The Early Days of the HIV Epidemic and Community Mobilization
“When there is no clear path to follow, those who dare to venture elsewhere can forge a new path for themselves and for those who will come after them.” — Inspired by “Desert Wisdom”
La Corporation Félix Hubert d’Hérelle was established in 1989 as a non-profit organization to meet the housing needs of individuals living with HIV/AIDS.
In the early 1980s, the global emergence of AIDS posed a profound challenge to individual and public health. The quest to prevent and combat the epidemic caused by the human immunodeficiency virus (HIV) became a concern for researchers and health professionals worldwide.
In Quebec, various groups emerged with a mission to educate the population on the importance of adopting preventive behaviours, and to provide support and assistance to those living with HIV/AIDS. The task was not an easy one. The actions of these organizations spanned multiple areas simultaneously, including information dissemination, empowerment, mutual assistance, combating discrimination, establishing care and support networks, addressing housing needs, etc.
In February 1988, in response to the urgent need for housing for Montréalers living with HIV/AIDS, the Ministère de la Santé et des Services sociaux, the Ville de Montréal and Centraide published a call for proposals in newspapers to launch a pilot project for a housing facility for people living with HIV/AIDS who had lost their autonomy. Five groups expressed interest and submitted proposals, and CSAM (Comité Sida Aide Montréal) and La Salamandre were invited to present a joint project. The project was approved in September 1988 and officially became La Corporation Félix Hubert d’Hérelle. The planning and implementation of this project was a collaborative effort involving people living with HIV/AIDS and organizations already active in the fight against AIDS.
The Corporation’s first achievement was opening Maison d’Hérelle. The demonstrative nature of this experimental project illustrated the partners’ willingness to be flexible, adaptable, and progressive in addressing the housing needs of people living with HIV/AIDS. La Corporation d’Hérelle could then serve as a teaching and support resource for the establishment of other housing facilities adapted to the specific needs of people living with HIV/AIDS.
Maison d’Hérelle and Palliative Care
Maison d’Hérelle opened in May 1990 in the heart of Montréal in the urban yet peaceful Plateau Mont-Royal neighbourhood. The residence, which initially housed 11 people, is recognized in the community for providing quality end-of-life care. The palliative care program seamlessly integrates spiritual support and natural approaches with the conventional biomedical approach.
At the time, the majority of residents were admitted for end-of-life care. One bed was set aside for respite care, providing emergency accommodations to ease the burden on loved ones and families. In addition, a transition program was implemented to prepare residents for reintegration into the community. In response to the growing needs of people living with HIV/AIDS, Maison d’Hérelle expanded to 17 beds in 1996.
The Advent of ARVs and the Return to Active Life
In 1998, Maison d’Hérelle enhanced its transitional program. The introduction of the first antiretroviral treatments, followed by multi-drug regimens, significantly improved the quality of life and life expectancy of many people living with HIV/AIDS, enabling some to return to their homes.
In the early 2000s, the introduction of multi-drug regimens significantly extended the life expectancy of many in the HIV/AIDS community. However, for a significant number of people, the return to an active life is accompanied by residual effects of the disease and the medications. This often manifests as a loss of physical autonomy and symptoms of dementia. These challenges are compounded for those who experience social isolation.
In 2001, in partnership with Centraide, the Community Aftercare Program was created to provide home-based support. As such, Maison d’Hérelle emphasizes the importance of a natural living environment to minimize relapses and consequently reduce the frequency of hospitalizations.
HIV Chronicity and Access to Adapted Housing
For many years, Maison d’Hérelle was concerned about the future of residents whose health was too good to be admitted to a residential and long-term care centre (CHSLD), but who were still not able to live independently, even if their health had stabilized.
At a meeting in 2002, members of the Montréal Table de concertation des Maisons d’hébergement communautaires VIH et Sida noted that some residents who no longer needed ongoing care but were nonetheless unable to live independently, were unable to move on due to a lack of housing adapted to their needs. Meanwhile, the list of pending admissions was growing.
Eager to solve the problem, the Table de concertation challenged its members to come up with a new housing solution that would meet these needs. With the support of the group, La Corporation d’Hérelle took up the challenge and worked for several years to develop a project along these lines. In 2006, the Studios project was approved by the Office municipal d’habitation de Montréal.
Another situation, this one in the fall of 2006, perfectly illustrates our philosophy that every crisis is an opportunity for change, creativity, and growth. The gradual collapse of part of the façade at Maison d’Hérelle made the evacuation of six residents increasingly urgent, but the lack of suitable housing made it difficult to relocate them. It was out of this necessity to provide suitable housing for these people that the Satellite Apartments Project was born.
Out of a desire to involve people living with HIV/AIDS as much as possible in the development of the project, the prospective tenants met for several months with the Satellite Apartments Coordinator to make this project a reality. They worked together to create a set of rules for the apartment and agreed that they would be leaseholders rather than residents, which would give them certain rights. The name “Satellite” was chosen because it revolves around La Corporation d’Hérelle.
The first Satellite apartment, located in the Côte-des-Neiges neighbourhood, welcomed its first tenants in February 2007. It can accommodate up to six people with psychosocial vulnerabilities. The idea for this partially supervised housing facility was that the tenants, although artificially assembled, would form a social bond of mutual assistance and sharing that would be helpful, even therapeutic, for each individual. We felt that this bond would survive our absence, that what “connected” them would remain after we left. This project was so successful that another Satellite apartment opened its doors in January 2011!
A new building with 15 private studios and a community lounge opened in the Hochelaga-Maisonneuve neighbourhood in December 2007. This project is mainly supported by the Société d’habitation du Québec (SHQ)’s AccèsLogis program, by Human Resources Development Canada (HRDC)’s Community Action Partnership Initiative (CAPI), and by the City of Montréal. These low-rent social housing units are designed for people at risk of homelessness who wish to draw on the support of their peer group.
In order to simplify the use of the organization’s name, the designation ‘Maison d’Hérelle’ is now used in the communications tools of all housing facilities.
HIV is Changing, and So Are We!
The development of new housing resources reflects who we are: able to innovate in an emergency, even when there seems to be no way out, as well as to carefully develop a project over several years. Whatever the method, la Maison d’Hérelle is always committed to finding housing solutions that are adapted to the daily lives of people living with HIV/AIDS.
In addition to our Community Aftercare Program, our diversified living environments (transitional housing, Satellite Apartments, and the Studios) now allow us to adapt very quickly to the regularly changing needs of our users. The complementary nature of the three types of housing, combined with the ease of relocation within La Corporation d’Hérelle, is an undeniable advantage. We can now offer users a whole range of choices, whether they need more independence or more support.
Advances in treatment are changing the face of HIV, and at Maison d’Hérelle, we are also changing to provide the most appropriate support for this new reality.