A discussion of experts on cancer registry worldwide

Dear All,

The mounth of July was a mounth of the second theme of discussion of professionals involved in cancer control with experts through Global Cancer Control Community of UICC. The discussion focuses on the target 2 of the World Cancer Declaration and consist to answering to the following questions:

1. Do you have a cancer registry system in your country? If so, please describe. If not, what are the main obstacles in your country that hamper development of a national cancer registry?
2. Does your country rely on a population-based or representative cancer registry?
3. If possible, do you know approximately what percentage of the population is covered by the cancer registry?
4. Which institutions are responsible for cancer data collection - government agencies or others?
5. How can health care professionals lobby government and health officials to invest in cancer registry development?

Here answers from DRC:
1.A cancer registry exist in DRC but is not well structured and organized because each hospital has its own data and these data are mechanically registered. Some institutions don't have computer and even those who have computer don't use it for registry. This because more professionals don't have sufficient skills for database system.
2.In the country there is no oncology service or unit.Cancer sicks are treated in others service as internal medicine department, surgery department, pediatric department, gynecologic department. This is done locally in each hospital but there is also a problem of diagnosis.For more of cases there is no certainty of diagnosis because of missing the appropriate materials for confirmation. All these cases are not registered.
3.The percentage covered by the cancer registry is not known in DRC.
4.Each institution has its own database but all report to the provincial inspection of health. But in all the reports there is not more information about cancer.
5.In DRC, the lobbing to be effective may be done by NGO with health professional. It is good that NGO organizes training in cancer and implement some programs in hospitals. But this demand more financial support.

Thank you,

Dr Mateus kambale Sahani/DRC-AGIR ENSEMBLE.

L'usage de la drogue par la jeunesse dans la ville de Goma

AGIR ENSEMBLE a publie un article sur l'usage de la drogue par la jeunesse de la ville de Goma depuis quelques jours. Cet article peut etre commande gratuitement par email en contactant Mr Alphonse Kavwirwa a l'addresse suivante: aensemble@yahoo.fr

Merci,

AGIR ENSEMBLE.

Make more dedications to sign the world cancer declaration

I just dedicated a page to my partner Italo Goyzueta at
LIVESTRONG Action.

This page is a part of the world's largest dedication book that LIVESTRONG
Action will use to pressure world leaders to do more to fight cancer. Can you
add your name to my dedication page? It'll only take a second, and you can
help me reach my target of 25 dedications. Please click here, it only takes a
second:

http://www.livestrongaction.org/dedication/dr-mateus-kambale-sahani-3 [1]

Right now, Lance Armstrong is dedicating his ride in the Tour de France to
the fight against cancer. And after the race, he'll send this dedication
book - with your signature - to world leaders and pressure them to
make cancer a priority in their own countries. It's our best chance to push
for better treatment, more funding for cancer research and access to care for
everyone around the world.

But if people like us don't stand up, these leaders won't pay attention.

Will you check out my dedication page? Italo Goyzueta inspired me
to take action - hopefully they'll inspire you to do the same:

http://www.livestrongaction.org/dedication/dr-mateus-kambale-sahani-3 [2]

Dr Mateus Kambale Sahani.

LIVESTRONG Global Cancer Summit, a Landmark event for the fight against cancer worldwide.

FOR IMMEDIATE RELEASE

ORGANIZATION: AGIR ENSEMBLE
CONTACT NAME: Dr MATEUS KAMBALE SAHANI
PHONE NUMBER: +243 998625635 or +250 788884503
EMAIL ADDRESS:kambalesahani@yahoo.fr or agirense@yahoo.fr

AGIR ENSEMBLE Selected to Participate in Premiere
LIVESTRONG® Global Cancer Summit in Dublin, Ireland

First-ever event to bring together world leaders, advocates and corporations from
more than 60 countries to address the global cancer burden

CITY OF GOMA, DRC – July 10th, 2009 – Today AGIR ENSEMBLE announced that Dr MATEUS KAMBALE SAHANI will represent the organization at the premiere LIVESTRONG Global Cancer Summit in Dublin, Ireland, August 24 - 26. The Summit is the landmark event of the LIVESTRONG Global Cancer Campaign, an effort of the Lance Armstrong Foundation (LAF). Dr MATEUS KAMBALE SAHANI will represent the organization’s commitment to fight cancer in DRC and engage with world media, political leaders, representatives of non-governmental organizations and corporate leadership.

