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Volume 8, Number 2, Special Issue: Burkitt lymphoma (Replaces Summer and Fall Issues 2008) — Inside: REPORT: Progress Report My Child Matters (MCM) Program – Kenya - 8­ - report: The UICC My Child Matters Project in Tanzania - 10 - case report: Methotrexate-induced Skin necrosis in a child receiving low-dose metho- trexate - 13 - report: NNCTR/INCTR Nepal: The Cancer Program in Nepal - A Brief Progress Report - 15 - FORUM: NCI’s Office of International Affairs Addresses Global Burden of Cancer - 20 - News - 22 - partner profile: Comité Héraultais de la Ligue Contre le Cancer - 23 - profile in cancer medicine: Saving Eyes, Saving Lives - 24 The President’s Message

Denis Burkitt and the African lymphoma by Ian Magrath

Discovery of the Tumor Denis Parsons Burkitt was born in 1911 in Enniskillen, the picturesque county town of Fermanagh, now in Northern Ireland. “Enniskillen” is derived from a Gaelic word mean- ing Ceithleann’s island, the town being situated on an island between two loughs (lakes) connected by the river Erne. According to Irish mythology, Ceithleann was the wife of Balor, the one-eyed king of a race of giants – a mythology that has echoes in Burkitt’s life. Sadly, at the age of 11, young Denis suffered Figure 1. Lake Victoria, Uganda. The regions surrounding the lake are high incidence an injury that led to the loss of an regions for Burkitt lymphoma. Picture from Wikipedia Commons taken by D. Luchetti. eye. Although this hampered his eyesight and, to a degree, his subse- him to meticulously map their ter- footsteps of two Irish literary giants, quent career as a surgeon, it had no ritories. James Burkitt’s maps must Oscar Wilde and Samuel Beckett effect on his insight. Burkitt doubt- have impressed his elder son, who who, like Burkitt, also continued less inherited some of his observa- was later to map the distribution of their education at Trinity College, tional skills from his father, James the “African lymphoma” (Figure 1). Dublin. Burkitt, without a clear idea Parsons Burkitt, a civil engineer, Dennis Burkitt, attended the Portara of his future, had taken up engi- but also an amateur ornithologist Royal School at Enniskillen, one of neering at Trinity College. He joined who was one of the first to use the five free schools founded by Royal the University Christian Society, technique of ringing or banding to Charter in 1608 by King James I. which gave new meaning to his life; recognize individual birds, allowing In this respect he followed in the he decided that his calling was to 1 NETWORK

become a missionary. This, perhaps spent leave in Uganda and visited coupled to sharing a room with a the old Mengo Hospital, where the medical student, led him to give up first missionary doctor to Africa, Sir his engineering studies and instead, Albert Cook, had worked, as well take up medicine. After completing as the Mulago teaching hospital in his studies he decided to become Kampala, where he himself would a surgeon – somewhat surprising, later work. This experience, cou- perhaps, in view of his lack of bin- pled to his evangelical zeal – and ocular vision – and completed his possibly the example of his Uncle basic training shortly before the Roland, who practiced surgery in Second World War. Nairobi – convinced him that he was Burkitt took a position as ship’s destined to serve in Africa. In 1946, doctor before applying for a post therefore, Burkitt again applied to in the colonial medical services. the British Colonial Office for a post. Unfortunately, he was turned down This time he was accepted and was because he had only one eye. After appointed to the position of District Figure 2. Map of Africa showing the other unsuccessful applications for Medical Officer in Lira, a small town “lymphoma belt” in which Burkitt lym- an overseas posting, he decided to in the Northern Lango district of phoma occurs at high incidence. Lower join the Army Medical Corps and, Uganda. While there, he noted a incidence areas (e.g., highlands) within after working in England for a while, high incidence of hydrocele, caused this zone are not shown. was sent to Africa, where he served by mosquito-born filarial worms in Somalia and Kenya. Once, he that block lymphatic vessels, and mandibles) in a 5 year-old-boy he was able to show that the incidence was asked to see in the children’s was much higher in the eastern part ward at Mulago hospital by the of Lango (30% of men) than the pediatrician, Hugh Trowell. A biopsy western region (1%). This experi- report described the tumor as a ence, too, must have sensitized him “small round cell sarcoma.” Burkitt Editorial Staff to geographic epidemiology while was unable to offer any advice Ian Magrath, Editor impressing upon him the important on treatment, although the gross Marcia Landskroener, Managing Editor role of arthropod vectors in trans- facial distortions caused by the jaw Bénédicte Chaidron, Assistant Editor Sophie Lebedoff, Lay-out mitting disease in Africa – a lesson tumors made a big impression on that served him in good stead in the him. Shortly afterwards he saw a Address correspondence to: context of the African lymphoma. second child, with tumor in all four INCTR aisbl at the Institute Pasteur Burkitt had been in Lira for only 18 jaw quadrants, during a regular visit Rue Engeland 642 1180 Brussels • Belgium months when he received a tele- to a hospital in Jinja, a small town +32 2 373 93 23 • [email protected] gram summoning him to Mulago situated where the river Nile flows www.inctr.org Hospital (Figure 2) where Ian out of Lake Victoria (one of the McAdam, the only other formally illusive sources of the Nile sought Network: INCTR Newsletter c/o Marcia Landskroener trained surgeon in Uganda at the by the European explorers, Burton 3817 McGinnes Road time, had became ill. McAdam, who and Speke). This second child also Millington, Maryland 21651 USA subsequently became the head of had tumors in the abdomen. Like [email protected] the Department of Surgery in the the first, his disease had been diag- University Hospital, was to become nosed as a small round cell sarcoma. Views, comments and statements a strong supporter of Burkitt’s sub- The coincidence of seeing two chil- are not necessarily shared or sequent work. dren with jaw tumors in quick suc- endorsed by INCTR. All patients' It was not until 1957 that Burkitt cession led Burkitt to examine the photographs are published with their consent. saw his first case of multiple jaw records of other patients seen in tumors (i.e., bilateral maxillae and Mulago hospital. He identified 29 2 President’s message

other children who had presented pathologists also working at Mulago childhood malignancy in the USA, with jaw tumors, although many, Hospital, were in the process of sur- was the least common in East Africa, like the child in Jinja, had additional veying the malignant tumors in chil- accounting for only 1-3% of child- disease at other sites, including the dren in the Mulago Hospital Registry hood cancers in several published orbit and abdomen, salivary glands, that had been initiated seven years series. ALL remains uncommon in nervous system and elsewhere before. In fact, Davis had earlier Equatorial Africa today – but that is (Figure 3). Most of these tumors observed that approximately half of another story. were diagnosed as small round the childhood tumors were derived cell tumors and variably reported, from the “reticulo-endothelial sys- Discovery of according to the sites of disease, as tem” and O’Connor’s and Davis’ more Epstein-Barr Virus sarcoma, retinoblastoma, germino- extensive review, which included A few months after the publication blastoma, Ewing’s sarcoma, Wilms’ children without jaw tumors, con- of Burkitt’s first paper, Dr George tumor or neuroblastoma. firmed this. It soon became clear Oettle, a cancer specialist from Although several European pathol- that the tumor described by Burkitt South Africa, visited Kampala, and ogists working in Africa had observed was a lymphoma and, in 1961, Burkitt Burkitt was intrigued to learn from the high incidence of jaw tumors, and O’Connor published additional him that he had never seen children and of lymphomas in children with papers in the journal Cancer, bring- with a similar clinical syndrome in cancer many years before Burkitt ing it to the attention of cancer South Africa. This observation, influ- saw his first case, Burkitt was the first specialists. Although it seemed ini- enced, perhaps, by his earlier work to describe the clinical syndrome. He tially that the tumor was confined on hydrocele, led Burkitt to think proposed that all the children with to Africa, it was subsequently rec- about the geographical distribution jaw tumors, regardless of other sites ognized that histologically identical of the tumor. Was it widespread of disease, were probably suffer- lymphomas occur throughout the throughout Africa, or confined to ing from the same disease. His first world, although at a much lower certain regions? Burkitt hung a map paper, entitled “A sarcoma involving incidence and with some differences of Africa on the wall of his office and the jaws of African Children” was at clinical (Figure 4) and molecular started to indicate places where published in the British Journal of levels from the African lymphoma. children with jaw tumors had been Surgery in 1958 (vol. 46, 218-213). The relationship of Burkitt lympho- seen. He sent 1,000 brochures to This aroused little interest, since the ma to ALL was frequently discussed government and mission hospitals disease offered limited scope for sur- since the latter disease was rarely throughout Africa and started to gery. However, unknown to Burkitt, seen in Africa. Dalldorf reported plot the “lymphoma belt” shown in Gregory O’Conor and Jack Davis, in 1962 that ALL, the commonest figure 1. By now, several research organizations were interested in the tumor and Burkitt was given several grants, totaling £700, which enabled himself and two friends, Ted Williams and Cliff Nelson, both missionary doctors, to undertake a safari to define the southern limit of the high incidence zone on the Eastern side of Africa. Burkitt and his co-researchers set off from Kampala on October 7, 1961 in a 1954 Ford station wagon and returned 10 weeks later, having visited some 57 hospitals in eight countries and travelled 10,000 miles. Although Figure 3. Children with Burkitt lymphoma showing multiple disease sites. imprecise by today’s standards, the 3 NETWORK

