Public awareness strategies key
I spent yesterday in Boston in a variety of meetings about NET cancer fundraising and awareness. My morning meeting involved discussions about a potential NET cancer awareness event in the city sometime this spring. We talked about both an awareness walk and doing a series of “table” events in various locations in various cities with an eye toward reaching out the general public about the disease.
We need to do a better job…
While we’ve made too little progress on educating primary care doctors about NET cancer, we’ve done an even poorer job of reaching the general public. Some would argue that awareness doesn’t matter very much. I have to disagree, for two reasons.
Not as rare as we thought
First, NET cancer is not the insanely rare disease we thought it was even ten years ago. It has not yet achieved the level of a public health crisis–and likely won’t. But we’ve seen explosive growth in diagnoses over the last six years–an increase of about 2000 cases very year from 2010 to 2016–the last year for which we have statistics.
…reaching out the general public about the disease.
In 2010, we diagnosed about 10,000 cases in the US. By 2016 that number had swollen to 21-22,000 cases a year. In 2010, we had about 105,000 people living with a NET cancer diagnosis in the US. Today, that number tops 171,000. The number of people with the disease who have not had a NET cancer diagnosis yet is a matter of debate. Some doctors, privately, talk about 250,000 additional cases. Others, again privately, put the number far higher than that.
Implications of larger numbers
What we do know is even the small improvements in PCP awareness combined with the arrival of the Gallium-68 scan have unveiled a substantial number of new cases. We are closing in on the kinds of numbers that will end NET cancer’s legal status as a rare disease–as a true zebra. Much NET cancer funding is tied to that status.
…not the insanely rare disease we thought…
If NET cancer is, as appears increasingly likely, a significantly more widespread form of cancer than previously believed, people in the general population need to be made more aware of that fact. To do otherwise would be immoral. People in general need to know the symptoms the way they know what to look for to catch breast cancer at an early stage. Early diagnosis is critically important with any cancer. Public knowledge and awareness increases the chance of early diagnosis.
Solving the funding riddle
The second reason we need greater public awareness has to do with funding. We are currently too reliant on major private donors–those who give over $20,000 a year. One-third of the funding for basic research over the last two years has come from a single grant. When that grant ends in 2018, my understanding is that money is gone. There is no renewal option beyond that. We’ll need to find a way to replace that money or watch research funding–and research–shrink.
People in general need to know the symptoms…
About 20 percent of the money raised by 3-in-3: The Campaign to Cure NET Cancer, the funding campaign I chair for the Dana-Farber Cancer Institute’s NET cancer program, comes from small donors. We know we can count on that money year-in-and-year-out. The other 80 percent comes from major donors. The loss of a single smaller donor is generally fairly easy to replace. The loss of a single major donor can mean an entire line of research dies for lack of funds. The addition of a major donor can open an entirely new line of research.
Every donor matters
We need to keep major donors in the mix–honestly, we need to keep adding them. But we need to do more to cultivate the small and medium size donors more than we currently do. People don’t–can’t–donate to causes and diseases they have never heard of. They don’t donate to things they don’t feel a connection to. Nor do they encourage government and institutional spending on those things.
We’ll need to find a way to replace that money…
We need to do a better job of reaching out to the public at large about NET cancer. We need to do so for the sake of their health. But we also need to do so for the research funding they can help supply.
