Interview conducted by
Laval de Launière has two professions: he is the Director General of the Adult Cystic Fibrosis Committee of Quebec (ACFCQ) and a social worker in the cystic fibrosis clinic at the Hôtel-Dieu Campus of the University of Montreal Hospital Centre (CHUM).
Santé vous bien (SVB): Laval, you will soon be leaving the Adult Cystic Fibrosis Committee of Quebec (ACFCQ) and devoting your time to social work at the Hôtel-Dieu Campus of the CHUM, so this is a good opportunity to take stock of your lengthy involvement of over 30 years with Quebec’s cystic fibrosis patients. Your educational background is in school and occupational counselling, so the question is obvious: Why cystic fibrosis?
Laval de Launière (LdL): I have a Bachelor’s degree in school and occupational counselling and a Master’s degree in counselling. Why cystic fibrosis? It was simply a set of circumstances. When I was 30 years old, I was lecturing at Laval University in affective psychology and was looking for a full-time position. The problem was that I wanted to live in Montréal and keep my course load in Quebec City. By chance, the late Dr. Roger Lasalle, who was then the director of the cystic fibrosis clinic at the Ste-Justine Hospital, was looking for a part-time professional counsellor who would be responsible for facilitating the social and occupational integration of cystic fibrosis patients. He clearly saw a future for his young patients and wanted to prepare them for it.
SVB: Did you apply for the position?
LdL: My professional order informed me about the job opening, so I submitted my application to Dr. Lasalle. The day before the interview, I did a little research at the library to find out more about the disease. The only thing I knew about it was what I had read on a poster at the time, which featured a young girl breathing with difficulty through an oxygen mask. On the day of the interview, Dr. Lasalle told me I was hired.
SVB: How did your first contact with the patients go?
LdL: I had my first contact with the clientele one afternoon at the clinic, in the commotion of a waiting room at Ste-Justine. I was stunned to see all these youths, alone or with a parent. The atmosphere was charged with an inexpressible vitality. While the children were drawing or running around under the watchful gaze of their parents, the teenagers and few adults with cystic fibrosis were patiently waiting their turns, sitting on chairs that were too small for them. I never expected to meet such “normal” people with such distinctive individual differences. I fell under their spell.
SVB: How did you adapt your intervention approach?
LdL: I had to be innovative. First, I wondered how I could help my clientele in such an unconventional venue as a clinic or hospital room. In other words, how could I get these youths involved in planning their futures if I only saw them very briefly—once every three months—when they visited the clinic? Naturally, I was able to catch up with some of them during their hospital stays. However, I could see that there were limits in overexposing them to my concerns about their futures, so I decided that I would develop a bond with them first, then find the best approach.
SVB: What did you learn through your special relationship with the cystic fibrosis patients?
LdL: Among other things, I discovered that there are as many ways to experience the disease as there are patients, and that the human dramas that have marked the history of cystic fibrosis had obviously influenced the patients’ self-perception and their relationship with the disease. I also learned that human beings, whether they suffer from cystic fibrosis or not, have an incredible ability to adapt. Lastly, I realized that many people with cystic fibrosis live extremely solitary lives.
SVB: How were you able to pick up on their solitude?
LdL: Through the subjects they avoided talking about. In the early 1980s, when the median survival age was in the low 20s, we didn’t broach subjects related to the future (work, long-term relationships, procreation, etc.) with cystic fibrosis patients out of fear of making them feel uncomfortable. In short, the future belonged to . . . others. It is no exaggeration to say that there was a genuine “culture of death.” Truth be told, death was very present and hard to hide. The sicker the patients were, the more time they spent in the company of fellow hospitalized patients and the more they were exposed to losing friends with cystic fibrosis. Death occurred frequently, affecting us all very deeply. You can imagine what was going through the minds of the survivors: “Will I be next?” I cannot stress enough how empathic and helpful the hospital personnel were under the circumstances.
SVB: Was the Adult Cystic Fibrosis Committee of Quebec created in response to this situation?
LdL: Many people, including myself, felt that adults with cystic fibrosis were a source of affirmation to be explored. As the population of adults with cystic fibrosis grew, it offered more and more success models to the younger population, showing them that they had a future. It therefore became necessary to create favourable conditions for their social and occupational integration. This was the mindset behind the creation of the ACFCQ in 1985. If there was to be a future, they had to be prepared! And what better way to prepare themselves than by means of tools such as the ACFCQ? It was with a mix of enthusiasm and scepticism that six adults with cystic fibrosis from the Ste-Justine Hospital agreed to roll up their sleeves and give shape to a project that would soon become province-wide through the involvement of adults with cystic fibrosis from across Quebec.
SVB: Was the cystic fibrosis clinic at the CHUM’s Hôtel-Dieu Campus established at around the same time?
LdL: Yes, it was. While we were trying to make the children and teenagers understand that they could live to be adults, the ambitious transfer of adults with cystic fibrosis from the Ste-Justine Hospital to the Hôtel-Dieu de Montréal was taking shape. However, there was tremendous resistance to this project, which was spearheaded by the administration at Ste-Justine and supported by Drs. Roger Lasalle and Alphonse Jeanneret. Some of the patients couldn’t bring themselves to leave what had become their second family, while others felt betrayed. Were they not all destined to die at Ste-Justine?
SVB: I guess you played an important part in this delicate transition?