Middlesex Hospital in London in Number of patients 0-5 yrs 70% 0-5 yrs 23% 0-14 yrs 54% 0-16 yrs 14% March 1961, was attended by a 14+ yrs 24% 16+ yrs 19% 80 pathologist interested in virology, 70 Michael Anthony Epstein. Impressed Number of patients 60 with the possibility that the lympho- 50 5 ma could be caused by a mosquito- 40 4 vectored virus, Epstein approached 30 3 Burkitt after the lecture and asked 20 2 him to send some tumor samples to 10 1 London in order to search by elec- 0 1 2 3 4 5 6 7 8 9 10 11121314 1 2 3 4 5 6 7 8 9 10 11121314 tron microscopy for virus particles 41+ 41+ Age (years) 15-2021-3031-40 Age (years) 15-2021-3031-40 in the tumor cells. Initial studies of tumor cells flown in from Uganda Figure 4. Age distribution of Burkitt lymphoma and fraction of patients (red columns) were negative, but Epstein and with jaw tumors. Jaw and orbital tumors are particularly common in young children in Barr succeeded in developing sev- African Burkitt lymphoma, but not in Burkitt lymphoma in the USA. eral continuously growing cell lines from the tumor cells. In the first of characteristic jaw tumors provided ognition that low-lying areas where these, Epstein Barr-1 (EB1), Epstein a powerful marker of the occurrence the tumor did not occur were arid and his co-workers, Achong and of the tumor, and Burkitt and his regions, such as Kano in southern Barr, were able to identify herpes- friends were able to show that the Nigeria. It seemed that the tumor like virus particles in a small fraction “tumor belt” extended to Lourenço was common in regions with tem- of the cells. Unable to demonstrate Marques in southern Mozambique. peratures that did not fall below 60° reactivity with sera derived from Having defined in some detail the Fahrenheit, as long as there were at patients known to be infected with high incidence regions, it appeared least 20 inches of rainfall per year – other herpesviruses, it was clear that in East Africa, at least, the bar- conditions required for mosquitoes that this was a previously unde- rier to the occurrence of Burkitt to breed. scribed virus and potentially the lymphoma was altitude. Burkitt On seeing Burkitt’s new, improved first human tumor virus. The report discussed this with Alexander map, Haddow confirmed that the of their discovery was published in Haddow, director of the East African distribution of the tumor con- 1964 – just a few years after the rec- Virus Research Institute in Entebbe. formed closely to the distribution ognition of the unusual distribution Haddow studied Burkitt’s map and of number of diseases known to of the African lymphoma. pointed out that the altitude barrier be transmitted by insects, includ- It has subsequently become clear occurred at 5,000 feet at the equa- ing trypanosomiasis (sleeping sick- that all tumor cells (and derived cell tor (which passed through Uganda) ness), yellow fever, and the recently lines) in African Burkitt lymphoma and became progressively lower recognized O’Nyong Nyong. The contain multiple copies of the EBV with the distance from the equa- findings seemed to be consistent genome, although the viral genome tor. This strongly suggested that with earlier research, particularly is present in only 1-10 per million temperature rather than altitude in the USA, that had demonstrated circulating B lymphocytes (B lym- constituted the true barrier, as had that malignancies in animals, par- phocytes, which are involved in anti- already been shown for a number ticularly sarcomas and leukemias, body production, are the cell lineage of insect-born diseases, particular- could be transmitted by viruses, in which EBV persists throughout ly those vectored by mosquitoes. although no one, at that time, had life). This alone suggests an impor- Additional visits by air to Rwanda, succeeded in identifying a human tant role for EBV, since African Burkitt Burundi, Kinshasa (Leopoldville at tumor virus. lymphoma clearly occurs preferen- the time), Nigeria and Ghana, con- Meanwhile, Burkitt had been tially in the small fraction of EBV- firmed the importance of altitude/ receiving many invitations to speak. containing cells. It was also dem- temperature but also led to the rec- One of his lectures, given at the onstrated that EBV can “transform” 4 President’s message

resting B cells into large proliferating exchange, particularly mothers to Burkitt lymphoma has a higher fre- cells, suggesting that EBV could be infants. For example, in the absence quency in rural regions. the driving force to the growth of of puréed baby foods, mothers often Burkitt and others began to Burkitt lymphoma. This proved to be pre-chew the food they give to their explore the malaria (or “alterna- wrong, however, for although EBV infants during the weaning process. tive”) hypothesis and made a num- can “immortalize” normal B lympho- Thus, EBV infection, which in any ber of tantalizing observations. In cytes in vitro and induce them to case occurs throughout the world, the islands of Zanzibar and Pemba proliferate, in doing so it expresses 9 cannot explain the high frequency off the coast of Tanzania, and viral genes (so-called “latent” genes) zone of Burkitt lymphoma in Africa. Leopoldville (now Kinshasa), inten- whereas only one of these genes, Interestingly, in the same year that sive malarial eradication programs Epstein Barr virus nuclear antigen 1 EBV was discovered (1964), anoth- (directed at mosquitoes) had dra- (EBNA-1), along with some untrans- er explanation for the climatically matically reduced the frequency of lated RNA molecules, are expressed determined distribution of BL was malaria (from 70% to less than 5%). in Burkitt lymphoma. EBNA-1 is suggested – malaria. This possibility, In each case, in spite of the favor- known now to be responsible for the first expressed in print by Gilbert able climatic characteristics, Burkitt replication of the viral genome, and Dalldorf, a microbiologist from lymphoma had not been reported. for maintenance of the same num- Sloan-Kettering Institute in New Since then (in the case of Zanzibar, ber of genome copies in daughter York, had been heavily overshad- since 1964), the DDT-based eradica- cells. It does not drive proliferation. owed by the vectored-virus hypoth- tion programs have been halted Actual virus is rarely produced in esis. By now, Burkitt’s enquiries had and malaria has returned to these tumor cells because it is associated established that the tumor was also regions – along with Burkitt lym- with cell disruption (lysis), allowing common in Papua New Guinea, and phoma. In a meeting held in 1967, virus to escape and infect other cells Dalldorf, in a detailed epidemiologi- Barnley pointed out that topog- or other people (an essential part cal study, pointed out that malaria raphy also influences the ecology of its life cycle). Thus, cell lines or was holoendemic in both equato- of arthropods. Steep river valley tumors could not survive and the rial Africa and New Guinea, and that slopes, for example, are not condu- virus would not persist throughout repeated infections were nearly uni- cive to the persistence of temporary life if all infected cells produced virus. versal in the first year of life with rain pools fully exposed to the heat We now have a detailed understand- variation in the intensity of infection of the sun, which are the preferred ing of the structure and function of being related to temperature and breeding places for Anopheles various EBV proteins, but the precise rainfall, which influence the breed- gambiae mosquitoes, and are gen- mechanism(s) whereby EBV contrib- ing of mosquito vectors (Anopheles erally devoid of malaria. He also utes to the development of Burkitt species) of malaria. He noted that in stated that large bodies of fresh lymphoma remains ill-defined. Kenya, the highest incidence rates water (such as Lake Victoria) pro- of holoendemic malaria and the vide the major breeding grounds A Role for Malaria African lymphoma occur in identi- for Anopheles funestus. These find- The geographical studies carried cal areas – along the coast of the ings were consistent with a role out by Burkitt and others suggested Indian Ocean and the shores of Lake for a disease born by anopheline to most that the African lymphoma Victoria. Goma, also in 1964, pre- mosquitoes, but did not prove that was a rare manifestation of a com- sented evidence based on extensive malaria was the disease in question, mon virus infection transmitted by surveys in two districts in Uganda although the relationship between mosquitoes. The subsequent dis- that Burkitt lymphoma tends to the intensity of malarial infection covery of EBV seemed to confirm occur in communities which are very and the occurrence of Burkitt lym- this. However, it is now known that close (within a mile) to permanent phoma has been confirmed by a EBV is not transmitted by mosqui- or semi-permanent surface water, number of more recent studies in toes, but via saliva. In societies of whether in the form of swamps both East and West Africa. low socioeconomic status, there or lake-edges, where mosquitoes Much later, Geser, Brubaker, de are many opportunities for saliva breed. This doubtless explains why Thé and others conducted clinical 5 NETWORK

studies in the North Mara district of the system of distribution of chloro- at least one mosquito-born disease, Tanzania designed to study the role quine, which presumably accounted most probably malaria, predisposes of malaria directly. In this region, for the increase in parasitemia rates to the development of Burkitt lym- active searching for cases of BL had that began after only two years of phoma. Malaria causes profound been ongoing since 1970, permit- prophylaxis. Thus, although these hyperplasia (overgrowth) of B lym- ting the measurement of incidence results are very suggestive of a role phocytes – the cell lineage from rates, along with surveys of malaria for malaria in the genesis of African which Burkitt lymphoma is derived. parasitemia and antibody levels). Burkitt lymphoma, they are gener- It also results in an increase in the With this background information ally not considered to be definitive. proportion of circulating memory B in hand, malaria prophylaxis (using cells infected by EBV, strongly sug- a dose of chloroquine every two Characteristic gesting that the total body burden weeks) was initiated in all children Chromosomal of EBV is also increased. This could aged 1-10 years for a period of five Translocations and result in an increased likelihood of years (1977-82). The incidence of the Development the occurrence of the specific chro- malaria parasitemia initially fell to of Burkitt Lymphoma mosomal translocations that are the the lowest levels ever recorded, In 1975, a characteristic chromo- proximate cause of Burkitt lympho- and the incidence of Burkitt lym- somal translocation (t8;14) was dis- ma. EBV probably also contributes phoma also dropped considerably covered by Zech and colleagues directly to the development of the (from four to one per 100,000 per in Burkitt lymphoma. Subsequent tumor, perhaps by inhibiting cell year) and remained statistically sig- molecular studies in the 1980s dem- death by apoptosis, which would nificantly lower throughout the five onstrated that this and related “vari- otherwise be induced by the inap- year period, beginning to rise only ant” translocations resulted in the propriate expression of MYC. after discontinuation of chloroquine juxtaposition of an immunoglobu- prophylaxis (Table 1). However, the lin gene (the genes responsible for Discovery of the drop in incidence appeared to have the production of antibodies) to an Response to begun prior to the administration of oncogene called MYC – a gene heav- Chemotherapeutic malaria prophylaxis, although this ily involved in a variety of critical Agents did not reach statistically significant cellular pathways including growth While the epidemiological questions proportions. This could have been and programmed cell death (apop- raised by the observations made by chance alone, since the relatively tosis). After many years of research, in Africa were intriguing, Burkitt small population of people in the it is now believed that the ectopic and other clinicians in Africa were North Mara lowlands where the trial (inappropriate) expression of MYC faced with the pragmatic problem took place - approximately 140,000 in B cells undergoing an immune of managing children with this dis- at the beginning of the study - is like- response, most often caused by reg- ease. Surgery was hardly an option ly to result in a somewhat unstable ulatory elements in the adjacent, – even on the rare occasions when annual incidence rate, although rates translocated immunoglobulin gene, tumor could be entirely removed, as low as those observed during is the principle cause of the rapid, regrowth almost always occurred. the period of prophylaxis had never uncontrolled growth of Burkitt lym- Radiotherapy was not then avail- previously been seen. In addition, it phoma cells. able in equatorial Africa (even now, was found that there were defects in Overall, the evidence suggests that there are very few radiotherapy facilities in this region), but by the late 1950s a number of chemothera- 1964-1976 1977-1982 1983-1987 peutic agents had become avail- able and several were known to Cases (male and female, all ages) 85 15 41 be particularly active in childhood ALL. It was clearly of considerable Table 1. Cases of Burkitt lymphoma recorded in the North Mara District of Tanzania in interest to know whether Burkitt’s three sequential time periods. Chloroquine prophylaxis was given in the middle period. lymphoma responded to chemo- 6 President’s message

