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HIV/AIDS groups scramble for cash after federal transition funds dry up

File photo - Prime Minister Justin Trudeau raises the World AIDS Day flag in Ottawa Thursday, Dec. 1, 2016. THE CANADIAN PRESS/Justin Tang

Ottawa resident Randy Hill went to Bruce House for help in early 2014 after his mother, father and brother passed away, all within five months.

Bruce House, a well-known community organization in Ottawa that supports people living with HIV and AIDS, housed Hill and helped him get back on his feet. Hill was matched with a “buddy” through one of Bruce House’s key support programs. The buddy regularly took him out for coffee or to a movie, and served as a vital social connection as he grieved the loss of his family.

“Bruce House is, and has been since 2014, an extremely important aspect to my survival,” Hill said.

Bruce House is one of six organizations dedicated to HIV/AIDS research, awareness or support services based in Ottawa that didn’t have their annual federal funding renewed by the Liberal government in 2016. These groups say they’re in real danger now of having to significantly scale back their programming and operations as a result.

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Hill, 51, does reception work in Bruce House’s office once a week. He is one of the 150 volunteers who assist with day-to-day operations and who help administer the organization’s rehabilitation and support services.

But that volunteer program is now under threat, a manager says, because the organization relied on an annual government cheque to coordinate and run it.

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“This can’t (and) won’t sustain. There’s no way,” said Linda Truglia, who manages volunteer services and community relations at Bruce House. “Our volunteer program won’t continue; we won’t be able to build on it; I most likely won’t have a job because you can’t pull money out of air.

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“We’re looking for other avenues and I’m not going to give up. But it’s a shame that the federal government isn’t helping us.”

In 2016, the Public Health Agency of Canada decided to realign its priorities for HIV/AIDS to focus on prevention and education rather than support and care for those already living with the virus. That move allowed for 41 new organizations to receive federal cash, but about 33 per cent of community-based HIV/AIDS groups in the country lost thousands of dollars each in annual funding.

Twelve of the 40 defunded groups are located elsewhere in Ontario — including in Toronto and smaller cities like Kingston, Peterborough, Guelph and St. Catharines.

The funding was supposed to dry up in 2017. Following an outcry, former Health Minister Jane Philpott unveiled so-called “transition funding” that would help fund organizations until March 31 this year.

Now that those funds have expired, groups say they’re getting desperate.

The Canadian AIDS Society is also among the affected Ottawa-based groups. Founded in 1986 as a “national voice” for Canadians living with HIV, the society lost half a million dollars in annual federal funding. And now that the transition money has run out, executive director Gary Lacasse said he’s a hair’s breadth away from shutting down the organization altogether.

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Lacasse said he had to fire all of his permanent employees and replace them with temporary staff, and was forced to cancel the society’s annual national forum that brought together people living with HIV. The forum was the only one of its kind in Canada, he said, and took place every year since “the beginning of the HIV epidemic.”

On top of that, the national group is finding it tough to help organize a “National HIV Testing Day” planned for June 27, and said it can “no longer champion” the AIDS walk that takes place in 27 different locations across the country every year to raise funds for local service organizations. Lacasse said his organization will have to mothball a national public awareness campaign about rising rates of HIV that the group had been working on.

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The Trudeau government’s decision to prioritize HIV prevention came ahead of a government report published in late 2017 that showed the number of new HIV cases per year in Canada is climbing.

In 2016, there was an 11.6 per cent spike in the numbers of reported annual HIV cases in the country, according to the report published by the federal public health agency. The 2,344 cases reported in 2016 also represent the highest annual numbers reported since 2009 (2,364 cases).

The province of Ontario, the document said, accounted for the highest number (881) and proportion (37.6 per cent) of the new cases in 2016. Approximately 75,000 people currently live with HIV/AIDS across the country, according to the Canadian AIDS Society.

While prevention and education are important in reducing the number of people who contract HIV, Lacasse and others argued, neglecting programs dedicated to supporting those living with the virus is “dangerous.”

“That puts more people at risk of contracting HIV because people aren’t being supported as they should be living with HIV,” Lacasse said. “We have to have a holistic approach if we’re going to get to the numbers that we need to get by 2030, which is no more transmissions, … which I doubt we’re going to get to.”