LdL: The transfer of the first cohort of adults with cystic fibrosis from the Ste-Justine Hospital to the Hôtel-Dieu de Montréal took several years. Over that same period, I gradually changed employers and began working for Dr. Alphonse Jeanneret, who was the founder of the cystic fibrosis clinic at the CHUM’s Hôtel-Dieu Campus and its director at the time. By continuing to work a few hours a week at Ste-Justine, I was able to make sure that the transfer was carried out under the best possible psychological and social conditions for the patients. I was also a stable, reassuring presence because they knew that I was in touch with the personnel at Ste-Justine. At the same time, I was strengthening my ties with the adult cystic fibrosis community in Quebec through my work in connection with the ACFCQ’s mission.
SVB: What was the mission?
LdL: From the time of its foundation, the ACFCQ has dedicated itself to the quality of life of adults with cystic fibrosis in Quebec. Essentially, it aimed to give adults with cystic fibrosis the tools that would help them take charge of the disease. The reality of adults with cystic fibrosis was changing and inevitably creating new needs that we had to identify and address with what knowledge and means we had. In the wake of enthusiasm over the opportunities provided by the ACFCQ, and burning with impatience, I bought the “629” (629 Prince Arthur Street West, in Montréal), which became a private resource for adults with cystic fibrosis. This downtown Montréal residence would become the headquarters of the ACFCQ and, for over 20 years, house Quebec’s adults with cystic fibrosis in need. Twenty adults with cystic fibrosis chose to live there during those years, some for a few months, others for several years. Twenty-seven years later, the ACFCQ is still headquartered at the “629.”
SVB: Was there any resistance to this bold project?
LdL: Obviously. The resistance stemmed mostly from the Quebec Cystic Fibrosis Foundation (QCFF), now Cystic Fibrosis Quebec, which was not impressed with the arrival of another cystic fibrosis association. The QCFF couldn’t fathom why adults with cystic fibrosis involved with the newly developing ACFCQ weren’t finding fulfilment with the QCFF and were so uninterested in sharing its main mission, namely to raise funds for research. The ACFCQ was an emerging organization, still quite fragile, that had to think independently in order to define its own mission as an association. Keep in mind that the handful of ACFCQ administrators were young adults seeking independence and empowerment, while the QCFF administrators were mostly parents obsessed with the desire to save their children through scientific advances. A completely different dynamic was at work at the ACFCQ. Discussions focused on taking charge of the disease, independence, empowerment, love relationships, overprotective parents, access to the job market and so on. The ACFCQ was first and foremost a community organization providing its members with mutual assistance and support.
SVB: Do you think the situation for adults with cystic fibrosis has changed much over the past 30 years?
LdL: Changed!? To repeat an expression I used earlier, the “culture of death” has given way to a “culture of life.” Thirty years ago, cystic fibrosis was essentially a childhood disease. Adults with cystic fibrosis were very rare. They were considered to be living on borrowed time, without a real future. Who would have thought that the median survival age would rise from the early 20s to 48 years of age, that adults with cystic fibrosis would outnumber children with the disease, that lung transplantations would extend patients’ lives by many years, that women with cystic fibrosis—and more surprisingly still—men with cystic fibrosis, who are infertile, would be having so many children and even grandchildren, or that so many adults with cystic fibrosis would enter the job market? And the list goes on.
SVB: Do you think the ACFCQ played an important role in the history of cystic fibrosis in Quebec?
LdL: A discreet role, maybe, but certainly a significant one. The ACFCQ was and remains a key organization for many adults with cystic fibrosis in Quebec. It helped break their isolation and provide them with a sense of belonging, while giving them the tools for taking charge of their disease. The ACFCQ played an important national and international role by championing patient information and providing a unique organization model in cystic fibrosis circles. For those who are unfamiliar with the ACFCQ’s structure, I should point out that 20 of the 22 members of its board of directors have cystic fibrosis and represent Quebec’s various administrative regions. There is something unique about a cystic fibrosis aid agency being managed by the very people who benefit from it, not to mention that it has been around for 27 years, despite the difficult moments that a disease like cystic fibrosis puts the organization’s members through.
SVB: You are about to leave the organization. How do you see the ACFCQ’s future?
LdL: The ACFCQ has changed a lot from the time of its foundation. At first, I was the driving force of the organization, so to speak. With the support of a small administrative team of six adults with cystic fibrosis—the Committee’s founding members—I tried to help the organization become as self-sufficient as possible while fulfilling its social mission. Over time, with the contribution of volunteers with cystic fibrosis and new funding, the organization has gained momentum. It has become more structured, more functional and clearly more representative. Today, the ACFCQ’s administrators are in full control of the organization. My departure should open the way to new adjustments and enable the organization to become even more independent. Many challenges lie ahead for the ACFCQ. It has to play a more active part on the social networks and with public decision-makers, develop improved funding strategies and increase its full-time staff. It also has to develop closer ties with its worthy partners: Cystic Fibrosis Quebec, Cystic Fibrosis Canada and the Fondation l’air d’aller—its survival depends on it. Although the ACFCQ has every reason to be satisfied with its infection prevention policy, it will have to use new communication technologies to better integrate those who fear being in the presence of other adults with cystic fibrosis or those who present a danger to others because of the nature of their bacteria. Adults with cystic fibrosis can be very proud of their organization, and I want to thank everyone who accompanied me on this great adventure.
SVB: On behalf of Quebec’s adults with cystic fibrosis, I want to thank you very much for all these years of exceptional commitment and dedication.