APPENDIX A
Cancer Control in Malaysia and Tanzania

Cancer Control In Malaysia1

Malaysia is a an upper middle-income nation of 24 million (2006), made up of peninsula Malaysia and East Malaysia, which occupies one-third of the island of Borneo (the remainder of Borneo is part of Indonesia). It gained independence in 1957. Less than half the population now live in the rural areas. The gross domestic product (GDP) per capita in 2005 was $1,210 (purchasing power parity). Only 2 percent of the population earns less than $1 per day. By 2002, the youth literacy rate was 98 percent for males and females, and most youth were staying in school past the compulsory 6 years (Central Intelligence Agency, 2006).

HEALTH INDICATORS

Malaysia has raised the health status of its population to a remarkable degree. It spends about 4 percent of GDP (2001) on health care.

  • In 2004, life expectancy at birth was 69 years for males and 74 years for females (World Health Organization, 2006).

1

This country profile is taken from a paper commissioned by the Institute of Medicine and prepared by Dr. Ednin Hamzah and colleagues in Petaling Jaya, Malaysia (Hamzah, 2005).



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Cancer Control Opportunities in Low- and Middle-Income Countries APPENDIX A Cancer Control in Malaysia and Tanzania Cancer Control In Malaysia1 Malaysia is a an upper middle-income nation of 24 million (2006), made up of peninsula Malaysia and East Malaysia, which occupies one-third of the island of Borneo (the remainder of Borneo is part of Indonesia). It gained independence in 1957. Less than half the population now live in the rural areas. The gross domestic product (GDP) per capita in 2005 was $1,210 (purchasing power parity). Only 2 percent of the population earns less than $1 per day. By 2002, the youth literacy rate was 98 percent for males and females, and most youth were staying in school past the compulsory 6 years (Central Intelligence Agency, 2006). HEALTH INDICATORS Malaysia has raised the health status of its population to a remarkable degree. It spends about 4 percent of GDP (2001) on health care. In 2004, life expectancy at birth was 69 years for males and 74 years for females (World Health Organization, 2006). 1 This country profile is taken from a paper commissioned by the Institute of Medicine and prepared by Dr. Ednin Hamzah and colleagues in Petaling Jaya, Malaysia (Hamzah, 2005).

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Cancer Control Opportunities in Low- and Middle-Income Countries Infant mortality was 10 per 1,000 live births in 2004 (by comparison the U.S. infant mortality rate was about 6 per 1,000 live births) (World Health Organization, 2006), down from 73 per 1,000 in 1960. The under-5 mortality rate has dropped from 105 per 1,000 in 1960 to 13 per 1,000 in 2004 (World Health Organization, 2006). For adults, the age-standardized mortality rate was 200 per 1,000 for males and 109 per 1,000 for females in 2004 (World Health Organization, 2006). In 1999, the leading causes of adult mortality in medically certified deaths were cardiovascular diseases, cancers, septicemia, motor vehicle accidents, and pneumonia. The maternal mortality rate in 2000 was 41 per 100,000 live births, down from 500 per 100,000 live births before independence (World Health Organization, 2006). Undernutrition and malnutrition are now rare, and the prevalence of diet-related noncommunicable diseases (cardiovascular disease, diabetes) is increasing. These issues are recognized by the health authorities and are being addressed. THE HEALTH CARE SYSTEM The Ministry of Health (MOH) runs health care facilities. There is also an active private sector and a presence of traditional healers. The government health service provides practically free medical care for all, but facilities and personnel are overworked, and waiting lists can be very long. Private health services have no waiting lists, but are expensive. Patients in the private sector are covered by insurance, or care is provided by their employer, or they pay out of pocket. Only about 10 percent of the population has health insurance. A rapidly expanding private sector, coupled with unsatisfactory working conditions in the government services, has drained away skilled personnel from the public sector, which is chronically understaffed (Lim, 2002). In the public sector, primary care (immunization, family planning, maternity care, communicable disease prevention, and accident and emergency services) is provided in a range of institutions. Secondary and tertiary care are available at the district and general hospitals, but with variable staffing and services offered. Complex tests (e.g., immunological studies, tumor markers) and complex radiological investigations (e.g., mammography, CT scans, and MRI scans) are available only in larger hospitals (Ministry of Health Malaysia, 2006). Health clinics, staffed by health assistants, are easily accessible in every village and town, with the exception of the interior jungle of East Malaysia,

