There is a sickening upsurge of fake cancer information in Tanzania, yet not many people fully understand the disease, its symptoms and how to surmount the barriers of seeking medical help.
Efforts by cancer experts are yet to yield results in demystifying the disease and curbing fake info, such as the fast-spreading half-baked reports of claimed cancer “cures,” and frightening stories on social media, which tend to link certain foods and human deeds with cancer.
Against this backdrop, is an estimated 30,000 new cases of people with the disease every year in Tanzania according to data obtained from the Ocean Road Cancer Institute (ORCI)—the country’s major cancer center.
However, a group of radiotherapists currently working in the country believe they can tackle the problem through WhatsApp—a cross-platform instant messaging service for smartphones. The go-to messaging tool is now hailed as a formal and a common channel of communication in our day to day work.
In February this year, the radiotherapists formed WhatsApp groups, dubbed ‘Saratani.info 1, 2, 3, 4 and 5’, through which they spread awareness about the disease. Each group has 251 members, so in total, 1,255 people have so far joined the groups. Each group has five educators.
Mr Franklin Mtei, the founder of Saratani.info and Managing Director of the Tanzanian Cancer Society (Tacaso), is leading the team of educators which include radiotherapists, medical doctors and nurses, all set to educate members of the group; who are expected to become future cancer ambassadors.
“We believe our movement is unique. The online cancer awareness by our volunteers aims at turning the people we educate into Cancer Ambassadors, who will further spread the knowledge,’’ says Mtei, a trained radiotherapist working in Dar es Salaam.
Mtei tells Your Health that the members of the group comprise of people from the general public, the private sector, public officials, students, entrepreneurs, professionals and non-professionals, especially those who are active on social media.
“We began by adding the WhatsApp users that we already had in our own phone books. We went on to invite other people through Facebook links. One can join and leave any of the groups voluntarilty through our Facebook Page which is also named Saratani.info,” says Mr Mtei.
How Saratani.info groups work
In one of the groups, about two weeks ago, Marianus, a member, was removed by the administrator after he posted a text message written in Kiswahili, titled, “Madhara ya Sindano za Kuzuia Mimba.” In English, this can be loosely translated as the effects of using injectable contraceptives.
The text claimed that injectable contraceptives interfere with menstrual cycles, can cause frequent head ache and dizziness. The text went on to say that the women who also use pills, can suffer from diabetes, among other diseases. Part of the text alleged, “Contraceptive implants cause cancer (no specific cancer was mentioned)”.
Marianus’s text warned, “Chukua tahadhari ewe mwanamke, unaathirika bila kujua,’’ meaning, that this is a warning to all women, take precautions, you are risking in ignorance. Then, a name “Dr Dutch,” was signed at the end of the post, followed by a mobile phone number—for whatever purpose.
It was not clear whether “Dr Dutch,’’ a name signed at the end of Marianus’ text was a medical doctor or traditional healer.
Yet, according to one of the healthcare providers in the group, Bulongo Christian, the post was alarmist, lacked evidence, and was something to ignore.
Christian said, “What you (Marianus) posted, are just minor annoyances caused by contraceptives, but not the actual side effects. Don’t forward “fake” messages. You could be jailed.”
However, Marianus’ post aroused a debate in the group. Most group members asked questions but one query stood out in common: “So, what’s the alternative contraceptive?”
After posting the text in the group, Marianus never turned up to clarify. Out of the 251 members in the group, only seven were engaged in the conversation about the post. One person thanked Marianus for the post.
Another member of the group suggested that natural method of contraception, such as the calendar type was a good alternative. Others remained indecisive.
When the group conversation touched the nerve of the Saratani.info group founder, Mr Mtei, he came up to write, “I have always warned members about posting text messages that lack evidence. In this group, we don’t entertain this habit.”
What followed after all this? Marianus was removed.
But that wasn’t the first and last time Mr Mtei was disciplining a group member.
Keeping the conversation going
For the past five months, since the inception of Saratani.info, Mtei and his team are advocating awareness on cancer among people in Tanzania.
Mr Mtei says he and team formed the group after realising that there was an information gap in the society here in Tanzania, regarding cancer awareness.
A co-founder of Tacaso, Mr Ally Idris, also a trained radiotherapist, tells Your Health that people’s perception about cancer in Tanzania wasn’t right for many years.
But, he says, more and more people are beginning to understand cancer through the public health education provided in the WhatsApp groups.
“There were people who believed cancer can be transmitted from person to person. Others always thought that the treatment of cancer by radiations was instead, causing more cancer. That was very wrong,’’ says Mr Idris.
It’s here that Mr Idris says more public education on cancer is still highly needed. “People need to be taught how to communicate ethically about cancer and how to deal with myths.’’
For instance, on Wednesday last week, one group member posted in Saratani.info, asking if he was allowed to post a picture of a patient who had a breast swelling so that doctors in the group could chip in to help.
The member wrote, “Doctors, there is a patient here who has a breast swelling. Can I post her and a photo [of this swelling] for discussion and assistance?”
The response to the member’s request was an immediate “NO.”
And, this was from Mr Mtei, the group administrator. He told the member that taking a photo of a person and posting it in the group isn’t ethical. Mtei advised, “Just describe the patient’s problem and it will be taken care of by the experts in the group.’’
What followed? The group member explained the problem, talking of how a woman had gone to a referral hospital with a breast swelling and her problem was treated as a normal swelling.
But later, the group member narrates further, a large wound developed and/with the breast nipple getting blacker.
Mr Mtei, the admin, advised the group member, “It’s now appropriate that the patient returns to her doctor for further evaluation.” Mtei offered a mobile phone number of a Chemo-therapist at that particular hospital.
Spreading the wings
The founders have hope that this online initiative, running under an umbrella organisation, the Tanzania Cancer Society (Tacaso)-formed in the year 2014, will provide services—even beyond the WhatsApp groups.
Tacaso, is now registered as an NGO dealing with elimination of cancer and improving the lives of those living with the disease. It operates in Tanzania mainland.
“We would like this organisation to form an innovation that will make countless professional volunteers to go out there and touch lives of many now and in future,’’ says the Tacaso, Managing Director, Mr Mtei as he highlights plans by the organisation.
“So far, we are digging from our pockets to fund this project. We want to go beyond the WhatsApp groups and form more offline cancer awareness movements,’’ says Mr Mtei.
In the long run, he says, Tacaso would find ways of partnering with the government and other health institutions on furthering their course in providing cancer services.
The organisation envisions spreading its wings across the country, targeting the vulnerable people who lack information about cancer, its causes, and prevention and how to access treatment.