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He added that the “ripple effect” of cancelled support programs for people living with HIV and shuttered organizations would be “tremendous” and would place additional burdens on the community groups that remain.

“If the volunteer sector is not at Bruce House anymore, or if they don’t have the services that they can implement anymore, where are those people going to go?” Lacasse said.

Government reviewing funding changes

A statement provided to Global News by the Public Health Agency of Canada pointed to the transition funding offered to organizations like Bruce House and the Canadian AIDS Society but did not provide further comment on the financial duress the groups say they’re facing now. The federal agency said community-based organizations are “essential to public health efforts to prevent HIV and hepatitis C” and called the federal government’s support for these groups’ projects “long-standing.”

“The Public Health Agency of Canada’s HIV community-based funding program has evolved in line with needs and priorities identified by scientific evidence and stakeholder input,” a spokesperson said in an email. “The Government of Canada is committed to supporting community-based organizations and to ensuring the greatest impact possible for federal investments.”

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The federal agency confirmed it’s conducting an “external review” of the funding system for HIV/AIDS and hepatitis C organizations, which it said is “common practice … following changes to a government program or activity.”

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Even if that review ultimately recommended that the government change or reverse course, Lacasse said the defunded organizations might not be able to keep their heads above water until the next funding cycle.

“We hope to … maybe scare the Liberals into understanding that maybe $6 million to re-fund these organizations is not that big of a deal and it’s not that much money,” Lacasse said. “We avoid, across Canada, 3,000 new cases of HIV per year … so the savings are substantial by keeping us funded.”

Groups searching for new financial support

In the meantime, the Canadian AIDS Society and Bruce House are scrambling to find other streams of funding. Lacasse said his organization’s survival depends on “some promised money from private funders” and he’ll know by mid-June whether the Canadian AIDS Society can keep the lights on or not.

Truglia said Bruce House’s volunteer program is staying afloat right now thanks to “a bit of a grant” from a private donor — but she said that donor has told the group it can’t bankroll the program over the long term. Despite ongoing support from the City of Ottawa and the Ontario government, Bruce House already had to terminate its Transition House program last summer because it couldn’t afford to keep it running.

Truglia said she, Lacasse and representatives from a few other local HIV/AIDS organizations met with Ottawa Centre MP Catherine McKenna in early February to discuss their predicament, after which the office promised to follow up with suggestions for other funding sources.

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But Truglia said the office hasn’t reached out since, even after she followed up. “It was a really good meeting in that you felt like you were heard but now I just feel discouraged,” she said Thursday.

Bruce House is set to celebrate its 30th anniversary this November, but Truglia said she’s “very concerned” about the organization’s future beyond that milestone. She said the organization definitely can’t move forward with its planned expansion of the “buddy program” that Hill said helped him avoid social isolation while he struggled with “major” depression and anxiety.

Hill said the 150 people who volunteer their time at Bruce House are “a huge part” of the organization and the group would “absolutely not” survive without them.

“They need money to keep these volunteers going,” Hill said. “The volunteers are a vital part, believe me.”

Lacasse said he worries about what would happen to the Ottawa community if it lost more valuable and experienced personnel like the Bruce House volunteers.

“That expertise that’s lost is going to be hard to get back,” he said. “It’s doable but it’s going to be hard.”

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By the numbers

Annual funding losses for HIV/AIDS organizations located in Ottawa (numbers provided by the Canadian AIDS Society):

  • Bruce House: $85,000
  • Canadian AIDS Society: $502,000
  • Canadian Centre for Gender & Sexual Diversity: $100,000
  • Interagency Coalition on AIDS and Development: $210,000
  • Pauktuutit Inuit Women’s Association: $378,000
  • CAHR: Amount unconfirmed but has reportedly lost “partial” funding

Annual funding losses for other HIV/AIDS organizations in Ontario:

  • Canadian Treatment Action Council (Toronto): $611,000
  • The AIDS Committee of York Region (Richmond Hill): $81,000
  • HIV/AIDS Regional Services (Kingston and the Islands): $255,000
  • Peterborough AIDS Resource Network (Peterborough): $85,000
  • HIV/AIDS Resources and Community Health (Guelph): $43,000
  • Positive Living Niagara (St. Catharines): $83,000

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