The Pierre Fabre Foundation is on the vanguard of efforts to ameliorate the incidence and impact of SCD in Africa. In this interview, the organization’s Director-General, Béatrice Garrette, says
‘Sickle Cell Is Marginalised By National and International Health Authorities’
By Ayoola Olajide
What motivated the Pierre Fabre Foundation to pick SCD as one of its cardinal programmes?
The Pierre Fabre Foundation first began to take an interest in sickle cell disease more than 10 years ago, due to the very high prevalence of this illness on the continent of Africa, and because it is unfairly ignored by both local and international health authorities, and receives practically no care funding for patients. Today, we are playing an active role in eight African countries, as well as Haiti. In all these countries, we work in partnership with local stakeholders, hospitals, universities and patient organisations.
Did you find literacy an important component of understanding your sickle cell message?
It has become clear to us that there is a high level of ignorance about this disease, not only among patients, but even among healthcare professionals. All our programmes therefore include awareness, information and education campaigns, which use special resources to reach out to people with poor, or no, reading skills. Outside urban centres, this disease is still the focus of many superstitions, all of which have fuelled the discrimination and rejection suffered by some patients and their families. Raising awareness of the disease and explaining it are essential for changing the way people perceive this condition. Two concepts are particularly challenging to get across: the fact that this is a genetic illness transmitted by both parents, and the fact that this is a chronic illness requiring a lifetime of care and treatment.
How does newborn screening help to improve quality or span of life in SCD babies in the experience of your Foundation?
Neonatal screening provides the opportunity to educate parents and put in place a preventive treatment plan before the disease shows itself after the age of six months. With widespread vaccination, antibiotic therapy and proper supervision, infections can be avoided, and crises prevented or treated to avoid complications. This is why part of our efforts are targeted at promoting the necessity of neonatal screening. Currently, the most advanced neonatal screening programmes in French-speaking Africa are in Burkina Faso and the Democratic Republic of Congo. We’re also conducting an operational survey in this field in collaboration with Gaston Berger University in Saint-Louis, Senegal.
As Africa’s birth rate is not expected to fall – estimates say the population will reach the 2.5 billion mark by 2050 – what do you think African governments should focus on – cure, treatment or prevention?
Based on our experience, we would recommend a comprehensive approach. It’s not possible to put in place information and screening programmes in the absence of access to high-quality care. And then, if you want to significantly limit the number of sick patients, you also have to promote premarital genetic counselling to inform people of the risks involved and to limit the number of high-risk relationships. Our comprehensive approach translates into screening, treatment, staff training and public awareness programmes. We’re also investing in clinical research and international lobbying to sharpen awareness and better treatment for SCD.
How do you rate African governments in their response to SCD research/awareness?
There’s no doubt that sickle cell disease is not a public health priority for African governments. Nevertheless, we have seen a greater level of attention being paid to the problem by health ministries in recent years. In some cases, national plans have even been announced, but unfortunately, they have yet to be implemented.
Do you think the declaration of a World Sickle Cell Day has helped improve interest in SCD?
We think that it has helped promote awareness among non-profit organisations and society as a whole, and attracted the attention of governments.
The Foundation has significant presence in Francophone West Africa and Congo Brazzaville. All these countries combined do not have half the population of people with SCD as Nigeria. Are there any reasons for this?
Historically, the Foundation’s first SCD programme was developed in Mali in partnership with the government. We then built on that experience by extending our initiatives into other countries of the French-speaking subregion, where significant need exists and where we already have a network of French-speaking African specialists.
Last year, we launched a wide-ranging call for projects to support those involved in sickle cell disease care throughout Africa, including its English-speaking countries, as a way of scaling up the response to a new level. We received 53 project submissions from 20 countries, including Nigeria, which are currently being reviewed and assessed. Our vision for the coming years is to bring together a group of major stakeholders who will work with us so that we can respond as a group to the needs of the African continent.
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