Experts urge testing for couples to curb sickle cell disease
In Kenya, 14,000 children are born with sickle cell disease yearly.
What you need to know:
- WHO report indicates that approximately 300,000 children are born with sickle cell disease each year globally.
- Out of this number, 240,000 of them are born with the disease across Africa.
Health experts have recommended sickle cell disease (SDC) screening for couples from endemic regions before getting married to prevent the continuation of the disease in their lineage.
This gap, they said, is often overlooked and it has led to an increased number of children being born with the disease in Africa.
According to Dr Angela Munoko, a clinical pathologist based in Nairobi, there have been calls for couples, especially from the endemic areas, to be screened for the disease before getting married and having children, which in most instances usually isn’t the case. “If you do not know whether you make sickle haemoglobin, you can find out by having your blood tested. You may also have a genetic test done on your blood. This way, you can learn whether you carry a gene for sickle haemoglobin that you could pass on to your child,” she says.
Further, experts have advised parents with ailing children to stop living in denial and instead seek help.
“I have witnessed patients moving from lab to lab hoping to get a different result. Also, once we see features suggesting the presence of the disease, we recommend confirmatory tests, but the challenge is that some patients don’t follow up. This delays treatment and management of the disease,”adds Dr Munoko.
It is against this backdrop of these societal factors that haematologists and other medical experts have become a worried lot in the fight against SDC, especially in Africa. According to the World Health Organization (WHO), more than 66 per cent of the 120 million people with the disease live in Africa.
About 75 per cent of children with the disease in the world are born in Sub-saharan Africa.
The WHO report indicates that approximately 300,000 children are born with sickle cell disease each year globally. Out of this number, 240,000 of them are born with the disease across Africa.
But despite these shocking statistics, no country in this region has adopted a universal newborn screening programme.
According to Dr Jane Hankins from the Department of Haematology at St Jude Children’s Research Hospital in the United States, prompt diagnosis and appropriate treatment are fundamental pillars of effective sickle cell care. Without routine newborn screening and access to proper treatment, an estimated 50-90 per cent of those born with the condition die undiagnosed before reaching their fifth birthday in Sub-saharan Africa.
“A lot of complications associated with the disease usually affect children under five years, and so early diagnosis is essential so as to begin treatments that can reduce the
risk of life-threatening complications,” explains Dr Higgins.
Currently in Kenya, the ongoing doctors’ strike is making things even worse.
“This is a challenge especially when it comes to diagnosis and continuity of care because patients are likely to give up,” says Dr Munoko.
This is quite a blow for a country that is still listed among those that are highly burdened with sickle cell disease.
In Kenya, approximately 14,000 children are born with the disease each year.
But even with this, interestingly, Kenya is still considered as one of the countries that have made strides in the fight against the disease. For instance, Dr Munoko notes that there are
guidelines on control, screening, diagnosis and management of the disease, which has proven to be an important part of managing it.
This, according to this expert, enables people to get help right from primary healthcarefacilities.
“There is also the referral structure, which gives guidelines on how a patient can be referred should they require further health care and support,”adds Dr Munoko. Hydroxyuream, which is a drug used to prevent periodic episodes of extreme pain (pain crises),
has been included as an essential drug list and now is covered by National Hospital InsuranceFund.
There is also a health registry, which seeks to diagnose, register patients and follow up on them. Bone marrow transplant is one of the management modalities for sickle cell. “As a country, we had the first one bone marrow transplant in 2022. This is important because
it opens up the treatment option for people living with sickle cell disease.”
Prof Jenifer Knight-Madden of Pediatric Pulmonology & Clinical Research Sickle Cell Unit,Caribbean Institute for Health Research, University of the West Indies, says for countries
especially in Africa to win the war against the disease, policy makers should incorporate the treatment of SCD into the primary care system in terms of health insurance, early diagnosis, essential drugs and essential in-vitro diagnostics.
Dr Munoko also recommends counselling and widespread sensitisation on the disease especially in the most affected areas. “Community education is also crucial, where even community health workers are empowered to educate families at the grassroots levels.”