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Cancer Control Opportunities in Low- and Middle-Income Countries where aboriginal tribes live. The MOH sends teams of health workers who travel to the interior by river to run the community health clinics. Traditional medicine is still relied on, particularly in rural areas. Health Care Personnel About equal numbers of physicians work in the public and private sectors—about 9,000 in each in 2003. The public sector is very short of specialists, so the MOH recruits in nearby countries, mostly from the Indian subcontinent. Public health nurses and medical assistants serve in the rural clinics, where doctors may not be available. The medical assistant is being phased out as the number of trained doctors continues to increase. Pharmaceuticals The MOH provides essential medicines (from a list) to the public free of charge or heavily subsidized. Most routine drugs for common illnesses are on the list, and whenever available the use of generic drugs is encouraged. Very expensive drugs are not listed, including oncologic drugs such as Herceptin. Some expensive oncologic drugs, such as Taxotere, are listed, but availability depends on the budget. Morphine is strictly controlled. Private pharmacies do not stock morphine because they are afraid their stores will be broken into by addicts, so cancer patients are able to access morphine in hospitals only. Even so, the supply is limited and most hospitals will give patients no more than a 2-week supply at one time. Mortality Statistics and Disease Surveillance The Department of Vital Statistics produces mortality statistics, but their usefulness is limited because only about 40 percent of deaths are medically certified. Old age—defined as death in a person over 65 years old—is one of the most common causes of death (Department of Statistics Malaysia, 2006). Only a few diseases, such as HIV/AIDS and tuberculosis, require mandatory reporting, and these are underreported as most doctors are not aware of reporting requirements. Reporting cancer cases is not mandatory. A National Cancer Registry was started in 2002, but its accuracy has been questioned. Few regional cancer registries exist; examples are the Penang Cancer Registry and the Sarawak Cancer Registry, which may not be very complete.

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Cancer Control Opportunities in Low- and Middle-Income Countries TABLE A-1 Leading Cancers in Men and Women in Malaysia, 2002   Men   Women Site % All Cancers Reported Age-Standardized Rate per 100,000 Adults Site % All Cancers Reported Age-Standardized Rate per 100,000 Adults Lung 13.9 25.9 Breast 30.4 52.8 Nasopharynx 8.0 11.4 Uterine cervix 12.0 21.5 Colon 7.8 13.9 Colon 5.6 11.2 Leukemias 7.2 9.3 Ovary 5.0 8.6 Rectum 6.4 11.7 Leukemias 4.4 6.9 Prostate 5.7 11.6 Lung 4.3 8.7 SOURCE: Ministry of Health Malaysia (2003). CANCER CONTROL Cancer Burden About 26,000 people were diagnosed with cancer in 2002—12,000 men and 14,000 women. An estimated 10,600 cases were unregistered. Incidence rates in Malaysia fall between rates typical of low- and high-income countries. The leading cancers in adults are shown in Table A-1. The most frequent cancers in children were leukemias, lymphomas, and cancers of the brain, eye, connective tissue, and bones (Ministry of Health Malaysia, 2003). In 1998 (the most recent year for which this information is available), of the medically certified deaths, 10 percent were due to cancer, making it the fourth leading cause of death. Of the 40,000 new cases of cancer reported in 2002, 12,000 were treated in oncology centers (which are few and unevenly distributed). Those treated outside of oncology centers would have been seen by a surgeon or physician. Because oncology is a relatively new field in Malaysia, surgeons may decide on their own that surgery alone is enough and the patient does not need radiotherapy or chemotherapy. In some of the more peripheral areas, chemotherapy is initiated by the surgeon after surgery without referral to an oncologist. National Cancer Control Plan In 2003, the Cancer and Tobacco Control Unit of the MOH held a workshop on the National Cancer Control Plan. Key aspects are efficient use of resources, appropriate use of technology, and active community participation, supporting an ambitious list of goals covering all aspects

