INCTR 8^th meeting on Cancer in Countries with Limited Resources, Antalya, Turkey, 22-24 March 2009 – report by Denis Strangman (Chair, IBTA).

The International Network for Cancer Treatment and Research (INCTR) is based in Brussels and headed by Dr Ian Magrath who is an expert in the treatment of non-Hodgkin’s Lymphomas. INCTR was founded by the International Union Against Cancer (UICC) and the Institut Pasteur, Brussels. Its goals include assisting in controlling cancer in developing countries.

200 people participated in the Antalya meeting where there was a full program of presentations at plenary sessions and workshops.

Conference session

I attended the Antalya meeting, while travelling to the EORTC/EANO meeting on central nervous system malignancies, in the hope of identifying new contacts for the IBTA’s project to publicise the treatment situation of brain tumour patients in low to middle income countries (LMIC) and also to gain a better understanding of cancer control in these countries.

The only direct mention of brain tumours during the conference were references in two of the posters but I was able to make a number of useful personal contacts. The organisers also assisted by distributing a handout mentioning the IBTA project (click here to access).

My overwhelming impression is that brain tumours, because of their relatively low incidence and their poor prognosis, do not rate highly in research or interest in the low to middle income countries. They are not easily treatable and other cancers and other diseases (e.g. TB) and malnutrition and tobacco control, which have a higher impact, more public visibility and greater potential for treatment, are given a higher priority.

We know that at least 70% of the annual number of 200,000 new cases worldwide of malignant primary brain tumours occur in LMI countries. From messages received by the IBTA many people in these countries are unable to access what would be regarded as standard therapy for their tumour in developed countries. In some cases their tumour remains undiagnosed and many simply become patients at the end stage of their illness in woefully inadequate local health services or, if they are lucky, looked after by members of a palliative care team.

The raising of the standard of care for brain tumour patients in these countries will take many years. Efforts to transfer knowledge, particularly by professional education, and to provide equipment and treatment facilities, have their place and are important. In the meantime the most immediate needs are related to those patients in LMIC in a palliative situation. While the needs of all end of life patients deserve our greatest possible attention members of the international brain tumour community should focus some of their attention on the specific needs of brain tumour patients who are in the end stages of their illness. That means adequate access to dexamethasone for brain swelling, morphine for pain control, and anti-convulsant medications.

The proceedings

Early in the proceedings Dr Twalib Ngoma, a radiation oncologist from Tanzania and President of AORTIC (African Association for Research and Training in Cancer), received the Nazil-el-Maswla Award and Dr Giuseppe Masera (Italy) the Paul P. Carnone Award in recognition of outstanding anti-cancer work. AORTIC recently translated into French an item about the IBTA and published it in its electronic newsletter.

In his acceptance address Dr Ngoma said that there are 669 million people in Africa and there is much late stage presentation by cancer patients to hospitals. He told the meeting that “…when I was in medical school I was told that cancer was rare in Africa. Now, GLOBOCAN data shows that the majority of the global cancer burden occurs in developing countries.” He suggested there should be a specific goal for cancer in the Millenium Development Goals. Dr Masera said that of a world total of 200,000 paediatric cancer case, 85% occur in low income countries.

INCTR President Dr Ian Magrath said that of 7.6 million deaths worldwide in 2002 due to cancer 70% occurred in developing countries. In these countries 800 million people exist on an income of less than $496 USD per year. He pointed out that access to radiation therapy for cancer was maldistributed with Tanzania, for example, having only three radiation therapy machines. While the USA has 18.7% of the world’s cancer cases it consumes 61% of the world’s cancer drugs. Less that half of 1% in India have access to palliative care.

Dr Ian Magrath, Dr Ngoma, and Dr Joe Harford (Director of the Office of International Affairs at the US National Cancer Institute) played key roles at the Antalya conference, often speaking from the floor in discussions that followed presentations. IBTA Co-Director Kathy Oliver and I had briefed Dr Harford about the IBTA and its work at the UICC conference in Geneva last year and I also briefed him on the IBTA's LMIC project at Antalya.

