Every September, the world celebrates Childhood Cancer Awareness Month, and here in Rwanda, the day was marked on the 19th. As part of the activities to mark the day, Rwanda Children’s Cancer Relief (RCCR) held a walk in Kigali to create more awareness about childhood cancers in Rwanda. RCCR is a non-profit organisation dedicated to helping children with cancer live a better life.
Dr Fidel Rubagumya, the founder and director of the organisation, shared some insights on cancer with the Healthy Times. Our reporter, Donah Mbabazi talked to the medic, who for the past two years has been working at Butaro Cancer Center of Excellence taking care of cancer patients.
Tell us about Rwanda Children’s Cancer Relief
Rwanda Children’s Cancer Relief is a local non-profit organisation I founded in 2012 with six medical students who are now practicing medical doctors. RCCR raises awareness on childhood cancers in Rwanda through different platforms, including radio and TV talk shows. We basically highlight the signs and symptoms of different types of childhood cancers. Every September, which is the global Childhood Cancer Awareness Month, we carry out a walk to raise awareness on childhood cancers. Other than raising awareness, which is our main objective, we intend to financially assist children living with cancer access treatment here in Rwanda or abroad. As you can imagine, when a family has a cancer case, they are emotionally drained and the child’s dreams come close to a halt. At RCCR, with the help of professional children counselors and social workers, we want to bring hope to the hopeless little ones and their families.
What inspired you to start the organisation?
In medical school we are posted in various hospitals across the country as part of our training. So, while at CHUK in the children’s cancer ward, I used to see children coming to the hospital with late stage cancers that could not be treated. Their parents would tell me that they first consulted traditional healers thinking that their children were poisoned, and when the traditional healer failed, they then consulted a hospital. I wondered what I could do to stop, or at least reduce the late presentation of childhood cancers to improve treatment outcomes. It was from then that the idea of starting an NGO which would inform the general population about childhood cancers occurred to me. I reached out to my friends and colleagues and RCCR was born.
How is RCCR contributing towards the fight against child cancers in Rwanda?
Though it was founded in 2012, we were legally registered and able to launch our activities in 2014.So far, we have carried out two annual walks in Kigali to raise awareness on childhood cancers. We have distributed over 1,000 posters, 600 flyers, 560 brochures all containing information on childhood cancers. We have held numerous TV and radio shows, we have authored articles on childhood cancers in the leading media houses in Rwanda. We are not yet where we want to be, but we are heading there.
What are some of the challenges you face in your work?
All RCCR members are volunteers who are students and others employed elsewhere, hence they do RCCR work in their free time. This limits our potential to meet our set objectives. Also, childhood cancer survivors and their families are still afraid to come out and share their stories. Usually, the message is appreciated better when shared by a person who has had cancer.
What is the current status of childhood cancers in Rwanda?
Nationally, we are still challenged by the lack of a registration of cancer cases. The data available is institutional-based. Butaro Cancer Center of Excellence which has been treating cancers including childhood cancers reports that since July 2012, they have received 241 children cancer patients. This does not represent the situation in the whole country as there are others who die before diagnosis.
What are the main cancers that affect children in Rwanda?
Wilm’s tumor (cancer of the kidneys) is the leading case and different blood cancers including acute lymphoblastic leukemia, Hodgkin’s and Non-Hodgkin lymphomas are also among the common ones in Rwanda.
What are some of the hindrances in the fight against children cancer?
Generally, people lack information on cancers and those who have it do not know that children are also susceptible to cancer. Secondly, we do not have enough infrastructure to diagnose and treat cancers. We still lack enough specialised medical personnel and medical centres to deal with this epidemic. The government through the Ministry of Health is addressing all these challenges and we hope that in the near future we shall be better equipped to save our children.
Most people think cancer affects adults only, how true is this?
Many people think that cancers affect only adults because of the environmental exposure but that is not true; cancer can affect children too. Cancers are caused by mutations or errors that happen when our cells are multiplying and there is no known cause for these errors.
What are some of the signs of cancer one should look out for in children?
Cancer is not one disease, so the signs and symptoms also differ depending on which type of cancer. But mainly if it is a tumor it will be seen. Most blood cancers have symptoms that might be similar to other diseases so it is advisable that when a parent sees changes in his/her child’s health, they should take them to a hospital for a check-up. For Kidney cancer, a child will have a distended abdomen, especially in the flanks.
How does the annual children cancer walk contribute to the fight against the disease?
Chances are high that when childhood cancers are detected at an early stage thy can be treated successfully. We believe that with this walk and the other activities we undertake to raise awareness, children with cancers will be taken to hospitals early and hence a greater chance of survival.
Treatment of cancer is expensive, how do you deal with patients who cannot afford treatment?
It is true treatment of cancer is so expensive and if it were not for the government, Partners in Health and other partners, few would afford it. At Butaro Cancer Center of Excellence, cancer drugs are given for free and the patients with medical insurance (Mituelle de Santé ) only pay for other costs including hospitalisation.
What more can be done to strengthen the fight against children cancers?
Education, education and more education. People need to be aware of cancers in general, and that children can also suffer from cancer. Secondly, we need to train more specialists in children cancer treatment; we need more infrastructure. We are lucky that the government is willing to address non-communicable diseases, including cancers. I am sure we shall reach a point when children cancer survival will be over 90% as it is in the developed countries.