therapy. Joseph Burchenal, a pio- neer chemotherapist working at the (then) Sloan-Kettering Institute for Cancer Research in New York, visited Burkitt in Uganda in 1960 and persuaded him to administer methotrexate – one of the drugs Burchenal had been working on in the context of ALL – to two children with Burkitt lymphoma. In both cases, a single dose induced dra- matic tumor regression. This experi- ence encouraged Burkitt to try other drugs, including cyclophosphamide. Subsequently, investigators in Africa, including Burkitt in Uganda, Clifford in Kenya, and Ngu in Nigeria, aided by western experts in chemothera- py, such as Oettgen and Burchenal Figure 5. Staff and patients of the Lymphoma Treatment Center in the Mulago Hospital from the Sloan-Kettering Institute complex in the early 1970’s towards the end of the period of collaboration between for Cancer Research in New York, Makerere University and the National Cancer Institute, USA. and David Galton from the Chester Beatty Institute in London, collabo- that recurrent disease, whether at survival rates in the region of 90%. rated in documenting the response the same or different sites, did not Burkitt lymphoma has provided a of Burkitt’s lymphoma to various che- occur after 11 months of remission, model for the understanding of the motherapeutic drugs, often donat- i.e., patients free of disease at this epidemiology, the molecular abnor- ed by the pharmaceutical industry. time could be considered cured. malities that induce tumors, and Although these studies were not These early results laid the founda- the treatment of other lymphomas. conducted in the disciplined way in tion for subsequent studies. Notable It is important to remember that which clinical trials are carried out among these were clinical trials the early phases of this work were today, and a significant fraction of conducted in Uganda as part of conducted in Africa where today, patients was lost to follow-up, they a cooperative agreement between unfortunately, the disease usually led to the clear demonstration that the National Cancer Institute of the results in death because of limited Burkitt’s lymphoma was responsive USA and the University of Makerere resources, even though most chil- to a broad range of chemotherapeu- in Kampala, Uganda (Figure 5). The dren in more developed countries tic agents. Burkitt, Clifford and Ngu emphasis eventually moved to drug are cured. This must be changed. In reported some astonishing apparent combinations based on the most addition, it is time to re-explore, cures with minimal therapy (several active drugs identified that led with modern techniques, some of years of disease-free survival after to a combination known as COM the questions that were raised some only one or two cycles of thera- (cyclophosphamide, vincristine and 50 years ago shortly after Burkitt’s py). In Burkitt’s series of 90 patients methotrexate), which is the founda- first description, as well as new with jaw tumors treated at Mulago tion of INCTR’s ongoing studies in questions that can be asked only in Hospital, Uganda, 74, or 82%, of the the treatment of African Burkitt lym- the light of modern understanding 90 patients had a good response. phoma (including AIDS-associated of the immune system and the Complete, durable remissions were Burkitt lymphoma). In the USA and molecular basis of tumor develop- observed with all three agents, Europe, much more intensive drug ment. The African lymphoma has although response depended upon combinations have since been devel- taught us much, but there is a great the tumor size. Burkitt also noted oped, which have resulted in overall deal still to be learned. 7 NETWORK

PROGRESS REPORT MY CHILD MATTERS (MCM) The My Child Matters program is a joint endeavor of UICC and sanofi-aventis PROGRAM – KENYA designed to provide support for institutions or non-governmental organizations working in resource-limited countries in the general area of childhood cancer. education for early detection and Funding is based on grant proposals submitted to a steering committee from treatment of burkitt lymphoma pre-selected countries – more are added each year – on any topic relevant to and determination of environmen- the care of children with cancer or support for their families. tal/familial factors associated Each project is assigned a mentor, usually a member of the steering committee to with its occurrence. advice on the conduct of the project and assists awardees to achieve their goals.

Background This unique program was initiated in 2005 and to date 33 grants have been awarded for a broad range of projects in 21 countries. Burkitt lymphoma (BL) is a cancer found mainly in children. It occurs sporadically throughout the world and in endemic pockets in the tropi- attitude and practice (KAP) concern- naire, potential risk factors for the cal belt of Africa. In Kenya the disease ing BL among communities living in disease. This report describes prog- is seen in Lake Victoria region and Nyanza and Western provinces of ress made since the project began the coastal lowlands. This study has Kenya and to educate rural commu- in April 2007. so far shown that about 100 cases nities as well as primary health care are reported annually in Western providers about signs and symptoms Activities and results Kenya, which is also known to have of the disease in order to encourage to date widespread poverty. As in other low patients to seek early treatment. This Ca s e r e c r u i t m e n t & resource countries, treatment of BL will ensure that health care providers c o m m u n i t y e d u c a t i o n is not readily available in Kenya and are both familiar with manifestations A total of 156 cases, comprising 81 outcomes tend to be poor. of the disease and know where to patients with BL and 75 controls, refer patients. In addition, we hope have, as at the time of this report, Objectives to identify any tendency for the dis- been registered on-study. They The primary objectives of this proj- ease to cluster in particular districts come from 17 districts in Nyanza ect are to determine knowledge, and to identify, through a question- and 8 districts in Western Province. Education about the clinical char- acteristics of the disease has been undertaken by the project team in 75 case neighborhoods in 25 districts in Nyanza and Western provinces. In each of the neighborhoods, selected because of a prior referral of a child with Burkitt lymphoma, 5 to 40 par- ticipants have attended the educa- tional sessions. These sessions have been accompanied by pre- and post- assessment of KAP. In this respect, training on data collection for 16 community health workers (CHWs) in Migori District was followed by baseline (pre-education) KAP assess- ment through the administration of 768 questionnaires in a population Contributors to My Child Matters program, Kenya. of about 335,252 in the last week of 8 report

November 2008 in five administra- tion with Kenya Medical Association information. There were five ethnic tive divisions. Similar training was (KMA) in April 08 was attended by groups among the patients; Luo provided to an additional 16 CHWs 50 doctors, including pediatricians, comprised 71%, followed by Luhya from Siaya and Bunyala Districts physicians, pharmacists, general at 19%. The average time between followed also in late November by practitioners and other professionals onset of symptoms and visit to first baseline KAP assessment through working in public and private health health facility was six days – an impor- the administration of 720 question- facilities in the region. A talk on BL tant point that suggests that delay is naires to 180,797 people spread in for all heads of health care facilities not predominantly related to seeking 12 locations. in Migori District was held on 9th December, 2008 at Migori and was Wo r k s h o p s & e d u c a t i o n a l t a l k s attended by 67 participants. This Education targeting health-workers was followed by two other CMEs in Nyanza and Western provinces in Nyamira and Homabay District and aimed at heightening aware- Hospitals (Photo) during the period ness on the need for early detec- 27th May, 2009 to 4th June, 2009 tion and treatment of BL has been and which were attended by 270 carried out through workshops and health workers. Posters, pamphlets, sensitization visits to health facili- information leaflets and guidelines ties. A workshop held in Kisumu on for referral of suspected cases of BL 1st April 2007 was facilitated by the were distributed to participants. Awareness training. project team and attended by 16 In order to maximize the impact of participants from Nyanza and nine the workshops and other project-relat- medical advice. However, the average from Western Province. A second ed activities, reporters from regional time between the date of admission workshop was held on 4th April, and national news media were invited or out-patient visit to the treatment 2008 and attended by 15 partici- to cover the events. This resulted in centre (NNPGH) was three weeks – a pants from Nyanza and 10 from activity reports being featured on relatively long time period for a very Western Province. Participants for national and local radio as well as tele- rapidly growing tumor, but consistent both workshops were invited on vision and newsprint media. with referral times for less aggressive the basis of their official positions Post-test data collection for KAP cancers. Given the relatively small in the health care service, which is assessment is scheduled for the number of cases registered so far, expected to further the objectives latter part of 2009 and early 2010 referral patterns and trends either of the project. through the administration of 768 geographical or temporal, have not Educational (sensitization) talks on questionnaires in the intervention yet emerged. project activities and distribution of area (Migori District). educational materials to health-care Challenges Encountered workers at their facilities is ongo- Epidemiological Findings A number of challenges were encoun- ing and has covered over 64 health A largely even distribution of BL tered in the course of the project, facilities to date. This has resulted cases in 24 districts of Nyanza and which led to modifications in size of in heightened awareness among Western Province has been observed, the anticipated target population to a core group of about 525 health with some seeming clustered cases which education was to have been workers of various cadres, including appearing in a few districts including provided. These included: clinicians spread across the study Migori, Rachuonyo and Siaya, which 1. Funding was insufficient to cover site. With sustained BL awareness, an make up 40% of all cases recruited the originally anticipated target increasing number of communities so far. Of the cases registered, a 2:1 populations and health care workers. is being reached and will eventually male-female ratio has been noted. Though initially planned to cover a be well informed. The age range is 2.5 – 14.0 years with sizable part of Nyanza and Western A continuing medical education a mean age of 6.8 years. Both obser- Provinces, the target population had (CME) talk organized in conjunc- vations are consistent with published to be limited to the BL “cluster” areas/ 9 NETWORK