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Cancer Control Opportunities in Low- and Middle-Income Countries of cancer control. Policies have been developed in prevention, screening, early detection, adequate treatment, and palliative care. A plan to set up a national cancer institute in Malaysia has been developed, but is not currently feasible because of a lack of staffing. Implementation of the National Cancer Control Programme in Malaysia has been limited by funding and personnel (Lim, 2002). STATUS OF CANCER CONTROL ACTIVITIES Prevention and Early Detection Activities The enormous significance of tobacco is well recognized by the Ministry of Health (see Chapter 5 for more on tobacco control in Malaysia). Hepatitis B vaccination to prevent liver cancer and other serious liver disease was added to the national schedule of immunization in Malaysia in the early 1990s, achieving 88 percent coverage in 2003 (Ministry of Health Malaysia, 2006). A healthy lifestyle campaign was launched in 1991, followed by several thematic campaigns, such as the early detection of cancer campaign (1996) and the healthy diet and nutrition campaign (1997) (Ministry of Health Malaysia, 2006). No national population-based screening program for any cancer exists in Malaysia. Screening is opportunistic, with Pap smears and clinical breast examinations offered to women at wellness clinics and maternal and child health clinics. The Ministry of Women, Family and Community Development offers screening and early detection of breast and cervical cancers. In 2003, this Ministry gave a grant to the National Council of Women’s Organisations (NCWO), a group of nongovernmental women’s organizations, to carry out a Pap smear campaign and to teach breast self-examination to women in rural areas, a program that is now operating in almost all states in Malaysia. In a 1996 survey, 26 percent of eligible women reported having undergone at least one Pap smear examination. In the same year, 47 percent of women reported having some form of breast examination, either breast self-examination, health worker examination, or mammography (4 percent of women) (Lim, 2002). Diagnosis and Treatment In Malaysia, as in other developing countries, cancers are typically diagnosed in late stages. The reasons include delay in access to public hospitals because of waiting lists, cultural beliefs, and misconceptions that lead people to prefer treatment by traditional healers. The National Cancer Registry does not collect data on stage of disease at diagnosis, hence the

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Cancer Control Opportunities in Low- and Middle-Income Countries stage at diagnosis is known only from some hospital-based registries. In Hospital Kuala Lumpur (HKL), the main referral hospital for oncology in the country, 80 percent of patients with cervical cancer presented at Stages IIB to IV. In Sarawak, 26 percent presented at Stages I and IIA, with Stage III the most common stage (36 percent). Fifty to sixty percent of breast cancers are diagnosed in Stages III and IV at HKL (Hisham and Yip, 2004). In Sarawak, at least 70 percent of patients with cancers of the nasopharynx, breast, and cervix present in advanced stages. Early detection is being encouraged through public education and through medical assistants and nurses who are being trained to identify the early signs and symptoms of common cancers. The impact of this program is not yet known (Lim, 2002). Treatment Resources In Malaysia the rich can afford the best treatment anywhere in the world, while the poor and underprivileged are forced to travel long distances to the nearest oncology center, do not have access to the necessary drugs because of lack of money, are given suboptimal care, and suffer in silence. The necessary cancer specialists—surgeons, radiologists, pathologists, radiation and medical oncologists, plastic surgeons oncology nurses, and counselors—are not present in most hospitals. The country has only 21 cancer treatment centers, 6 of them in the public sector. Twelve centers are concentrated in or near the national capital of Kuala Lumpur while most places have none. The public-sector centers are overloaded, and waiting lists are long. In 2000, the Quality Assurance Committee in HKL reported that the waiting time for radiotherapy treatment in HKL was 5 to 8 weeks (Lim, 2002). Palliative Care, Including Pain Control Palliative care programs and hospice home care are being developed. More than 50 units of various sizes have been set up in government hospitals. Care of patients after discharge is carried out by medical personnel in the peripheral hospitals who have been trained in basic cancer care, with regular communication from the specialist units. Palliative care in the home is mainly the purview of nongovernmental organization (NGO) hospices, of which there were 20 in 2005. Two hospices operate 8-bed inpatient units. Palliative care in Malaysia is still very much end-of-life care. The perception that it represents only supportive terminal care and a loss of hope of curative treatment means that relatively few cancer patients are referred for palliative care. Many cancer patients experience pain, but few professionals are trained

