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INCA Monthly Newsletter - July 2018 News Update
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INCA Unmet Needs in NETs Initiative Results to be Presented at Key Medical Conferences around the World
 Two of the INCA abstracts based on the findings of the Unmet Needs in the Global NET Community Initiative have been accepted for poster presentation:
- "Unmet needs in the global NETs patient community from the perspectives of patients, patient advocates and NET health professionals" - at the upcoming 2018 NANETS Annual Multidisciplinary NET Disease Symposium, October 4-6, in Seattle, Washington, USA.
- "Unmet needs in the management of neuroendocrine tumours (NETs): A global survey of patients, patient advocates and healthcare professionals " - during the ESMO 2018 Congress, 19-23 October, Munich, Germany.
Furthermore, the abstract "Unmet needs in the global NETs patient community: an assessment of major gaps from the perspectives of patients, patient advocates and NET health professionals" has been accepted into the APNETS 2018 program as an oral presentation. The INCA President, Simone Leyden, who is also a convenor of the APNETS Conference, will be presenting the findings of the Unmet Needs initiative in Melbourne in the beginning of November.
INCA would like to thank again everyone involved in taking further this important initiative on addressing unmet needs for NET patients. Special thanks to NETRF who kindly funded the development of the surveys, white paper and all visual materials, which will soon be available in 7 languages.
Committed to be the global voice of NET patients, INCA is proudly anticipating to bring its knowledge to the major medical fora. We are looking forward to continue building bridges with our key collaborators in the NET community to collectively address the many challenges in securing a timely diagnosis and accessing optimal treatment and care.
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AMEND Raises Almost £15,000 During Yorkshire Three Peaks Challenge
On the weekend of 30 June, a 13-strong team climbed three famous English mountains (Pen-y-Ghent, Ingleborough and Whernside) in the stunning scenery of the Yorkshire Dales to raise money for AMEND. With exceptional weather in England this summer, the team, including several patients, had to deal with temperatures of up to 32 degrees celsius and almost no shade during the 2-day adventure. Nevertheless, with plenty of sunscreen and fluids, and despite blisters and aching muscles, everyone completed all three peaks successfully, raising the whopping total of almost £15,000. Profits from the trip will be added to AMEND’s Research Fund, with the aim of awarding grants in 2019. You can read more about this adventure on the AMEND website.
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CCF’s 50th Anniversary Video Series Continues With “Laughter Is the Best Medicine.”
Steve Mazan has known since he was a kid that he wanted to make people laugh. A diagnosis of neuroendocrine cancer in 2005 made this stand-up comedian and inspirational speaker more determined than ever to realize his dream of being on the David Letterman show. He was told he had 5 years to live; 13 years later he’s a nationwide performer, an Emmy Award winning television writer, an author, and a TED speaker. “It doesn’t matter how much time you have,” says Steve, “it’s what you do with it.”
Watch the video on CCF's Youtube channel, or on Facebook.
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CNETS Canada NET Research Priorities Survey Results
In March CNETS Canada reached out to the patient community through an online, anonymous survey to gather feedback and input on setting the research priorities for CNETS Canada sponsored grants for the next 2-3 years.
187 responses from across Canada were received with 75% of the replies from patients. One of the most significant findings was 90% of respondents who have donated to NET research in the past, will continue to support NET cancer research in the future. 75% of respondents indicated the motivating factor for donating to NET research is “hoping for a cure”. When asked where should research funds be directed towards the community priorities were, clinical trials (74%), immunotherapy (50%), PRRT (48%), Ga68 (47%) and basic science (33%).
Based on the positive community feedback, CNETS Canada will launch the 2018 Call for NET Research Grant Applications with the community priorities for NET research as part of the eligibility criteria for applications.
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NET Patient Foundation Reports Success in Treatment Availability in UK
 For a couple of years now, the UK has struggled with NET treatments being unavailable, due to lack of NHS approval. The NPF is however delighted with the three positive outcomes it has received this month. Patients, healthcare professionals and industry groups have been working so hard to bring us back to a service where we could offer all the treatments a NET patient has the right to receive:
1. Scottish Medicines Consortium (SMC) has approved lutetium 177Lu oxodotreotide for patients in NHS Scotland.
SMC: "We would like to thank the NET Patient Foundation for the time and effort taken to produce your submission. Capturing the views and experiences of patients and carers is an important part of the SMC process and plays a key role in helping our Committee reach its decisions. We hope that your patient group will welcome this decision”.
2. The National Institute for Health Care Excellence (NICE) has recommended Lutetium (177Lu) oxodotreotide, within its marketing authorisation, as an option for treating unresectable or metastatic, progressive, well-differentiated (grade 1 or grade 2), somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumours (NETs) in adults.
3. All Wales Medicines Strategy Group (AWMSG) has recommend Telotristat ethyl as an option for restricted use in NHS Wales to treat carcinoid syndrome diarrhoea in combination with somatostatin analogue (SSA) therapy in adults inadequately controlled by SSA therapy.
AWMSG: "The information the NET Patient Foundation submitted, on behalf of the NET community, helped the All Wales Medicines Strategy Group to understand how this condition affects patients and carers.”
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