A Peek at France Lymphome Espoir
Until recently, France Lymphome Espoir (FLE) has relied heavily on volunteers as well its president, Guy Bouguet, to get things done.
“When you are a growing organisation, it means you have to do almost everything and anything,” said Guy.
But that is starting to change with the hiring of two part-time staff: one to help with administrative duties such as answering the phone, mail and email; and the other to assist with the development of the organisation’s membership and volunteer network.
FLE was co-formed in 2006 by Guy and he has been the president ever since. While he refers to the organisation as his “baby,” he has come to realise that it doesn’t belong to him or those who run the organisation.
“It belongs to the patients and that’s why we do it, it’s a service we provide,” he says.
Guy’s main concern is to ensure that the organisation has educational materials to meet all needs from those who know a lot about lymphoma to those who know very little. The website contains information on the different types of lymphomas as well as brochures that can be downloaded and printed.
“Our main job is to help, in any way we can, ensure the patient maintains a good quality of life on their journey with their disease,” he said.
Patient Forum an Essential Feature
One of the key features of the website is the patient discussion forum which has 2,144 members. Within the forum, there are numerous sub-forums. For example, there are discussions on the different types of lymphomas; others that discuss the various treatment options and side effects, and how to get financial help.
While the forum is auto-moderated, i.e., people within the forum moderate their own discussions as it’s an environment they wish to protect, Guy said that there are moderators who are long-standing members of the association who, once a day, make sure there are no inappropriate posts and that forum members are following the rules.
“Forum members can be expelled if they don’t follow the rules such as posting inappropriate or out of context remarks that may be religious in nature, for example,” he said.
Key Role of Research
Recognising the importance of research in advancing the understanding of lymphomas, FLE offers two scholarships annually: one for clinical research and the other on quality of life. FLE started awarding the scholarships in 2009 and each one is worth €15,000. All applications are reviewed by a jury that is made up of three members of FLE’s scientific committee and three members of FLE’s board of directors. They review the applications and then vote on who should be awarded the scholarships.
The research scholarship is open to young researchers (under 40 years). The 2013 scholarship was awarded to Professor Sylvain Fisson whose initiative entitled “New Therapeutic Approach for Ocular and Cerebral Lymphomas” will seek to determine if it is possible to administer monoclonal antibodies via the spinal fluid.
“It is very difficult for monoclonal antibodies to cross the cerebral fluid membrane,” said Guy. This initial phase of the research is being undertaken in mice and, if successful, the next step will be to examine this form of administration in humans. Results are expected within a year.
Quality of life research projects can be led by doctors, nurses or associations. However, the research must be reproducible, i.e., it cannot work in just one hospital or setting. The 2013 quality of life research scholarship was awarded to Marion Bruand. Her research initiative is entitled “Pilot Study on the Quality of Life Benefits of Osteopathy in Lymphoma Patients Undergoing Autologous Transplant.” It is anticipated approximately 40 patients will be enrolled in the study. Results are expected within the year. The goal of osteopathy is to improve or restore the normal physiological function of interrelated body structures and systems and, consequently, enhances the body’s natural ability to heal itself. Various manual assessments and techniques are used.
Lymphormons-nous: A Premier Event
One of the big initiatives being undertaken by FLE this year is Lymphormons-nous, a one-day conference taking place on April 5 in Toulouse. The first such conference was held in 2012. The meeting is intended for all haematologic malignancies not only lymphomas as it was felt that would have a wider appeal. The planning committee for this meeting included physicians from Toulouse, members of FLE’s scientific committee, patients as well as other FLE association members.
“The goal is to try and hold this annual meeting in provincial cities so everything is not always in Paris,” said Guy. Other reasons include wishing to raise FLE’s visibility in the Toulouse area and hopefully gain volunteers and new members for FLE. It is also a way to bring patients, families, care givers, doctors and specialists together for an exchange of information.
The focus of this year’s meeting is the different journeys; namely, the journey of the:
- Approval process
- Treatment decision
The sessions will focus on understanding why lymphocytes mutate into haematologic malignancies and how this understanding helps inform research; how molecules are developed and how they may eventually become therapies; economic issues that arise when developing a disease like lymphoma such as the cost of therapy, the cost to society as well as the cost of lost productivity. Each presentation will be followed by a question-and-answer session.
What is new this year, says Guy, is the multidisciplinary session during which all specialists involved in making treatment decisions will sit around a table to demonstrate how such decisions are made.
“We’re doing this to show that treatment decisions aren’t made by one person but by a team,” he said.
Eight specialists will be involved in this session. Another reason for doing a multidisciplinary session is that people don’t understand what is meant by a multidisciplinary. The specialists will review two case studies.
The last part of the day will comprise three workshops with attendees selecting to go to one of them. The first workshop topic will examine issues that arise following the conclusion of treatment such as reintegration into the workforce, long-term monitoring and insurance. The second workshop will review issues relating to bone marrow transplant and the third one will examine the role of the care giver and the importance of this role.
“We’re expecting about 300 attendees but would like more although it’s difficult to get people moving in France,” said Guy. He’s not sure why people are reluctant to travel. For those not attending the conference, the presentations will be put on the FLE website and a summary of the meeting published.
Wishing FLE a successful Lymphormons-nous.