“It is established that the burden of the invasive cancer in France is from 27 to 33 new cases for 100,000 women. It was demonstrated as well as every year 8 000 new cases are treated in France and 4000 women die from this disease. France being a country in which the technology seems to be advanced and most of the hospitals have a program of prevention of cancer (vaccination, screening and treatment of the precancerous hurts), now what about developing countries as DRC in which we have no improved program of prevention or program of screening and people have no information about the disease, the warning signs and the role of the screening?” Dr Mateus SAHANI.

“Cancer is a major public health problem that affects every country in every region of the world regardless of economic and social situation,” said Lance Armstrong, LAF founder and chairman, cancer survivor and champion cyclist. “Through collective action, we will make a renewed commitment to reducing the burden of cancer around the world and break down the stigma and silence too often associated with the disease.”

In September 2008, Armstrong announced the Foundation’s commitment to making cancer a global priority at the Clinton Global Initiative Annual Meeting in New York. The LAF made this commitment after its worldwide research, conducted over 18 months, revealed widespread misconceptions, stigma and lack of awareness associated with cancer.

In response, the LAF established the LIVESTRONG Global Cancer Campaign to urgently address the burden of cancer worldwide and support the 28 million people living with cancer around the globe. Cancer kills more people every year than AIDS, tuberculosis and malaria combined. It is estimated that cancer will be the leading cause of death worldwide by 2010.

With such staggering statistics, the LAF recognized that a global challenge like cancer required a global movement. And so it began urging world leaders, leading cancer organizations and cancer survivors to join together by making commitments to take action in their communities to reduce the burden of cancer.

AGIR ENSEMBLE is proud to join the LIVESTRONG movement with Cervical Cancer Awareness Campaign in DRC, North Kivu Province.
It is clearly established today that 28 million persons live with cancer among whom 13 % die from it. The last year, 7.9 million persons died from cancer among whom 72 % were in developing countries.
The World Health Organization declared that if the current tendency is not inversed, number of deaths in the world can reach 11.5 millions in 2030.
The cervical cancer is one of the most frequent cancers and takes the 2nd place of the causes of death by cancer and nevertheless easily avoidable if the women constituting the group of risk adhere to the program of prevention and early detection.
The cervical cancer, at the beginning, has no clinical signs but we can detect it even at this stage because the cervix is always accessible. If detected at this stage, cervical cancer is curable in 100 % with a simple treatment, or the detected precancerous hurts allow to prevent the arisen of cancer.
All these elements must be known by people to allow a success of the prevention of the cancer.


AGIR ENSEMBLE is looking forward to participating in the LIVESTRONG Global Cancer Summit in Dublin, Ireland from August 24-26, 2009 and helping to make the case for acting urgently to address the global cancer burden.

Unlike other conferences and forums, the LIVESTRONG Global Cancer Summit is unique in that it will kick off a unified global movement while providing attendees the opportunity to connect with other advocates, network, gain media exposure and access tools and resources to help them mobilize in their own communities. Speakers include honorary Summit chair and former Irish President Mary Robinson, Irish Cancer Chief Professor Tom Keane, CNN chief medical correspondent Dr. Sanjay Gupta as well as representatives from the World Health Organization and other global bodies.

For more information on the LIVESTRONG Global Cancer Campaign and the Summit, please visit www.LIVESTRONG.org.

About the Lance Armstrong Foundation
At the Lance Armstrong Foundation, we fight for the 28 million people around the world living with cancer today. There can be – and should be – life after cancer for more people. That's why we kick in at the moment of diagnosis, giving people the resources and support they need to fight cancer head-on. We find innovative ways to raise awareness, fund research and end the stigma about cancer that many survivors face. We connect people and communities to drive social change, and we call for state, national and world leaders to help fight this disease. Anyone anywhere can join our fight against cancer. Join us at www.LIVESTRONG.org.

