Introduction

Survival rates for women with breast cancer are extremely low in Egypt, as a result of late detection associated with the cultural taboo and misconceptions surrounding the disease. Even if the disease is detected, women are operated upon without being given any information, choices, or proper-post-operative counseling and care as the medical profession is not held accountable for wrong operations. Mohamed introduced the first comprehensive breast cancer service in Egypt. His CSO, The Breast Cancer Foundation of Egypt works on research, awareness, medical care, psychosocial rehabilitation, and integration for breast cancer patients as well as an advocacy campaign to spread awareness about breast cancer and the possibility of curing the disease if it is detected at an early enough stage. Shaalan wants to empower the patients of breast cancer through providing them with knowledge about their rights, information with regards to breast cancer, and creating a regulatory body which will monitor and holds doctors accountable and them protect breast cancer patients.

Mohamed’s idea is to change the culture of the Egyptian community (men and women) about breast cancer and to get rid of all sorts of barriers impeding breast cancer detection, education, and care. His aim is to create and institutionalize an alternative culture, which empowers women with knowledge and empowers patients with confidence and self-respect. He wants to get rid of the myths, misconceptions, taboo, and stigma surrounding breast cancer, commonly known in Egypt as the “bad disease.” Breast cancer does not only affect women, but affects their whole family, and thus the community. His aim is to promote public and professional education and awareness, treatment resources, research, and patient support related to breast cancer in Egypt through the CSO he founded. His idea is to empower the patients and consequently make the doctors more accountable. He believes that no government in the world can provide comprehensive health-care for all breast cancer patients; therefore, there is a need for community involvement and support.

Mohamed is a master organizer, bringing citizenship to patients (women and men) who have breast cancer—that have faced systematic discrimination resulting from ignorance on the part of society, doctors, nurses, and the government. Mohammed is also beginning to create institutions to document the problem, provide information and counsel to women, as well as subsidized screenings and post-operative care. Through the CSO, he also works on creating an advocacy committee whose members are patient, doctors, celebrities, and decision makers who would lobby for the following: first, women’s rights for knowledge and accurate check ups to empower the patients, second, creation of a governmental body to secure quality control medical care. This body would be responsible of accreditation of breast health related services and facilities, monitoring doctors’ diagnosis and operations, reporting on any professional misconduct/malpractice to the national Doctors’ Syndicate. Third, his comprehensive medical care for breast cancer be covered by medical insurance and also adopted by MOHP as it institutionalized offered service.

Shaalan is addressing two problems. First is the lack of knowledge, information and spread of a culture of denial with regards to breast cancer. Secondly, he is addressing a sad state of the medical profession where doctors are not held accountable for any wrong cure or unnecessary operation especially on women with breast cancer. Breast cancer is the most common cancer for women in Egypt. However, there are no nationwide statistics for the incidence of the disease. 33% of known and identified cancer in women at the national cancer institute in Egypt is the result of breast cancer. But the real percent is not known and could be much higher. There is no cancer registry and as a result no accurate statistics about the prevalence of the disease. We do know however, that it is a major health problem that affects all classes and ages.

Egypt also has a very poor survival rate. Only 30% of women survive after 5 years with the disease. Incidents of breast cancer are higher in the West but the cure rates are also much higher and the main reason is the culture and knowledge of not only the patients (women), but also of the doctors, health system, community and the media. Among Egyptian society, there exists a culture of denial and negligence that leads to late detection of the disease, which ultimately results in very slow rates of cure. Awareness and support for breast cancer in Egypt is tragic to say the least. Egyptian society considers cancer a curse, and people are even wary of mentioning the disease by name. Consequently, cancer is referred to as “the bad disease.”

There is also a widely held misconception that cancer is contagious, and has spelt divorce for some women, whose husbands are scared their wives will infect them and their children. Moreover, if a young woman is diagnosed with breast cancer, she automatically becomes unmarriageable. For some men, acknowledging their wife’s illness is equivalent to admitting that she is “defective.” As a result, Egyptian women don’t come forward except at the latest stages of the disease when the symptoms are already very apparent. By that time, however, it is usually too late. And while women may boast of their ability to withstand physical pain, there is the psychological pain that the stigma of cancer entails. It is very difficult to address such fears about the disease when people are unable to even utter its name. Even today it is referred to as the “bad” or “cursed” disease. The “C” word is taboo.

