Action Requested by November 1, 2019

On October 18, 2019, an opinion piece that NorCal CarciNET Community’s Josh Mailman opinion article (“CMS policy shouldn't penalize those with rare disease”) was published by The Hill,  The opinion piece highlighted the challenges with the current method that Medicare/CMS use to pay for radiopharmaceuticals. This webpage provides more information on how this will impact NET patients and providers along  with a  tool for those that are interested in taking action.

The Medicare Diagnostic Radiopharmaceutical Payment Equity Act of 2019 (H.R. 3772),  which many in the nuclear medicine community are working on to help improve, will impact Medicare payments for imaging only. This bill is not looking at broader medical payment, billing or cost issues.


In 2008, Medicare/CMS worked with industry and providers to simplify how CMS paid for PET Imaging as a single PET could have many different supplies and tracers attached to it The parties agreed to have several PET bundles as opposed to an infinite combination of supplies and tracers for a single PET. These bundles allowed a provider to bill for all PET imaging in a simplified manner. The most expensive bundle is ~ $1,400 (there are some regional adjustments).

arethaThe NET Commuinty is saddened to hear of the passing of Aretha Franklin, the Queen of Soul, who died of a pancreatic neuroendocrine tumor (pNET) this morning. She was a legend in the music industry and it is difficult to find the appropriate words to express our sadness of this loss.

For more information on Adenocarcinoma Cancer vs Neuroendocrine Pancreatic Cancer please visit the Neuroendocrine Tumor Research Foundation.



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1/26/18 - Advanced Accelerator Applications (AAA) Receives FDA Approval of Lutetium (177Lu) Oxodotreotide (Lutathera®) for Gastroenteropancreatic Neuroendocrine
AAA announced that the Federal Drug Administration (FDA) has approved the new drug application (NDA) for LUTATHERA® (lutetium Lu 177 dotatate*) for the treatment of somatostatin receptor positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut neuroendocrine tumors in adults. Click here to read the company press release or here to read the full prescribing information.

 NorCal CarciNET President, Josh Mailman discusses this with Drs. Hope, Kunz, Strossberg and Liu on Facebook. Click here to view




2018 Neuroendocrine Tumor Patient ConferenceUCSF Diller navy
Hosted by:UCSF Helen Diller Family Comprehensive Cancer Center
In cooperation with NorCal CarciNET Community, NET Research Foundation, Stanford University Medical Center

Sunday, January 21, 2018 - 8:30 am to 5:00 pm
Mission Bay Conference Center - 1675 Owens Street, San Francisco, CA 

The day will feature nationally-renowned UCSF and Stanford NET experts, along with other internationally-known physician specialists who will offer sessions on immunotherapy, tumor bio-markers, PRRT, current clinical trials and strategies for living well after diagnosis. A pre-conference “primer” is offered for those newly diagnosed or in need a refresher on the basics of NETs. We will also have breakout sessions for disease types as well as some specifically for caregivers.