An influx of cash

Fifteen million dollars sounds like a lot of money. And yesterday’s announcement by the NET Research Foundation of a grant in that amount, spread over three years, from the Margie and Robert E. Petersen Foundation, is huge news. It represents the largest single donation for NET cancer research in history. In combination with the federal SPORE Grant announced for the University of Iowa, those two pieces of new funding nearly equals the amount of money raised and spent on NET cancer research last year from both federal and private sources. Assuming nothing changed in terms of private giving and NCI funding, NET researchers would see $15-16 million to work with next year.

We must, as a community, rise to this new challenge.

But we can’t count on that being the case–especially given that National Cancer Institute support for NET research is actually dropping. The danger here is that we all look at that big chunk of change and don’t push as hard. Instead, we need to seize this event and make it the starting point for our own ice-bucket challenge moment. We need to do more than strive to match last year’s numbers of $8-10 million. We need to try to double that amount above and beyond this sudden influx of new money.

Transformational moment

Ron Hollander, the director of the NET Research Foundation, called the Petersen Foundation Grant “transformational” and I called it a “game changer.” And it is both those things. But to take advantage of that grant’s full potential, we all need to make an increased commitment to do whatever we can to help.

…we need to seize this moment…

I say that with the full understanding that many patients and their families are facing difficult financial times. There is nothing cheap about the treatments we have for NET cancer. Too many people face enormous monthly co-pays that leave them choosing between food on the table for their families or the medications that make life bearable. Some are losing their houses as a result of having to make those kinds of choices.

The restraining issue

But those of us in better financial shape do need to do what we can–both for our brothers and sisters in need and to support the ongoing research that we can hope will lead to a cure. Neither one of those things is an easy task–and I have no good answer to the issues the cost of treatment raises.

Too many people face enormous monthly co-pays…

What answers I do have to those issues require political lobbying work that Walking with Jane’s non-profit status prevents me from raising here in any detail. But it is abundantly clear that we cannot rely on charities or churches to solve that problem. If we could, I would not read the daily litany of those whose finances this disease, among so many others, has ruined.

The research campaign side

On the research funding side, there are things Walking with Jane and other regional, national and global NET cancer groups can do. I can’t tell any other group what to do with its efforts in this regard. But I can set a clear path for Walking with Jane and for the NETwalkers Alliance Jimmy Fund Walk team I serve as captain for.

Neither one of those things is an easy task…

Over the last few weeks I have thought about the goals for the Walk team. I initially set goals of 100 walkers and $100,000 for the NETwalkers Alliance back at the beginning of January. I picked those numbers because they were nice round numbers. I knew they would be a significant challenge to reach: last year we had but 33 walkers and raised nearly $68,000.

New numbers for new times

But numbers should always have some symbolism to them–and those numbers lack any symbolic quality beyond being even. Estimates of the number of diagnosed NET cancer patients in the US range between 111,000 and 120,000–and the more I think about it, the more I think our team goals need to reflect those patients.

…I can set a clear path…

So, today, after asking key members of our team for their opinions, I am resetting our goals to 115 walkers and $115,000. Those numbers are based on the midpoint of the best estimates available for the number of diagnosed patients. Each walker will represent about 1000 patients–and we will raise $1 in honor of each of those patients.

Accepting the challenge

Reaching those goals will not be easy. But President Obama challenged the nation in his State of the Union Address to undertake a “moonshot” to cure cancer. President Kennedy, in launching the original “moonshot, said, “We choose to go to the Moon in this decade and do the other things, not because they are easy, but because they are hard; because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one we intend to win…”

…numbers should always have some symbolism…

That is very much a sentiment with which I agreed then–and with which I equally agree now. We must accept this challenge, in our time, in our place; we must be unwilling to postpone our efforts; and we must really intend to win. People’s lives depend on our efforts–and we must not let them down.

Other efforts to support research

I’ll also be working to boost the numbers of riders–and the funds raised–by the NET Research Foundation’s Pan Mass Challenge team once it is organized. I may even jump on a bike myself, if I can do so in a way that adds to that event without detracting from our Walk efforts. Those funds go to NET cancer research at Dana-Farber as well.

Beyond that, we need to find a way to get local, regional and national celebrities more involved with our efforts. Each year, for example, I ask local and regional politicians to join us for the Walk. They generally politely turn me down, but I’ll keep asking. At the suggestion of two patients, we’ll try again to get the attention of local sports franchises and the leagues they belong to. An earlier effort in that direction didn’t ultimately go anywhere, but the squeaky wheel is more likely to be heard than the silent one

Making the real effort

But our Marathon Walk must be only one part of the effort. It is just one part of 3-in-3: The Campaign to Cure NET Cancer Dana-Farber launched in December. And that campaign must be just one part of a larger effort, organized in region after region in support of local NET cancer centers and the research they are doing. And all those efforts must be only part of a national effort spearheaded by organizations like the NET Research Foundation and the Carcinoid Cancer Foundation. And finally, that national effort must only be part of a global effort in nation after nation and continent after continent.

We must accept this challenge…

But this must be a sustained effort over as long a period as it takes. We have spent billions of dollars on breast cancer research. We still have no reliable cure for many forms of that disease. What we have learned in recent months about NET cancer seems to indicate that it is perhaps even more complicated than breast cancer. Finding an answer to this riddle will not be easy–and it is unlikely to be cheap.

The end of the beginning

The Petersen Foundation grant has the potential to change NET cancer research in significant ways. But if that potential is to be fully reached we must view it as the beginning of a change in our fortunes–and not as an ending. We must now seize the opportunity that grant creates and exploit it–not only in the laboratory, but in the public arena as well.

…this must be a sustained effort…

We must, as a community, rise to this new challenge. We must do so not only with our money, but with our muscles, our sweat, our minds, and our bodies. Let’s make this year the breakthrough moment we need–and then build on that breakthrough to create the full resources we need to cure this disease.