When Jean Pierre Blondeel was diagnosed with low-grade follicular lymphoma in 2002, he began seeking information and support beyond what was provided by his doctors. Jean Pierre connected with other Belgian lymphoma patients and for many years worked towards bettering patient conditions in Belgium. In 2015, he founded Hodgkin en non-Hodgkin vzw, a non-profit lymphoma organisation recognised by the Belgian government.
Hodgkin en non-Hodgkin vzw has certainly grown since its beginnings; Jean Pierre acts as president, and now has a team of 5 full-time staff, numerous volunteers, a board of directors, and over 200 patient members.
The main objective of Hodgkin en non-Hodgkin vzw is to support lymphoma patients in their experience as a cancer patient.
As both a patient and patient advocate, Jean Pierre feels that the Belgian healthcare system is effective and well organised.
“Patients have good access to doctors and have adequate time to speak with them. I think that most patients feel comfortable speaking with their doctors, and doctors usually give a very good explanation of the illness and treatment,” he said.
Despite this, access to modern medicines continues to be a challenge for patients. According to Jean Pierre, it can take 2-3 years to obtain access or approval for a drug in Belgium. Improving access to new drugs and therapies remains the organisation’s principal goal for 2018.
How the Organisation Works
Hodgkin en non-Hodgkin vzw has worked hard to build a diverse network to support and inform lymphoma patients. They partner with, and become members of, other patient organisations to share best practice and source the most recent and scientifically sound information. They host information meetings and symposia with doctors at regular intervals. They partner with ‘first line’ healthcare professionals, for example home nurses, physiotherapists, and nutritionists, to share information (reciprocally) and connect with patients.
They also engage in government policy discussions at both the regional and federal level; they work most closely with the Belgian Health Office from whom they receive funding. Discussions at the federal level occur roughly four times annually and focus not only on lymphoma patient needs, but also Belgian patient needs more widely.
Lastly, they engage in discussions and partnerships with the pharmaceutical industry. “We work with pharma to gather the most information possible about new medicines. We, as an organisation of patients, are asked to provide statements about how we feel during and after treatment, about side effects, and so on. Especially pertaining to new immunotherapies,” he said.
Connecting with Patients
Hodgkin en non-Hodgkin vzw distributes leaflets to hospitals throughout Belgium, which are given to patients alongside medical information when they receive a lymphoma diagnosis. Because of their extensive network and patient word-of-mouth, they do not have to do much advertising beyond this.
Becoming a member of the organisation is free, patients need only apply through the online application system found on the Hodgkin en non-Hodgkin vzw website. This website is also host to a multitude of information and resources, including a library portal, information booklets, useful website links, advocacy information, a discussion forum, and upcoming news and activities.
Engaging with Patients
The organisation engages with patients both one-on-one, and through larger-scale events they host.
“When we visit with patients personally, we like to do this in their own home. When they are in the hospital, they have much to think about and may not have a lot of time to speak,” he said.
At the individual level, they aim to listen to the patient’s questions and concerns and provide them with the appropriate information and support. Beyond individual interactions, Hodgkin en non-Hodgkin vzw hosts four patient-centric events annually. These events provide opportunities for all the patient members to come together as a community, and attendance typically exceeds 100 people. Hodgkin en non-Hodgkin vzw has designed their events in a way that is sensitive to both the educational and emotional needs of the patients they support.
For example, this year, the event schedule includes the following:
- Rare Disease Day (February 2018): Informational workshop lead by specialist physicians and researchers
- Botanical Gardens (April 2018): Patient networking event, lunch and walk in the gardens
- Boat Cruise (September 2018): Patient networking event, small boats of 10 so patients choose who they want to ride with and use the time to speak about their experiences more intimately
- Educational Symposium (October 2018): Informational conference hosted once every two years, hosted at the University of Ghent, 4 speakers giving talks on lymphoma subtypes, radiation, and new treatment regiments
Though tremendous progress has been made by and on behalf of patients in Belgium, Jean Pierre maintains that there is still much to be done.
Thank you to the Hodgkin en non-Hodgkin vzw team for the specialised support they provide to patients and their families in Belgium!