People living with AIDS and seeking palliative and support care in the Maritimes often face long wait times only to travel all the way to Toronto for help at Casey House, says Haligonian Donelda Kent. Kent says she learned about the situation after meeting with Tracey Hatten, senior development officer at Casey House on a visit to Toronto.
“I left there in tears and decided to do a fundraiser,” Kent says.
When she returned to Nova Scotia she says she earned the support of representatives from local HIV/AIDS organizations for an event in Toronto.
“They thought it was a great idea to come and do this,” she says.
Kent organized a party called It’s Reigning Men, to be held Thu, Aug 30 at Berkeley Church. Kent says a portion of the bar sales will go to Casey House.
The Nova Scotia Advisory Commission on AIDS counsels the provincial government on issues relating to the disease. Larry Baxter, the chair of the commission, says his group is working with the community in Nova Scotia to develop a strategy to deal with housing and care.
“Generally there’s a need to improve hospice palliative care in Nova Scotia,” he says. “It’s not just HIV/AIDS. It’s a general issue.”
But, says Baxter, there is still no hospice care available in Nova Scotia.
“We did have a hospice setup, not nearly as comprehensive as Casey House,” he says. “It was more of a transitional residence. It closed because of lack of continuous need and that was many years ago, so there was an attempt but at that time it wasn’t able to sustain itself.”
“The government didn’t deem it necessary to have something like Casey House in Nova Scotia,” says Kent. “Everything’s all about money. I think up to this point it’s a lack of somebody to step up and say, ‘Hey, we really need this’ and really push for it.”
For Kent the fundraiser is an opportunity to raise awareness of the social stigma attached to HIV/AIDS by helping people to understand the complexities of living with the disease.
There are many challenges faced by people from the Maritimes. Moving to Toronto can mean finding work and a new social network and starting a new life in another city, all while living with HIV/AIDS.
Kent is worried that for all the help Casey House provides, moving to Toronto can have an adverse impact on the already precarious health of someone living with AIDS.
“The thing that concerns me is that we’re sending people away from their environment, their family and friends,” says Kent. “Casey House is an excellent hospice but they only have 13 rooms.”
That means some people from outside of the province who come to Toronto for Casey House services have to find suitable places to live.
“They have rooms around the downtown Toronto area,” says Kent. “I can’t see why our people can’t just stay at home in Nova Scotia and have those services offered there within travelling distance.”
“The face of HIV and AIDS is changing with the advent of anti-retroviral medications,” explains Hatten. “People are living longer and their needs are very different than in 1988 when Casey House was established.
“In 1992 the average length of care was 33 days,” she continues. “Today we manage an ongoing caseload of up to 120 people and the average length of care is approximately 400 days, so obviously the funding requirements to be able to provide that service are much greater now.”
Hatten wouldn’t go into specifics about the length of Casey House’s waiting list or the home cities of the people on it, but Kent says there are almost 120 Maritimers in line.
“If the house is full somebody may have to wait several weeks to a couple of months,” says Kent.
“We do care for a lot of individuals who are not originally from Toronto,” says Hatten. “They haven’t necessarily come to Casey House from Vancouver or Edmonton or PEI, but they’ve come and have then had services provided to them by Casey House.
“The community programs, which are what we do the fundraising for, receive very little government funding,” she continues. “So we are 100 percent dependent on donations from individuals, corporations, foundations and third-party fundraising events like what Donelda is doing for us.”