Member Best Practices
Soutien et Information Leucémie Lymphoïde Chronique (SILLC), France
Just after the millennium, Christian Puppinck, the president of Soutien et Information Leucémie Lymphoïde Chronique (SILLC), received a diagnosis of chronic lymphocytic leukaemia (CLL) and wanted to find out more about his cancer.
“Even though he was a clinician, Christian could not find any relevant information,” said Pierre Aumont, who is in charge of international relations at SILLC. As a result, Christian along with two or three other patients, one of whom had Waldenström’s macroglobulinaemia (WM), formed SILLC in 2007. They thought it was important to provide help, support and information to patients with these rare cancers. SILLC is based in Paris, France, but has representatives in the different regions of France. Today, SILLC has 2,500 members.
Pierre joined SILLC in 2016.
“I met Christian at my place of work where he was the company doctor. As I was retiring, I had already told Christian I had CLL. He asked me to join SILLC even though I was not knowledgeable about CLL,” said Pierre who has early-stage CLL and has not yet undergone any treatment. Given Pierre’s experience with international business in his work with an energy company, Christian felt that this could be of help to SILLC.
“Christian wanted SILLC to have a more global presence so needed someone who could work at the international level as that is where many decisions are made. He also wanted someone who be aware of what is happening at the regional level especially when it applies to patients,” he said.
Opportunities for Expanding SILLC’s Presence
During the year that Pierre has been at SILLC, he has identified a number of opportunities for increasing SILLC’s presence.
“I’ve met other CLL patient advocates and members from other associations and we decided to create a global network which is the CLL Advocates Network, (CLLAN),” he said. Pierre is the vice chair of CLLAN’s steering committee. Formed in 2016, CLLAN has already had one meeting that took place in Belgrade, Serbia, in November 2016.
SILLC also became a member of EURODIS, the rare diseases group in Europe.
“I have been elected as a patient advocate and am a member of a subgroup that focuses on haematology diseases. Our goal is to introduce the patient voice in decision making in Europe,” Pierre said.
In March 2017, SILLC joined the Lymphoma Coalition (LC).
“I think that CLLAN and LC are complementary because CLLAN focuses on one subtype within the family of lymphomas and does not yet have a great deal of experience as it only launched a year ago; whereas LC has a wider focus and a great deal of experience,” he said.
The main objective of SILLC is to inform and support patients who have either CLL or WM.
“We provide support and information but no diagnostics,” said Pierre.
SILLC also plays a role in lobbying.
“SILLC is trying to be involved at the different levels of decision making that will have an impact on patients. So, we meet regularly with the different health authorities as well as industry as we need to better understand the evolution of treatments,” he said.
SILLC has no staff. All work is done on a volunteer basis by a board of directors comprising nine people. Among other tasks that the board undertakes are the management of the website, moderating the online forum, and monitoring and updating information on CLL and WM. In addition to the board of directors, SILLC has seven regional delegates, a six-member scientific committee whose role is to follow new developments and a four-member ethics committee to ensure SILLC follows the rules.
SILLC's Support for Patients
Throughout the year, SILLC holds about 10 meetings in different parts of France. The meetings are organised with the help of the regional delegate and a local clinician.
“The purpose of the meetings is to inform patients about the cancer, treatments and latest developments,” said Pierre.
The meetings, usually lasting three hours, comprise talks from clinicians and SILLC, as well as a question-and-answer session, an important part of the meeting.
“These meetings provide a unique opportunity for patients to talk about their cancer and to speak to a haematologist outside of the office,” he said.
Pierre estimates that more than 50 patients attend each meeting.
The online forum is intended for exchanges between patients as well as the association.
“There is no clinician involved in the discussions but if the forum’s moderator feels it necessary, he can advise patients to see a haematologist,” said Pierre.
SILLC has also collaborated with haematologists to develop booklets that provide patients and their relatives with an explanatory document.
“As well, SILLC has created a video on the pathophysiology of the lymphocyte for both CLL and WM,” he said.
Finally, to popularise certain biological concepts necessary for the understanding of these diseases, SILLC created 11 different cartoons that make the explanations more playful.
Challenges Facing Patients with CLL or WM
“One of the most important challenges facing patients is the way in which they will be treated in the future,” said Pierre.
Many of the new treatments will not require a patient to be in hospital but rather to take them at home.
“The concern is around how patients will be monitored to ensure that they are taking the treatment correctly to receive the maximum benefit and that they are not on their own when they experience any side effects,” he said.
To resolve this issue, SILLC is working with Guy Bouguet from France Lymphome Espoir to develop a platform that will support patients.
“The platform would include nurses, general practitioners and haematologists who would follow the patient to ensure everything is in order,” he said. This platform is still in the early stages of development.
On the whole, though, Pierre is satisfied with the way in which healthcare is provided to patients with either CLL or WM.
“While there is always room for improvement, when we compare ourselves with other countries, I don’t think France is the worst country in which to have either CLL or WM,” said Pierre.
Among the challenges confronting SILLC are how to reach patients and making the patient’s voice heard among stakeholders. The stakeholders are mainly health authorities but also include industry, hospitals and general practitioners who are mostly not well informed about rare diseases.
“The issue of reaching patients is always present. For example, if we organise a regional meeting, how do we inform people? We have our members but we try and reach those who are not members and who would benefit from attending,” said Pierre.
SILLC only recently joined LC and is looking at exactly how LC could support its efforts.
“LC is a well-established network so we can meet with other members to learn from them and perhaps collaborate with them on different projects,” he said.
Many thanks to you, Pierre, and all those who are involved with SILLC for providing support and information to those patients with these rare cancers, as well as for your efforts to ensure the patient’s voice is heard.
May 4, 2017