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Voices & Opinion

我儿子得了一种罕见的癌症。 I Understand If Taxpayers Aren’t Providing Funds to Research It Yet

As a father, I want the world to spring into immediate action to save my boy. As a global citizen, I want to save the lives of as many children as we can

The world is full of ill omens when your child has cancer.

My son does. About three months ago, doctors identified a lump growing on his chest wall as an aggressive type of cancer accompanied by an uncommon genetic mutation. So it felt like a particularly bad sign when news broke over the holidays that the casualties of the budget deal reached to avert a government shutdown included bills that would have provided funding to spur research into rare forms of pediatric cancer.

The news came as a blow to parents like me and to the friends and families of children suffering from this cruel disease. The last three months have been the hardest of my life, as we acclimate to a tenuous prognosis and begin to witness the damage an aggressive chemotherapy regimen does to a small, vulnerable body. So I understand the outrage and the desire to do something right now to help suffering children.

I also get the need. We know little about the best ways to treat my son’s tumor because there has been only limited research done on the type of cancer driving its growth. There are currently no clinical trials running in which he could participate. And funding for pediatric cancer research in general is scarce—it makes up roughly 4 percent of our national cancer research budget—and vanishingly so for more uncommon [types of cancer]. So the proposals that were cut from the spending bills, along with other, more ambitious ones like them, seem of primary importance.

But here’s the thing: I don’t think they are. As a father, I want the world to spring into immediate action, to mobilize as many resources—intellectual and financial—as it can to ensure that my precious child has children and grandchildren of his own.

Yet, as a taxpayer, a global citizen, and a person who tries to live ethically, I contend that our responsibility is not to save the life of my child, but to save the lives of as many children as we can—to eliminate a maximum amount of pediatric disease and mortality. (Or, to borrow a phrase from the philosopher Peter Singer, we must do “the most good you can do.”) And if that is our responsibility, then we shouldn’t begin with my son.

Let me see if I can explain. My son’s disease is extremely rare. According to our doctors, maybe only 50 kids in the United States receive his diagnosis every year. Compare that with the tens of millions of children who contract malaria every year—roughly a half million of whom die annually.

And then consider the fact that while my son’s cancer doesn’t even have a standard treatment protocol, we now have an effective vaccine for malaria. It’s extremely painful to watch my son suffer from a disease without a proven treatment. But it must be downright agonizing to watch your child die from a disease for which there is a good vaccine—that you can’t get. So while I crave bills devoted to enhancing rare cancer research, I know that what we really need is legislation that expands vaccine access in the developing world.

And that’s just looking at the number of cases. If we look at cost, the argument only gets stronger. Scientists have just recently identified the genetic mutation that renders my son’s cancer so dangerous. That means that the research that would eventually lead to more effective treatments hasn’t even begun. And if and when that research happens—which I hope it eventually does—it will be extremely expensive. According to work recently published in the Journal of the American Medical Association, the median cost of a common type of clinical trial is $19 million. And clinical trials represent just one small part of the cost of bringing treatments to fruition.

Such numbers dwarf the cost of treating other maladies. Take vitamin A deficiency (VAD) as just one. According to Helen Keller International, 100,000 kids die every year from VAD-related causes. And do you know what a high-concentration vitamin A supplement costs? One dollar and 23 cents. (Two doses per year are enough to remediate VAD for one child.)

If world governments were devoted to providing all necessary funds to end preventable pediatric disease, they could tackle malaria vaccine distribution and rare disease research—along with a host of other causes. But they’re not, and funds are limited, so until they’re interested in ponying up more money, it’s important that they prioritize causes that are less expensive and more impactful for more people.

All of this is to say that while my son’s disease has changed my life, it hasn’t changed my own giving patterns. I don’t donate to cancer research; I continue to give to the Against Malaria Foundation, Helen Keller International, and other like-minded charities. And if all of this feels like so much moral showboating, please know that it’s not. I think a world in which we all focus not on our kids’ suffering but on all kids’ suffering is one in which malaria is a thing of the past and cancer research is amply funded.

I want to live in that world. And I want my son to, too.

Joshua Pederson (GRS’08) is an associate professor of humanities at the Boston University College of General Studies and the author of Sin Sick: Moral Injury in War and Literature. He can be reached at pederson@bu.edu. This column originally appeared in the Boston Globe on January 22.

“POV” is an opinion page that provides timely commentaries from students, faculty, and staff on a variety of issues: on-campus, local, state, national, or international. Anyone interested in submitting a piece, which should be about 700 words long, should contact today@bu.edu. BU Today reserves the right to reject or edit submissions. The views expressed are solely those of the author and are not intended to represent the views of Boston University.