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.
Lutathera Approved in the European Union
Advanced Accelerator Applications (AAA) Receives European Approval of Lutetium (177Lu) Oxodotreotide (Lutathera®) for Gastroenteropancreatic Neuroendocrine
AAA announced on September 29, 2017 that the European Commission (EC) has approved the marketing authorization of lutetium (177Lu) oxodotreotide* (Lutathera®) for “the treatment of unresectable or metastatic, progressive, well differentiated (G1 and G2), somatostatin receptor positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs) in adults.” This approval allows for the marketing of lutetium (177Lu) oxodotreotide* (Lutathera®) in all 28 European Union member states, as well as Iceland, Norway and Liechtenstein. A New Drug Application is currently under review by the US Food and Drug Administration. The Prescription Drug User Fee Act (PDUFA) action date is January 26, 2018. Click here to read the company press release or here to read the EU approval.
Comments on NRC Patient Release Program
The Society of Nuclear Medicine and Molecular Imaging submitted comments to U.S. Nuclear Regulatory Commission (NRC) on its patient release programs. The NRC announced a request for comments from the general public.
Specifically, the NRC is seeking input from the public on whether additional or alternate criteria are needed and whether to clarify the NRC's current patient release requirements. The information will be used to determine whether significant regulatory changes to the NRC's patient release requirements are warranted.
NRC is seeking feedback in six areas listed below.
- Development of an Activity-Based Patient Release Threshold
- Clarification of the Time Covered by the Current Dose Limit in 10 CFR 35.75(a) for Releasing Individuals
- Appropriateness of Applying the Same Limit on Dose From Patient Exposure to All Members of the General Public
- Requirements for Releasing Individuals Who Are Likely To Expose Young Children and Pregnant Women
- Requirement for Timely Discussion With the Patient About Patient Isolation to Provide Time for Licensee and Patient Planning
- Requirement To Ensure Patients Are Given Instructions Prior to the Procedure
NorCal CarciNET Community submitted a breif letter in support of the SNMMI's position and voiced concerned that any addtional requirement might reduce access to upcoming new therapy options for NETs that have very low radiation exposure to the general public.
If you would like to comment in support of the SNMMI's or NorCal CarciNET Communty's position click here. You may add your comments through June 27, 2017.
Make your voice heard - NIH Funding
Advocates rally to protect federal funding of cancer research
The White House released a 2018 budget outline on March 14, 2017 that cuts National Institutes of Health (NIH) spending by nearly 20 percent. NorCal CarciNET shares the concern expressed by other cancer-related organizations and our collaborators that a funding decrease of this magnitude could disrupt, even derail, America’s cancer investigators and research institutions. These cut will amount to nearly $100 million shortfall to UCSF and Stanford only according to the San Francico Chronicle. These cut include a nearly $1.2 billion dollar cut for the NIH in FY2017.
NIH funding critical
More than 80 percent of the $32 billion NIH budget is awarded to universities, medical schools and other research institutions through a competitive grant process. NIH grants often comprise a significant portion of an institution’s or individual investigator’s funding.
FDA approves Xermelo for carcinoid syndrome diarrhea
The U.S. Food and Drug Administration today approved Xermelo (telotristat ethyl) tablets in combination with somatostatin analog (SSA) therapy for the treatment of adults with carcinoid syndrome diarrhea that SSA therapy alone has inadequately controlled.
“Today’s approval will provide patients whose carcinoid syndrome diarrhea is not adequately controlled with another treatment option,” said Julie Beitz, M.D., director of the Office of Drug Evaluation III in the FDA’s Center for Drug Evaluation and Research.
This new treatment is now available by prescription and will be in select specialty pharmacies beginning March 6, 2017.
To read more about the approval click here for the FDA's release or here for the Lexicon press release.
For those needing information on how to getting Xermelo please click here.
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.
REGISTER
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
| 8 | Community meetings held (2017 we will have 12) |
| 325 | Patients and caregivers attended our Community meetings |
| 5 | Private discussions groups hosted for those who attend meetings |
| 7,500 | Messages processed by our discussion group server |
| 350 | Participants in this year's Bay Area Conference |
| 525 | Watched our Bay Area Conference Live |
| 90 | Participants at the Oakland Running Festival |
| $6,000 | Amount raised by our Oakland Running Festival participants for NorCal CarciNETS |
| 5,000 | Unique visitors to our website (up 20%) |
| 6,000 | Files downloaded from our file section |
| 1,500 | People worldwide have joined our mailing list |
| 1 | Terabyte of videos hosted by NorCal CarciNET |
| 150,000 | Number of videos loaded from our video server |
| 6,000 | Videos watched from our video server |
| 70 | Number of countries from where videos were watched from |
| 105 | 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.
What’s next?
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.
