Speaking Up - Talking about NETs and Carcinoid Syndrome
Speaking Up: What stands in the way of patient-physician conversation about neuroendocrine tumors and carcinoid syndrome?
You, your family caregivers and fellow members of the neuroendocrine tumor (NET) community are cordially invited to attend an informal discussion hosted by Lexicon Pharmaceuticals about the barriers and opportunities in discussing NET and carcinoid syndrome with your healthcare professional team.
This session promises to be both informative and thought-provoking.
When: Friday, January 20
7 pm to 9:30 pm PT
Where: Intercontinental Hotel, San Francisco
Telegraph Hill Room (4th Floor)
888 Howard Street
Valet parking at the hotel will be validated.
This event is sponserd by Lexicon Pharmaceuticals
2016 - Strength In Community
2016 has been a truly groundbreaking year for NorCal CarciNET Community and the NET Community as a whole.
We started the year in January with nearly 350 members of our community coming together for our annual conference - our largest yet. We were also joined by over 500 people on a live stream. During the conference, Josh Mailman, NorCal CarciNET's president, was honored with the Warner Advocacy Award for his work in the NET Community. We look forward to seeing everyone again on February 4, 2017 at our next annual conference which will be hosted by Stanford. Registration will be opening.
In March, 90 members of our community joined together to raise NET awareness at the Oakland running festival. In our 4th year at the festival we raised over $5,000 for our community programs. We hope to be over 100 strong when we take part in our 5th festival on April 2, 2017.
To join us please click here.
In 2016, we expanded our community meetings thanks to a collaboration with UCSF. Our community now has an an opportunity to meet monthly, meeting on even month at the Cancer Support community in Walnut Creek and odd months at UCSF Mission bay. To see our current meeting schedule please check our website’s meeting page. Funding for our meetings is provided by our community contributions.
In our continuing goal to educate both patients and the medical community, NorCal CarciNET awarded 4 education grants (2 for patients and 2 for doctors.) Our patient grantees, along with members of the NorCal CarciNET board, attended the 3 day Neuroendocrine Awareness Network Conference in New Orleans. Our doctor grantees attended the North American Neuroendocrine Tumor Society in Jackson Hole at the end of September. Dr. Hope from UCSF, one of our grantees, has presented to our community several times in 2016, and Dr. Padda from Stanford will be presenting her work on in pulmonary disease in 2017.
Josh maintained an active advocacy schedule on the community's behalf, travelling locally, nationally and internationally. He was honored to give Radiology Grand Rounds at Stanford this fall while continuing his work with national and international organizations that has taken him around the world speaking to medical communities about issues important to our patient community. His travels have taken him to Johannesburg and Cochin, India, speaking on living with a rare disease, to Barcelona speaking on dosimetry to Melbourne speaking on the needs of randomized control trials in nuclear medicine.
Our NorCal CarciNET community once again hosted a patient education day in nuclear medicine last June at the Society of Nuclear Medicine and Molecular Imaging's annual meeting in San Diego. We were grateful to be joined by our colleagues in San Diego and Los Angeles as we had nearly 75 patients learning from a international panel of NET experts.
It would be hard to close out the year without highlighting our ongoing collaboration with NETRF. In November, Josh was elected to the board of Neuroendocrine Tumor Research Foundation (NETRF.org) in recognition of the work he has done in the NET Community and his collaboration with NETRF in support of its efforts in NET education and NET research funding.
Strength in Community
|Community meetings held (2017 we will have 12)
|Patients and caregivers attended our Community meetings
|Private discussions groups hosted for those who attend meetings
|Messages processed by our discussion group server
|Participants in this year's Bay Area Conference
|Watched our Bay Area Conference Live
|Participants at the Oakland Running Festival
|Amount raised by our Oakland Running Festival participants for NorCal CarciNETS
|Unique visitors to our website (up 20%)
|Files downloaded from our file section
|People worldwide have joined our mailing list
|Terabyte of videos hosted by NorCal CarciNET
|Number of videos loaded from our video server
|Videos watched from our video server
|Number of countries from where videos were watched from
|Contributors who made this all possible
NorCal CarciNET Community is a 501(c)(3) (Tax-Id 45-2968919)
Contribution made to our group are tax deductible.
eviCore Oncology - Ga68 Dotatate PET/CT
Updated eviCore Oncology Guidelines List Ga68 Dotatate as Experimental
What is the news?
eviCore, one of the leading medical benefits management companies in the U.S., has updated its coding recommendations for PET imaging in oncology. Per this decision, eviCore will not cover Ga68 DOTATATE – listing it as experimental despite the June 1, 2016 FDA approval.
Why does this matter?
eviCore processes 12 million claims annually.
This decision could deprive patients of access to FDA-approved, commercially available, and highly valuable Ga68 Dotatate PET/CT.
What is NorCal CarciNET Community doing?
NorCal CarciNET's board sent a letter to eviCore expressing our concern and asking them to reconsider their position given the medical evidence and the success our community has had with the scan. Click here for the Society of Nuclear Medicine and Molecular Imaging letter.
NorCal CarciNET is working with our partner the SNMMI and other NET advocacy groups to hopefully have the guideline updated to include Ga68 Dotatate. This impacts only those whose insurance use eviCore to manage benefits, this does not include Medicare.
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.
External links to this news: (your browser will open a new window)
Patient Education Day - SNMMI 2017
NorCal CarciNET Community is once again working with the Society of Nuclear Medicine and Molecular Imaging (SNMMI) to host a free Patient Education Day during the Society's annual meeting in Denver on June 11th, 2017. This day long patient centered program is will cover the history and safety and future of nuclear medicine as well as understanding clinical trials as they pertain to your treatment. There will also be a NET breakout, that will focus exclusively on Neuroendocrine Tumors, imaging and treatment.
There is no charge for registration, which also includes access to all SNMMI sessions Saturday - Tuesday.
To view all NET related session click here and proceed to June's calendar.