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INCA Monthly Newsletter - June 2019 News Update
INCA Members' News
Member in Focus

Medical News

7th INCA Global Patient Advocate Summit 2019 - Together We Can Make a Difference 

21 organizations supporting NET patients from 5 continents met on 18-19 June in Plovdiv, Bulgaria to take part in the 7th INCA Global NET Patient Advocate Summit. The INCA Summit is an annual event that brings together the world’s leading patient advocates and medical experts in NETs to focus on latest developments in the NETs field, best practices, and major challenges to be addressed. Structured to reflect INCA’s three strategic pillars: raise awareness on NETs, secure access to optimal treatment and care, and advance NET research; the Summit agenda offered valuable insight into all these areas in the context of collaboration.

In 2019, INCA Summit speakers came from a variety of fields of expertise to suggest ways of bridging the gaps in information and communication, quality care provision and research in NETs. The psychotherapist and counsellor Kym Winter, working closely with AMEND and NET Patient Foundation UK, gave a profound overview of the specific unmet need for psychological support for NET patients due to factors like high level of unpredictability of the disease, logistical burden and the understanding of being rare. Tips and lessons learned on delivering the right information for patients at the right time were provided by Jo Grey from AMEND, UK. Cathy Bouvier from NET Patient Foundation, UK shared their expertise in educating healthcare professionals about NETs.

Prof. Vikas Prasad from the Ulm University Hospital, Germany, talked about what is new in PRRT and the need to take into consideration patients‘ quality of life and toxicity levels in treatment decision-making to truly deliver personalized medicine. Dr. Sugandha Dureja, nuclear medicine expert in theranostics and Chair of CNETS India, presented on how access to PRRT can be improved and introduced the concept of the 3 As (awareness, availability and ability/expertise).

Simone Leyden, INCA President and CEO of Unicorn Foundation, Australia outlined the mechanism of Health Technology Assessment and the challenges of reimbursement decision-making.

Breakthrough research in NETs, based on the impact of genetic studies, was very well outlined by Prof. James Howe, Chair of NANETS presented on. This picture was complemented by Prof. Marianne Pavel, ENETS President-Elect, who profiled the potentially practice-changing clinical trials in NETs. Tamas Berezcky from the European Patients’ Academy on Therapeutic Innovation (EUPATI) expanded on patient involvement in research and offered tips and resources for growing research advocacy expertise. The significance of partnering with patients to improve NET care was further highlighted by Dr. Simron Singh, Co-Chair of CommNETs, who elaborated on a few projects of Cancer Care Ontario, set to provide person-centered care.

In the capacity-building session, Yoshiyuki Majima, PanCAN Japan spoke about the key to success when working with regulatory bodies. An insight into fundraising strategies based on the experience of NET Research Foundation was shared by Josh Mailman.

INCA 2019 Summit presentations will be published on INCA YouTube channel in July. Stay tuned.

INCA Members Showcase

Advancing collaboration and sharing of best practices are both integral elements of the INCA Summit. Each INCA member organization briefly profiled their achievements and challenges, thus providing insight as to what works in awareness raising, advocacy and clinical trials development worldwide.

Short, punchy awareness-raising films about MEN2B were developed by the Association for Multiple Endocrine Neoplasia Disorders (AMEND) in 2019, addressing young people and facing the issue with life-long diagnosis.

The information gap in Kenya was addressed in 2019 by AZNETS - Africa Zebra Cancer Network Support, by organizing two NET Continuous Medical Education (CME) programs that reached 84 healthcare professionals at their workplace.

APOZ & Friends Bulgaria presented a working model of overcoming the shortages of the healthcare system in Bulgaria when it comes to NETs.

In France, APTED has organized 39 meetings with over 1500 NET patients in the span of 6 years.  A new region, Bourgogne & Franche Comté is added to the organization’s program in 2019.

The Carcinoid Cancer Foundation, USA, shared the results of their 50th Anniversary Video Series produced in 2018. The 12 short movies showing lessons learnt and different life approaches of NET patients generated high reach on social media, as well as award nominations and awards in the USA.

In Norway, CarciNor put a special focus on cancer survivors with community services, discussions at the annual conference and interviews in their member magazine.

In 2018 CNETS Canada held the 1st Canadian NET Medical and Scientific Meeting to provide a forum for Canadian NET experts to meet & discuss issues of great relevance to Canadian NET patients.

