November 29, 2013 6:15 pm

World Child Cancer’s charity work in Colombia

María Ligia Suárez and her daughter Leidy at the National Cancer Institute, Bogotá©Paul Smith

María Ligia Suárez and her daughter Leidy at the National Cancer Institute, Bogotá

In the seventh-floor playroom at Colombia’s National Cancer Institute in Bogotá, María Ligia Suárez is huddled with her six-year-old daughter Leidy.

Leidy is being treated for medulloblastoma, a form of brain cancer, and has already undergone two rounds of surgery. Her partially paralysed body is strapped into a walking frame and she is half-watching Beauty and the Beast on a television. “I’m tired, Mummy,” she tells her mother every now and again.

María and Leidy are taking a brief break from a very raw battle for survival. The doctors have been frank in their prognosis: one more setback and the little girl is unlikely to live much longer. María is determined to fight for her child, however, and so she has made the sort of “drop everything” decision that parents all over the world have to make when confronted by a child’s serious illness.

The family’s entire life has been reoriented around Leidy. María has given up her job selling tamales to relocate to the capital and is renting a room near the hospital. For the past few months Leidy’s two-year-old sister has been living with her grandmother in the family’s home town, five hours west of Bogotá. Leidy’s father is out of the picture and does little to help, María says, and she is surviving on about $60 a week from family and friends. Half of this goes on rent.

Every visit to the hospital costs the equivalent of $6 on taxis there and back. “I cannot take her in a minibus,” María explains, almost apologising for what she can’t help but see as an extravagance.

Yet Leidy is “a source of strength for me and I for her,” María insists. “It breaks my heart because I know she could die any minute.” Leidy’s fight is a heartbreakingly difficult one but María has good reason to maintain some hope.

In many ways, Colombia is an example of what can be done in the developing world to make sure that children with cancer get the best care available. Daunting problems remain but in recent years the future has brightened for children with cancer in Colombia, thanks in part to its work with World Child Cancer, the charity partner for this year’s FT Seasonal Appeal.

The country’s National Cancer Institute is now far better resourced than many other facilities in the developing world. It houses some of the best doctors in Colombia and the paediatric unit has 26 single rooms and a new intensive care unit. Over the past four years it has benefited from a special partnership with World Child Cancer that has seen medical staff receive valuable training and mentorship from some of the world’s leading paediatric oncologists as part of a “twinning programme”.

World Child Cancer was founded in 2007 by the late Geoff Thaxter and colleagues from his time at the UK’s largest children’s cancer charity, Clic Sargent. Thaxter, who lost his own daughter to cancer, wanted to help children with cancer in developing countries, where little treatment was available. This year WCC will help more than 3,000 children in nine countries and hopes to reach 10,000 children annually by 2018.

The Bogotá institute is a long way from catching up with the results seen in places such as the UK where eight in 10 children diagnosed with cancer survive, but the outside help is making a difference. Since WCC and the US-based Dana-Farber Cancer Institute began working with National Cancer Institute doctors in 2009, the survival rate for cases treated at the Bogotá facility has risen from less than 30 per cent to better than 65 per cent.

Much of the change is attributed to the work doctors have done to reduce the number of families who abandon treatment. Before the partnership with WCC, as many as a third of children diagnosed with cancer abandoned treatment – usually because of the financial strain cancer puts on impoverished families. This year the figure is expected to be close to 2 per cent.

The number of deaths attributed to the toxicity of chemotherapy has also been vastly reduced. Before 2009, when the WCC/Dana-Farber project began, 30 per cent of patients’ deaths at the National Cancer Institute were attributed to toxicity, according to WCC figures. This year that is expected to be just 1 per cent.

“We are doing very good things here,” says Dr Martha Piña, one of the institute’s paediatric oncologists. There is, of course, more to be done, and Dr Piña and her peers bemoan the health system in Colombia which means parents of children with cancer often have to fight to get treatment.

A law passed in 2010 gives all children with cancer a right to integral treatment and requires Colombia’s health insurance companies to pay costs without delays. Such political gestures can have a huge impact on the survival chances for children with cancer, says Dr Andreas Ullrich, lead medical officer for cancer control at the World Health Organisation. He cites the example of Peru, where the treatment of childhood cancer is free and the government has opened a facility in Lima offering first-world treatments such as bone marrow transplants. “They made it very clear that if you have political will, if you have political interest, in cancer it makes a lot of difference,” Dr Ullrich says.