In recognition of the inextricable connection between cancer treatment and palliative care INCTR has a special palliative care program called PAX (Palliative Care Access Programme). In a presentation Fraser Black (Canada) talked about the WHO opioid availability program where much work needs to be done. There is a plan to develop regional palliative care centres.

In the paediatric cancer area a major problem in the less developed countries is retinoblastoma.

Dr Francis Crawley, Executive Director of the Good Clinical Practice group in Belgium gave an interesting presentation on ethical issues in research in developing countries. I made the point in the discussion period about the need to provide for patient representation on ethics committees, with which Crawley agreed. [EORTC has apparently discussed the issue of patient involvement in the development of clinical trial protocols, which the IBTA is pursuing.]

In an early morning palliative care workshop a presenter from Nepal talked about efforts to promote palliative care in his country. In his hospital they commenced with 4 beds and increased to 10 beds. There are more patients in home care than in hospice. Morphine there is very cheap. A discussant said that in their country, Pakistan, morphine cannot be administered for more than two weeks. As is often the case elsewhere, people who are dying seek curative help.

Dr Stuart Bell from the National Cancer Research Institute in the UK spoke on infomatics, which is basically an attempt to make better use of the cancer research data generated.  Each year worldwide there are 250,000 patients involved in Phase I, II and III clinical trials. By way of illustration of the lack of transfer of information, there are 10 million Doctors worldwide and only 30,000 subscribers to The Lancet, one of the premier medical magazines. Telepathology is an area with potential and involves the electronic transmission of pathological images. [In conversation with me Stuart mentioned that he is also involved with EANO in a neuro-oncology initiative.]

Masoud Samiei runs the PACT organisation, which was established by the International Atomic Energy Association, as a cancer control organisation. There is a lack of radiation therapy machines but “machines don’t treat people, people treat people”. The Asian Pacific area is particularly poorly off in this area. It costs about $5-$6m to establish a cancer centre with 10-12 staff in a developing country.

Hassan el Sohl from Saudi Arabia talked about the value of telemedicine. It can provide a second opinion. They have a fibre optic system linking 18 treatment sites in his country. If it was not available a patient might have to take a flight of two hours to the capital. Originally it cost $200,000 per centre to establish but the cost is now down to $30,000. [See references in previous E-News issues to a program being run from a US hospital which provides a web-based discussion session for brain tumour neurosurgical cases.]

Dr Larry Lessin from the Washington Cancer Institute described the Open Educational Resources for Cancer, which is a web-based resource for cancer education. See: http://oerc-international.org/ which has this succinct descriptive statement by the UICC of the challenges posed by cancer: “Cancer kills more people than AIDS, TB and malaria combined, and the death toll is set to rise dramatically over coming decades unless concerted action is taken now. In the few years since the start of the 21st century, cancer has already cost almost as many lives as the whole of World War II - the single deadliest conflict the world has ever seen. The global cancer burden is increasing rapidly with growth driven largely by the ageing of the world's population. By 2030 it is estimated that over 12 million people will die of this disease every year. More than 70% of these deaths will occur in low- and middle-income countries, where resources available for cancer control are limited or nonexistent.”

Dr Kathleen Foley of the Open Society Institute gave a keynote lecture on palliative care. She mentioned the work by David Clark at the University of Lancaster who maintains the “International Observatory On End of Life Care”. See: http://www.eolc-observatory.net/index.htm [This may be a useful resource for validating the IBTA’s proposed pen pictures of the standard of care for brain tumour patients in LMIC.] Dr Foley argued that pain control is an important issue in palliative care and that we should campaign for pain relief as a universal human right. The International Narcotics Control Board needed to focus on access, not just on control. [In subsequent discussions Dr Foley was briefed about the IBTA’s standard of care in LMIC project.]

