As 2017 comes to a close and I reflect upon all that's happened, it gives me great hope that we're doing something to make a difference. The fact is there are more and more people with neuroendocrine cancer. One study showed that the number of people diagnosed has risen 50% over the past decade and unfortunately, I worry that it is an underestimate. This year, I've seen people from all over the world with neuroendocrine disease, young and old, women, and men, all races. As a patient population, this disease is growing; but as a community, we are growing to fight it.
There have been many accomplishments this year to better diagnose and treat patients. The new NETSPOT Gallium PET scan is much more widely available throughout the United States. The medication Xermelo is now available to help people with carcinoid syndrome. A MAJOR achievement is the imminent approval of the new LUTATHERA treatment (PRRT or Peptide Receptor Radionuclide Therapy) in Europe and the United States! This treatment will be a whole new mechanism of action for treating people with neuroendocrine cancer. Coupled with NETSPOT, it will be a new tool in the toolbox.
I think it will be important to think about 2018 with hope, but also a dose of reality. LUTATHERA, even if it is approved by the FDA here in the United States, will still have some growing pains. Let's go through the possible "naughty" list of things that will likely make it a challenge to get:
• It will be an expensive therapy. • Insurance companies will probably be slow to adopt and cover it. • It will probably take a lot of work from the doctor's office to get it approved. • Only a few centers around the country will offer it • Many doctors don't understand it • It's a complicated therapy to setup.
With all that said, the true neuroendocrine champions will be ready. For example, we do it here already in Denver because we believe in it, and the known NET experts at other facilities across the U. S. do as well. As leaders in the field, we've been working closely with all the parties to make this a smooth transition. The Healing NET Foundation is dedicating a large portion of the 2018 International Healing NET Summit to discussing the ins and outs of LUTATHERA . We want to help physicians understand what is at stake. Sure, it might be a headache to get started, but it is worth it. I've seen this therapy help so many people.
With just a few days left in the year, I want to thank you all for your support of the HEALING NET FOUNDATION and our Neuroendocrine Community. We are all in this together. Every year, every week, every day is a gift. Being able to work with all of you is truly an honor for me. But there is so much more work to do. Stay strong - stay healthy - I need you all to be warriors in our crusade. Happy Holidays and Happy New Year to you all!