The current investment made in THE UICC MY CHILD creation of awareness on BL among MATTERS PROJECT IN communities and health care workers TANZANIA will take some time before clear divi- dends are realized. The project start- INTRODUCTION ed on a promising note but encoun- The UICC and the sanofi-aventis tered challenges on the way, some Foundation, being aware that most entirely beyond our control. In spite children with cancer in developing of this, we have been able to meet countries, such as Tanzania, do not most of the goals and anticipate that enjoy the same high potential cure by the end of 2009, we will be able to The New Nyanza Provincial General Hospital. measure the impact of BL education by comparing cases reported prior to and over the study period. Data districts (i.e., from where 6 – 12 patients analysis of environmental/familial have been seen). Efforts are being factors will be conducted in addition made to bridge the budget short- to changes in patient condition (clini- fall and allow expansion of the target cal staging) variations at the time of population to that initially planned. admission over the study period. 2. Due to the political unrest expe- Ocean Road Cancer Institute (ORCI). rienced in Kenya during the early Acknowledgements part of 2008, project activities were We wish to thank UICC and sanofi- rates as children in technologically delayed for two months because aventis for establishing the My Child advanced countries, and mindful of of the country-wide restriction on Matters program and for the gener- the fact that very little money can movement and the unfavorable ous grant that has supported our make a difference in such resource- working environment. activities to date. Our thanks also poor countries, launched a unique 3. Accrual of cases over the last 12 go to Dr. Ian Magrath of INCTR for cancer program in 2005 designed months has been slow due to chal- his able mentorship of the project. to improve the care and support lenges encountered at New Nyanza Finally, we would like to acknowl- of children with cancer in develop- Provincial General Hospital, where edge the enthusiasm and assistance ing countries (My Child Matters). The most cases are referred. This has led provided by Dr. John Vulule, Director Director of the Ocean Road Cancer to a shift of case recruitment to hos- KEMRI – CVBCR Kisumu, among oth- Institute (ORCI) in Tanzania (Dr. Twalib pitals in BL cluster-like areas identi- ers, for their invaluable contribution Ngoma) submitted a proposal on fied from data collected so far. to the project so far. n Expanding Access to Treatment for Burkitt lymphoma (BL), the predom- Conclusion N.A. Othieno-Abinya, Aga Khan inant childhood cancer in Tanzania, Project oncologists are working University Hospital, Nairobi, Kenya which was selected for funding by closely with pediatricians and physi- the UICC MCM Steering Committee cians in the field on the application Project Team Members: with INCTR acting as mentor. of the INCTR BL treatment protocol, which is currently being used at Aga Prof. N.A. Othieno-Abinya (Director) STATEMENT OF THE PROBLEM Khan Hospital, Kisumu. The project Dr. G.Z. Mutuma The population of Tanzania, which Dr. G.W. Kiarie has applied for further funding from Dr. S.K. Gathere is in excess of 35 million people, the National Council for Science and Ms. A.R. Korir includes 10 million children less than Technology to enable us to sustain Mr. J.K. Omach 14 years of age – the peak age for BL ongoing project activities and also Dr. P. Wanzala unassociated with HIV infection. The Dr. A. Musibi provide drugs for our cases at select- Prof. L. Leoncini estimated average annual incidence ed district hospitals. of BL in Tanzania is 7 children per 10 report

100,000, such that it is projected that diagnosis, followed by long delays of approximately 700 new cases of BL in up to six months (often well beyond Tanzania occur every year. In 2005, it the life expectancy of an untreated was estimated that only some 145 of patient) before the issue of a report. these children were treated in vari- 4. Assumptions that no news is good ous hospitals scattered throughout news, in the context of poor patient the country, most of which did not follow-up – whereas the reverse is have expertise in the management almost certainly the case. of this rapidly progressive disease. There were no national guidelines In August 2004, with these challeng- for referral or treatment, and cyclo- es very much in mind, ORCI joined Child with bilateral jaw tumors before and after phosphamide, as a single agent, was a newly formed multiinstitutional treatment. the most commonly administered study group coordinated by INCTR to therapy in the district hospitals in work together on the treatment and lish an effective program, and the Tanzania. At ORCI, simple COM ther- characterization of BL in equatorial development of an effective triage apy (cyclophosphamide, vincristine Africa, and approximately a year later, system for patients with suspect- and methotrexate) without intrathe- submitted a proposal to the MCM ed Burkitt’s lymphoma – critically cal treatment (which is required to Steering Committee. important because of the known prevent spread to the central nervous higher incidence of this disease in system) – an approach used more THE MY CHILD MATTERS rural regions. than 30 years ago in Uganda, where PROJECT BL was discovered, was the standard The primary objective of the project Sp e c i f i c g o a l s treatment at ORCI. Limited survival is to expand effective care to as The goals identified for the project information was available because many children with BL as possible in the first year included: most patients were lost to follow-up in Tanzania, through a coordinated > To increase the number of BL chil- after therapy, and throughout the program of public and profession- dren in Tanzania who access treat- country there can be little doubt that al education, the identification of ment for BL from 30% to 50%. the majority of patients died. This appropriately distributed hospitals > To reduce the waiting time for was thought to be due to: capable of treating patients effec- biopsy results from six weeks to two 1. low awareness of BL as a read- tively and assisting them to estab- weeks. ily treatable form of cancer, leading to more than 80% of children with achievements BL presenting to hospital in very poor general condition and with At initiation End of year 1 End of Year 2 advanced disease, in which case of Project (November 2007) (November 2008) survival rates are very low. In most instances, because of their poor gen- Number of children 145 406 650 eral condition, it was felt that chil- diagnosed/per year dren would not be able to tolerate Average waiting time 6wks 2wks less than a week combination chemotherapy. for biopsy results 2. Poor referral systems and health infrastructure, with the result that Children reporting 20% 50% 60% for treatment in good more than 50% of BL patients would general condition not be able to access hospital ser- vices and would therefore receive no Follow-up rate 20% 85% 90% treatment at all. Number of centres 4 15 26 3. Delays in performing biopsies or treating BL countrywide fine needle aspirate procedures for 11 NETWORK

SWOT ANALYSIS – OPPORTUNITIES > Formation of nationwide BL net- work. > Further increasing BL awareness and childhood cancers in Tanzania. > Catalyzing government policy makers and the media to support the treatment of cancers in children – not just BL. > Creating a platform for intro- ducing pediatric oncology into the health agenda in Tanzania. > Undertaking additional research and collaboration.

SWOT ANALYSIS – THREATS > lack of funding after completion of the project. The project team during one of its meetings. > Services overwhelmed and stretched to limits due to increased > To increase the number of chil- track BL histology results, at least on awareness of BL. dren with BL who present to hospital behalf of ORCI. in good general condition and early > The production of information, LESSONS LEARNED disease from 20% to 40%. educational and communication Even in low-resource countries, with > To increase the cure rate of BL in materials (IEC) on BL. good planning and some funding, it Tanzania from 40% to 60%. > The distribution of posters and is possible to give good quality treat- > To increase the number of children leaflets to district hospitals. ment to more children and improve with BL who comply with follow-up > The employment of a “tracking their survival outcomes. appointments from 20% to 40%. officer” to trace children with BL If we can do well in treating BL, we who had not returned for a sched- can also do well in at least some Ac t i v i t i e s c o n d u c t e d t o d a t e uled appointment. other cancers. n > Campaigns involving meetings with various stakeholders (patholo- SWOT ANALYSIS – Twalib A. Ngoma, gists and pediatricians or other spe- PROJECT STRENGTHS ORCI and INCTR Tanzania, cialists treating patients; the general > Good Mentorship. Dar-es-Salaam, Tanzania public), training workshops and the > Dedicated focused project staff. media. The campaigns are designed > Networking with other groups to raise BL awareness in Tanzania treating children with BL. - targeted at the general public, > Guaranteed funding for planned MCM Project Team Members: health professionals, the families of activities. children with BL (who make excel- Dr. Twalib A. Ngoma (Director) lent advocates in their home vil- SWOT ANALYSIS – Dr. Margareth Ishengoma lage), and policy makers. PROJECT WEAKNESSES Dr. Jane Kaijage Mr. Seif Mkamba > The formation of BL Working Groups > Poor communication/infrastruc- Mr. Liana Kichungo and the facilitation of their meetings. ture. Ms. Devotha Kovaga > Employment of a pathologist > Inadequate and untrained staff in Sr. Beatrice Mushi to do FNAC of BL lesions and fast upcountry facilities. 12 case report