In an early morning workshop Claudia Epelman from the Santa Marcelina Hospital, Brazil, spoke about psychosocial aspects of paediatric oncology. She said that this support should be provided by a multi disciplinary team and should not be reserved for those with immediate problems. Open communication should be established at the time of diagnosis. Siblings should be involved. 40% of the paediatric patients at her institution are enrolled in clinical trials. The most difficult to deal with are the adolescents who seek to demonstrate their independence from the processes. Some of the young patients wish to talk about death, others do not. Very young patients can show their feelings by drawing. “In my experience they always know when something very bad is going on.” [Claudia and her husband Sidnei have formed an organisation, TUCCA, for children and adolescents with cancer which has a particular interest in brain tumours. See: http://www.tucca.org.br/ ]

Dr Margaret Borok Williams (Zimbabwe) spoke of her work with Kaposi sarcoma, which is the most common cancer in several African countries. It parallels the AIDS epidemic. She has observed a marked reduction in the mean age of presentation. There are non-sexual routes of transmission. Median life expectancy is under six months. Use of radiation therapy in treatment is patchy. A major problem is that she cannot access all appropriate drugs for this cancer. [In subsequent discussions Dr Williams explained to me the situation regarding the difficulties of importing therapeutic drugs into Zimbabwe.]

Dr Mostafa Nokta from the National Cancer Institute spoke about the development of AIDS treatment networks. He said that a US Presidential Plan has promised $48B over five years for HIV, AIDS, TB and Malaria treatment. There is also the Global Fund, which has $11.4B.

In a discussion about mesothelioma in Turkey a Doctor recounted how a patient had failed to be diagnosed correctly. The patient stole his hospital file to seek another opinion and again failing to obtain proper treatment he stabbed himself 13 times. The Doctor mentioned that in an area with a high mesothelioma rate he had also seen a number of brain cancer cases.

Professor Indraneel Mittra from New Delhi delivered a controversial presentation about the effectiveness of breast cancer screening, arguing that “The end point of screening is reduction in mortality, not early diagnosis”. He said that opportunistic screening by commercial companies does not tell us anything. He wondered if there are dangers in routine mammography.

Dr Nuran Bese from Turkey spoke about breast cancer treatment. He made the point that linear accelerators as used in developed countries cost funds to maintain in LMIC. By way of illustration of the challenges they face, if cancer staff work on a public holiday in Turkey they are not paid.

Dr Vahit Ozmen (Turkey) argued that the breast cancer guidelines developed in Western countries cannot be realistically applied in LMIC because of the limited health care resources. He mentioned that in Turkey there are 84 cancer centres in 81 cities.

Posters: Dr Volkan Hazar of Antalya, Turkey, displayed a poster about PNET treatment at his institution. Of 30 patients “with a median follow up of 36 months, event-free survival and overall survival were 64% at 2 years, 52% at 5-10 years and 74% at 2 years, 60% at 5 years, 55% at 10 years, respectively”. Dr Bilghan Yalcin from Ankara, Turkey, reported on the experience with pontine gliomas in children at his institution. He stated “Excluding the single patient with longest survival no patient survived >27 months. Irradiated patients (n=73, media EFS = 5 months) had significantly better survival than patients who received no therapy (n=25, median EFS= 0.1 month). Patients who received chemotherapy in addition to radiotherapy (n = 43, median EFS = 6 months) survived significantly longer than others (n=55, median EFS = 1 month).”

PNET poster

In another poster about Russian experiences in a specific region 23.38% cancers were diagnosed in an advanced stage.

In a study of paediatric cancers in HoChiMinh city (Vietnam) brain tumours were number 3 (10%) in the top 10 paeditaric malignancies for both sexes, following leukaemias and lymphomas.

In an interesting poster from an Indian centre it was stated that wheat grass juice had proved effective in increasing the haemoglobin level in anaemic patients.

Other discussions: An oncologist from a Latin American country suggested to me that 20% of brain tumours in their country probably went undiagnosed. Another oncologist from South Africa mentioned that they received many requests from other African countries seeking help with treatment but when told of the costs involved the patients did not proceed. A pharmacist from an African country said that one month’s supply of temozolomide would cost the equivalent of about $5000 USD and there was no government subsidisation for it. He said that dexamethasone was relatively cheap and most could afford anti-seizure medications but opioids were only available in the main treatment centres.