By Oluwafemi Ajayi, Founder, Gail Sickle Initiative, Lagos
On Saturday, May 23rd, 2020, Gail Sickle Initiative welcomed Ms. Biba Tinga, President and Executive Director, Sickle Cell Disease Association of Canada (SCDAC) as a Guest Speaker on the ‘GSI Discussion Platform’. Ms. Tinga told us about her remarkable journey that started as a young mother in Niger, raising a child with Sickle Cell Disease (SCD), to her current role as both mother and patient advocate in the SCD community.
‘Get involved. It is important that we get involved as a community and advocate for ourselves. Advocacy is about speaking up when needs are not met. Who can determine your needs better than yourself?– Ms. Biba Tinga
Her journey started in 1988, in Niger, when her first child at 7 months old developed a fever that lasted over a week. He was first misdiagnosed with malaria. After weeks of investigation, he was properly diagnosed with Sickle Cell Disease (SCD), type SS. As she recounts,
‘My whole world came crashing down.’ She had heard about this painful condition and was told by everyone that her son will not live a long life and likely die by age 15.
‘I could not imagine losing him’, she said and chose never to accept that fate.
Unfortunately at that time, there were no computers or internet and nobody was there to give her information or even simple advice. There was no patient group that she could turn to.
‘I was scared and felt alone.’ She said, as she remembers how she had to self-educate about the disease.
Despite the care he was receiving, she noticed that he was not growing and was shorter than his friends. That was when she realized that they needed a change. They decided to move to Canada and in 2004, fifteen years after her son was diagnosed, she met Dr. Nancy Robitaille, who was the first physician that engaged her in a positive conversation about her son’s health. She described her feeling saying –
‘for the first time since his birth, I had hope that he will live!’
Then one day, her son’s nurse advised her to connect with the local SDC patient group. She called and started to attend their activities. Although as a teen mom, she had started to advocate for her son in Niger by challenging the physicians and asking questions, her SCD advocacy journey really started in Canada when she joined the patient group.
After a year of involvement, she was elected vice-president of the Quebec provincial chapter, l’Association d’Anémie Falciforme du Québec (AAFQ). She was able to meet with many other parents and their children, learning from them and sharing as much as she could about herself and her son’s experiences. She took part in planning education sessions, summer camp conferences to educate both the health care providers and the community. In 2014, she was elected vice-president at the national level and served for 3 years before being elected as the president and executive director of the Sickle Cell Disease Association of Canada (SCDAC).
Over the years, with the knowledge and skills that she developed through her involvement with the patient community, her son’s health improved to the point where he was able to go to college in another city. However, this uncovered new gaps in the care for people with SCD in Canada.
She explained that ‘once you leave major cities like Montreal, Ottawa or Toronto, you may come across a physician who has never treated a person with SCD!’
During those years, her son had to come back to Montreal every 3 months for his regular check-up and his lab results had to be sent back to his haematologist in Montreal for interpretation.
’SCD was barely part of the training curriculum and it became obvious that there was a need to advocate at the national level.’
She maintains that being a parent of a child with SCD gives one the experience and being part of the patient community gave her the knowledge and the skills to leverage that experience for making positive changes. She leveraged her parental experience in trying new medications, evaluating treatment options, managing the risks associated with SCD and its various complications and to advocate on behalf of patients and families in Canada. She concluded with a call to the community:
‘Get involved. It is important that we get involved as a community and advocate for ourselves. Advocating is about speaking up when our needs are not met. Who can determine your needs better than yourself? We can do this!’
Oluwafemi Ajayi is Founder/President, Gail Sickle Initiative, Lagos, Nigeria