Methotrexate- who presented at the University tal malalignment. Other significant induced Skin necrosis College Hospital Ibadan with a findings were lower motor neuron in a child receiving month’s history of progressive pain- facial nerve palsy involving the right low-dose less bilateral jaw swelling. Five days half of the face and hepatomega- methotrexate before presentation, she developed ly. An abdominal ultrasound scan protrusion of both eyes, which revealed an enlarged liver contain- Summary soon resulted in bilateral loss of ing a hypoechoic mass; biopsy of Methotrexate is an antimetabo- vision. The illness was associated the right mandibular mass, showed lite used for treatment of cancer. with weight loss and no history of histological features consistent with Although the commonest complica- Burkitt lymphoma and ophthalmo- tions are myelosupression and oro- logic assessment revealed features intestinal mucositis, skin necrosis has of bilateral optic atrophy. Full blood been reported as a side effect. Most count at diagnosis revealed a haema- cases of skin necrosis have been tocrit of 34%, total white blood cell reported in persons receiving high count of 11,000/mm3 (neutrophils dose methotexate or with underly- 61%, lymphocytes 36%, monocytes ing skin diseases. A rare case of skin 3%) and a platelet count of 114,000/ necrosis in a child receiving treat- mm3. Serum electrolytes, urea, crea- ment for Burkitt lymphoma with a tinine, calcium, phosphate, uric acid drug combination including low- and liver function tests were within dose methotrexate is reported and normal limits. Specific treatment was the possible risk factors discussed. initiated using COM chemotherapy according to INCTR protocol 03-06C. Introduction This consisted of cyclophosphamide Methotrexate is an antimetabolite 1200mg/m2, vincristine 1.4 mg/m2 that inhibits utilization of folic acid and methotrexate 75mg/m2 all given by inhibiting dihydrofolate reductase intravenously on day 1. She was also a key enzyme in the generation of given intrathecal methotrexate, 12 reduced folates crucial for the bio- mg, on days 1 and 8 respectively and synthesis of purines and thymidylic intrathecal cytarabine, 50mg, on day acid.1 It has been used effectively, 4. Cerebrospinal fluid cytology was most often in drug combinations, negative for malignant cells. Four for a number of neoplasms such days before commencement of che- as acute lymphoblastic leukaemia, motherapy she was started on intra- non-Hodgkin lymphoma and osteo- venous ciprofloxacin and amikacin sarcoma.2 The primary toxic effects for presumed septicaemia and had of methotrexate are myelosuppres- Pictures showing necrotic lesions become afebrile prior to the initia- son and orointestinal mucositis, described in the text. tion of chemotherapy. which occur 5-14 days after the drug On day 13 of the first cycle of che- has been administered.2 We report swelling of any other part of the motherapy, necrotic patches were the case of a child treated for Burkitt body. On examination, the patient observed on her labia majora, the lymphoma with a regimen contain- looked acutely ill, was mildly pale skin over the lumpar puncture site, ing methotrexate who developed and had obvious bilateral proptosis and the medial aspect of the infraor- skin necrosis within 14 days of com- with no light perception in either bital skin of both eyes adjacent to mencement of treatment. eye. There were bilateral, non-tender the medial epicanthi. There was also swellings of the right mandible with associated bilateral conjuctivitis. A Case Report intra oral extension, and bilateral clinical diagnosis of methotrexate The patient was a four-year-old girl swelling of both maxillae with den- toxicity was made and chemother- 13 NETWORK

apy was stopped. Full blood count trexate therapy in patients with pso- ate, even though renal function tests performed on the day of appear- riasis. In addition to the rare occur- remained normal in our patient.2 ance of the lesions revealed a hae- rence of a toxic epidermal necrolysis- matocrit of 21% (for which she was like condition, two different patterns Conclusion transfused with blood) and total of ulcerations have been described in There is need for clinicians to care- WBC of 700/mm3 (Neutrophils 78%, these patients: one type in psoriatic fully monitor renal function and con- lymphocytes 16%, monocytes 6%) plaques and the other type in skin sider drug interactions while treat- and platelet count of 136,000/mm3. uninvolved by psoriasis but affect- ing children with methotrexate even Over time, the necrotic patches ed by other cutaneous pathology, when there are no obvious risk fac- sloughed off leaving full thickness such as stasis dermatitis or scars.4 tors for toxicity. In African children ulcers at all affected sites and the Cutaneous ulceration has also been on treatment for Burkitt lymphoma, ulcers adjacent to the medial epi- reported to complicate methotrexate cytarabine may be used successfully canthi coalesced over the bridge of usage in patients with erythrodermic to substitute for methotrexate in the nose. The lesions were managed mycosis fungoides.5 cases of toxicity.8 n by dressings and healing was almost Previous reports on methotrexate complete three weeks after. After –induced skin necrosis have indi- Biobele Brown, Ibadan University, the Haemogram had returned to cated that it is dose dependent Ibadan, Nigeria normal, chemotherapy was recom- and therefore observed usually in menced with methotrexate replaced patients on high dose MTX or chang- References with Cytarabine. Child remained free ing drug dosages in patients on pro- 1) Blakley RL. Eukaryotic dihydrofolate of any toxic effect of the new regi- longed methotrexate use. Others reductase. Adv Enzymol Relat Areas Mol Biol 1995; 70:23-102. men on day 7. have implicated underlying skin dis- 2) Adamson PC, Balis FM, Berg S, Blaney ease as a risk factor; methotrexate- SM. General Principles of Chemotherapy. In: Discussion induced cutaneous necrosis is said Pizzo PA, Poplack DG, editors. Principles and There are reports of cutaneous tox- to be rare in patients without under- Practice of Pediatric Oncology. Philadelphia: icity of methotrexate but most of lying skin disease.5, 6 Lippincott, 2006. 290-365. them have been in adults. Tazi et al3 Our patient does not seem to fit 3) Tazi I, Madani A, Zafad S, Harif M, Quessar A, Benchekroun S. reported a case of Toxic epidermal into any the risk groups described Methotrexate-induced toxic epidermal necrolysis (TEN) in a nine-year-old above since the dose of metho- necrolysis: A case report. International child treated for Burkitt lymphoma trexate was not high and there Journal of Medicine and Medical Science Vol. with a regimen that included high was no underlying skin disease. 1(4), pp. 099-101, 2009. dose methotrexate. Our patient also Methotrexate-induced necrosis has 4) Lawrence C, Dahl M. Two patterns of had Burkitt lymphoma but received been associated with concomitant skin ulceration induced by methotrexate in patients with psoriasis. J Am Acad Dermatol. low dose methotrexate and had a less administration of drugs that inter- 1984;11:1059–65. extensive but full thickness skin necro- fere with methotrexate excretion by 5) Breneman DL, Storer TJ, Breneman JC, sis. Toxic epidermal necrolysis (TEN) is competing for renal tubular secre- Mutasim DF. Methotrexate-induced cutane- a known cutaneous complication of tion such as ciprofloxacin.2 Dalle et al ous ulceration in patients with erythroder- methotrexate; it is a life-threatening reported cases of methotrexate tox- mic mycosis fungoides. Ther Clin Risk Manag disease characterized by extensive icity following administration of cip- 2008; 4: 1135–1141. 6) Ben-Amitai D, Hodak E, David M. Cutaneous destruction of the epidermis. rofloxacin but their patients received ulceration: An unusual sign of methotrexate Although the ulcers that followed high dose methotrexate unlike our toxicity – first report in a patient without pso- necrosis in our patient were so severe patient.7 Therefore, although cipro- riasis. Ann Pharmacother. 1998;32:651–3. and disfiguring, particularly those of floxacin might have predisposed to 7) Dalle JH, Auvrinon A, Vassal G, Leverger the face, the characteristics of the the reaction seen in our patient, the G. Interaction between methotrexate and ciprofloxacin. J Pediatr Hematol Oncol lesions and non-extensive distribu- chances are low. Concomitant use 2002;24:321-322. tion make TEN an unlikely diagnosis. of Amikacin in our patient may also 8) Olweny CL, Nkrumah FK. Treatment of Cutaneous ulceration has been have been a contributory factor in Burkitt Lymphoma: the African experience. reported as a side effect of metho- altering the clearance of methotrex- IARC Sci Publ 1985; 60:375-82. 14 report

NNCTR/INCTR Nepal: presented here. The activities are dis- cussed included patient evaluation, The Cancer Program cussed under the following headings: general nursing oncology, cancer in Nepal - A Brief surgery, radiotherapy and cancer Progress Report 1. Cancer education. chemotherapy. In the course of the January - October 2008 workshop, nurses were acquainted 2. Cervical and breast cancer with breast self-examination, cervical screening and prevention. Introduction cancer screening by Pap smear and Although the percentage of infec- 3. Cervical cancer vaccine program. VIA/VILI, lung cancer and smoking, tious diseases is decreasing in Nepal, gastrointestinal cancer, psychosocial 4. Palliative care program. there has been an increase in non- aspects of care, pain management communicable diseases, including 5. Anticipated outcomes. and palliative care. Field visits were heart disease, cancer, diabetes and asthma, which account for an increas- ing proportion of deaths. The num- ber of new cancer patients per year in Nepal is estimated to be 45,000, and this number is likely to increase. With this in mind, NNCTR/INCTR Nepal, with the support extended by INCTR, and in concert with local government and non-governmental organizations (NGOs), hospitals and communities, has developed sev- eral programs related to prevention, treatment and research in the field of cancer in several districts in Nepal. More than 121,722 people have benefited from the public aware- ness program conducted by Nepalese participants in a cancer awareness-raising session. NNCTR/INCTR Nepal in the last six years. During the same period 1. Cancer Education arranged to some centers where more than 10,250 healthy married 1a. workshop on nursing relevant activities are ongoing, and women (between 30 and 60 years oncology – an update nurses' knowledge was tested prior of age) have been screened for (6th jan - 11th jan 2008) to and after the workshop. cervical cancer and provided treat- Venue: Nursing in-Service Education ment when necessary – including Room, Tribhuvan University Teaching 1b. training the trainers for infectious conditions identified Hospital (TUTH) - Participants: 26 (tTt) programs during screening. Nurses from five Hospitals. (20th to 24th april 2008) More than 1,640 health workers A one-week continuing education Venue: Chetana Kendra Training have participated in the Palliative program in all aspects of the nurs- Centre Budol, Banepa - Participants: Care Sensitization Program. 355 peo- ing care of patients with cancer was 20 persons participated in the training ple, including social workers, techni- jointly organized by NNCTR/INCTR from 13 non-governmental organiza- cians and other trainers have been Nepal and TUTH with the support tions which coordinate their programs given training appropriate to their of INCTR and the Rural Women’s with the NNCTR/INCTR Nepal's Cancer role in ongoing programs. Development and Unity Centre, Education program. The progress report of NNCTR and Nepal. Dr. Yogendra Prasad Singh A five-day TTT program was planned activities for the period of of TUTH was the principal coordi- conducted for persons from January 2008 to October 2008 are nator of the workshop. Topics dis- seven districts in Nepal (Kaski, 15 NETWORK

