NorCal CarciNET Community
Our mission is to help those with neuroendocrine tumors and carcinoid to share challenges and experiences, learn about prognosis and treatments, find information, and improve communications between the medical community, patients and caregivers. By providing opportunities for our members to connect with others who have these rare illnesses we will enable them not only to get their questions answered but also to give and receive emotional support. In addition, we aspire to bring greater awareness to the medical community and the public so as to promote earlier detection and treatment of these often unrecognized illnesses.
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NorCal CarciNET Community is now a 501(c)(3) (Tax-Id 45-2968919)
Contribution made to our group are now tax deductible.
MEDICARE / CMS and Reimbursement for Advanced Radiopharmaceuticals
Create Awareness on NET Cancer Day, November 10, 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 simplified how CMS paid for PET Imaging. The simplification reduced an infinite combination of supplies and tracers to a few PET bundles based on tracer cost. 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).
2019 Bay Area Neuroendocrine Patient Conference - Hosted by UCSF
2019 Neuroendocrine Tumor Patient Conference
Hosted by:UCSF Helen Diller Family Comprehensive Cancer Center
In cooperation with NorCal CarciNET Community, and Stanford University Medical Center
Sunday, February 10, 2019 - 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 a wide variety of topics pertaining to Neuroendocrine Tumors (NETS) including surgery, liver directed therapy, imaging, 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 by disease types and breakouts specifically for caregivers.
New in 2019 - Extend lunch time table talks. We are extending lunch networking time to 90 minutes and expanding the number of networking table topics.
Open to patients, caregivers and those interested in NETs.
Thanks to generous support from NorCal CarciNET Community, and our Industry Partners there is no registration fee. Conference registration includes lunch and parking.
Click on Read more info for speakers, agenda and supporters.
Speaking Up Tour
Join us on our Speaking Up Tour
Building better conversations with our Doctors
In 2017 NorCal CarciNET worked with Lexicon Pharmasectials to host a pannel on talking with your physcians, we called it "Speaking Up...". In May 2017, Josh Mailman, NorCal CarciNET's president wrote on article in Cure Magazine "Learning to Speak Up With Cancer - What stands in the way of patient-physician communications and how can we get around these barriers? What stands in the way of patient-physician communications and how can we get around these barriers?"
Starting in the fall of 2018, NorCal CarciNET is taking the conversation on the road. We hope to "Speak UP" with at least 5 more groups in the coming months. We hope to see you on tour.
Videos from the 2018 Bay Area NET Patient Conference
Videos from the 2018 Bay Area NET Patient Conference - View them all here.
Keynote: Dr. Steve Pantilat
Lutathera Approved by FDA for Treatment of GEP NETS
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
Dr. Abrams speak on Integrative Oncology
On July 18, 2018, Dr. Donald Abrams spoke to NorCal CarciNET Community on "Understanding Complementary Approaches to Cancer Care"
2018 Bay Area Neuroendocrine Patient Conference - Hosted by UCSF
2018 Neuroendocrine Tumor Patient Conference
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.
NETSPOT (Ga68 DotaTate) for NET Imaging approved by FDA
On June 1, 2016, the U.S. Food and Drug Administration (FDA) granted approval to NETSPOT form Advanced Accelerator Applications (AAA), the first kit for the preparation of Gallium-68 dotatate positron emission tomography (68Ga-dotatate PET) imaging. Gallium-68 dotatate is a positron-emitting analogue of somatostatin, and the radioactive probe helps locate tumors in patients with somatostatin receptor-positive neuroendocrine tumors.
“Use of advanced imaging techniques to detect rare neuroendocrine tumors at an early stage in patients is critical,” said Libero Marzella, director of the FDA Division of Medical Imaging Products.
Three studies have established the safety and efficacy of Netspot by comparing 68GA-dotatate PET imaging to standard imaging options as well as clinical and histopathological data in patients with neuroendocrine tumors.
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