Women are denied knowledge about the disease, are terrified of it, and are unaware of the services for treatment. In Egypt, there are no screening programs and there are usually long waiting-lines in cancer centers. There is such a lack of support and compassion that very often women go to centers and come out with their breasts removed, without the doctor having even prepared them for the operation, let alone attempted to cure the disease. There is no attempt to even get their consent; patients are not informed, nor provided with treatment options, women and their family are kept in the dark. Women end up not knowing or understanding what is happening to them and to their bodies. Post operation, there are no support groups, psychological support or counseling for women who lose their breasts, or for their families.

The cultural taboo and ignorance surrounding breast cancer is also manifested in the physicians’ and nurses’ attitudes towards breast cancer patients. Nurses are neither informed nor equipped, or compassionate. Most of the nurses that Mohamed had to train and with whom he deals had misconceptions about breast cancer. The role of the nurse as the backbone and support for the patient is lacking in Egypt. Moreover, there is no institutional structure in place to address this problem. There is no accreditation for diagnostic centers. There also exists no regulatory agency; any doctor, any gynecologist can operate on a woman with breast cancer. A doctor can operate unnecessarily on a patient without being held accountable, and due lack of knowledge, the patient, nor his /her family would realize or even suspect any malpractice. During such unnecessary surgical operation patients die, loose parts of their bodies or go through unnecessary pain. Mohamed is lobbying for awareness and policy change through his CSO.

The government lacks the resources to deal with such a large problem, and patient poverty and ignorance about the disease, renders the community/social sector the only capable party able to solve this problem. Nevertheless, even in the social sector, there are also no “advocacy” or “lobby” groups campaigning for the right to knowledge, health provisions, or exemptions for Breast cancer patients. While international health insurance companies cover breast cancer operations and plastic surgery for their patients, this is unheard of in Egypt.

Six years ago when Mohamed came back from the States after one year of a fellowship in University of California followed by field work in breast cancer centers in New York and Houston which are the two biggest breast cancer centers, he started working at the National Cancer Institute. It was then that he realized that there was a real problem regarding the lack of awareness about breast cancer in Egypt. Therefore, he began, through his own individual effort to give lectures at different venues, especially with the foreign community—wives of diplomats, USAID, Multinational companies. He then started to print brochures and subsidized mammograms in diagnostic centers (free days or subsidized). He also organized and implemented regular runs for awareness and medical check ups; “A Race for Cure” which he organized twice at the Cairo American College in Maadi in 2002 and 2003, three times at the Gezira Sporting Club in 2004, 2005, and 2006 and once in Maadi Club in 2004. He also created brochures and began an advocacy campaign targeting the media.

In 2001, he began the Breast Cancer Awareness Project before establishing his CSO. The purpose of the project was to raise people’s awareness, through lectures that are more organized, seminars, sports events, flyers, and brochures. He got the help of dedicated professionals and survivors and he raised money through these “non-traditional” races at schools and clubs. It was then that he began to think of establishing a CSO and he approached friends and colleagues to help contribute to the cost. Mohamed registered his CSO, The Breast Cancer Foundation of Egypt, in 2003. He established the CSO and all the furniture, equipment, and brochures to date were either donated or funded through the money raised from races. When he introduced support groups and cancer races, everyone made fun of him. At the time it was very new in Egypt, but now people are accepting and appreciating his work.

Helping to solve the problem that there are no accurate statistics on the incidence of breast cancer in Egypt, Mohamed’s CSO researches, collects data and statistics on breast cancer to not only gather accurate information about cancer, but also establish a local screening guidelines for Egyptian women as well as biographic data of case history and probability.

To address the lack of information and professional capacity among nurses and doctors, he decided to approach El Galaa hospital, the oldest women’s hospital in Egypt to raise awareness and build the capacity of its medical staff regarding breast cancer. He realized that neither the doctors, nor nurses, or technicians knew or understood anything about Breast Cancer. He began by screening 600 female employees at this hospital as a way to attract them. Then he managed to get volunteers (An American nurse and some Breast Cancer Survivors), and together they trained nurses and doctors. They even trained technicians who did not know how to take x-rays and mammograms. Mohamed bought educational films at his own expense and designed a questionnaire for “Epidemiological & Risk Factors.” The training lasted for one whole year.