Makawanpur, Mahottari, Sarlahi, among local governments, NGOs among them and they in turn edu- Kabhre, Kathmandu and Lalitpur). and hospitals working on cancer pre- cated 82 handicapped (deaf) people vention and early detection at the for cancer education in two districts. 1c. cancer education tTt refresher community level in several districts The Federation of Handicapped training (25th april 2008) of Nepal. A network comprising 13 Association (deaf) of Nepal also col- Venue: Chetana Kendra Training NGO's has already been formed and laborated in the cancer education Center Budol, Banepa - Participants: cancer education programs are in programs. 25 cancer educators who are Cancer operation in seven districts. Education program Local Trainers. The main objective of the meet- 2. Cervical and Breast A one-day refresher course was ing was to discuss the mobilization Cancer Screening and held for cancer educators from five of local resources and facilities at Prevention districts. The achievements of the minimum cost. A review was pre- 2a. australian embassy, nepal – program to date and planned chang- sented of progress of NNCTR since the direct aid program (dap)/ es were discussed and the important its establishment to the present, and small grant program role of the educators emphasized. future plans relating to its collabora- In 2007, NNCTR/INCTR Nepal sub- NNCTR resource persons Dr. Aarati tive activities with the participating mitted a proposal to the Australian Shah, Dr. Y.P. Singh and Dr. Sudip NGOs were discussed. Embassy for a small grant to provide Shrestha provided the training, orga- access to 1,500 women for cervical nized by NNCTR/INCTR Nepal. 1e. school and community level cancer prevention, screening, treat- cancer education program ment and follow-up. The Embassy 1d. district level coordination During the years of NNCTR/INCTR’s accepted the proposal and signed meeting and networking operations, more than 16,000 indi- an agreement with NNCTR/INCTR ( 25th april 2008) viduals from 95 schools and com- Nepal on October 29, 2007. Venue: Chetana Kendra Training munities have benefited from its Up to the present, under this pro- Center Budol, Banepa - Participants: school- and community-based can- gram, cervical cancer awareness 35 representatives of relevant district cer education programs. Concrete programs have been organized in organizations, local cancer educators/ achievements can be demonstrat- 26 centers. More than 2060 women trainees and doctors. ed and activities have significantly have been screened for cervical can- NNCTR/INCTR Nepal held a meet- expanded during this period. There cer; 45% were found to have a genital ing designed to improve networking were four handicapped trainees infections and 20% had uterine pro- lepse of varying degrees, probably 40,000 resulting from multiple pregnancies. 35,000 Patients with cancer were referred 30,000 for follow-up investigations. 25,000 20,000 2b. treatment for women with 15,000 uterine prolapse 10,000 Surgery for prolapse is rather expen- sive for many women. Accordingly, 5,000 NNCTR/INCTR Nepal developed 0 an understanding with Scheer 2002 2003 2004 2005 2006 2007 2008 Memorial Hospital (SM), Banepa, to provide less expensive treatment, Male 1,985 4,103 5,158 7,718 10,685 11,955 7,463 which the majority of women take Female 2,193 5,197 6,824 10,429 17,607 21,868 8,620 advantage of. In addition the Rural Total 4,178 9,300 11,982 18,147 28,292 33,823 16,083 Women’s Development and Unity Center, Nepal has agreed to provide Cancer education program from (month) 2002 to early 2008. funds for the treatment of 52 cases 16 report

of prolapse. Although not cancer, 12000 many women benefit from the inex- pensive care provided for this prob- 10000 lem and NNCTR/INCTR Nepal con- 8000 tinues to seek additional funding for 6000 such services. 4000

2c. cervical and breast cancer 2000 technical skill transfer workshop 0 (25th feb to 2nd march 2008)

Venue: Tribhuvan University Teaching 2002-2003 2004-2005 2006 2007-2008 Total Hospital, Kathmandu (TUTH) - Total Screened Women 5116 2126 943 2063 10,248 Participants: 25 senior nurses from various institutions. Total Infection 754 577 237 772 2,340

A seven-day refresher course on Total Biopsy 123 72 24 27 246 Cervical and Breast Cancer Screening Total C IN 28 37 6 14 85 technical skills was jointly organized under NNCTR/INCTR Nepal and Invasive Cancer 5 1 6 TUTH with the support of INCTR and the Rural Women’s Development Cervical cancer screening and treatment data. and Unity Centre, Nepal. The course, again, was coordinated by Dr. tors and seven nurses were trained. week training facility for two doctors Yogendra Prasad Singh of TUTH. During the practical workshops 39 every year for three years, beginning patients with positive cases select- in 2007. Four Nepalese doctors have 2d. technical skill transfer ed from different primary screen- already completed the six-week workshop on cervical cancer ing camps were referred for further training program in the UK. The last screening, prevention and investigation and treatment by col- group is expected to leave for UK treatment for medical doctors poscopy and cryotherapy. The prin- early next year. and nurses cipal international consultants from Venue: Eye Centre, Tribhuvan University Phase Worldwide UK, (an INGO) were 3. Cervical cancer vaccine Teaching Hospital, Kathmandu - obstetricians and gynaecologists Dr. program Participants: 71 health workers, 14 David Nunns, Dr. Rafiat Adekunle, Dr. 3a. cooperation with australian doctors and seven nurses. Sotirios Vimplis and Dr. Gerda Pohl, cervical cancer foundation (accf) NNCTR/INCTR Nepal, TUTH and all from UK. The national faculty was In 2007, the australian cervical can- Phase Worldwide, UK, jointly orga- comprised of Dr. Aarati Shah, Dr. cer foundation (accf) was formally nized a four-day technical skills Sheela Verma, Dr. Raj Shree Jha and established in Brisbane, Australia. The transfer program from 24th to 29th Dr. Meeta Singh. Dr. Meeta of TUTH main goal of ACCF is to raise funds in June 2008 at four different centres was the principal coordinator. cash or in kind for supplying Human – TU Teaching Hospital, Chhatrapati The workshop was very success- Papilloma Virus (HPV) vaccines for Free Clinic, the Maternity Hospital, ful; all of the participating Nepalese protecting women from uterine cer- Kathmandu and Scheer Memorial doctors and nurses had a very good vical cancer. Michael T. Wille is the Hospital, Banepa. Support was pro- opportunity to share skills and Executive Chairman of ACCF and Dr. vided by INCTR and the Nepal Health knowledge with the International Surendra Bade Shrestha, President Tax Fund, Ministry of Health, Nepal. consultants, and doctors from other of NNCTR/INCTR Nepal has been On the first day, more than 71 hospitals have shown a keen inter- appointed Director of the Nepalese health workers took part in the the- est in joining such workshops in program. ory class. On the following three the future. Phase Worldwide UK has NNCTR/INCTR Nepal and ACCF days of practical workshops, 14 doc- agreed to provide support for a six- signed a Memorandum of 17 NETWORK

Understanding in 2007, according to the HPV vaccine, Gardasil, and the iii. On October 4th, a one-day which NNCTR/INCTR Nepal would ACCF Director, Mrs. Linda Lavarch, field trip was organized with the be the sole administering agency former Member of the Queensland entire ACCF team and officials of for the vaccine in Nepal and would Parliament, Australia, visited Nepal NNCTR/INCTR Nepal to the Village mobilize necessary funds for all local for a five-day period. The main pur- Development Committee (VDC) in expenses for the management of pose of the visit was to share the Shankhu village. The purpose of the the program. ACCF has set a goal team’s knowledge and experience trip was to administer Gardasil to 80 of supplying up to 10,000 courses with Nepalese medical professionals schoolgirls in grades 7, 8 and 9 in the of HPV vaccine every year, gradu- and other stakeholders of the HPV Shankheswore Malaxmi Vidhyalaya, ally increasing from 100 courses in vaccine in Nepal. Many Nepalese Shankhu, and Kabhre districts. Prof. March 2008. NNCTR/INCTR Nepal doctors took a keen interest in the Frazer also briefed the press and the community about the importance of the vaccine. Although it was a school holiday, an impressive number of local people and students came to receive the vaccine.

This was the second visit of the ACCF President and the first for the other board directors. On their first visit, the ACCF team had brought with them 300 doses of Gardasil, suffi- cient for 100 girls, and on the second, 3000 doses, sufficient for 1000 girls. Many Nepalese people and medical professionals had an opportunity to learn about the HPV vaccine from Prof. Frazer, and knowledge of this Visitors from ACCF at a welcoming ceremony. Left, Mr. Shama, high school principal. advance was also widely dissemi- Right, Dr. Bade Shrestha, President of NNCTR/INCTR Nepal. nated by the media. ACCF President Michael Wille and Prof. Ian Frazer has received clearance from the interactive program. The highlights have given assurances that they will Drug Administration Department of the program were: be bringing in more and more vac- to use the vaccine in Nepal. The i. On October 2nd, 2008, Prof. Ian cine to Nepal in order to vaccinate program was formally launched in Frazer gave a presentation on HPV more schoolgirls with the intent March 2008 in Nepal at an event vaccines at TUTH. 105 medical pro- of saving the lives of hundreds of hosted by the Australian Embassy. fessionals attended. women from cervical cancer. This will To date, 100 female students of the ii. On October 3rd, at the premises of be no small task – there are estimat- 12-14 age group from five schools Australian Embassy, Prof. Ian Frazer ed to be approximately 140,000 girls have been vaccinated. held a “meet the press” program. aged 11-14 in Nepal. The ACCF team He briefed the press about HPV vac- Nepal program was organized and 3b. visit by a team from cine. The same day he gave another managed by NNCTR/INCTR Nepal the australian cervical cancer presentation at an event held at with support from the Australian foundation (accf) Hotel Radisson. Many medical pro- Embassy, the Nepal Oncology A six-member ACCF team, includ- fessionals from different hospitals Society, TU Teaching Hospital and ing its Chairman, Michael T. Wille, and medical institutions attended. the ACCF from Brisbane, Australia. A Deputy Chairman, Lenore Wille, A lively question and answer ses- total of 184 girls have been given the Prof. Ian Frazer, the inventor of sion followed. HPV vaccine to date. 18 report