In Colombia, doctors and patients’ parents complain that the law is often ignored. And, they say, it does little to address the economic burden of cancer on poor families. Child patients are often bounced around the system, receiving fractured care at a time when their lives depend on it.

“The twinning programme [with WCC] has worked but we have already reached a ceiling,” Dr Piña says. “Now we have physicians 24 hours a day, we have a new [intensive care unit], we have an established programme to avoid [patients abandoning] treatment, education, good oncologists – a lot of things we did not have before. But the law limits us.”

Alejandro Gutierrez, a professor at Harvard Medical School who has worked with the Colombian institute as part of the WCC/Dana-Farber partnership, voices frustration with the system. “The terrible part is that all of the elements are in place to cure the majority of children with cancer in Colombia,” he says. “Yet the people who are profiting from the current health delivery system seem to have no misgivings about letting children die of curable diseases to maintain their profit margins.”

The frustration is shared by the parents of patients at the Bogotá institute. They complain that they have been forced to fight their health insurers to secure proper care for their children. All have seen delays during potentially crucial treatment, and all tell stories of a healthcare system that has at some point let their children down. The National Cancer Institute is, however, a ray of hope in this dysfunctional system.

In June, when 11-year-old Donoban Steep López came down with flu, his parents thought nothing of it, largely because his mother and 15-year-old brother were ill at the same time. Donoban, however, didn’t get better. “No paediatrician was able to tell us what he really had. They sent him home a couple of times, saying it was nothing but a viral flu” says Donoban’s father, Alfonso López.

Eventually, a doctor ordered blood tests, which apparently confirmed the diagnosis but Donoban deteriorated and the mystery grew until a relative who is a nurse took the test results to a paediatrician at the private clinic where she works. “Two hours later, at 8pm, we got a call saying we needed to take Donoban urgently to the [emergency room],” Mariela Sierra, his mother, says. “And at 3am they told us he probably had leukaemia.”

That was five months ago. Donoban has acute lymphocytic leukaemia, and the diagnosis brought significant change for the family, who live in one of Bogotá’s poorest neighbourhoods. Alfonso, who used to earn some $300 a month as a waiter now earns half that, having cut down his working hours to take care of his son.

The battles with bureaucracy continue and the family occasionally has to wait up to two weeks for approval for medicines. But in the care of the National Cancer Institute, Donoban’s fightback is well under way. In the institute’s playroom, wearing the yellow jersey of Colombia’s national team and playing a football game on an Xbox, Donoban is optimistic: “I feel well now [and] I want to go back home and play football.”

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Letter from the editor

This year the staff of the Financial Times have chosen to support World Child Cancer (WCC), a London-based charity that does impressive work in the developing world. It is estimated that in those countries about 100,000 children, who could be saved with comparatively simple treatments, die unnecessarily from cancer each year. WCC’s mission is to improve the diagnosis, treatment and care for those children.

FT reporters have visited the charity’s projects in Myanmar, Colombia, Ghana and Malawi. We will publish their work in the FT over the next six weeks, aiming to raise awareness and funds for the charity. Allison Ogden-Newton, chief executive of WCC, is hopeful that funds raised can transform the charity. “With the help of the Financial Times and its readers we will achieve a step change in overcoming the crisis in childhood cancer in the developing world.”

Since 2005, the FT’s seasonal appeals have raised more than £11m. WCC has already received pledges of matching funds from the UK government, Celgene, the Switzerland-based pharmaceuticals company, and the Vitol Foundation.

Justine Greening, secretary of state for international development, says the British government will match all UK donations to WCC. “We will help them improve diagnosis, treatment and care for thousands of children in Bangladesh and Ghana who would not otherwise get help. This means their families can focus on earning money and lifting themselves out of poverty for good,” she says.

Samantha Pearce, general manager at Celgene, says that with the additional money “the work of this admirable charity will give hope to even more of the world’s poorest children”.

I encourage you to follow our reporting of World Child Cancer’s activities at ft.com/appeal and to give generously to a life-changing cause.

Lionel Barber

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