Treating sickle cell disease with hydroxyurea therapy – a game changer

GNA feature by Godwill
Arthur-Mensah

Accra, Dec. 09, GNA – 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.

GNA