4. Palliative Care Program objectives of the 4a. a two-day international workshop were: palliative care workshop in nepal 1) To discuss the supported by inctr and uicc challenges of (1st - 2nd feb. 2008) developing pallia- Venue: Staff Collage, Jawalakhel, tive care in Nepal. Lalitpur - Participants 1st Feb: 30 (25 2) To acquire an doctors & five government officials). understanding of Participants 2nd Feb: 38 (nurses and the challenges in social workers from 12 hospitals, four developing acces- government offices and 11 social orga- sible and afford- nizations). able palliative care NNCTR/INCTR Nepal orga- in Nepal. nized a two-day workshop on Dr. Yogendra Prasad Singh teaching at NISH College. “The Challenges of Palliative Care The focus of this Development in Nepal,” which was workshop was to provide informa- contribute to the development of aimed at developing and strength- tion about the goals and methods an efficient palliative care system in ening palliative care in Nepal. The used in the delivery of palliative care Nepal in both service and educa- first day was devoted to the educa- as well as teaching methods for vari- tional sectors and to increased public tion of doctors, the second to nurses. ous health care providers. Special awareness for the need of palliative The workshop was inaugurated by attention was given to the need for care for cancer and non-malignant Dr. Bishnu Prasad Pandit, Secretary a multidisciplinary approach. diseases. The goal is to ensure that of Health and Population Ministry of all those who need palliative care the Nepali Government. Dr. Surendra 5. Anticipated outcomes receive it. The workshop also indi- Bahadur Bade Shrestha, President The organizers anticipate two major cates the need for well-trained and of NNCTR/INCTR Nepal, welcomed outcomes of this workshop, as fol- self-motivated health care provid- the international and national par- lows: ers. Short term palliative care train- ticipants and made a brief presenta- 1. Immediate impact: ing (non-credit courses) will soon tion in which he described the work In the course of the workshop, efforts begin in the Nepal Institute of Health of NNCTR/INCTR Nepal in cancer were made to explore the present Science (NIHS) in a joint venture with prevention, treatment and research, status and the urgent need for pal- NNCTR/INCTR Nepal to order to rap- and its involvement in the develop- liative care in Nepal. It sensitized the idly develop human resources for pal- ment of palliative care in Nepal. The policymakers and various stakehold- liative care, at least at a basic level. ers to the need for the formulation of Acknowledgement a national policy NNCTR/INCTR Nepal is grateful for as an urgent prior- support from its parent organiza- ity, and the need tion, INCTR, and also from ACCF, the to base the policy Australian Embassy – DAP Program on a thorough Team, Scheer Memorial Hospital and understanding of other hospitals, NGOs and individu- the present situa- als who have supported or partici- tion and the chal- pated in the development and oper- lenges faced in ation of these programs. n moving forward. 2. Long Term Surendra B. Bade Shrestha, Impact: NNCTR/INCTR Nepal, School girls after receiving HPV vaccine. This workshop will Banepa, Nepal 19 NETWORK

NCI’s Office of the sponsorship of participants in the International Affairs NCI’s Summer Curriculum in Cancer Addresses Global Prevention. Courses on Principles Burden of Cancer of Cancer Prevention and Molecular Prevention are offered in Bethesda The U.S. National Cancer Institute each July and August. Although the (NCI) is the largest cancer research Summer Curriculum began as a U.S. entity in the world. Positioned within domestic activity, over the years it the U.S. Government’s Department has become progressively interna- of Health and Human Services and tional with more than half of the par- representing the largest institute of ticipants in the last two years being the National Institutes of Health, NCI from outside the U.S. managed a budget of $4.8 billion This international representation in 2008. NCI has both an Intramural has added richness to the courses Research Program with laboratories with an “international day” becoming in Bethesda and Frederick, Maryland, a feature. On this day, participants and an Extramural Research Program from around the world share the situ- that funds cancer research at nearly ation regarding cancer prevention in 650 universities, hospitals and other Dr. Joe Harford at INCTR's Cancer Control their home countries. OIA has been sites in the U.S. and abroad. The Meeting. supporting the attendance of partici- scope of NCI-funded cancer research pants from low- and middle-income includes basic science, epidemiol- engagement. OIA seeks to track NCI's countries for a number of years. In ogy and clinical research that spans international activities and manages the last two years, OIA has partnered the cancer continuum from preven- certain projects. OIA has been direct- with the International Atomic Energy tion to end-of-life care. ed since 2002 by Dr. Joe Harford. Agency (IAEA) in bringing partici- The U.S. Congress passed the "Cancer does not recognize geopo- pants to the Summer Curriculum. National Cancer Act of 1971. This and litical borders, and already more than The IAEA’s Programme of Action for subsequent legislation specifically 90% of cancer cases and deaths are Cancer Therapy nominates partici- emphasize an international presence outside the U.S,” notes Dr. Harford. pants who are then reviewed and in directing that NCI supports: “For the NCI, the international bur- supported by NCI through OIA. a) research in the cancer field outside den of cancer not only represents the United States by highly qualified an opportunity to assist, by sharing foreign nationals; our existing knowledge in helping Among his many duties, b) collaborative research involving to build capacity for cancer research Dr. Joe Harford serves on the American and foreign participants; and care, but it also provides a broad executive steering committee on c) the training of American scientists range of opportunities to add to that NCI’s Breast Health Global Initiative, abroad and foreign scientists in the base of knowledge through collab- which endeavors to develop United States. orative research." economic-based, culturally appropriate This legislative language reflects the OIA seeks to build capacity in can- guidelines for developing countries. idea that cancer research undertaken cer research where that is currently anywhere can benefit people every- lacking and, in this regard, shares the where; a position that underpins NCI’s vision of INCTR. Indeed, OIA is a major Forty-seven participants from 22 international activities. NCI's Office of supporter of INCTR activities through countries have been thus supported International Affairs (OIA) is adminis- core funding of the organization and over the past two years. OIA has also tratively located within the office of additional funding for selected edu- provided scholarships to 37 other NCI Director, Dr. John Niederhuber, cational and training activities. participants from low- and middle- who has expressed his strong per- OIA’s training activities extend income countries outside the IAEA col- sonal support for NCI's international around the globe. One example is laboration. In addition to the Summer 20 forum

to enhance the status of cancer care Each year, the NCI supports nearly 1,000 international health professionals who and cancer research in the region come to the Bethesda campus for four-year post-doctoral training or shorter-term and unwavering efforts to support positions. Nearly half represent four countries: Japan, China, Korea and India. needed infrastructure and create opportunities in cancer education, training and capacity building to Curriculum in Cancer Prevention, OIA dictions. In 2006, NCI published a help cancer patients and their fami- assists individual scientists with short- monograph comparing cancer inci- lies throughout the Arab world.” to medium-term visits to the U.S. in dence in Cyprus, Egypt, Israel, Jordan Dr. Harford serves as the NCI liaison the context of collaborative research and the U.S. SEER registries. to a number of global organizations, involving NCI intramural scientists or A second MECC project involves pal- including the International Agency NCI grantees. liative care. Arguably, says Dr. Harford, for Research on Cancer (IARC) and the OIA also provides support for the- the three most important features of International Union Against Cancer matic workshops and conferences cancer in the Middle East are “late (UICC). He has also been instrumen- held around the world. The INCTR’s presentation, late presentation and tal in the encouragement of U.S.- own meetings represent a major com- late presentation.” When cancer is based entities to extend their reach mitment on the part of OIA/NCI via detected late, curability drops dramat- around the globe. He serves on the the provision of sponsorship of partici- ically, and often palliation is the only International Affairs Committee of pants from low- and middle-income remaining option. Too many people the American Association for Cancer countries. Another recurring meeting experience poor-quality deaths with Research (AACR) and works closely that has had OIA support for many pain and other symptoms going with colleagues from the American years is that of the African Organization unrelieved. The MECC palliative care Society for Clinical Oncology (ASCO), for Research and Training in Cancer project involves training and equip- the Oncology Nursing Society (ONS) (AORTIC). OIA has also participated in ping of health care workers from the and the American Cancer Society numerous thematic workshops that MECC membership in the principles (ACS), to name but a few. overlap with the interests of INCTR, and practice of palliative care. Among including, for example, two that took other resources, the INCTR Palliative place in 2008 - one on breast cancer Care Handbook is utilized in MECC- NCI’s support of INCTR is a means in Morocco and another on Burkitt's sponsored training activities. by which the agency can reach lymphoma in Uganda. Research on palliative care is also researchers around the world. OIA also engages in projects that being encouraged. In 2008, NCI pub- Within NCI’s mission, INCTR have been termed “health diploma- lished an inventory of palliative care is a conduit to build capacity cy.” For example, the Middle East services in the region represented by for cancer research in resource- Cancer Consortium (MECC) has as MECC that was commissioned by OIA constrained settings. its members Cyprus, Egypt, Israel, and conducted by the Observatory Jordan, Turkey and the Palestinian on End-of-Life Care of Lancaster, Authority - countries with a history UK. Both the MECC monograph on “It is clear that the world has got- of conflict. Launched in 1996 with cancer incidence data and the MECC ten smaller in terms of our ability assistance from the NCI, MECC has monograph on palliative care can be to communicate and to do business sought over this 12-year period to seen along with other MECC-related globally,” says Dr. Harford. “However, bring together cancer researchers publications on the Web site main- dealing with the burden of cancer and health care workers from these tained by OIA (http://www.mecc. that exists now and that is growing countries to work together for the cancer.gov/publications.html#pc). is a very big job. No single entity is good of all people in the region. The In 2007, the Arab Medical Association equipped to address all of the issues, flagship project of MECC is a joint Against Cancer recognized Dr. Harford and so cooperation is not optional cancer registry project that supports for his role in MECC as well as other but essential.” n population-based cancer registries work in the Arab world. The award in each of the membership juris- cited his “significant contributions Marcia Landskroener for INCTR 21 NETWORK