In 2018 and 2019 NET Italy Onlus started to organize open days for patients to discuss therapeutic pathways with clinicians.

NET Patient Network Ireland launched a Disease Awareness Campaign in 2018 around NET Cancer Day with the key message being “Every patient should see or have their case reviewed by a NET specialist”. The campaign succeeded in having 19 publications in leading newspapers and journals in Ireland, with a total reach of approximately 1 200 000 people.        

Some of the highlight for NET Patient Foundation UK in 2019: the first NPF NET news magazine got published, as well as ample resources about NETs and over 4000 copies were disseminated. The organization succeeded in funding the first coding of NET incidence & prevalence data and 6 NET research projects through NPF’s clinical fund.

The Middle East Neuroendocrine Tumor Society (MENETS) elaborated on their model of working from patients and caregivers to patients and caregivers. In 2019, the organization is building intense personalized programs and workshops designed to offer psychological support to both patients and caregivers for a better life with NETs.

PheoPara Alliance showcased the PheoPara International Conference held in June 2019 attended by 160 patients in-person and more than 100 online via livestream.

The Victory NET Foundation shared its success story of raising £2 million through crowdfunding   for  the AdVince trial,  which would explore the treatment potential in using  a virus that specifically targets neuroendocrine cancer cells.  The trial was launched in 2015.

vzw NET & MEN Kanker Belgium has recently published a book by a Belgium NET patient and popular writer that is going to be distributed this NET Cancer Day 2019 also on the biggest Belgium book fare which would happen on November 10th.

The Unicorn Foundation, Australia, presented their newest social media campaign Be Fair and the Planet Registry & App, an Australia-wide national clinical registry for NETs, that will collate key data to evaluate patient outcomes leading to valuable improvements in clinical practice, health outcomes, and facilitate collaborative research.

The Unicorn Foundation, New Zealand shared successes and hardships in their campaigning to get PRRT to New Zealand expecting positive developments soon and launch of the treatment in February 2020.

European Cancer Organization (ECCO) Patient Advisory Committee - Central to ECCO Strategy

Making sure that patient input and perspective are front and central to the forthcoming ECCO 2019 European Cancer Summit “European Cancer Care: Across Borders” to take place on 12-14 September 2019 in Brussels – that was one of the priority topics for discussion at the ECCO Patient Advisory Committee Meeting. 12 representatives from patient organizations, including INCA Executive Director, gathered on June 26th in Brussels, to provide recommendations and guidance to ECCO strategic projects going forward.

ECCO is the only society that brings together 27 professional healthcare societies in oncology - radiologists, surgeons, nurses, pharmacists, pediatric oncologists, patient organizations, among many others - to push for resolutions and actions to address inequalities and achieve holistic quality cancer care, which can only work if all disciplines in oncology treatment and care work together effectively.

ECCO has managed to transform into a small and very effective society that focuses their work on collective action, and even though resources are scarce, it continues to involve a Patient Advisory Committee in which the 18 largest pan-European cancer patient umbrella organizations are providing input into ECCO’s strategy and action.
It’s worth coming to the ECCO summit in September
INCA Members' News

A.I.NET Italy Vivere la Speranza Fundraising for NET Research

July the 13th, 2019 A.I.NET Vivere la Speranza will have the second edition of "SPES in Vino - A Cena dal Produttore" to present three new wine labels to be added to the two already existing ones to fundraise for research and trials in NETs and MEN.

The new fragrances "ERITACUS" - Sagrantino Secco Montefalco,  "CANTA ROSA" - Rosé di Montefalco, and "AMICALE" - Bianco Montefalco will soon be extended to many places in Italy, under the moto ambassadors of hope. Purchasing any of these bottles would contribute to the NET research fund supported by A.I.NET.

