Making a difference for children with cancer (11 min read)
As countries develop, access to healthcare may not improve evenly. In the West African nation of Ghana, gaps in access have left children with cancer and their families vulnerable. With the support of Sandoz, the UK-based charity World Child Cancer is using a multi-level approach to change this.
May 29, 2018
Listen to audio version (10:33)
In a large, open room at Korle Bu Children’s Hospital in Accra, Ghana, Charlotte sits on one of the cots; her daughter, Rebecca, leans against her. “For months, Rebecca had been weak,” Charlotte explains. In their village, they treated Rebecca for malaria; when that didn’t work, they tried treating her for dengue. “Rebecca only got worse,” her mother says. As time passed, Rebecca could not eat nor walk. After advice from a regional nurse, Charlotte borrowed money to pay for a hired car to bring them to the city of Accra, specifically to Korle Bu, which is a teaching hospital. They wanted an answer. They got one they did not fully understand, yet feared: cancer. With the diagnosis came new worries, Charlotte explains: “Will Rebecca’s treatment even work?” And how to pay for it, find a place to stay, make up for missing time from work? After the diagnosis, Rebecca’s father disappeared; her brothers and sisters had stayed behind in their village, and they, too, needed care.
As her mother speaks, Rebecca continues leaning against her. She knows the story, of course. But neither she nor her mother know how the story will end. This is a situation no parent wants to be in, no child should be aware of. Charlotte pauses. Despite everything, she says firmly, they are still here at Korle Bu, and “there is hope.”
Five among millions
There have been significant odds against a Ghanaian parent or child patient feeling hope. While the nation’s healthcare system, including in pediatric oncology, has made progress, much more needs to be done. One clear example where more work is needed is the lack of medical capacity: In Ghana’s current population of over 27 million, there are only five children’s oncologists in total, two of them working at Korle Bu.
Their work is difficult, however, not the least because of outcomes. “In developed countries, 80% of children now survive a cancer diagnosis, but in developing countries like Ghana, it's still only about 10%,” explains Jon Rosser, the Chief Executive of World Child Cancer, a London-based non-profit that provides support to the children’s oncologists at Korle Bu and at hospitals in other developing countries by improving access to quality treatment and support for children with cancer and their families. “In our programs, we can already raise that survival rate to around 60%."
Dr. Lorna Renner is one of five pediatric oncologists in all of Ghana. She welcomes the work to build capacity by training more pediatric oncologists.
The geography of cancer
Improving childhood cancer treatment in Ghana is a complex task. While this nation is lauded for its rising GDP, economic development and regional prosperity, “much more needs to be done,” says Peter Stenico, Global Head of Oncology at Sandoz, “but this nation is not at the top of the list regarding international aid.” According to 2016 OECD data, Ghana received only about 2.8% of international aid for Africa.1 Ghana’s 2017 international aid – USD 1.662 billion – is almost equal to its ten-year average amount (USD 1.621 billion), despite a population increase of six million people during this time.2
Ghana’s rising GDP does not cover the gaps in international aid - and this underfunding is worsening the healthcare access situation in the country. Perhaps the most visible and dramatic consequence of this uneven access is a lack of proper diagnosis and treatment of cancers among children.
In 2003, Ghana created the National Health Insurance Scheme (NHIS), which covers approximately 10 million people. Almost 70% of the members pay no premiums, including the elderly and children under 18.3,4The rest cover for the rising healthcare costs in the country. However, children’s cancer treatments are not covered by the National Health Insurance. An official at the NHIA, the insurance program’s governing agency, cited the reason as the “high cost of treatment” which could lead to the“collapse of the whole (health insurance) system.5 The estimate for treating a common childhood cancer like a lymphoma is about USD 400; a kidney or eye cancer treatment is estimated at about USD 910.10For many Ghanaians, where the per capita income is USD 4,600 6, these out-of-pocket costs are already steep. And for many Ghanaian families, the total treatment costs – which means medicine as well as travel expenses, temporary lodging, time-off from work and childcare for other family members – makes treatment prohibitive. Dr. Tim Eden, a patron and founder of World Child Cancer, explains, “Even today, we still only see about one-third of the children we expect to.”