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Cancer Control Opportunities in Low- and Middle-Income Countries in pain control. Strong (morphine and fentanyl) and weak (codeine and tramadol) opioids are available, but their use remains low. Per-capita morphine consumption in 2001 was 0.88 mg/capita, compared with the global mean of 5.44 mg/capita, which is itself very low (Pain and Policy Studies Group, 2003). Misconceptions about morphine—the drug of choice, according to the World Health Organization, and the least expensive choice—abound not only with the public, but also with health care workers. Conversely, transdermal fentanyl is heavily promoted despite its high cost and lack of recommendation for use in the acute setting. Pethidine is still popular with doctors in chronic cancer pain management despite its known dangers. Unfortunately, the choice of pharmaceuticals is often based more on promotion than on clinical guidelines. There is room for improvement in palliative care services. Several local medical schools, postgraduate courses in family medicine, and nursing colleges have introduced palliative care into their teaching programs. Workshops and seminars are held, and palliative care teams in hospitals are being developed. However, few doctors are interested in pursuing palliative care. CANCER HEALTH CARE PROVIDERS Oncologists Malaysia had 35 oncologists in 2005, almost all of them clinical oncologists who practiced both radiation and medical oncology. None were specialized radiation oncologists. Only 12 of these 35 oncologists were in the public sector, and about half of the total practiced in and around Kuala Lumpur. As a partial solution to the maldistribution and shortage, doctors in peripheral hospitals may refer patients to the oncology unit in HKL, and if chemotherapy is required, the oncologist will send the drugs to the referring doctor to administer. If radiotherapy is required, the MOH may buy the services of a private oncology unit if there is one in the area. In addition, oncologists at HKL run clinics in the peripheral general hospitals once a month. The problem with the shortage of oncologists is in the public sector, where the “brain drain” is not to other countries, but to the private sector, where doctors can earn 5 to 10 times a public-sector salary. Historically, physicians were trained in oncology overseas, mainly in the United Kingdom. They were sent by the MOH on a scholarship, after which they had to return to Malaysia. Opportunities for training in the United Kingdom have become more difficult in recent years, however. In addition, those who have gone abroad for medical training are unlikely to return to Malaysia to practice.

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Cancer Control Opportunities in Low- and Middle-Income Countries In 2003, the National University of Malaysia, in conjunction with the MOH, started a 4-year Master of Clinical Oncology Program with the goal of producing oncologists for the country. Because it is so new, no trained oncologists have yet emerged from this program. Oncology Nurses and Other Specialists The University of Malaya and HKL conduct oncology nursing courses, where nurses learn to administer chemotherapy and to counsel patients. A shortage of oncology nurses exists, however, because trained nurses leave the service. There is also a shortage of radiographers to assist with radiotherapy, although the University of Malaya runs a diploma course in radiography. Medical physicists are also in short supply, with usually only one per radiotherapy unit. Degree programs in medical physics are offered by a few universities (Ministry of Higher Education Malaysia, 2006). CANCER REGISTRATION AND MORTALITY The Malaysian National Cancer Registry (NCR) was started in 2002, and although there are deficiencies, the data are probably the most accurate cancer data available. The registry covers only Peninsula Malaysia, and not East Malaysia. A few regional cancer registries also exist, but these are not considered reliable. The value of hospital-based registries depends on the quality of medical records, including the degree of computerization, which is not high in most places. The NCR registers an estimated 85–90 percent of diagnosed cancers, and the validity of the data is comparable to those of established registries (Ministry of Health Malaysia, 2003). The first report of the NCR appeared in 2003. The Penang Cancer Registry, established in 1993, has also published incidence data. Case registration there is based primarily on voluntary notifications received from medical professionals in Penang, an island in the northwest region of Malaysia with a population of about 1.2 million (Yusoff et al., 2003). Malaysia still has a problem with accurate certification of deaths. Because of traditional and religious beliefs that an autopsy is a desecration of the body, postmortem rates are very low even in hospitals where the cause of death is not known. As seen from the causes of non-medically certified deaths, the most common cause of death is old age. Traditionally, the tribal races in Malaysia prefer to die at home, and hence there are more deaths at home than in the hospital. Deaths at home are certified by the police or village headman.