In order to reach poor women in marginalized areas, who lack basic information about breast cancer, he began working in squatter areas and with poor women through networking with other CSOs. . To date, he has reached Ezbet Abu Qarn in Misr El Qaddima in Cairo, Farsis village in Delta Tanta, Al Agami in Alexandria. He also distributed information brochures at mosques, churches, doctor’s clinics. Mohamed lectured at Cairo University, Al Azhar University, public and private factories and companies. Through these visits he did not only lecture, but taught self-examination techniques and publicized the CSO’s services. The objectives of his CSO include public education and early detection, and education of health-care professionals. He wants his CSO to also act as an information resource center with a website to inform breast cancer patients. It also serves as an advocacy organization to spread awareness about breast cancer to women, as well as a support group for counseling women and their families, in addition to lobbying to safeguard the rights of breast cancers’ patients.

In Tanta city in Delta, in Feb 2006, Mohamed launched a free screening campaign to the families of diagnosed breast cancer patients, as they are a high-risk group. Mohamed and his CSO worked at Tanta cancer institute where he first trained doctors and nurses and then in 3 months they screened all the women members of families of diagnosed breast cancer cases; which were 500 women out of which 9 were diagnosed of cancer. Following that, Mohamed produced a report that he presented at a high visibility conference in Tanta to raise the awareness about cancer, its early detection and treatment. Community members, officials from MOPH and Tanta Governor, attended the conference. The campaign is still on going and has opened its services for all of Tanta’s residents.

Mohamed also launched a similar campaign at Ministry of Housing targeting all women employees there. His campaigns offer awareness seminars, self-examination classes, free physical exams by qualified doctors, free mammograms, and surgery if deemed necessary. 300 women were screened. As a result of the issues Mohamed raised regarding the importance of early detection and appropriate treatment of breast cancer at the Ministry of Housing and in return to his high sense of responsibility towards the Egyptian community; the Ministry of Housing, allocated a piece of land for him to build his dream of the first comprehensive breast cancer center in the Arab world. The ministry offered him the land at ¼ of its original market price to be paid in installments over 4 consecutive years on the outskirt of Cairo ( 6 of October city). Through his ongoing fundraising activities, Mohamed has managed to pay the first installment and he foresees that the center will be complete and operational in 2 years. Additionally on May 3rd 2006, due to his relentless efforts in lobbying, Mohamed received an official letter from the Minister of Health welcoming partnership between MOPH and Mohamed to draw on his expertise and research in drafting a national strategy for implementation regarding breast cancer in Egypt.

In the short term, Mohamed is working on creating institutionalized support groups for patients of breast cancer, on the establishment of an advocacy committee to lobby for breast cancer patients’ rights, on the establishment of the Egyptian Network of CSOs and CDAs against breast cancer, conducting a series of meeting for all interested CSOs and CDAs with two honorary media personals members during which the membership and the national strategy for awareness will be finalized. Also the production and circulation of a quarterly news letter of all of the activities of the network. He plans to also conduct two high visibility national conferences to which policy makers, donors and media representatives will all be invited. The conferences will also function as an open arena for cancer patients and survivors to give their life testimonies and ask for the needed policy change. Mohamed will also deliver a series of 6 technical TOT training courses conducted for governmental professions dealing with breast cancer. He will also allocate 3 women activists/celebrities who will be the face of the national media campaign for women against breast cancer and who will also assist in the national advocacy campaign. He has compiled and published a book about breast cancer survivors for free national distribution.

In the medium term, he plans to have the Ministry of health adopt his prevention, detection and treatment strategy to be applied on the national level and to erase all cancer related stigmas. He has already begun corresponding with the current Minister of Health who responded positively to him and a dialogue with the ministry has begun. The Ministry has announced the commencement of a national camagin, invited Mohamed and his CSO to be partners.