Finding solutions – and then finding more of them
Jon Rosser, Tim Eden and the World Child Cancer team have been working to make immediate changes to the low survival rate in Ghana and other developing countries. To accomplish this, World Child Cancer works in two ways. First, the organization creates and maintains twinning partnerships between cancer wards in hospitals of developed and developing nations. World Child Cancer also provides direct support for medical facilities in Ghana. This means funding access to essential medicines and services which would otherwise not be available – from chemotherapy supplies to nutritional supplements, as well as transportation costs, community awareness initiatives, medical equipment and even essential staff roles. “And to reduce the most common cause of initial treatment refusal or failure to complete treatment, namely lack of family finances, we have provided subsidies for some medicines,” Tim Eden adds.
In 2016, Sandoz began funding a pilot program to support World Child Cancer’s efforts in the Philippines; the program expanded in 2017 to additional nations, including Ghana. “In a country like Ghana, the whole access issue is more than medicines. It’s about creating awareness, then building capacity and then only comes medicines,” adds Peter Stenico from Sandoz.
In 2016, Sandoz began funding a pilot program to support World Child Cancer’s efforts in the Philippines; the program expanded in 2017 to additional nations, including Ghana. Tim Eden (right) from World Child Cancer tells Steffen Kurzawa (left) and Peter Stenico (center) from Sandoz about the challenges his organization faces.
Improving all access areas
The first area of access that must be developed is creating awareness. This includes being able to recognize the signs of cancer – and even giving the condition a name. While English is the official language of Ghana, there are more than 250 languages and dialects spoken in the nation.7 According to the Lancet Oncology, “Most indigenous African languages do not even have a word for cancer.”8
Tim Eden explains how World Child Cancer is addressing this. “We must concentrate even more on educating health professionals and the public about the signs and symptoms of childhood cancers, in order to speed up diagnoses and ensure that all children get a chance of treatment and potential cure.”
At Korle Bu, Dr. Lorna Renner and her team offer treatment to children with cancer and support to their families. Last year, a group of Sandoz representatives visited the hospital, located in Ghana’s capital, Accra.
A second area of access to improve is capacity building, meaning increasing the number of facilities and staff specializing in oncology. About 45% of the nation’s population still lives in rural areas, making access to fully-trained physicians more difficult. But should these children and their families come to a major medical center, as mentioned, there is a lack of physicians: overall, in Ghana, and Africa, medical school graduates have historically left to practice medicine in wealthier nations, at an estimate of 15% per year.9
World Child Cancer’s Jon Rosser points to the third access factor - improving the safety and efficacy of medicines generally, and particularly for children’s cancer. “If we can get patients into the medical facilities, counterfeit and contaminated medicines lead to poor outcomes and even public distrust of the medical community.”
Solutions that bring greater access to medicines will require joint efforts. In treating cancer, the matter of using uncontaminated, authentic drugs is particularly crucial, confirms Eden. “Pediatricians are worried in general about whether the drugs they receive are authentic. We need to focus on making medications available in the right quantities, accessible, affordable and of certified quality,” adds Eden. He states that World Child Cancer’s collaboration with Sandoz is particularly important to improving this.
The path forward
“This work would be really demoralizing if we didn’t see progress,” says Rosser. “But those days are behind us. We can make an impact now. And if we know we can help children and we know how, then we have a moral imperative to do so.”
In the long-term, more systematic change is needed to stabilize the treatment of children’s cancer, he adds: “We need to work hard with partners to raise the profile of children's cancer and advocate for governments to give more priority to childhood cancer.”
If we know we can help children with cancer and we know how, then we have a moral imperative to do so.
Peter Stenico from Sandoz agrees. “We are supporting discussions with governments, health departments and other companies to make access happen. In Ghana, we’ve been attending meetings with the government, the health department and regional groups. We’re all bringing in factors that must be considered to make pediatric oncology, and healthcare overall, available and affordable. More of us need to share resources and information, to establish a lasting solution.”
In the family room of Korle Bu Hospital, Rebecca and her mother Charlotte remain sitting on a cot. “Treating Rebecca will be a long process,” Charlotte explains as nurses enter. For the first time, mother and daughter both smile. “There is help,” Charlotte adds, as though she is reminding herself. “And I am hopeful,” she repeats, keeping Rebecca close.
http://stats.oecd.org/Index.aspx?datasetcode=TABLE3A In 2016, world aid amounted to USD millions 183, 065. Africa received USD millions 60,361. Ghana received USD millions 1,662. OECD database: Aid (ODA) commitments to countries and regions [DAC3a], last updated December 2017.