in Iran over the past decade, there are strong indications that a change in the pattern of the incidence of various diseases in children is occurring, but Iran’s population of 66 million includes a higher fraction of children - 34% are younger than 15 years – such that childhood diseases, including cancer, are a relatively more important health problem than in the West.

The most common pediatric cancers in Iran are acute lymphoblastic leukemia, brain tumors, non-Hodgkin’s lymphoma, Hodgkin’s disease, retinoblas.toma, Wilms’ tumor and neuroblastoma. Doctors in Iran are implementing modern western protocols, which are giving promising results. Approximately 70% of children with cancer treated in western countries are alive five years after treatment. The key point to be made is that cancer in children is curable.

The majority of children with cancer in Iran are referred either to pediatric oncologists or pediatric oncology departments. However, the long timelapse between disease manifestation and referral to specialists remains a matter of concern. Treatment expenses for children suffering from cancer are, to a considerable extent, covered by government insurance services. Expenses for bone marrow transplants are covered by special government funds. In major cities, local charity groups and organizations are keen to provide financial support and assistance to families in need.

One such charity is the MAHAK Rehabilitation and Cancer Center, established in 1991 as a non-governmental organization in Tehran. Several socially motivated Iranians, including the parents of a girl with nephroblastoma, were instrumental in establishing the charity organization. Its mission is to alleviate the pain and suffering of children with cancer, to provide financial and psychological support to afflicted families, to build child-friendly wards, to provide accommodation for patients and their parents, and to inform and educate the public about childhood cancer and its curability. Dr. Mardawig Alebouyeh, a hematologist/oncologist, now also in private practice at Mehr Hospital, was one of the founders. Striving to improve the quality of pediatric care available, he helped develop a model approach that concentrates all services in one place. MAHAK addresses the needs of the whole patient and involves the entire family. If a patient dies, MAHAK even pays for the child’s burial.

“One of the problems our patients family’s used to face was the financial burden of the disease,” says Dr. Alebouyeh. “Now, they come to us and ask us for help, which we are able to provide. Similarly, the seven oncology departments in Tehran are short of resources and have problems meeting the needs of patients. MAHAK is also able to provide them with financial support with respect to diagnostic procedures and treatment.”

The organization now has more than 20,000 members, including Iranians living abroad. It has funded the construction of a spacious recreation and rehabilitation center with adjacent diagnostic and therapeutic facilities. MAHAK employs 35 professionals who, since its inception, have provided essential medical and financial support to more than 7,000 children suffering from cancer. Teams of volunteer social workers visit seven pediatric oncology wards throughout Tehran six days a week, registering and counseling patients for referral to appropriate centers and services. The MAHAK complex itself offers three components of medical care: rehabilitation for children during treatment, ambulatory clinic and inpatient departments, and diagnostic imaging facilities. In addition, the center offers social and educational facilities, family accommodation, and medical and psychological counseling.

“Not only do we want to give patients the opportunity to survive cancer, to relieve their pain and suffering and to be treated in comfortable and hygienic surroundings,” says Dr. Alebouyeh. “We also offer them and their families psychological support in order to help them deal with their cancer.”

The challenge for us is to build a good staff of physicians and a qualified nursing staff,” says Dr. Alebouyeh. MAHAK endeavors to send physicians abroad for specialized training. The center is working to establish training partnerships with St. Jude Children’s Research Hospital in the U.S., and with Shaukat Khanum Memorial Cancer Hospital in Pakistan. Still, he gets a great deal of satisfaction knowing his facility is perceived as a worthy philanthropic institution where the newest modalities for cancer treatment can be made available to the pediatric oncology departments in Tehran.

In the absence of an efficient national cancer registry, MAHAK has established a preliminary database for childhood malignancies. Colleagues in other major cities have been encouraged to establish similar systems, with assurances that MAHAK will give them help and assistance in their endeavors to combat childhood cancer.

MAHAK provides a child-friendly environment.

Pediatric Services in Iran

The pediatric hematology and oncology (PHO) services in Iran have improved steadily over the past decade. Specialized PHO services are available in nearly all major cities throughout the country, where 43 board-certified or eligible pediatric hematologist-oncologists are giving care to children suffering from cancer or hematological disorders. There is an approved fellowship program for PHO at three university children’s hospitals. At the same time, there exists a good training program for pediatric surgery. Today, 74 board-certified pediatric surgeons are providing surgical care to pediatric patients. There is, however, a need for special training programs for teaching nursing staff the principles of caring for children with malignancies. Preliminary actions to establish such a program for interested nurses are now underway.

Treatment and Outcome

Childhood malignancies are treated according to the conventional multi-modality protocols which are mostly adopted from accredited medical institutions in the USA or Europe. There is no shortage of anti-cancer drugs, antibiotics, hematopoietic growth factors, blood products, and even monoclonal antibodies. However, specialized laboratories capable of performing more sophisticated diagnostic procedures, e.g. immunohistochemistry, cytogenetics, viral and molecular studies, are limited in number, and offer their services mainly in Tehran.

Radiotherapy facilities are conven.tional and available only in a few major cities. Currently, five linear accelerators are in operation in the country - three in Tehran, one in Isfahan, and one in Hamadan. They all have long waiting lists, which limit the expected benefits in some malignancies, such as Wilms’ tumor.

There are encouraging reports from single institutions which treat and follow-up results of childhood malignancies, e.g., acute lymphoblastic leukemia, Hodgkin’s disease, Wilms’ tumor and retinoblastoma. But, in the absence of an effective national cancer registry and cooperative pediatric study groups, comparative demographic, epidemiologic, treatment, and follow-up data are not available. However, according to IARC childhood cancer statistics, 2,682 children contracted cancer in Iran in 2000, and the death toll from cancer in the pediatric age group was 1,703. Considering these alarming data, the Iranian Society of Pediatric Hematology and Oncology is poised to tackle the problem by helping medical and health authorities and support groups to focus on shortcomings and improve the allocation of resources.