In the long-run he aims to create community-based breast-cancer centers –not only government-run but community and CSO run. These comprehensive breast cancer centers will offer affordable, subsidized screening, diagnosis, second opinions, adequate treatment and support to patients and their families, as well as affordable post-treatment sessions, physiotherapy, prosthesis etc.

Mohamed’s work as both doctor and entrepreneur make him a role model for civic-minded medical workers in Egypt. His influence, however, is highly dependent on his position at the National Cancer Institute, whose infrastructure and resources he uses to promote breast cancer awareness and treatment. It is essential, therefore, that he maintain his current employment. As a practicing doctor, he has greater prestige and credibility among the breast cancer patients he wants to reach out to, as well as within the Egyptian medical community in general.

While he will not be in need of an Ashoka stipend, he will need Ashoka’s networking help to connect to the CSOs that are capable of helping him spread information about breast cancer among underprivileged women in marginalized areas of Egypt. He also needs Ashoka’s help with the media and for general recognition. He ultimately wants to lobby for a regulatory body that can oversee breast cancer centers in Egypt and a national registry to record breast cancer related statistics, and he will need Ashoka’s connections with policy-makers for this.

Mohamed was born in an upper middle class family. His father is an engineer and his mother is a housewife. He has only one sister who is younger than him and who works in the field of development. Mohamed enjoyed a happy and warm family life where he enjoyed financial comfort and family security.

He went to private language schools and was a good student who did not only excel in his studies, but were also enjoyed sports activities. Mohamed was a member of the school football team.

In 1977, he went to Cairo Medical School (in Egypt it is directly after high school) where he graduated with highest honors in November 1983 and then he did one year of internship, followed by 3 years of residency in general surgery. Meanwhile, he completed his MSC with high honors. Then Mohamed started his DM that he completed in 1995. In 1996, Mohamed was appointed an assistant professor and then an associate professor in Jan 2005 at the National Cancer Institute.

Mohamed’s uncle, Karim Shaalan was a main influence in Mohamed’s life. His uncle practiced medicine in the U.S. for 23 years after which he returned to Egypt to benefit his country of his years of expertise in surgery. Upon his return, he was hired as the Director of Al Salam International Hopsital in Maadi. There he tried to put in practice medical quality control, capacity building of nurses and building the ethics of the medical profession. As a result, he was overthrown by the doctors there who did not like the fact of being questionable to any body. Yet Mohamed’s uncle was a fighter who believed in patients’ rights and he founded the first one day surgery center in the Arab World. Through his centre, Mohamed’s uncle changed the culture of health system in Egypt by introducing ambulatory surgery, introducing laparoscopic surgery, by upgrading the nurses profession who were previously treated like slaves, by introducing the first group practice in Egypt, by applying cost containment and informing patients to cost procedures before hand, by regularly conducting capacity building courses for his center’s staff. Although when he started, the medical community regarded him as a lunatic, they then had no choice but to follow in his shows as he not set the ground for ethical and professional medicine practice in Egypt and that had they not followed, their status would be gravely affected. Mohamed learned from his uncle the importance of team work, leadership, patients’ rights and integrity in the medical practice. He states that his uncle was the one who taught him the golden law of medicine which he strtictly still abides to” Patients first then the group and then the individual and that if one wants to make money then one should choose a different profession than medicine”.

Another person that also influenced Mohamed’s life was his grandfather. Mohameds grandfather who was a judge was always involved in community work with the Red Crescent. After his retirement, he became the head of the Red Crescent of Egypt. In summer vacations, Mohamed used to go with his grandfather to the Red Crescent. There he learned the usefulness and importance of community work and that one’s sense of responsibility towards his community is an integral part of one’s life and identity.

Mohamed was at the top of his class and was usually elected as the head captain of the class. He joined Medical school because he wanted a profession where he could be in touch with people. He was very clever and could have been a plastic surgeon and thus make more money, but he preferred to specialize in Cancer Surgery. He felt that very few doctors choose this specialty and most of the people run away from it. During his internship, he discovered that the majority of Cancer patients were poor and needed a lot of attention and support. He felt there was a greater need for medical students to choose this specialty.

Mohamed is married to Dalia who works in tourism. Mohamed is the happy father of Omar who is 3 years old and 1 year old Karim whom he named after his role model uncle.