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Cancer Control Opportunities in Low- and Middle-Income Countries PATIENT ADVOCACY More than a dozen NGOs are involved in cancer support and advocacy in Malaysia. Some have established treatment centers, while others work to support public education and early detection. Almost all offer supportive and counseling services, and almost all operate in urban areas, although some organize early detection campaigns in rural areas. One NGO, the Cancer Research Initiatives Foundation, is purely a cancer research organization. Advocacy is also an activity of a few of these organizations, although the organizations do not seem to work together. They all raise money and some are supported by the government. A CANCER PATIENT’S JOURNEY IN MALAYSIA Madam C, 73 Years Old Madam C lived with her husband in a low-cost flat in Kuala Lumpur. She had two daughters and three sons. Madam C presented with Dukes D (advanced) carcinoma of the rectum in September 2003. She had a surgical resection of her tumor followed by radiotherapy. Chemotherapy was commenced, but she failed to complete the course. All services were provided in a private facility. In June 2004, she returned with lung and lymph node metastases. She was aware of her diagnosis but not her prognosis, though it was obvious that she slowly became aware. Following her disease progression, she moved into her eldest daughter’s house, which was more comfortable. Another daughter who lived a few hundred kilometers away also moved in to help. Her husband, unable to accept his wife’s condition, sought the assistance of an alternative practitioner. His treatment consisted of making deep incisions in her back and neck and filling the cavity with herbs. He charged RM 200 (about $50) for each appointment and saw her three times a week. She continued to deteriorate and in November 2004 was referred by her oncologist for palliative care. She presented as a woman in pain at multiple sites with a grossly swollen face, lymphedema of her left arm, skin metastases over her chest, and extensive cellulitis over the areas where incisions were made on her back. A combination of morphine and haloperidol was started as a subcutaneous infusion as she also had some vomiting. She was given antibiotics and steroids. The family was also convinced to cease the use of alternative treatment. Within a week, she had improved considerably. She was pain free and had regained some function. Over the next 4 months, however, her condition worsened. In the initial stages of Madam C’s illness, her husband had been dominant. As the illness progressed, the decision-making authority shifted to the

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Cancer Control Opportunities in Low- and Middle-Income Countries patient’s daughter and the patient herself. Although the patient and family generally were prepared for the eventual outcome, the amount of palliative care support required was substantial. Her final days were comfortable and she remained alert. The patient passed away in February 2005 with her family in attendance. Cancer Control In Tanzania2 Tanzania sits on the east coast of Africa, with Kenya to the north and Mozambique to the south. It is a large, diverse country of 37 million, and one of the poorest in the world. The economy is largely agricultural, accounting for half of the gross domestic product. The income per capita (purchasing power parity) is about $700. More than one-third of the population lives below the poverty line (Central Intelligence Agency, 2006). Infant mortality in 2006 is estimated at 96 per 1,000 live births. Life expectancy at birth is 45 years for males and 46 years for females. This is heavily influenced by AIDS, the prevalence of which is 9 percent of adults. Adult literacy (over age 15) is 78 percent (Central Intelligence Agency, 2006). A large proportion of the population has access to a variety of nutrients from small-scale farming. Animal protein, however, may be lacking in the diet of many because it must be purchased and most of the population is too poor. There is no evidence that dietary intake has changed much in recent years, although cardiovascular diseases and diabetes, generally associated with higher animal food and overall caloric intake, have begun to appear more frequently. MAJOR HEALTH ISSUES Communities are well informed about maternal and child health, including safe motherhood and utilization of family planning services at public clinics. The role of traditional birth attendants, who were the main practitioners in remote areas, is diminishing in many places due to provision of government health facilities near the communities. Other basic elements of primary health care have been implemented as the economic situation allows. HIV/AIDS awareness is high, with an emphasis on the use of condoms 2 This country profile is taken from a paper commissioned by the Institute of Medicine and prepared by Dr. Diwani Msemo and colleagues at the Ocean Road Cancer Institute in Dar es Salaam, Tanzania (Msemo et al., 2005).

