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Dr. Kwaku Ohene-Frempong examining a baby in a doctor's office practice in Ghana.
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The force of willpower

There are plenty of great ideas. The trick is to turn them around.

Text by Goran Mijuk and K. E. D. Coan

Photos by Brent Stirton

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More than 15 000 children in Ghana are born with sickle cell disease every year.

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arrow-rightFive pillars
arrow-rightCulture and trust

Published on 08/06/2020

Jonathan Spector, who is leading the Global Health efforts at the Novartis Institutes for BioMedical Research (NIBR), could never have imagined that his short chit-chat with Jay Bradner four years ago would result in a healthcare program tackling one of the most crippling hereditary diseases in Africa.

Yet, this is what happened when, in mid-2016, Spector met Bradner, who had joined the company just a few months earlier from Harvard Medical School and the Dana-Farber Cancer Institute to lead the sprawling research universe of Novartis with its top-notch research pipeline, including several programs focusing on sickle cell disease.

Walking to their next meeting at NIBR’s headquarters in Cambridge, the two were discussing a rheumatic heart disease program in Zambia, when Bradner, who has won world renown as a hematologist, mentioned that sickle cell disease, a common genetic blood disorder, also constituted a major healthcare gap in Africa.

“That kick-started the process,” Spector said, when live magazine talked to him a few weeks before the Novartis Africa Sickle Cell Disease Program was due to start officially in Ghana in November 2019. “Serendipitously, there was a major congress on sickle cell disease taking place in Ghana a few months later. I traveled there to learn more about the condition and the associated healthcare challenges.”

Sickle cell disease affects millions of people worldwide and is believed to kill more than 100 000 people every year. Most of the patients are living in Africa. Although the condition is comparatively well understood – it is triggered by an abnormal protein that makes red blood cells shaped like sickles – there is no cure. Treatments have so far also been limited, especially in Africa, where even cost-effective generic drugs are often out of reach for patients.

“That trip to Ghana was a tremendous eye opener,” Spector recalled. “I am a pediatrician who has worked in global health for many years, but sickle cell disease was not on my radar, which I now understand to be a reflection of just how neglected it is. In Ghana, I began to learn about the disease, and I also discovered that others from Novartis before me had started to address the problem there. That network of trust our company had previously built up in Africa was a key enabler in helping to turn our ideas into reality.” 

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Babies are tested for sickle cell disease.

Strong base

In Ghana, Spector had the chance to meet Dr. Kwaku Ohene-Frempong, one of the world’s foremost specialists on sickle cell disease. Ohene-Frempong had worked at The Children’s Hospital of Philadelphia for many years and established the Sickle Cell Foundation of Ghana to ease the high disease burden in his home country. 

Known among his peers as “Kof” – a contraction of the first letters of his first and last name – Ohene-Frempong quickly bonded with Spector after realizing that he worked for Novartis. “Roland Hammond-Addo, Fionnuala Doyle, and others from Novartis had started to help Kof’s team to develop the first-ever treatment guidelines for sickle cell disease in Ghana. Kof clearly respected them and was very open to exploring ways to extend the collaboration,” Spector explained. 

The relationship with Kof paved by Hammond-Addo, Doyle and others proved decisive, serving both as anchor and springboard to create a group of dedicated Novartis associates working on a potential solution to tackle sickle cell disease in Ghana and beyond. 

“The good relations with Kof gave the initial idea another boost,” Spector said. “What was unique about sickle cell disease was threefold: The unmet needs were immense, there were no major organizations working to address it at large scale, and several divisions at Novartis were already deeply engaged in the disease area. It didn’t take long to identify colleagues around the company who were ready to put heads together to form a sort of coalition of the willing and scope out how Novartis might be able to contribute in historic ways.” 

Besides winning early support from Lutz Hegemann, Global Health COO, and Harald Nusser, Head Novartis Social Business, the group was soon joined by Spector’s long-time friend Andrew Cavey, with whom he had worked during the hurricane Katrina crisis in 2005 in the United States. Cavey, a physician by training, was more than a welcome addition. He was overseeing the clinical trials of an innovative antibody-based sickle cell treatment, the first-ever drug to be developed for this disease. 

More people joined soon afterward, including Kileken ole-MoiYoi, who is responsible for the strategy behind the global health efforts of Novartis, as well as Christopher Junge from Sandoz in Holzkirchen. 

