Why we plan

Planning and goal setting are in my blood. Three of my grandparents started life as farmers. The fourth was a school teacher. All of them knew that failing to plan is a plan for failure–and it is a lesson they drilled into their children and grandchildren until we all became planners no matter what line of business we went into.

…local and regional chapters that had extraordinary independence.

Every plan requires an understanding of what already exists. It requires we look as coldly as possible at the strengths and weaknesses that exist in the current situation. Over the last three years, part of my work has been to look at what we are doing against carcinoid/NETs with a critical eye–and over the last several weeks in this series I’ve outlined some of what I have seen.

Knowing the ground

Some might say I’ve been fairly critical of what we have been doing. I am sure that rankles some who have worked in this particular vineyard a lot longer than I have. It is not that I am unaware of what others have accomplished to this point in the face of the great difficulties we confront. In the forefront of my mind is always the simple fact that for 40 years carcinoid/NETs patients suffered from neglect that was anything but benign. When I look at what the Carcinoid Cancer Foundation alone accomplished with virtually no resources when compared to the better funded cancers, I am astounded.

…failing to plan is a plan for failure…

There are things we are doing remarkably well in the fight against carcinoid/NETs. We have an extraordinary number of high quality online and offline support groups for both patients and caregivers, a number of caring and high quality physicians and researchers, and a community of small foundations working together to improve the situation for everyone.

Plan objectives

What we can do, however, is limited by the resources we have to work with. So long as our focus remains largely within the carcinoid/NETs community alone, we are not going to have the financial resources we need if we are going to find a cure. To do that, we need to reach the population that has never heard of carcinoid/NETs–and never will if we do not develop–and implement–a plan to get their attention. The truth is we do a very good job of talking among ourselves–but a very poor job of moving those outside our specific group.

…I’ve been fairly critical of what we have been doing.

While some carcinoid/NETs patients are well off, most are not. They don’t have much in the way of uncommitted money they can afford to donate to finding a cure. This is not a cheap disease to treat. And unlike many cancers, it does not kill or cure quickly. It is an illness that can leave even upper-middle class patients bankrupt long before it is done. If we are to find the resources we need to develop a cure, we must find other sources of income beyond carcinoid/NETs patients and their caregivers.

Plan priorities

Patient support is extremely important and it needs to remain a priority. Educating primary care doctors about the disease so that they know to order the right tests at the right time and reach out for support when they need it, also needs to remain a priority. We are doing a good job in these areas–but that job is far from done. Less than 10 percent of carcinoid/NETs patients are in dedicated support groups. Doctors and nurses who have not heard of the disease remain the rule rather than the exception. The critical shortage of specialists and dedicated carcinoid/NETs programs leaves too many patients without easy access to high quality treatment.

…it does not kill or cure quickly.

The good news is we have many people focused on the first two issues. The last of those three needs an equal commitment. But all require resources we do not currently have. We need to grow awareness in the general population in order to create those resources.

Plan obstacles

That effort begins with crafting images and messages that will move the general public and get them to understand the seriousness of what we, as a community, face. While things like Netty play well among patients as gallows humor, they do not present the image we need if we are going to sell the general public on the seriousness of what we face. They play into the “but-you-don’t-look-sick” narrative too many patients have experienced. “If you can joke about it, it can’t really be that bad,” is not a message we want to send.

Patient support is extremely important…

Periodically, I hear people urging a “manage the disease” approach. But this diabetes analogy is not helpful, either. While many of us would settle, perhaps, for chronic-but-manageable-disease status as an improvement over what we have now, perpetual bloating and diarrhea in no way resemble low blood sugar. I have had several close friends with juvenile diabetes and I know it is no joke–but I don’t believe any of them would trade their diabetes for carcinoid/NETs–even a carcinoid/NETs as well controlled as their diabetes. We need the general public to understand we need a cure, not a management plan.

Plan participants

We need patients to be upfront about what dealing with carcinoid/NETs is about. We need to come out of the closet and talk about the symptoms of the disease: the diarrhea, the bloating, the gas, the pain, the flushing and the fainting and the insomnia–and all the things that go with those symptoms. And we need patients to do so, not in the safety of a support group, but in front of the general public.  That will require Betty Ford-like courage, but it needs to be done.

…crafting images and messages that will move the general public…

And we cannot wait for a celebrity to emerge to do that job. Steve Jobs and Dave Thomas had the opportunity to play that role but decided against it for the same reason many patients continue to do so. It is not just that announcing one has an eventually fatal disease will have an impact on stock prices and personal wealth; it is also that the symptoms of the disease have all kinds of potential for embarrassment.

Finding funds

We need to create sustainable research incomes for the programs we have now that are independent of government and pharmaceutical company support. I have seen enough of how both those systems work to understand that neither is willing to support efforts that are not a virtual lock-down success from the start. That means basic research is rarely funded by either one. With the current budget situation in Washington and the demand by investors on Wall Street for immediate profits, that is not likely to change any time soon. Indeed, it seems likely things will get worse on this front before they get better.

We need to come out of the closet…

We need, then, to create a vehicle–or vehicles–that looks outward more than inward–that will carry our message to the larger public. Its construction and thinking likely needs to be somewhat different from the things we have currently in place that are aimed largely at those already in the carcinoid/NETs tent because they are in some way dealing with the disease.

Plan from history

My instinct says there are things we can learn from what the Cystic Fibrosis Foundation, Komen and similar group have done. But I think the best model may be what happened with the American Cancer Society in the 1950s and 1960s. The perception is it was a strong, centrally run organization–and there is some truth to that. But it was also an organization divided into local and regional chapters that had extraordinary independence. It was far more grassroots in its structure than it at first appears.

…basic research is rarely funded by either one.

Tomorrow, I’ll outline what I think our vehicle should look like and what kinds of things it needs to do in order to attract broad and ongoing public support for killing carcinoid/NETs.

(Editor’s Note: This is the twelfth in a series of pieces that will approach the problem of carcinoid/NETs not as a medical problem but as a marketing problem. If we are going to increase funding for the disease, we have to think of it as something other than a medical issue. We need to make it a human issue for the general public. In the final parts of this series, we’ll outline the beginnings of a Marketing Plan for NET cancer.)