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Cancer Control Opportunities in Low- and Middle-Income Countries and abstinence, or faithfulness for those who are married. Awareness programs have included the mass media, such as television plays. The government has urged all employers to form AIDS awareness committees in workplaces to sensitize workers. A nationwide program to provide antiretroviral therapy is being developed with the help of the Global Fund to Fight AIDS, Tuberculosis, and Malaria. THE HEALTH CARE SYSTEM The government or its agencies deliver most health care. Private-sector organizations, nongovernmental organizations (NGOs), and religious organizations contribute less than 20 percent of health services. Some hospitals are run jointly by the government and religious organizations, including some consultant hospitals and district hospitals. The relationship between the government and the religious organizations has always been cordial. The distribution of health facilities has a heavy rural emphasis because more than 70 percent of the population lives in rural areas. The government referral system assumes the pyramid pattern recommended by health planners: from village health service at the lowest level to consultant hospital in cities. Six of the nine universities in the country have medical and nursing faculties. However, this does not satisfy the country’s needs because most graduates are posted to district and regional hospitals, while most people live in rural areas. Clinical officers, nursing officers, and assistants, the backbone of primary health care provision in the country, are trained at more than 70 nursing and clinical officers’ training schools. Health Care Financing The government pays for health care in public facilities, where they exist. Certain services are funded entirely by donors, such as antiretroviral treatment for HIV/AIDS patients. Religious NGOs also provide services to the public. Patients contribute through cost sharing or through a national health insurance fund. Few Tanzanians are capable of meeting their health needs, however, due to low incomes and high unemployment. CANCER CONTROL Cancer is recognized by the government as a serious public health problem in Tanzania. Although much has been done to improve cancer services in the country, of the estimated 30,000 new patients each year, fewer than 10 percent are able to go for treatment at the Ocean Road Cancer Institute (ORCI), the only cancer institute in the country. Furthermore, about 80

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Cancer Control Opportunities in Low- and Middle-Income Countries percent of those who do come for treatment arrive when the cancer is far advanced and incurable. The government is also faced with other diseases such as HIV/AIDS, which has been declared a “national disaster,” overshadowing other health needs. Furthermore, the public is not aware that cancer is a major problem. Most people do not know that smoking causes cancer. The most commonly recorded cancers in adults are cancer of the cervix, Kaposi’s sarcoma (related to AIDS), and cancers of the esophagus and breast. In children, Burkitt’s lymphoma is the most commonly seen cancer, followed by retinoblastoma, nephroblastoma, and rhabdomyosarcoma. Ocean Road Cancer Institute and the National Cancer Control Plan Established by an Act of Parliament in 1996, ORCI, in the capital, Dar es Salaam, evolved from the radiotherapy department of the Muhimbili University teaching hospital. Surgical services, not available at ORCI, are offered at Muhimbili Hospital. ORCI was created based on the realization that the national cancer policy would require coordination and guidance by a designated institution in order for it to be effective. ORCI is the only designated cancer institute in sub-Saharan Africa outside of South Africa. The ORCI management has prepared a National Cancer Control Programme (NCCP), which was endorsed by the Ministry of Health in 1997. A position paper on cancer services in Tanzania has also been reviewed and endorsed by the ORCI Board of Trustees. ORCI offers some aspects of palliative care, radiotherapy, chemotherapy, and cancer screening. The Tanzania NCCP has seven objectives, each of which is defined by specific activities: To establish reliable and sustainable sources of data on cancers in Tanzania through cancer surveys To conduct educational and training programs for the identified target groups, including the public, primary health care workers, and students in health training at various levels To conduct various types of research (epidemiological, clinical, anthropological) on cancers of particular importance, and to build capacity in research through international collaborations and other means To foster cancer prevention initiatives for Tanzanian communities To make early detection services more widely available in Tanzania To establish cancer control networks within the country To provide quality cancer treatment and palliative care to cancer patients Work has begun on all of these objectives, but funding is not sufficient for much progress.

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Cancer Control Opportunities in Low- and Middle-Income Countries Prevention Activities The magnitude of the tobacco problem is not well established. Major efforts in tobacco control have not been made, although some campaigns in newspapers and on television and radio have taken place. Alongside anti-tobacco messages, cigarette companies are targeting people of all ages, mostly in urban settings. The hepatitis B vaccine was incorporated into routine childhood vaccinations in 2001, achieving reported coverage of 94 percent in 2004 (possibly an overestimate) for all three doses. The vaccine would be too expensive for Tanzania to afford on its own, so it is subsidized by the Global Alliance for Vaccines and Immunization. Regarding secondary prevention, the only screening facilities are at ORCI in Dar es Salaam. Screening is directed toward breast cancer through clinical breast examination and mammography for those who are at risk and can afford to pay about $40 for the service. A cervical cancer screening project, using Pap smear and biopsy for those with a positive Pap smear, is also situated in Dar es Salaam. This project is donor funded with specific objectives and is time limited. Few individuals access the service; no exact figure is available on the number of patients screened annually. Diagnosis and Treatment Cancer therapy in Tanzania is available mainly at ORCI, where most patients are treated with radiation because they present too late for other treatments to be beneficial. ORCI has the only radiotherapy unit in the country. Surgery is rarely done in other hospitals, even if patients present early enough, due to lack of expertise or facilities or both. Poor nutritional status of most patients at the time of presentation also makes surgery riskier. Chemotherapy is given at ORCI for both solid and hematological malignancies, although a medical oncologist is not always on staff, which has been a recurrent problem. About 2,500 new patients are seen annually at ORCI, a fraction of the people in the country with cancer. Those without access to diagnostic facilities are presumed to have died of unknown causes. Some people resort to traditional healers because they are easily accessible, living in the same communities. Others do so because they believe they have been bewitched. Others are diagnosed by referral hospitals, but fail to come to ORCI for treatment due to lack of funds. No national figures are available on the number of patients diagnosed and treated annually.