AMEND Awarded 4 Research Grants

AMEND awarded 4 research grants totaling almost £30,000 this month.  Dr Miles Levy, a Consultant Endocrinologist from the University Hospitals of Leicester NHS Trust and an Honorary Associate Professor in Endocrinology and Genomic Medicine for the University of Leicester receives £9,919.74 from the 2019 Nick Fayers Fund for MEN1 Research towards his project: MEN1 – Assessing circulating free tumour-derived DNA as a biomarker in the monitoring of NETs.  Dr Ruth Casey, a Consultant Endocrinologist at Cambridge University Hospital NHS Foundation Trust receives £10,000 from the 2019 AMEND Research Award for her project: Phaeochromocytoma and Paraganglioma – Investigating the clinical utility of somatic sequencing in the management of sporadic phaeochromocytoma and Paraganglioma.  Dr Cristina Ronchi, a Clinician Scientist in Endocrine Oncology in the Institute of Metabolism and Systems Research at the University of Birmingham receives £7,563 from the 2019 AMEND Research Award in association with ACC Support UK for her project: Adrenocortical Cancer – Targeted DNA sequencing or circulating cell-free DNA from patients with adrenocortical tumours: a strategy towards precision medicine.  Dr Scott Akker, Consultant Endocrinologist from St Bartholomew’s Hospital in London receives a small grant of £1,000 towards his project: SDH Syndromes – Is there a genotype-phenotype correlation in SDHB that can guide surveillance screening?  For more information, visit here 

AZNETS Continuous Medical Education Program to Raise NET Awareness in Kenya

Photo: Kericho County Hospital session held by AZNETS
The Continuous Medical education on Neuroendocrine Tumors (CMENET), a program developed by African Zebra Cancer Network Support (AZNETS), started at the beginning of 2019 and so far more than eighty healthcare professionals in Kericho County, Kenya, have been educated about NETs. The CME was held at the Kericho County hospital’s Maternal Child Health Clinic hall. This hall is usually used to conduct medical education at the hospital early in the morning before it transitions to a clinic later in the day.  The healthcare professionals educated in two different Continuous Medical Education sessions at Kericho County Hospital included: 28 clinical officers, 26 nurses, 18 laboratory technologists, 8 medical doctors, and 6 pharmacists.  

The CMENET involved case presentation, discussion and lecture about NET during the one-hour session from 7:30-8:30 am. The participants were very interested in the topic as shown by the number of questions they asked and the compliments they gave at the end of the education sessions.

The goal of the CMENET is to reach 80% of 60,000 healthcare professionals in Kenya with current development in NET in order to raise awareness, improve diagnosis, treatment and support for patients with NET and related cancers in resource-limited settings like in Kenya. Though with limited financial support, with AZNETS sponsoring the whole process, the efforts to increase the impact of the program would continue.

2nd Annual Canadian NET Medical & Scientific Meeting (CNMSM) 

CNETS Canada is delighted to host the 2nd Annual Canadian NETs Medical & Scientific Meeting taking place on October 26, 2019. This meeting is intended for medical professionals in Canada who are treating NET cancer patients. The agenda will include discussions, case presentations and lectures on the most important topics impacting NET treatment and care in Canada. For more information, please visit CNETS Canada website

NET Italy - Open Day for NET Patients & Their Caregivers

Photo: The Multidisciplinary team discussion at the NET Patients & Caregivers' Open Day 
The Open Day for NET patients and their caregivers “Our ‘friend’ NET: a dialogue between patients and doctors” was held in Modena – Italy on June 22nd. The event was organized by NET Italy and was widely reported by the local media.
Photo: NET Italy representatives, Dr. Luppi, an oncologist and NET specialist, and Mr. Muzzarelli, Mayor of Modena at the Open Day
It was attended by more than 100 patients and caregivers, from all over the country. As an advocacy group for patients and caregivers, NET Italy deems that this event has reached its scope and has helped in the dissemination of knowledge and increased awareness about neuroendocrine tumors.

In addition to answering patient questions during the event, the medical board, consisting of a multidisciplinary team of NET specialists  answered the most recurring patient questions, which were collated ahead of time.

Furthermore, the educational project “Patient as Educators”, put in place by UniMORE (University of Modena and Reggio Emilia) in order to train a selected number of patients as coaches for the future doctors and nurses and aimed at a more effective and friendly  communication with patients and caregivers, was presented as a good practice to be followed by all the healthcare systems. The meeting was also CME-accredited.

The discussions was moderated by Prof. Paola Tomassetti, gastroenterologist and member of NET Italy Scientific Committee, Mr. Andrea Pamparana, journalist and NET patient,   Mrs. Luisa Draghetti, President of NET Italy and Mrs. Simona Barbi, Vice-President of NET Italy. Prof. Gabriele Luppi, oncologist and NET specialist provided scientific supervision.

