Hammering the awareness nail

NET  cancer patients across the world have worked for years to grow awareness of the disease among both doctors and the general population. I was reminded of that by a thank you letter I received this morning for a donation I personally made to the Carcinoid Cancer Foundation last month. They’ve been hammering away at that message for nearly 50 years.

This cannot be about redividing the pie…

I’ve been hammering at it for just five–and I’m about as frustrated by it as anyone can imagine. There has been progress–but not enough. The problem is worse than the popular slogan among patients and foundations: “If you don’t suspect it, you can’t detect it.” The truth is, you can’t suspect something you’ve never heard of–and for too many practicing physicians, that ignorance remains a big piece of the problem.

Awareness limits and builds resources

But lack of awareness, which I tried to address in my last post, doesn’t just have an impact on diagnosing the disease; it also has an effect on our ability to put the pieces together to find a cure. Scientists can’t study something they don’t know exists; people won’t donate money to a cause they have no knowledge of. And even if researchers know about a problem, they can’t do much if there is no money available to fund the research.

…ignorance remains a big piece of the problem.

I can’t speak for other patients and caregivers, but part of me would rather not have known what was really wrong with Jane, given we had no cure for what ailed her. Had she simply died following surgery after a diagnosis of idiopathic right-side heart valve disease, it might have made both our lives much more simple. There is nothing emotionally good that happens when you are told there is no cure for your disease, at least that’s how part of me feels about it.

Limited resources, limited ability

And five years after Jane’s death that is–in most cases–still the reality. We have more ways to slow the progression of the disease, we have more ways to ease its symptoms, but a cure remains elusive. And that, in part, has to do with lack of resources. Because we don’t have the money to pursue multiple avenues at once, we have to choose from among a number of good ideas which one to back–and if we choose the wrong one, there really is no evolving Plan B.

…part of me would rather not have known…

For example, in the summer of 2011, I made a trip to Dana-Farber to tour the lab where they were doing research on NET cancer. They had set up a slide with a NET cancer tumor they had managed to grow in the lab. As I looked at it through the microscope they told me about the tiny cells connected to the main body of the tumor. They explained these were feeder cells–so-called because if you didn’t leave them attached to the newly harvested tumors, the tumors would not grow in the lab.

What we do without

Had we had money to fund the research at the time, we might have explored more quickly what was going on with those feeder cells–more properly called stromal cells. But the pittance we had for pure science was already committed to DNA research on the main body of the tumor. Looking at those cells had to wait.

…a cure remains elusive.

It shouldn’t have had to–any more than any of a dozen other ideas shouldn’t have had to. But when you have not merely limited, but practically no resources to work with, you have to make choices about where your money goes. Like a poor family, you look for where you think you can get the most bang for your buck based on the limited money and knowledge you have. Sometimes, you get lucky; many times you don’t.

The price of limited resources

But for NET cancer researchers, that is the reality. It is a reality that likely has cost more than a few lives–and will continue to cost lives if we don’t find ways to change it–and change it significantly.

Looking at those cells had to wait.

Walking with Jane has not been hugely successful in raising large sums of money. Over the last five years, through teams we’ve organized and donations I’ve personally made, we’ve generated nearly $350,000–most of which went to NET cancer research. (We also sponsor scholarships at the high school where Jane and I worked and at her alma mater, and have a successful Relay for Life team whose money goes to support American Cancer Society programs.)

Every dollar counts

That seems like a goodly sum–and given our size and resources, it is–but compared with what it costs to fund even a small Phase I trial, it isn’t very much. And given the most conservative estimate of what it will cost to find a cure–about $100 million–it isn’t much money at all.

…that is the reality.

But, as I say to potential donors everywhere, given how little we actually spend on NET cancer a year, every dollar counts. For example, I am told my initial commitment to Dana-Farber meant we went from one full-time NET cancer doctor in the clinic to two. My annual commitment was quite small, comparatively.

Eventually, you’re talking real money

Our local fundraisers are tiny. The biggest local event Walking with Jane held last year only raised about $3200. But we did ten of them. And those events inspired people around New England to hold events of their own–leading to $67,800 being raised by the NETwalkers Alliance team for NET cancer research at DFCI through the Jimmy Fund Walk.

…every dollar counts.

In 2016, Walking with Jane will add two more events to its local list and focus nearly our full effort on NET cancer research. That means we will cut back on our commitment to the Relay for Life so that we can devote more time to what really is our reason for being: Finding a cure for NET cancer–and doing it sooner rather than later.

Offering knowledge

We will also offer our fundraising expertise to other members NETwalkers Alliance as well as other teams committed to NET cancer so that we continue to grow the pool of money available for research. And if someone asks us for help outside the New England area, we’ll do that, too. We see a lot of what we have done as piloting ideas we hope others will want to adopt.

Our local fundraisers are tiny.

For now, the majority of our direct fundraising efforts will be directed at DFCI. However, we want to help other cancer centers with NET cancer programs develop more and better local fundraising programs of their own. We can best do that by sharing knowledge of things we have done while continuing to grow our own local capabilities.

Helping NET cancer centers grow

We don’t want to take away from what organizations with national and international reach are doing. Rather, we want to supplement their efforts by helping more regional organizations become better at supporting local NET cancer centers that are really hurting financially. We need to grow those centers so that they do not see reductions in their budgets. One way to do that is to create robust, local groups that can create greater local support–both financially and vocally.

…we continue to grow the pool of money available…

We want our work with 3-in-3: The Campaign to Cure NET Cancer not only to build resources for NET cancer research at DFCI, but also serve as a national–and international–model other NET cancer centers and their supporters can use to further increase funding, awareness and support for NET cancer researchers, patients, and caregivers. If we can inspire even five similar efforts at other cancer centers, that could lead to a substantial increase in NET cancer spending in the US and elsewhere.

Growing the resources pie

But we need to do that by attracting new money. We don’t want to see declines in support for NET cancer research elsewhere as support for these programs increases. Nor do we want to see declines in spending for other cancers. This cannot be about redividing the pie that is already too small–it needs to be about growing the size of the pie. To do that, we need to work together.

If we can inspire even five similar efforts…

A year ago, I made a series of proposals for marketing NET cancer. In the final post in this series, I’ll revisit those ideas and look at where they fit into the next year–and the next five years.