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Cancer Control Opportunities in Low- and Middle-Income Countries Palliative Care and Pain Control Palliative care is in its infancy in Tanzania, with fewer than 10 percent of those who need palliative care having access. The number of patients who receive palliative care annually is not known. ORCI has practiced palliative care since its founding, and is the only hospital in the country that dispenses oral morphine. ORCI was instrumental in persuading the government to make the necessary arrangements to make oral morphine available for the first time. This involved making sure that staff members were trained in palliative care and the handling of morphine in order to meet the requirements of the pharmacy board. At ORCI, a month’s supply of morphine syrup costs the equivalent of about two loaves of bread, so cost is not a barrier for most people. Recently, services have been expanded to include some home-based care. With the growing numbers of HIV/AIDS patients, some NGOs have been established to offer palliative care. These NGOs get oral morphine from ORCI. Regarding the World Health Organization (WHO) “Three-Step Analgesic Ladder,” (see Chapter 7) Step 1 drugs are available in every health facility and over the counter in pharmacies at prices that are affordable for most people. Step 2 drugs (weak opioids) are not available in most hospitals, and even where they are available, they are too expensive for the average person. The only Step 3 drug available in most district, regional, and referral hospitals is injectable pethidine, which is not recommended for the chronic pain of late-stage cancer and AIDS patients. A situation analysis and a needs assessment of palliative care, which was funded by WHO in 2002, revealed that the patients’ biggest need was relief of pain with accessible and affordable drugs. The most common problem for patients and caregivers was the inability of patients to afford the drugs. In addition, most health professionals in Tanzania have had no training in pain control, so it is not surprising that they do not manage pain effectively. “Opioid phobia” is common among health professionals, as documented by the WHO situation analysis and needs assessment. CANCER HEALTH CARE PROVIDERS In 2005, there were six oncologists/radiotherapists in Tanzania, all working at ORCI. There were no formally trained oncology nurses, although most nurses working at ORCI had significant experience in cancer nursing. There was no laboratory technician with specialized cancer training. No specialized training in oncology is available in the country. All six practicing oncologists have been trained outside the country and returned to render their service, despite a relative lack of incentive to do so compared

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Cancer Control Opportunities in Low- and Middle-Income Countries with other specialties. Only one oncologist who left the country for training did not return. CANCER ADVOCACY With only one cancer institute for 37 million people, cancer awareness among Tanzanians is very low. Under these circumstances, advocacy is not only an option but a necessity. The Tanzania Cancer Association has begun initiatives to improve cancer care in the country, with the following objectives: Increase cancer awareness among Tanzanians Promote cancer prevention, early diagnosis treatment, and palliative care Improve treatment facilities for cancer patients Encourage research on cancer in Tanzania Utilize patients’ voices to strengthen cancer care in Tanzania It is not yet clear how effective the Cancer Association will be. A CANCER PATIENT’S JOURNEY IN TANZANIA Mrs. K. is a 42-year-old premenopausal lady who arrived at Ocean Road Cancer Institute in Dar es Salaam with a vesico-vaginal fistula secondary to cancer of the cervix. She comes from a village called Ngulu in northern Tanzania. Four years ago she started having postcoital bleeding. Her closest friend Nzota told her that maybe her husband’s penis is growing, which she called a normal occurrence. She shared that concern with her husband. But instead of empathizing with his wife, he was very happy because men believe that a man who makes a woman bleed after sex is a strong man. Two years later, when she developed a foul-smelling vaginal discharge, she asked another friend, Mrs. Makoko, who told her that it is normal for women to have vaginal discharge. She was not convinced by that explanation so she asked Namwaka, another friend, who told her that she may be bewitched and that she should not disclose this to her husband, because he would use it as an excuse for marrying a second wife. Namwaka arranged for Mrs. K. to see Kokoto—a well-known cancer witch doctor—in Nyumba ya mungu, about 20 kilometers away from Ngulu. Transport from Ngulu to Nyumba ya mungu is difficult due to poor infrastructure. Before traveling to see the witch doctor, she consulted a doctor in the village dispensary who, without doing a speculum examination, gave her ampicillin and Flagyl and assured her that she would be fine. She was never fine, and over the next year she