As the idea gained traction, Tay Salimullah, who previously led pricing and access across different Novartis divisions, came on board in April 2018. He quickly assembled a diverse team with members from all parts of the organization, helping accelerate the project and achieve the near impossible: turning the initial idea into reality when the program was officially launched in Ghana on November 6, 2019.

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A quick blood test allows to establish whether a child suffers from sickle cell disease.

Five pil­lars

The signing ceremony in Ghana’s capital Accra, which brought together government officials, CEO Vas Narasimhan, Global Health Head Patrice Matchaba and colleagues from Sandoz and Novartis, marked the culmination of – at times – frantic activities.

The cross-functional project team led by Salimullah had built the program in just over a year, focusing on five key pillars: drug access and development, strengthening of the healthcare system and training as well as ramping up advocacy and policy efforts to remove the stigma associated with this disease.

A first big move, Salimullah explained, was to ensure access for patients in Ghana to a sickle cell treatment that has been used in many other parts of the world for decades: hydroxyurea, a generic blood cancer drug that has proved to be effective in treating sickle cell disease. 

“Hydroxyurea has been part of routine treatment in the United States and the European Union for the past 20 to 30 years, but it’s not even available in many African countries,” Salimullah said. “It’s a tragedy that hydroxyurea hasn’t even been registered in so many of the countries where the disease is most prevalent.” 

Thanks to the colleagues from Sandoz, the team was able to gain rapid approval – in eight weeks! They are now also working on a pediatric formulation of the drug to help improve outcomes for the more than 15 000 children in Ghana who are born with the condition every year. 

The program’s other key element was to work on a clinical trial for a biologic drug in Africa, according to Salimullah. The experimental compound will be tested in two hospitals in Ghana. Other countries are set to follow later. 

As part of the efforts to strengthen Ghana’s healthcare system, Salimullah’s team also helped train clinical centers of excellence and establish training and research opportunities for scientists in Africa. Amid these activities, the team also launched a digital app to collect real-time data to ensure hydroxyurea is rolled out in a safe and responsible manner. 

As part of its five-pillar strategy, the team is also working hard to address the stigma attached to the disease. “A major component is eradicating the stigma associated with sickle cell disease,” Salimullah explained. “It is not uncommon to hear of adults being sacked when their employers find out they have the disease. Children are frequently sent home from school during a pain crisis, and it’s not unheard of for children to be outcast because their villages believe that witchcraft is behind their symptoms – it’s a devastating condition not just from an access perspective, but from a societal perspective.”

This situation, Salimullah went on to say, needs to be changed. “Our goal is to collectively reimagine a continent where children attend school without being singled out; where young adults can be employed without fear of their condition; and relationships continue to be the bedrock of civil society – in a nutshell: We will make every effort to normalize sickle cell disease with our partners in Ghana and beyond.”

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The diagnostic data is stored on an App.

Cul­tu­re and trust

Over the past few quarters, the cross-functional team – consisting of colleagues from Novartis, Sandoz, GDD, Oncology and NIBR – has made great progress on other fronts too. They have established an innovative pricing and distribution scheme to make hydroxyurea accessible to all affected patients, including those living in rural areas of the country. 

Besides offering the first 6000 treatments at less than 50 percent of the price of other available products, they have also partnered with Zipline – a drone delivery system. “Our maiden Zipline flights delivered treatments to patients who would otherwise have had an up to six-hour commute to fill their prescriptions,” Salimullah said. 

As the team is now working on broadening the program beyond Ghana – discussions are underway with five additional countries – Salimullah took a short breather to look back and reflect on the achievements, highlighting the importance of the cultural shift of Novartis: “We knew that the program was to impact people’s lives. But we weren’t going to be held down by maintaining the status quo at Novartis.” Rather, he detailed, the cross-functional team wanted to show that being curious, inspired and “unbossed” can make a huge difference. “If your culture supports it – as ours does – it’s ok to persistently ask: ‘How can we reach more patients ... what do we need to do to execute faster?’” Salimullah explained.

Meanwhile, the success of the sickle cell program is also testimony to the strong reputation of Novartis and the trust its associates have built up over the years around the world, according to Jonathan Spector.

 “Literally every interaction counts,” Spector highlighted. “Had it not been for the authentic relationship that Kof had with Roland and Fionnuala, the program could have stopped in its tracks right from the beginning. But because of the trust our organization was able to build over many years, we were able to proceed. I hope that the work being done now will similarly serve as a springboard to our future colleagues in the years to come.”

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