Research costs money

Everyone wants a cure for cancer. But virtually every cancer requires a different cure. What works on one form of breast cancer doesn’t always work on another form of breast cancer, let alone a melanoma, lung cancer or pancreatic cancer. While people are part of the answer to cancer, so is money.

Research is blindingly expensive. Last year, the US government alone spent $699 million on breast cancer research–and has spent nearly $4.5 billion since 2012. That does not include the billions raised and spent by foundations dedicated to that form of cancer. We have some breast cancers we can cure, assuming we catch them early enough, but we can’t cure all of them.

Money is the root of it all

Compare that to the roughly $15 million total from both government and private sources for NET cancer this year and you’ll begin to understand part of why we are not swimming in NET cancer therapies. Add to that the reality that NET cancers are unlike almost any other form of cancer we’ve encountered and you have an iron-clad reason for the frustration both patients and researchers feel.

In addition, that $15 million number is a huge jump from the roughly $7-8 million raised and spent from all sources in 2015. Numbers from prior years are actually far worse. In fact, there was no federal money for NET cancer research from 1968 to 2008–and very little private money, either.

Weighing the voices

That reality both terrifies and angers me. We spend more per diagnosed patient on prostate cancer, on lung cancer, on breast cancer–than we do on NET cancer–and it isn’t by a few dollars. What we spend on NET cancer does not amount to a rounding error on what we spend on any one of those forms of cancer.

But the logical part of my mind does get it. When we can see tens of thousands of cases of those diseases–compared to roughly 16,000 new diagnoses of NET cancer every year–the shouts of those patients and their families drowns out other voices in the ears of funders.

The myth of the secret cure

This summer, I was out putting up posters for our annual miniature golf tournament. I went into one shop to ask if they could put one up for me. Now sometimes chains have policies against advertising local events. Sometimes stores have nowhere to put up a poster. Sometimes they limit things to local religious groups or veterans’  groups–and I get that.

But this man’s answer stunned me: He told me he believed, given all the money we’ve spent on cancer research, that we already have a cure for cancer–that the drug companies are holding out on delivering it because they are making so much money on the drugs we have that delivering a cheap cure is not in their best interests.

In the weeds

I’ve spent a lot of the last six years learning about cancer and how complex a thing it is. I spend a lot of time with oncologists and researchers. I see how the loss of each patient tears them up. And I know if a cure existed and drug companies were withholding it, those doctors and researchers would not let that stand.

So where does all that money go? Let’s start with what it takes to run just one small lab. I got to spend one whole day last spring in a research lab at the Dana-Farber Cancer Institute in Boston. I was there to observe and take pictures for a project we were working for 3-in-3: The Campaign to Cure NET Cancer–a fundraising project I serve as volunteer chairperson for.

The cost or running one lab

Eight people worked in that lab on a variety of research projects. That day, most were working on NET cancer research of one kind or another. They weren’t testing drugs–they were doing the kind of basic scientific research that unravels how NET cancer works. Their work may uncover a way to cure NET cancer eventually–or, more likely, another way to slow the disease down so that patients can live a longer time with a better quality of life.

They weren’t working full-time on NET cancer. DFCI’s NET cancer program doesn’t yet have the money for that. Running a single eight-person lab costs between $2.8 and $3.8 million, depending on what kinds of supplies and equipment the work they are doing requires. About half that amount goes to salaries and benefits.

What $15 million can buy

What that means, in funding terms is that if we took all the money available for NET cancer research in the US–that $15 million we take about above–we could fund about four full-time labs.

But we don’t get to spend all of that money on basic research. Drug companies won’t pay for a drug trial until they are fairly certain that trial will be successful. Phase 1 trials–and many Phase 2 trials–have to be funded from that $15 million as well. Even a small trial can run to $3 million.

Increase the cash, increase research

Needless to say, we can run a lot of trials and fund a lot of research labs with $1 billion a year. But all that money has not 100 percent cured breast cancer or lung cancer or prostate cancer–nor even come close to doing so.

If we want to really move out of the Dark Ages of NET cancer care, we need to find a lot more money for research than we are currently coming up with. Regardless who wins the election next week, we can’t count on much from the federal government. We need to figure out how to raise far more private money than we currently do.