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Cancer Control Opportunities in Low- and Middle-Income Countries visited the dispensary six times, each time being given similar antibiotics without relevant examinations. She later took a journey to Usangi district hospital, where similar antibiotics were given, again without appropriate examinations. One of her daughters, who is in Moshi, was concerned with her mother’s health and decided to take her to Mawenzi regional hospital, where the clinical diagnosis of cervical cancer was made after the patient pleaded with the doctor to inspect her vagina. The doctor otherwise did not suspect cancer. The diagnosis was terrifying information when told to the family. Most family members believed she was bewitched and should seek help from Kokoto, the cancer witch doctor. (Of note is that her eldest son was not informed because it is a cultural taboo for a son to hear that his mother is having vaginal discharge or bleeding, or is sexually active.) She went to see Kokoto a week later. The cancer witch doctor confirmed that it was a cancer and said he was capable of curing it as long as she promised not to seek modern medicine. She started getting local herbs from Kokoto. During the first 3 months Mrs. K.’s general condition improved remarkably, but after that time, there was no further improvement. She continued to take local herbs for a year until she started leaking urine through her vagina. Her husband ran away from her at this point and married another woman because Mrs. K. came to be considered a social nuisance. At this point even Kokoto gave up and advised her to try modern medicine at Ocean Road Cancer Institute, where she presented with incurable Stage IVA cervical cancer. REFERENCES Central Intelligence Agency. 2006. Malaysia. In: The World Fact Book 2006. Washington, DC: Central Intelligence Agency. Department of Statistics Malaysia. 1999. Vital Statistics Malaysia 1999. Kuala Lumpur, Malaysia: Department of Statistics Malaysia. Department of Statistics Malaysia. 2006. Department of Statistics Malaysia. [Online]. Available: http://www.statistics.gov.my [accessed October 30, 2006]. Hamzah E. 2005. Malaysian Case Study of Cancer Control. Commissioned by the Institute of Medicine. Hisham AN, Yip CH. 2004. Overview of breast cancer in Malaysian women: A problem with late diagnosis. Asian Journal of Surgery 27(2):130–133. Lim GC. 2002. Overview of cancer in Malaysia. Japanese Journal of Clinical Oncology 32(Suppl):S37–S42. Ministry of Health Malaysia. 2003. The First Report of the National Cancer Registry: Cancer Incidence in Malaysia 2002. Kuala Lumpur, Malaysia: Ministry of Health Malaysia. Ministry of Health Malaysia. 2006. Ministry of Health (English version). [Online]. Available: http://www.moh.gov.my/MohPortal/index.jsp?lang=en [accessed October 30, 2006]. Ministry of Higher Education Malaysia. 2006. Ministry of Higher Education. [Online]. Available: http://www.mohe.gov.my/ [accessed October 30, 2006]. Msemo D. 2005. Cancer Control in Tanzania. Commissioned by the Institute of Medicine.

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Cancer Control Opportunities in Low- and Middle-Income Countries Pain and Policy Studies Group. 2003. Morphine consumption figures. World Health Organization. 2006. Core Health Indicators. [Online]. Available: http://www3.index.htmlwho.int/whosis/core/core_select.cfm?strISO3_select=MYS&strIndicator_select=MortInfantBoth&intYear_select=latest&language=english [accessed July 10, 2006]. Yusoff H, Devaraj T, Rokiah M, Aishah K, Rafidah MN, Chan CK, Nor Asikin AK. 2003. Penang Cancer Registry Report 1994–1998. Penang, Malaysia: Penang Cancer Registry.