The world was a hard place for those affected by HIV/AIDS in the late 20th century.
“In 1988, when Casey House was founded, there was a great deal of fear and ignorance about AIDS and homosexuality,”
explains Casey House’s chief executive officer, Stephanie Karapita.
“People were terribly afraid. They didn’t know about how the disease was transmitted and the stigma was very intense. There were so many people dying alone and in a great deal of pain and discomfort. It was clear that much more had to be done.”
On March 1, 1988, amid all the chaos emerged a hope in Canada for all those who didn’t know where to turn. That ray of light was Casey House — Canada’s first standalone AIDS facility and Ontario’s first freestanding hospice. Volunteers, including social activist June Callwood, defied the stigma surrounding this newly emerging disease and created Casey House as a beacon of compassion and hope for all those affected by HIV/AIDS.
When I first got involved with the organization shortly after its creation, I had been watching helplessly as many of my friends and colleagues succumbed to AIDS. There was a time when I attended 20 or 30 funerals a year. I saw how the public, their families, and the hospital system treated them and knew that Casey House was the better way. There was compassion and empathy for the clients and their family. And that level of kindness and dedication continues to this day. I first got involved by writing charitable receipts for donations. Within a few years, I was named chair of fundraising, then board member, and finally, I served as president.
What’s incredible about Casey House’s origins is how brave and creative its founder had to be. As one of the only freestanding hospices in the world specializing in HIV/AIDS at the time, there weren’t really any tried and true examples of how things should be done. So each decision was a new one. There were no treatments available at that time, so all we could do was focus on giving the best, most compassionate palliative care possible.
When Casey House began in 1988, 80 per cent of the people admitted died during their stay. Now, 25 years later, 85 per cent of the people cared for at Casey House are actually discharged back home. The organization offers treatment, support, and palliative care for people affected by HIV/AIDS in collaboration with the community. It also offers home care and outreach programs like the home hospice program, which is particularly near and dear to my heart. The home hospice program caters to those who prefer to receive care in the comfort of their own homes, giving them that option. Twenty-five years ago, individuals living with HIV/AIDS had no treatments and very few options. It’s incredible that now, thanks to organizations like Casey House, those affected by HIV/AIDS have resources and supports available to them. And in addition to aiding those living with HIV/AIDS, Casey House also offers support to the partners, family, and friends of those affected by the disease.
Believe it or not, one in 120 Torontonians is now HIV-positive. To meet the demand of all those in need, Casey House is currently designing a new facility that will extend the current building out to Jarvis Street, more than doubling the hospice’s capacity. Between the ongoing high infection rates and the advances in treatment that have, thankfully, increased the life expectancy of those living with HIV/AIDS, the population of people living with HIV in Toronto grew 35 per cent from 2003 to 2008 alone, and it continues to grow.
“There are more people living with HIV now than 25 years ago, when we opened our doors,
“People once came to Casey House to die, but today, the vast majority of our clients need us for supportive, rehabilitative health care. Our clients on average have five or more clinically complex health care issues layered on top of their HIV status — from a variety of cancers, to brain disease, to addictions. We’re addressing much more clinical complexity than we did in our early years.”
This means Casey House’s current 13-bed hospice and outreach model faces challenges in providing the kind of care those living with HIV/AIDS deserve. In addition to providing an increase in capacity, Stephanie explains the expansion will also make it possible for Casey House to launch a new model of care that includes a Day Health Program. This new program will help address the rising number of HIV-affected individuals living with complex clinical situations by giving them access to a wide variety of services, including scheduled and unscheduled appointments with nurses, social workers, mental health and addiction workers, and consulting psychiatrists.
“We’re building on the tradition of our founders of pioneering health care leadership. This is an innovative response to a disease that is very challenging to treat — and impossible to cope with alone,”
Casey House hopes to have the new space open and ready to continue the organization’s valuable work by 2016. If you would like to help make this goal a reality or to assist with the organization in a more hands-on capacity, head over to the Casey House website to find out how you can donate or volunteer.