About AGIR ENSEMBLE:
Cancer is a real problem in developing countries! We have many difficulties to monitor a case of cancer and even to give the diagnostic to people affected by the illness. Many people die without knowing their diagnosis. In our country, professionals of health have difficulties to get diagnosis of certainty, to announce the diagnosis, to treat people affected by cancer because they usually arrive at the advanced stage of the sickness. That is why AGIR ENSEMBLE is doing all its best and with the own means to raise awareness people of cancer and to share with health professionals(including doctors and nurses) information on cancer to allow them doing what they can for a cancer patient. In this case, within AGIR ENSEMBLE, there is a scientific group composed by 6 doctors and 4 nurses. This scientific group meets each mouth to discuss some cases found in different hospitals of the town of Goma. The meeting has the goals of confirming the diagnosis by joining together skills from different doctors and different hospitals, making a decision of treatment and finding a mean to announce the illness to the sick or the family. Habitually we announce the diagnosis to a wise person of the family. This because cancer still being considered as a no acceptable disease and people think about sorcery. No one accept that some one can live with cancer. For each world cancer day, AGIR ENSEMBLE organizes activities of raising awareness people following the theme chosen by UICC. We usually organize also other session as education for early detection of breast cancer by teaching to girls how to make a daily auto examination of the breast. AGIR ENSEMBLE is member of UICC in the fight against cancer, of FCA and ATCA in the fight against tobacco and its director of Health Department (Dr Mateus KAMBALE SAHANI) is a member of many international networks as Global Cancer control Community of UICC, GLOBALink, Global Dialogue for Effective Stop Smoking and usually participate in their respective e-forum.
AGIR ENSEMBLE made many actions within the framework of the control of tobacco: sessions of sensitization with various subjects developed, participation to the Training session (workshop) on FCTC hosted at Kinshasa by FCA in collaboration with LUCTAF.

During the world cancer day, February 04th, 2008, AGIR ENSEMBLE organised 2 sessions of sensitization on tobacco as a public health problem and has disseminated the content of the ministerial tool on tobacco control in DRC to people of Goma and on February 4th, 2009 we have begun the campaign “I love my healthy active childhood”. See the report of these days on our blog http://agirensemblerdc.blogspot.com. Other realizations as publications can be also found on this blog or at http://drmateussahani.blogspot.com.
For a long time AGIR ENSEMBLE is in partnership with 5 secondary schools: Majengo institute, Institute of Himbi, Visoke institute, Mont Goma institute, Institute of Kasika, with 4 primary schools: EP Majengo, EP Bwakya, EP Uzima, EP Mabanga and with the various sections of the CBCA community church. This relationship allows us to realize our activities of fight against tobacco without resistance. Before and later the FCA workshop of Kinshasa, this partnership was strengthened with other NGO as SEA, IDPE, CAMEVU, and SYLAM.
Our actions at schools have the goals of protecting youth against tobacco and other health problem and to inform youth on cancer at the young age. This permit young people to avoid beginning smoking. Even if we have limited possibilities but we try what we can to help our people being informed on cancer and tobacco.



Thank you.

AGIR ENSEMBLE/UICC-DRC.

La journee mondiale contre le cancer 04/02/09 bien celebree a Goma

1. Introduction
En date du 04 Février 2009, la journée mondiale contre le cancer, AGIR ENSEMBLE, a organisé une séance de sensibilisation avec un groupe des parents ayant encore des enfants de moins de 12 ans de la ville de Goma pour diffuser l’information sur l’obésité et le surpoids comme facteurs de risque du cancer et sur l’exercice physique comme mode d’éviction du cancer.

2. Objectif de la séance
Le 04 Février de chaque année étant la journée internationale contre le cancer, AGIR ENSEMBLE a voulu se joindre aux autres partenaires agissant dans le domaine pour apporter sa contribution pour le lancement du 2e thème de la campagne « Today children, tomorrow world » pour permettre la diffusion de l’information permettant le maintien de la santé de la population infantile.
Pour cette séance, Agir Ensemble s’est fixé comme objectifs :
- réunir un groupe de 30 parents pouvant recevoir le message,
- enseigner au groupe l’importance de l’exercice physique, de régime alimentaire équilibré pour les enfants.
- A la fin de la session au moins 95% de l’auditoire doit maîtriser les aliments qu’il faut pour les enfants pour un bon équilibre énergétique.

3. Contexte d’organisation
Etant donné la difficulté financière, la séance s’est tenue dans l’une des salles de réunion de la paroisse CBCA Katoyi de 09h00 à 12h00 qui a une faible capacité d’accueil.
Nous avons réuni 25 parents dont la plupart étaient des veuves qui ont des enfants.

