Worldwide NET Awareness Day is less than a month away.

Today, I read the first draft of Becky Martins’ piece on Dr. Richard Warner, one of the founders of  the research into this disease.

In it, I discovered the reason the National Cancer Institute does not fund NET research: It is considered a “rare cancer.” That designation is not new. It has been in place since 1968.

That’s right: the federal government, through NCI, has not spent any money on NETs since 1968. And since they have spent no money since 1968 we have had to limp along on whatever handouts we have been able to find.

No wonder we had not, before this summer, seen a new drug or treatment in the US get FDA approval in the last 30 years.

No wonder we have not come up with many new and better ways of detecting the disease than the 5-HIAA urine test developed in the mid-1950s.

No wonder most NETs are either discovered by accident or not discovered at all until after they have invaded the liver–and even then they may not be getting diagnosed at all.

No wonder of the three million potential cases of NET the autopsy studies lead us to believe are out there, we have only found about 120,000.

NET is locked into rare cancer status because we decided in 1968 it was rare–and then lacked the funding to discover that maybe it was not rare at all. Or maybe it was rare then but, because of environmental factors, has become more common now. But we have not had the resources to discover anything that might have changed that view in 43 years.

Talk about being stuck in Catch-22.

Think of all the things that have changed since 1968. Think of all the discoveries in medicine alone since that date: CTs, MRIs, vaccines, antibiotics, arthroscopic surgeries, angioplasty, organ transplants… Where would we be without the federal money that went into those things?

That’s where we are in too many respects with regard to NETs.

Yesterday I talked to a staffer from US Senator Scott Brown’s (R-MA) office about the need for federal funds to keep teachers in classrooms. If I had known then what I know now I would have bent his ear on this as well.

It is certainly an item that is going on my to-do list.

Put it on your list, too.

We have had to rely on the kindness of strangers for long enough.