Government Action

Last Friday morning (Sep. 29), before I left my hotel room to attend the National Organization of Rare Disorders (NORD) conference, I noticed that, on my nightstand, I had a big pile of scientific articles, Cancer magazine issues, and the like. As I rode down the elevator, I thought perhaps our doctors should sometimes ask us what we’re reading in order to gain better insight into how we’re feeling! When I feel energetic and at my best, I plow through scientific articles and read about progress in other cancers to address the gaps in carcinoid and related NET cancer research. At other times, my bed stand is covered in detective novels. At my lowest points, I’m reading the back of shampoo bottles and cereal box Fun Facts (did you know that the hippo is the most dangerous animal on safari?).

The NORD conference generated excellent information that we will apply to the carcinoid/NET community. Some topics included discussion of the NIH Road Map, translational research, and the NIH funding process. NORD brought together kind, generous government officials from the FDA, NIH, and NCI, each of whom shared insights on how to advance the cause of rare disorders and how each agency works to do so.

Dr. Von Eschenbach, the acting FDA commissioner, spoke eloquently about his belief that medicine is divided between OLD medicine and NEW medicine. OLD medicine consists of the doctor using his senses (touch, smell, sound, sight), and scans (X-rays, CT, PET, and other images) to create a diagnosis of the cancer patient and monitor tumor progression. Today, however, we have the opportunity to take advantage of NEW medicine. We must fund research to understand the genetic causes and molecular processes that result in carcinoid/NET and, thus, move toward curative treatments.

Our future is not in discussing symptoms and diagnostic images. Instead, as Von Eschenbach stated, the dialogue has changed dramatically to one of research into genetic understanding and the development of better treatments for rare diseases. A metamorphosis has occurred—this NEW medicine provides us with hope.

As you see in our Special Alert, the government is becoming actively interested in carcinoid/NET research. This is unprecedented and exciting. Follow the steps in the Special Alert to e-mail your U.S. Senators and Representatives.

“The stakes are too high for government to be a spectator sport.”
Barbara Jordan, former U.S. Congresswoman.

Let’s work with the government to find a cure!