24 October 2022

Mark McDonnell is Chairperson of the NET Patient Network in Ireland and President of the International Neuroendocrine Cancer Alliance (INCA).

Neuroendocrine neoplasms are classified as an orphan disease, meaning they affect a small portion of the population. Orphan diseases are often neglected in research, and there is an unmet need for care among people with neuroendocrine neoplasms (NENs). Mark has worked hard to help improve care for people with NENs, in Ireland and around the world.

How would you describe your role as a patient advocate?

NET Patient Network strives to improve services and support for neuroendocrine cancer patients in Ireland. As chair of this national organisation, my role is to engage with medics and health service providers to ensure communication channels are kept open and that the patient voice is heard and included in decision making.

Over the past number of years, this has involved advocacy in support of appointing a National Lead for neuroendocrine tumours (NETs), developing a Centre of Excellence and pushing for core services such as Gallium-68 PET-CT scans and radioligand therapy. There remain issues with referrals, access to services and accessing support.

As President of INCA, my role is to guide INCA in its objectives to raise awareness of neuroendocrine cancer on a global scale, and to identify and help to correct inequalities in access, affordability and availability of diagnostics and treatments. Our goal is to raise the profile and capability of patient advocates for inclusion in decision making and research design. We support our member organisations by facilitating cooperation; sharing examples, tools and resources; and enabling new patient groups to become established and to better advocate in their regions.

What are the biggest challenges in helping people receive novel therapies?

Challenges with novel therapies are extensive. The biggest challenge is often to get a therapy approved for use in your territory, which can have many obstacles including reimbursement. Then, hospitals and health service providers often need to be encouraged to embrace a novel therapy and to engage with the logistics and costs involved in making it available.

Patients themselves may pose a challenge, though they often fall into different categories. Some will embrace a novel therapy to help with their prognosis when their disease is progressing. Others can be sceptical, both of the therapy and of the clinician’s experience. These concerns need to be addressed through communication, providing statistics and evidence of the therapy’s effectiveness.

What advice would you give to small patient advocacy organisations?

I strongly believe that cooperation and partnership are essential to effective advocacy. I would encourage patient groups to build relationships with medics, hospitals and health service authorities. Ensure that your communication channels remain open and use them for positive feedback as well as identifying where there may be issues.

It is important to engage with your patient community and make sure you have a channel to gauge their opinions and experiences with treatments so that you can collect evidence-based information before trying to advocate for changes. Develop your skills in collecting evidence, as evidence-based advocacy is crucial to being heard and achieving success.

What role did the NET Patient Network play in getting radioligand therapy reimbursed in Ireland?

At present, radioligand therapy is not directly delivered in Ireland. It’s delivered in centres elsewhere in Europe through the EU’s directive on treatment abroad. This, by default, causes anxiety and barriers to access for older people and patients with impaired mobility. It was critical that radioligand therapy should be provided within the country.

NET Patient Network supported the application for reimbursement of a medication for use in radioligand therapy. We submitted a comprehensive patient submission to the National Centre for Pharmacoeconomics (NCPE) detailing the demand for easier access to such a therapy from the patient community, and highlighting the barriers that prevent many patients from availing of this treatment.

We surveyed our community via an online form, and we held an in-person survey at one of our patient information days which was attended by patients and carers. We included these statistics in our submission, along with case studies of the benefits that people who received this therapy observed.

The medication was approved for reimbursement and we expect to have the first patients treated with radioligand therapy in Ireland in early 2023.

What are the three most important lessons you have learnt from this experience?

Evidence-based advocacy is crucial to being listened to and being respected. Learn about tools and methodology for how to collect evidence and prevent bias.

Relationships must be positive and cooperative. It is imperative that you work in partnership with your disease-expert clinicians and maintain channels for discussions and support.

Work with your patient community to ensure that their voice is heard and that you have a channel to reach them to collect evidence and statistics.

Mark McDonnell, President, International Neuroendocrine Cancer Alliance (INCA); Chairperson, NET Patient Network Ireland