Money remains a central NET cancer problem

We raised just over $5000 last month with a dinner fundraiser. That's not a lot of money compared to what we ultimately need--but with the slim funding we have, every dollar counts.

We raised just over $5000 last month with a dinner fundraiser. That’s not a lot of money compared to what we ultimately need–but with the slim funding we have, every dollar counts.

Money remains too scarce in 2017

Money was a problem in 2010. The amount researchers had to spend amounted to less than we spent on Jane’s treatment in the four months from her diagnosis to her death. Jane telling her doctors to study her the best they could, in some ways, doubled the research money for the year.

Grants run out and have to be replaced.

Money remains a central problem for NET cancer seven years later. Yes, we have 10 times as much research money now as we did then. Yes, we’ve seen significant increases in money for clinical trials from pharmaceutical companies and other sources. But we need to find more.

Funding for research

We still spend far less on NET cancer than we need to. The disease is complicated in ways no one saw coming. Just growing tumors in test tubes has proven insanely difficult. Mouse models have proven largely pointless. The tumors often grow so slowly the mouse dies before we can get useful information from it. The DNA shows no major attackable weaknesses.

Money remains a central problem…

Our efforts seemingly remain largely limited to finding ways to slow the disease and ease patient symptoms. Yes, we’ve found better scanning techniques. Yes, we have a trial of one variety of immunotherapy going on at this moment and another variety in the works. But much of the last seven years has remained devoid of curative ideas. This is not to belittle the substantial efforts to find ways to alleviate patients’ symptoms. Quality of life very much matters–especially in the absence of a cure. But we should not have to choose between one or the other.

Funding for awareness

The lack of money has also hampered our efforts to educate primary care physicians about the NET cancer. Our first priority has been finding ways to help patients who know they have the disease. But we have no real idea how many additional cases we are missing because of simple ignorance. As I’ve written before, not only can we not detect what we don’t suspect, but doctors can’t suspect what they have not heard about.

The disease is complicated…

And too many primary care doctors have not heard of NET cancer. NET cancer patients outnumber brain cancer patients in the US by a significant number. Every doctor in America knows what a brain cancer is. Too many don’t know what NET cancer is. And too many who do know so little about the disease that they say things like, “You have a good cancer too have.”

The next round

We can’t deny that NET cancer research is much better funded today than it was even seven years ago. But we still have less funding than what amounts to a rounding error on many other forms of cancer. We need sufficient funding to mount and maintain a more serious basic research effort than we have today. We need sufficient funds to continue to find and test new treatments and new diagnostic tools. And we need sufficient funds to ensure that every primary care doctor comes to know NET cancer for the menace it is.

…doctors can’t suspect what they have not heard about.

So for all the improvements in funding we have seen in recent years, we have to do more. Grants run out and have to be replaced. Much research that we need to do goes unfunded because we can’t afford to fund everything that needs funding. And awareness campaigns for both doctors and the general public need not just planning, but the resources to carry them forward. For all the problems we have solved in the NET cancer community, this one remains very much on my mind.

 

 

Posted by walking with jane on November 20, 2017

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