NET Patient Foundation Attended AGRONET 2019 

With over 200 delegates, from across the UK and Ireland, ACRONET 2019, held 6-7 June, was a busy and interesting educational event.

This now annual event, sponsored by pharma, aims to bring together specialist, NET and Endocrine nurses, and allied healthcare professionals, to share knowledge, skills and experience – to promote education and excellence in practice; ultimately benefiting the life of patients.

The programme reflected common themes and issues raised within both the nursing and patient communities – the need for reliable, accurate information (for healthcare professionals and their patients), access to expert care and treatments, education and training and knowledgeable support – for both physical and mental health.
Talks and sessions ranged from ‘Writing for Publication’, ‘Lab Tests and Interpretation’, ‘Carcinoid Heart Disease’, ‘Living with Chronic Disease’ and ‘Controversial Diets Explained’, with presentations from all disciplines including most importantly a patient.
The key take home message was “COMMUNICATION; say what you mean and mean what you say – be honest, accurate, clear and consistent.”

NET Patient Foundation was present; Nikie, NPF Nurse, as a member of the programme development and chairing committee and Cathy, as a speaker “Neuroendocrine Cancer – a holistic approach to care”.

Thank you to those who gave feedback on the day for your comments and interest and to those who expressed an interest in further contact and collaboration – we look forward to future discussions and working together.

Updates on PRRT in New Zealand  

Unicorn Foundation NZ  is continually working on behalf of its patient community to improve access to medicines and treatments in NZ. Recently the National Services Governance Group endorsed the PRRT application to proceed to service design, which is the first of several steps towards implementation of a National publicly funded service which may be available in 2020 (Date of introduction of service to be confirmed). This is an important development in improving the lives of NET patients in New Zealand and a step closer to our aspiration to create the first Centre for Excellence in New Zealand.

Member in Focus


Photo: NET-ESPAÑA campaign No Estas Solo / You are not alone

The Association of Patients with Neuroendocrine Tumors (NET-ESPAÑA) was born in 2016, when a group of patients were moved by the need to work in defence of NET patients, starting up an collaborative project. Blanca Guaras, President, on NET-ESPAÑA’s priorities: “The fundamental pillars of our work are: communication, knowledge and participation. Over these three years, we have created a strong platform to support patients, with presence throughout the country. Our aim is to see it grow day by day, and continue to connect patients.

Our projects and activities have different objectives. On the one hand, it is necessary to make our disease visible with awareness campaigns  and dissemination of information within the healthcare and social fields: ‘Change the colour of NETs’. We consider the training of professionals to be a priority for an earlier diagnosis, because ‘If you do not suspect it, you cannot detect it’. On the other hand, education of patients and their relatives, through shared learning spaces, provides us with the necessary tools to improve our quality of life and to better cope with our disease.

We work to improve the quality of care, and we are the voice of patients with neuroendocrine tumors in different forums,  defending our right to have access to experts, the best diagnostic tests and the most innovative treatments, without administrative barriers within the Spanish territory. And finally, we collaborate with the experts of GETNE (Spanish Group for Neuroendocrine Tumors), to encourage the participation of patients in clinical trials.”
Medical News

UCSF Shares Promising Results of a Clinical Trial

At the 2019  meeting of the American Cancer Society of Clinical Oncologists (ASCO), Emily Bergsland, MD, University of California, San Francisco, reported on the results of a phase II clinical trial of pazopanib (PZ).  The study evaluated how well PZ treats patients with advancing gastrointestinal neuroendocrine tumor (NETs), which were in the gut rather than the pancreas.
PZ is a drug taken orally that may stop or slow tumor growth by blocking cell processes required for the growth and expansion of the tumor cells. This clinical trial tested the efficacy of treating 171 study participants with either PZ or a placebo (inactive agent). Neither the patient nor the physician knew which treatment they received (PZ vs. placebo). 

Tumor image analyses determined whether cancers had continued to grow following the treatments. Results showed that patients taking PZ went an average of 11.6 months with no cancer progression, compared to 8.5 months for those taking the placebo.  This promising difference in tumor progression-free survival with PZ is “statistically significant” and not the result of chance.
“This is the first randomized study suggesting the VEGF pathway is a valid target for therapy in carcinoid. Additional work is needed, and predictive biomarker analyses are already pending,” said Emily Bergsland, MD

Read the full article on NETRF’s website.

