Awareness vs. Research

Raising awareness about NET cancer is a very important part of our Walking with Jane mission. We want a world in which no one hears what Jane and I heard when she was first diagnosed: “I’ve never heard of this type of cancer before.” We want a world in which all the zebras in medicine get diagnosed quickly and accurately.

…when breast cancer research gets the sniffles, NET cancer patients die.

But that being said, an accurate diagnosis means nothing when there is no cure for the disease. Knowing what is killing you may be important to some, but most of us hope that a diagnosis means we can start doing something positive to regain our health.

Research, not awareness, creates cures

Right now, if we do not discover NET cancer very early–when surgery is still a curative option–we have no cure. We have drugs that will slow the disease’s progress and relieve its symptoms–and we have more of those than we did even five years ago. We have a radiation treatment in trials, but our experience with it in Europe shows it, too, is only palliative.

Research will ultimately solve the cancer riddle.

If we don’t spend significant amounts on research every year, patients who are diagnosed in even the middle stages of NET cancer will continue only to know what is killing them.

The feel-good war on cancer

I am not interested in what a New York Times piece this weekend called a “feel-good war on cancer.” Unfortunately, for too many cancers, that is exactly what we are getting. I participate in the Relay for Life. I chair the Fall River event and will, again this year, attend a number of other Relays. One of the highlights of every Relay is the Survivor Lap–a single lap around the track made by those who see themselves as “cancer survivors.”

Being able to put a name on your torturer is a meaningless piece of knowledge…

 

I admit to being buoyed up by that lap every time I see it. I remember too well the days during which people only spoke of cancer in whispers–if at all; when we viewed cancer as an absolute death sentence; when no one had any real hope for anything that even looked like a cure. It was a time of joyless let’s pretend: if we did not talk about it then it would not happen to us.

A new game of let’s pretend

Unfortunately, today, we too often engage in a different variety of let’s pretend: we pretend that greater awareness of cancer is a cure for cancer; that somehow a mammogram does not just detect cancer, it cures it; that football players wearing pink in October magically transforms all breast cancer tumors into benign cysts that will vanish if we all cheer hard enough; that, in fact breast cancer is the only cancer there is and that being aware of it will eliminate it as a public health issue.

…we too often engage in a different variety of let’s pretend…

That all sounds crazy. And it is. We all know better. Yet we engage in those behaviors in exactly that way: even people who should know better. How else to explain that one of the biggest breast cancer charities spent $2.2 billion on awareness and patient education campaigns–and only $77 million on actual scientific research over the last six years?

The NET cancer survivorship folly

And they are not the only ones guilty of this. We measure our success against cancer too often by the numbers of people who survive five or more years after they are diagnosed. But if we diagnose someone at 65 with a form of cancer we do not know how to cure and they die at 70 or detect the cancer two years earlier at an earlier stage and they still die at 70 were we any more successful at curing them than we were before. Early detection without a cure to hand is a cruel joke.

…we viewed cancer as an absolute death sentence…

And measuring NET cancer survivorship against that five-year scale is an even more cruel joke. By that measure, Jane would have been a 30-year survivor. Being able to put a name on your torturer is a meaningless piece of knowledge absent a cure.

Research key to more than NET cancer

Research will ultimately solve the cancer riddle. But how rapidly that riddle gets solved depends entirely on how much we spend on research. The less money we spend on research the slower our progress at finding real cures. If we spent the $77 million on awareness and the $2.2 billion on research we’d likely be a lot closer to a cure for the breast cancers we do not know how to cure than we are.

…we have no cure (for NET cancer).

And maybe a few more scraps would fall off the table to fund research into NET cancer and the other so-called minor cancers.

Sex and the single cancer

But breast cancer is sexy: it sells appliances, cars and dresses–not to mention the ubiquitous pink ribbons. And it pays a lot of salaries for people who have nothing to do with research–and everything to do with marketing. We can pretend we have done something to fight cancer when we buy a pink-ribboned blender. Unfortunately, all we have really done is fund a hyper-awareness of one form of breast cancer that does nothing to actually find a cure for even that form of cancer.

…an accurate diagnosis means nothing when there is no cure…

As I posted elsewhere recently about the effect of the sequester, when breast cancer research gets the sniffles, NET cancer patients die. The reality of breast cancer research funding is that it has a bad case of the flu. What that means for the rest of us in the cancer war trenches, I shudder to think.