The Invisible Children With Cancer

Enlarge this image toggle caption Kateryna Kon/Science Photo Library/Getty Images Kateryna Kon/Science Photo Library/Getty Images

When childhood cancer is diagnosed early and treated effectively, the survival rate is impressive. In the United States, for example, the five-year survival rate for children with cancer is 80 percent.

"The survival rate is much lower in many areas of the world," says Lisa Force, a pediatric oncologist at St. Jude Children's Research Hospital and an author of a new report in The Lancet Oncology that calculates the number of years of healthy life lost due to childhood cancer in 2017.

The number is astounding: 11 million years lost, due to both mortality from cancer and to complications that children experience even if they survive cancer – when you're done with treatment you're at high risk of nerve damage and of chronic diseases that like congestive heart failure.

And of the 400,000 cases of childhood cancer diagnosed each year, 140,000 of the children die.

Yet in many poor and middle-income countries, there is not even a national policy stating how childhood cancer should be addressed, says Force. Creating that kind of policy is a goal of the World Health Organization and St. Jude Children's Hospital, who have partnered to achieve the U.N.-mandated goal to improve childhood cancer survival rates to 60 percent globally for the six key childhood cancers by the year 2030. Currently, the survival rate in low- and middle-income countries is reportedly only 37 percent on average and possibly as low as 20 percent, says a spokesman for St. Jude.

We spoke to Force about the report. This conversation has been edited for length and clarity.

How can you come up with data on childhood cancer when some countries don't keep registries of cases and deaths?

We start with the number of deaths from cancer captured in systems around the world, from verbal autopsies and from cancer registration systems which often capture cases or diagnoses. To estimate in areas where we don't have data, we essentially will borrow information from either surrounding areas or regions.

To reduce the years lost to death and other disease, you stress that speedy diagnosis is necessary. Why is that?

Childhood cancers generally progress quite rapidly. In the vast majority of cases we know they'll be fatal without quick diagnosis and treatment. Improving childhood cancer survival will require well-functioning health systems.

Are early diagnoses possible in low- or middle-income countries?

It's a challenge. You might not have a health clinic nearby. Or even if you do have a clinic and a parent brings in a child, the symptoms might present similarly to other diseases – lymph node swelling may be mistaken for something like TB; or leukemia presents with several blood cell lines being down, which may be mistaken for malaria, which may also do that.

Diseases like TB and malaria and HIV claim many lives among children and adults in the developing world. Is it more important to devote funds to those diseases than to childhood cancer?

We're certainly not saying that childhood cancers are more important than any other diseases. It's more to say that cancer has not been discussed when policymakers create frameworks that address diseases in children. Cancer is often not even brought to the table as something to consider. Or when developing a national cancer control program many governments don't include children at all in these plans. We also know that in many of these settings, the burden of infectious diseases is declining over time as countries get better at treating them, and the burden for non-communicable diseases like cancer rises correspondingly.

What's a first step a country can take to address childhood cancers?

The first step is to find out what your country is currently doing about childhood cancer and what the local needs are. Looking at how childhood cancer is addressed in national policies and whether the policies are being implemented well — and speaking with local clinicians — is key

And what kind of programs would be helpful?

An appropriate referral pathway, education of front-line providers to know what symptoms to look for, labs that will help you diagnose cancers early, and effective treatment – chemotherapy and radiation and surgery.

Any other suggestions for addressing pediatric cancer?

[I would recommend] multidisciplinary clinicians trained in pediatric oncology care, and support systems to reduce toxicity from treatment and [to address] abandonment of therapy.

What role can parents play?

I don't want to make everyone scared and think that everyone has cancer. But I would just generally say that there are signs to watch out for – continued fever, weight loss, night sweats, fatigue, extra bleeding, a mass that presents somewhere, external or internal. And if something doesn't feel right with your children, if you seek medical care and you don't feel someone is listening to you appropriately, I recommend being the best advocate for your child you can be, seeking different opinions, going back to a provider.

One of the messages I get from your report and your comments is that children with cancer are invisible, in a way, in many countries.

Right, exactly. I hope this report emphasizes that children get cancer around the world, regardless of whether there is a cancer registry [keeping track of cases in a country] or not. These children are vulnerable and neglected in policies that address cancers. As a global community, we need to do a better job of including them in our framework for improving our health systems. The tragic thing is for cancers that are very curable in high-income countries, the survival number is much lower in many areas of the world. It's an unfortunate reality right now that an important prognostic indicator for survival is where that child is living.