4. Déroulement de la session
La session s’est déroulée autour du sujet :
« Bouger et manger équilibré, une bonne prévention du cancer pour nos enfants».
L’organisateur de la séance était Dr Mateus KAMBALE SAHANI, Directeur du département de Santé de Agir Ensemble et le modérateur était Réverand KAMBERE KILALA, Chef de la section de Kirumba de AGIR ENSEMBLE, une cité se trouvant 160 Km au Nord de Goma et pasteur de la paroisse de Kirumba.
Les orateurs étaient respectivement Dr Mateus KAMBALE SAHANI, Directeur du département médical de Agir Ensemble et Mr Alphonse KAVWIRWA.
Le 1er orateur, Dr Mateus, a commencé par donner l’ampleur et la tendance epidemiologique du cancer tout en expliquant la place qu’elle occupe en terme de prévalence et de mortalité. Il a aussi expliqué le rôle des habitudes des populations des pays en voie de développement dans la détection tardive de la maladie, ce qui accroît la mortalité dans les pays en développement. Le speaker a alors exhorté les parents qui l’écoutent a abandonner les habitudes alimentaires et physiques dangereuses pour aider nos enfants a grandir en bonne santé et sans cancer.

Par après l’orateur a insisté sur l’exercice physique comme meilleure méthode de prévention du cancer chez nos enfants et même les adultes.
Puis on est passé au 2e orateur, Mr Alphonse qui a expliqué aux participants les aliments qu’il faut pour un régime équilibré ainsi que la balance énergétique pouvant permettre aux enfants de grandir en maintenant la masse corporelle proportionnelle a la taille.
Par la suite, la parole est revenue à Dr Mateus qui a conclu l’exposé par quelques photos illustrant l’obésité et le surpoids. Ces photos ont constitué un signe d’alarme qui a permis aux participants de prendre un engagement pour le régime de leurs enfants.
Par la suite, le modérateur a donné la parole aux participantes pour poser des questions d’éclaircissement.
L’auditoire a été intéressé du sujet et au total 8 questions ont été posées et ont trouvées réponses à la satisfaction du public.
Pour finir, le modérateur a procédé a un jeu des questions orales pour évaluer le degré de compréhension de la leçon surtout a ce qui concerne les aliments qu’il faut pour le régime équilibré. Ce qui a été satisfaisant.
5. Participants
Au total 25 parents ayant tous des enfants de moins de 12 ans ont participé à la session et ont trouvé la séance intéressante.
6. Evaluation et monitoring
En principe, on s’attendait à regrouper 30 parents et nous avons réuni 25. Cet objectif a été atteint a 83.33%. Le 2e objectif a été atteint a 100%, tous les participants ont bien maîtrisé l’importance de l’exercice physique et du régime alimentaire équilibré, ses avantages et le pourquoi de cette habitude.
Nos objectifs ont donc été atteints a 91.66% (83.33 +100 divisé par 2).

La difficulté qui nous a empêché d’atteindre le maximum de nos objectifs c’est surtout le contexte, la difficulté financière.
7. Questions posées et recommandations
Questions
- Que signifie cancer?
- Quelle est la cause du cancer?
- Que faire pour pallier au problème de régime dans un contexte de pauvreté?
- Comment l’exercice physique peut-il aider à éviter le cancer?
- Est-ce que les enfants développent le cancer?
- Peut-on vivre combien d’années avec le cancer?
-peut-on guérir du cancer?
-Peut-on devenir obèse alors qu’on est pauvre?

Recommandations
A l’issue de la session, les participants ont émis les recommandations suivantes :
- Il faut multiplier de tel genre de séances car très éducatives et donnent une orientation de la vie pour éviter certains problèmes de santé dont la population est ignorante.
- Pour la prochaine occasion il faudra choisir un endroit approprié, spacieux et inviter un grand nombre de gens pour participer pour la diffusion large du message.
- Songer a la participation des enfants dans les sujets qui les concernent.

8. Conclusion
En général la séance s’est bien déroulée et a été un succès malgré quelques difficultés. Les objectifs ont été atteints dans la majorité des cas.
Faute des moyens, les stratégies ont été modifiées et la cible prévue (des couples) a été prise pour parents en général associant les veuves et les filles mères.

Fait à Goma, le 19 Février 2009.


Dr Mateus KAMBALE SAHANI/AGIR ENSEMBLE.