NET Patient Foundation Attends The INCA Global NET Patient Summit

This years summit was a collaboration of 26 member organisations from 22 countries, with a single goal to work on key strategic pillars that will promote effective, fair and equal care for all patients across the globe. There are various committees within INCA which run various projects all on a volunteer basis, often in the evenings and over the weekend. It was wonderful to see new members. Each committee shared updates on the work to date including:

  • Global patient information project
  • INCA research project
  • Access project
  • NET Cancer Day and the focus for 2019/2020 and the importance of ongoing engagement throughout the year and not just the day
  • INCA social media plan
  • Website updates and improvements
  • Governance
  • Financials

We had a clear medical focus on:

  1. Bridging the Gap –  NET Patient Foundation shared our MIND the Gap project and facilitated a session on the importance of emotional wellbeing to ensure the best outcomes, with a clear message that this is not relevant for all but we must support the population for which this is a major issue. Like everything with NETs – its individual, personal and unique for each person affected.
  2. How we can improve patients access to optimal treatment and care with an excellent presentation from Dr Vikas Prasasd
  3. Research and clinical trials with interesting discussions and presentations from Professor Singh and Professor James Howe.

The two days concluded with a round up of clinical trials in NETs presented by Marianne Pavel. There are 2076 studies in NETs at present, 902 studies on drug therapies but only four novel compounds have been approved since 2011. This is not optimum treatment for our community! We have to work together to change the Health Technology Appraisal process and make fit for purpose for rare and uncommon cancers. We have to have patients involved right at the beginning of clinical trials phase and researchers have to start to think about the end result – drug approval – when planning the trial format.

There were various combination trials for the PNET community but the Lung NET community is still under represented. Will the AXINET trial offer us some hope? What about NEC’s? Here at the NPF we have brought up this topic again and again. Can we refocus the research community to the needs rather than the numbers?

We also have to think about the fact that therapies do not last for long, as the tumour biology changes and the tumours find a way past the inhibition – therefore we need to (as we have spoken about many times before), work hard to support a validated way to predict treatment response. There are a couple of new ways being trialled using RNA expression testing: The NETest and Cancer Type ID. 

We of course had many conversations about what advocacy is, and there are many variants across different countries. Our community in the UK has four organisations advocating for patients (in very different ways), and great independent advocates like Ronny Allan. This level of support is not available everywhere around the globe, and INCA has a responsibility to push for this for all patients. There is the question of funding however. Some organisations like the NPF are run by specialist nurses to provide a service led model of care, with a specialist nurse service in the community. Should this not be funded by our health services, as it is in other countries? There was a great quote from one of the medics who said to be realistic as ‘action follows dollars’. 

Listening to the issues and achievements of each member county was such an important aspect of the summit. The global perspective:

Putting each patient at the heart of what we do, being inclusive of all NET types, sharing best practice and pitfalls, learning, discussing, working together, taking inspiration from others and above all listening, will be the key to our growth and success. Not one person there had any designs on being the leader, just a  passion to help those whose lives had been deeply affected by this cancer. Everyone brought experience of caring for a patient, losing a loved one or living with Neuroendocrine Cancer.