Sickle Cell Disease (SCD), is the most common inherited serious blood disorders. It is characterised by chronic anaemia, recurrent attacks of severe pain and complications leading to the blockage of blood flow. The mortality rate tend to be high.
Approximately, 80 per cent of babies born with the disease, globally, are in Sub-Saharan Africa. Between 80 and 90 per cent of these children die before their fifth birthday.
This group of blood disorders is reported to account for five per cent of under-five mortality in the Sub-Saharan Africa and up to 16 per cent in West Africa (WHO Report, 2006).
More than 400,000 babies are born with the sickle cell disease across the world, every year, while in Ghana, 15,000 out of 959,000 newborns, are estimated to have the disease – typically inherited from a person’s parents.
The cost of treatment is high in the country and throughout the African Continent. Added to this, is the limited medical services.
A serious gap in the management of the disease in Africa has been the absence of national newborn screening progammes. There is also the lack of systematic delivery of preventive care and effective management of complications in early life.
Again, gaps exist in the education for both health workers and the public. Not only that, there are deep-rooted misconceptions and stigmatization.
In some parts of Ghana, people with the disease are tagged – cast as witches and wizards.
National programmes to manage the sickle cell disease were started in the late 1960s, and a comprehensive medical centre to care for patients was established in the 1970s at the Korle-Bu Teaching Hospital, in Accra.
Newborn screening, however, began in the 1990s as a pilot project with a research grant from the United States National Institute of Health through Children’s Hospital of Philadelphia.
This was done in collaboration with the Sickle Cell Foundation of Ghana, under the leadership of Professor Kwaku Ohene-Frempong, the Ministry of Health (MoH), Noguchi Memorial Institute for Medical Research, Komfo Anokye Teaching Hospital and the Ghana Health Service (GHS).
The Health Ministry formally inaugurated the National Newborn Screening Progamme, in 2010, and appointed the Sickle Cell Foundation of Ghana as the Programme Managers. Noguchi was established as the National Newborn Screening Laboratory Centre.
Despite these efforts, only four per cent of babies born in the country, each year, are tested for the disease – a tiny fraction of the estimated 15,000 babies with the blood disorders, are actually detected.
Things are, however, beginning to change as MoH and the GHS upped efforts at training more nurses and health workers, to provide counselling for families whose relatives are suffering from the disease.
The pair are also working to assist the people to have better understanding of the sickle cell disease to remove the stigmatisation.
Another refreshing news is the signing of a five-year public-private deal by the Government of Ghana, acting through the MoH and GHS, the Sickle Cell Foundation of Ghana and Novartis, an international pharmaceutical company to improve the diagnosis and treatment of the disease.
The Memorandum of Understanding (MoU) was signed on January 24, 2019, and this was on the sidelines of the 2019 World Economic Forum held in Davos, Switzerland.
Under it, Novartis would provide support for medical education activities – logistics for scientific research, a mobile app to increase efficiency in data collection, establishment of 16 regional centres of excellence and screening of newborns.
The partners are going to use digital technologies to monitor and evaluate patients’ registration, report real-time data and help to ensure safe large scale roll-out of medicine in the country.
On Wednesday, November 06, the government announced the availability of hydroxyurea for treatment of sickle cell patients.
Hydroxyurea is a commonly used medicine for patients with the sickle cell disease in developed countries, and was approved by the Food and Drugs Authority (FDA) in October, 2018, for use by both adults and children.
This makes Ghana the first African nation to commit to offering the global standard of care to people with the blood disorders.
The Vice President, Dr. Mahamudu Bawumia, speaking at formal launch of the public-private partnership initiative in Accra, underlined the government’s determination to prioritise the diagnosis and treatment of the disease.
They were therefore going to include hydroxyurea among the list of medicines covered by the National Health Insurance Scheme (NHIS), to reduce the cost burden on patients.
He was upbeat that the partnership would be a game changer for healthcare delivery – enhance accessibility to the medicine.
“Covering the cost of hydroxyurea for people with sickle cell disease in this country will bring the much-needed financial relief to families struggling with the cost of care for their loved ones.”
Dr. Vas Narasimhan, the Chief Executive Officer of Novartis, assured of the company’s commitment to reimagining medicine for patients in Ghana and across Africa, to improve diagnosis and treatment of the disease.
He said, so far, 20,000 doses of hydroxyurea had been supplied to health facilities, nationwide, and this would be scaled up to 60,000, by the end of the year.
He added that Novartis would work closely with Zipline Technologies, a California-based automated logistics company, to use drones to distribute sickle cell disease vaccines to hard-to-reach communities in Ghana.
Prof Ohene-Frempong attested to the efficacy of hydroxyurea for treatment of the sickle cell disease and said it helped in reducing pain episodes and other complications of the disease.
Mr. Kwaku Agyeman-Manu, the Minister of Health, said they would make available requisite resources for the successful implementation of the initiative.
Doing that, would contribute significantly to ending preventable deaths of newborns and children under-five years – one of the Sustainable Development Goals (SDGs).
“We want Ghana to be a healthcare success story and serve as an example for the sub-region.
“We aim to be a healthcare hub where medical care meets digital technology and innovation becomes accessible for all.”
Seventy (70)-year old Betty Lokko and Florence Boadi, 26, both sickle cell patients, gave personal experiences of their struggles with the disease and how they have survived over the years.
They asked families with such patients to give them the necessary support and encouragement.
Since the disease is typically inherited from one’s parents, it is imperative that would-be couples undergo genetic testing to ascertain their gene types and chromosomes before marriage.
The results of the diagnostic test can influence a person’s choices including life partner, nutrition and lifestyle, to help in the management of the genetic disorders.
If would-be couples undergo genetic testing, it can provide them with vital information about the risk of having a child with a genetic condition, to decide either to go ahead with their marriage or abandon it.
By Godwill Arthur-Mensah