ImPACT Follow-up Follow-up Meeting Wilms’ tumor. The group also decid- Mission to Yemen on Lymphomas in ed to develop a questionnaire relat- Dr. Stuart Brown, Director of INCTR’s Developing Countries ing to the reasons for late presenta- Palliative Care Program, PAX, par- During the European Association tion of NPC and to examine consan- ticipated in a ImPACT follow-up mis- for Haematopathology meeting guinity as a risk factor for NPC. In sion to Yemen from June 23-25th that took place in Bordeaux from the last two days of the meeting, to discuss progress made in devel- September 20-25th further discus- participants broke up into small oping a palliative care program as sions were held in follow up to the groups to write sections of the sup- part of the overall cancer control Lugano Workshop on lymphomas portive care handbook. This is now plan for Yemen. Yemen is one of in developing countries (see the last some 70% complete. The meet- the six model countries selected edition of NETWORK). The discus- ing was supported by the Office of by the International Atomic Energy sion topics included opportunities International Affairs (OIA), NCI (NPC Agency’s (IAEA) Program of Action for epidemiological studies and the component) and by Eli Lilly. n against Cancer (PACT). n need for training and education of pathologists in developing coun- INCTR Breast Cancer Challenge Fund tries. An additional meeting was Review Steering Trustee’s Meeting held in Paris on October 10th. n Committee The second meeting of the new This committee met by teleconfer- Board of Trustee’s of the Challenge 11th International ence on November 10th to discuss Fund, a charity registered in the UK Conference on the creation of a bibliography of that will work closely with INCTR, Malignancies in AIDS breast cancer studies conducted in was held on June 26th in London. Dr. Magrath attended a meeting developing countries. This project is Dr. Max Parkin, a well-known epide- on AIDS-related malignancies in sponsored by OIA. n miologist, was elected Chairman of Bethesda (October 6-7th) to present the Board. Discussions were primar- a lecture on Burkitt lymphoma on Train the Trainers ily focused on the objectives of the the 50th anniversary of Burkitt’s first Workshop Trust, the present financial situation paper, and also attended a meet- INCTR’s French branch, AMCC held and fund raising. Mr Niblett, one of ing of the USA AIDS Malignancy a “train the trainers” workshop in the trustees, presented a check for Consortium (AMC) in order to initi- Bobo-Dioulasso, Burkina Fasso from £2000 to be used for the treatment ate discussions on the possibility of 11-15th November on palliative care. of Burkitt lymphoma in Africa – one collaboration between INCTR and 45 doctors and head nurses from of INCTR’s ongoing projects. n AMC. n five African countries attended the workshop. n WHO IAEA Pediatric Oncology Collaboration Meeting Joint EMRO-INCTR-ALSC INCTR was invited to participate in Some 35 pediatric oncologists from A meeting in Cairo took place from a meeting that included represen- 12 countries assembled in Brussels 15-18th December to launch the tation from WHO, IAEA PACT, the from 3-6th November to discuss WHO Eastern-Mediterranean region NCI and the International Agency for three topics: an international treat- cancer control strategy (which INCTR Research on Cancer (IARC). The meet- ment study on Wilms’ tumor, col- assisted in developing). Two days of ing, which took place on 2-4th July, at laborative studies in childhood the meeting were devoted to a work- WHO headquarters in Geneva, was nasopharyngeal cancer (NPC) and shop on breast cancer control (breast primarily directed towards discus- the further development of an cancer is the commonest malignancy sion of a joint WHO IAEA program INCTR Handbook on support- in the region) which INCTR orga- on cancer control. INCTR was invited ive care for children undergoing nized. The report of the workshop is to attend since it works with both cancer therapy. It was agreed that available on INCTR’s Cancer Control WHO and PACT on cancer control Dr. Bakhshi from AIIMS, New Delhi, “wiki” site. The workshop was par- projects. n would prepare a draft protocol for tially supported by OIA. n 22 NEWS/partner profile

Comité Héraultais At its helm, until 2007, was one of the people of France about the dan- de la Ligue Contre the country’s most experienced can- gers of tobacco use and the impor- le Cancer cer experts. Henri Pujol, the president tance of cancer screening — steps of the National Federation Against that improve patient outcomes. The French League Against Cancer, Cancer from 1983 to 1997 and presi- While the French government a charitable organization founded dent of the League Against Cancer funds screening programs for after World War I, is a major play- from 1998-2007, now directs the breast, lung and colo-rectal cancers, er in the fight against cancer. The League’s Hérault Committee locat- there is no standardized screening League’s goal is to come to the aid ed within Languedoc Roussillon, a program in place for prostate can- winemaking region in the south of cer — even though Dr. Pujol notes France. that the incidence of prostate can- Even in this lovely part of the world, cer now surpasses all other types of cancer incidence is on the rise. Since cancer in France. 2002, cancer has become the primary The League is in a good position cause of death in France, usurping to mount its own public awareness that dubious distinction from coro- campaign about prostate cancer, nary heart disease. “More and more since it enjoys excellent relation- people are cured, but at the same ships with hospitals and cancer time more and more people develop centers throughout the country. cancer because of the aging popula- The organization distributes sev- tion,” notes Dr. Pujol. “Today, one eral publications related to cancer death in three in France is caused by prevention and treatment. Its flag- cancer. These statistics led the gov- ship enterprise is the creation of ernment to develop several action patient welcome centers within hos- plans to fight cancer.” pitals, known as Espaces Rencontres Dr. Henri Pujol. With input from Dr. Pujol, the Informations (ERI). first of these plans was launched The League also enjoys an excellent of cancer patients, their family and by Dominique Gillot, then Secretary relationship with Alliance Mondiale friends. Since its founding in 1918, of State for Health, in 2000. Three Contre le Cancer (AMCC), provid- the League has developed into a years later, President Jacques Chirac ing office space in Montpellier and strong network that leads the fight launched a second action plan, and working together with INCTR’s part- on several fronts: research, informa- France’s current president, Nicolas ner to answer the needs of profes- tion and prevention, and psychoso- Sarkozy, has a third plan in devel- sionals and volunteers fighting can- cial assistance for patients. opment. With nearly two million cer in French-speaking developing France offers its citizens a national French people affected by this dis- countries. health system. Over the past decade, ease, cancer is not just a medical In 2004, the National League against with cancer incidence on the rise, problem, says Dr. Pujol, but a social Cancer was the principal partner in the government has demonstrated a one as well. The citizens of France AMCC’s efforts to bring solutions to renewed interest in coordinating the are demanding action. French-speaking African nations. For management of cancer prevention, “Any successful national plan must the past two years, the local com- treatment and research. As a federa- emphasize the importance of preven- mittee has supported AMCC’ pub- tion of 102 departmental committees tion, treatment and research,” says Dr. lic awareness event, Cancer Day for that works to relay to the public the Pujol. “Jacques Chirac said publicly French-speaking countries. mission of the administrative council that people with cancer don’t just “There is real collaboration and trust and the national scientific council, want to be cared for; they want to between the League and AMCC,” he the League is one of two non-gov- be cured.” That pragmatic approach says. n ernmental organizations (NGOs) sup- resonates with Dr. Pujol, who sees the porting France’s fight against cancer. League playing a key role in educating Marcia Landskroener for INCTR 23 NETWORK

Profile in cancer medicine

Saving Eyes, try through the work of the Mexican Saving Lives Retinoblastoma Group and the devel- opment of the national treatment pro- tocol,” he says. Retinoblastoma (RB) has one of the To help educate the public about Rb, best cure rates of all pediatric cancers Dr. Leal’s group launched a program - if it is diagnosed early. For the past that placed posters in childhood vac- two decades, Dr. Carlos Leal has been cination clinics frequented by young a leading proponent of early detection parents. and treatment of this rare tumor in As part of his work with INCTR, Dr. young patients throughout Mexico. Leal has been involved with a study An oncologist practicing at the designed to identify the causes of late Instituto Nacional de Pediatria in presentation in RB in 10 countries with Mexico City, where he took his medical limited resources. He has also contrib- training, Dr. Leal enjoys the benefits uted to RB programs throughout Latin of well-equipped facilities dedicated America. With public outreach pro- exclusively to clinical treatments and Dr. Carlos Leal co-chairs INCTR’s grams in Saõ Paulo, Buenos Aires and research in pediatrics. The govern- retinoblastoma subcommittee. Lima, doctors are saving eyes through ment-supported teaching hospital sets early diagnosis. Supported by St. Jude the national standards of patient care to work collaboratively to develop a Children’s Hospital, trained ophthal- and, in training the next generation of national early detection program as mologists from Latin America coun- medical professionals, seeks to remedy well as a treatment protocol. tries are traveling to remote regions the shortage of pediatric oncologists With the participation of 27 cen- of central Guatemala and Honduras to throughout the country. ters, the group created a National provide training in the diagnosis and With the help of the National Academy Retinoblastoma Registry. Early diag- treatment of young patients with RB, of Medicine and the support of Dr. nosis and education were priorities. effectively saving the lives of hundreds Roberto Rivera-Luna and the INCTR, Under Dr. Leal’s leadership, the group of children. Dr. Leal created the first collaborative also developed a national treatment “The most important thing is to make group for pediatric oncology in his protocol with guidelines for the man- a prompt diagnosis so we can save the country. The Mexican Retinoblastoma agement of retinoblastoma. Today, eyes,” notes Dr. Leal. “In poor countries, Group (RTBMex), a team of pediatric all Mexican children, from Tijuana to the general rule is to perform enucle- ophthalmologists established in 2003, Cancun, receive the same high quality ation, or removal of the diseased eye. has developed a national protocol that treatment. In Mexico and in other Latin American has been accepted by the National Dr. Leal also serves as co-chair of countries, earlier diagnosis makes it Seguro Popular health insurance pro- INCTR’s subcommittee on retino- possible to have a target of perform- gram. Only 50% of the Mexican popula- blastoma, endeavoring to share his ing enucleation in only half of our tion is covered by other forms of health knowledge and experience in treating patients.” insurance, but the national insurance patients with RB with colleagues in The gold standard for Rb diagnosis program provides medical coverage developing countries. is the Ret Cam, a sophisticated camera for all uninsured children with cancer. “One of the principal problems in that allows the physician to photo- This is a tremendous accomplish- developing countries is late diagno- graph the inside of the eye and pin- ment, given the group’s initial findings sis, which leads to a high mortality point the areas that require treatment. in 2003. In a retrospective review of rate,” says Dr. Leal. “Early diagnosis is With this $100,000 piece of equipment, 500 RB cases diagnosed at 16 institu- an important modality we can put into Dr. Leal says, they could save another tions over a six-year span, a large num- practice cheaply and easily to avoid 50 eyes each year. A small price to pay - ber of patients presented in advanced the critical problems we experience but developing the necessary funding stages and treatment schemes varied when diagnosis is late. We have been is not easy. n widely. From this study, Dr. Leal says, able to bring about a huge change in it was clear that the group needed the retinoblastoma field in my coun- Marcia Landskroener for INCTR

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