Radionuclide Therapy Effective in High-Grade Neuroendocrine Neoplasms


Peptide receptor radionuclide therapy (PRRT) has been shown to be safe and effective for patients with grade 3 (G3) neuroendocrine neoplasms (NENs), according to research presented at the Society of Nuclear Medicine and Molecular Imaging's (SNMMI) 66th Annual Meeting.

"While numerous studies have demonstrated the effectiveness of PRRT in well-differentiated grade 1 and 2 neuroendocrine neoplasms, limited data has been reported on PRRT in G3 NENs," noted Richard P. Baum, MD, PhD, chairman and clinical director at THERANOSTICS Center for Molecular Radiotherapy and Precision Oncology in Bad Berka, Germany. "Our study--which followed the largest cohort of G3 NEN patients for the longest period of time--aimed to assess the safety and efficacy of PRRT in terms of survival analysis. In addition, we evaluated the utility of positron emission tomography (PET)/computed tomography (CT) in predicting long-term prognosis."

In the study, 69 patients with various types of metastatic, progressive G3 NENs received PRRT with 177Lu- and/or 90Y-labeled DOTATATE or DOTATOC. For some patients this therapy was a first-line treatment, but for the majority, PRRT was a second- or third-line treatment. Patients were followed for a median of 94.3 months, and progression-free survival and overall survival rates were calculated.

The median progression-free survival rate for patients with G3 NENs was 9.6 months, and the overall survival rate was 19.9 months. When taking into account the Ki-67 index, which measures a key protein associated with cell proliferation, researchers found a significant difference between survival rates. Patients with a Ki-67 index less than or equal to 55 percent responded more favorably to the PRRT than others, with a median progression-free survival rate of 11 months and an overall survival rate of 22 months.

Read more on Science Codex.medical professionals  in its Education Library. The material developed by Dr. Angela Lamarca, a member of the EORTC Gastrointestinal Cancer Group and a faculty member of the ESMO Neuroendocrine, Endocrine Neoplasms and CUP Group, aims to provide an overview of epidemiology, clinical presentation, grading and staging of pancreatic neuroendocrine tumours, the management of well-differentiated PNETs. Read the article here.

SNMMI Image of the Year: Novel Radiotracer Detects 28 Cancer Types, Paving the Way for Development of New Therapies 

ANAHEIM, CA—A single radiotracer can identify nearly 30 types of cancer, allowing for new applications in noninvasive diagnosis, staging and treatment, according to research presented at the 2019 Annual Meeting of the Society of Nuclear Medicine and Molecular Imaging (SNMMI). The results of the study demonstrate that positron emission tomography/computed tomography (PET/CT) with a fibroblast-activation protein inhibitor (FAPI)—which targets the overexpressed proteins present in cancer—resulted in images with exceptionally clear tumor delineation and high image contrast, as demonstrated in the 68Ga-FAPI-PET/CT image that has been selected as the 2019 SNMMI Image of the Year.

Each year, the SNMMI chooses an image that best exemplifies the most promising advances in the field of nuclear medicine and molecular imaging. The state-of-the-art technologies captured in these images demonstrate the capacity to improve patient care by detecting disease, aiding diagnosis, improving clinical confidence and providing a means of selecting appropriate treatments. This year, the SNMMI Henry N. Wagner, Jr., Image of the Year was chosen from more than 2,300 abstracts submitted to the meeting and voted on by reviewers and the society leadership.

This honor goes to a team of researchers at University Hospital Heidelberg, Germany. Showcasing the efficacy of the FAPI radiotracer, the image demonstrates the uptake of the FAPI in 12 epidemiological tumor entities, including high uptake values in lung, breast, prostate, esophageal and pancreatic cancer. Low background activity was also observed in the various cancers, resulting in high image contrast and excellent tumor delineation. Also, in contrast to FDG-PET/CT, FAPI-PET/CT can be performed without specific patient preparation (fasting, recline during uptake time) after a very short uptake time (~10 min.) and might improve patient comfort and accelerate workflow.

Read the full article from Society of Nuclear Medicine & Molecular Imaging.
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