Science

Changing a verdict of despair

Sandoz and Novartis in Ghana are joining forces to fight one of the oldest genetic diseases in Africa.

Text by Goran Mijuk

Photos by Laurids Jensen and Mawuli Afatsiawo

“I knew that I was a carrier of sickle cell Disease.”

Gifty Cobby Amporful

Published on 08/06/2020

Back in 2011, Gifty Cobby Amporful, patient safety manager for Novartis in Ghana, faced one of the most difficult decisions of her life: Should she marry and have a family with her long-time boyfriend and risk that their children would suffer from sickle cell disease, a painful genetic blood disorder, or end the relationship and start a new life?

“I knew that I was a carrier of sickle cell disease and chances were high that if my boyfriend was a carrier too, our children would most definitely suffer from this potentially deadly condition,” Cobby Amporful recalls the difficult episode that took place more than eight years ago. “I asked my boyfriend to do a genetic test and when he found out that he carried the gene, I fell in a sort of depression.”

For more than a year, Cobby Amporful struggled to make a decision. Although sickle cell disease is widespread in Ghana and on the African continent, possibilities to treat the genetic disorder were poor at the time. In Ghana alone, thousands of children die every year due to the disease and those who survive are stigmatized by society.

“The situation not only affected my private life, but spilled over into my daily work,” Cobby Amporful remembers. “After a year, I decided to give up the relation because I could not justify any other decision due to the poor health outcomes. I knew that there would be no hope for the children.”

During the most difficult months, she received moral support from her colleague Roland Hammond-Addo from Sandoz, who himself had family and friends affected by the disease. “This condition is so common that it is almost difficult to find someone who is not affected by it in one form or another,” Hammond-Addo said, when we met him in Ghana , where he was preparing the official launch of the Novartis Africa Sickle Cell Disease Program, which took place on November 6, 2019, in Accra. “However, treatments were almost nonexistent at the time in Ghana or elsewhere in Africa. So, in some ways, I could well put myself in Gifty’s situation and provide her with support.”

Headquarter of the Ghana Food and Drugs Authority (FDA) in Accra.

Hammond-Addo, however, was intent to change the situation on the ground. He could not accept seeing children dying from the disease or endure the sight of a child that was marked by repeated strokes, which often come as a consequence of this hereditary condition in which red blood cells become rigid and sickle-shaped and can block blood vessels.

When he studied at the Novartis Africa University, Hammond-Addo was working on a paper centering on the healthcare challenges linked to sickle cell disease. “I have family and friends affected by this disease. I wanted to change their fate."

As part of his studies he also connected with Fionnuala Doyle from the Oncology unit at Novartis to work on assembling treatment guidelines for sickle cell disease in Ghana. This is also when he met Dr. Kwaku Ohene-Frempong, one of the world’s foremost specialists on sickle cell disease. He helped create the Sickle Cell Foundation of Ghana to address the public healthcare challenges connected with the condition, which affects 15 000 newborn babies every year in Ghana alone.

“This was the first project in which I was able to participate to help change the fate for patients on the ground,” Hammond-Addo said. “When I heard that Novartis was planning a sickle cell disease program in Ghana I immediately applied to be part of that project.”

Today, Roland is working as the Head of Access, Novartis Africa Sickle Cell Disease Program, together with his colleagues such as Sandoz Country Head Philip Tagboto, to implement the program, which aims to improve the situation for the hundreds of thousands of people across Africa suffering from the disease.

The situation is dire on all fronts. Most patients until recently had neither access to medicines nor healthcare infrastructure that would be equipped to tackle this disease adequately. Worse, because the disease is associated with witchcraft, patients are stigmatized and have almost no chance to lead a normal life.

One of the colleagues on the team, Kwasi Darfoor, knows this from firsthand experience. His brother had suffered from sickle cell disease and died at the age of 32. “I am proud that our company is doing something against this devastating condition. But almost worse than the disease is the stigma,” Darfoor said. “During most of his life, my brother was never able to socialize outside the family. I hope this is something we can change as part of the program for other people suffering from the disease.”

While the road to remedy the situation is steep, the team is ready to overcome the many obstacles. “For us, this is a great opportunity to address a healthcare problem, which has been a tragic burden on millions of families across all of Africa. If we can help patients in need and change the practice of medicine, this will be a major achievement,” says Roland Hammond-Addo.

The teams from Sandoz and Novartis in Ghana, from left to right standing: Joseph Sowatey, John Opoku, Selasi Duphey, Yaw Mireku, David Ameko, Priscilla Buliga, Jeffery Woode, Godfred Amedzro, Emmanuel Mireku, Roland Hammond-Addo, Kwasi Darfoor. From left to right sitting: Jason Agbodjan; Carlien Biezui, Funmilola Ikusika, Nafisatu Abdulai, Elikem Katsepor.

After the official launch of the program in Ghana’s capital, the team will continue to implement the five key pillars of the program, including boosting access to medicines, strengthening the pipeline of new sickle cell treatments as well as boosting the healthcare infrastructure in Ghana and other countries.

Tay Salimullah, who has been Head of the program since April 2018, is confident that the team will achieve its goal. “Inspired by the selfless leadership of Philip Tagboto and Roland Addo-Hammond, who brought Sandoz and Novartis to collaborate effectively, I am sure that through their passion they will address the sickle cell challenge head-on and find the best possible solutions for their fellow country women and men.”

Besides providing access to an efficient, high-quality generic medicine, hydroxyurea, which has been mostly unavailable in Ghana so far, and setting up a clinical trial for an innovative biologic treatment, the team is also working on educating healthcare staff and improving access to diagnostics, both for genetic testing and newborn screening.

“I was lucky that I had the chance to do a genetic test and find out that I was a sickle cell carrier,” says Gifty Cobby Amporful, who today is married with three healthy children. “One day, I hope that everybody has this opportunity and that patients have the possibility to not only get treated but cured. It is a long way to reach this goal. But which road is more meaningful to travel than helping others in need?”

“For us, this is a great opportunity to address a healthcare problem, which has been a tragic burden on millions of families across all of Africa. If we can help patients in need and change the practice of medicine, this will be a major achievement.”

Roland Hammond-Ado

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