As a woman with HIV, Valerie Nicholson says she fears for others suffering with the affliction who do not have the supports she was once lucky to have.
Nicholson, who lives in British Columbia, used to be a member of the Positive Women’s Network — one of the only HIV/AIDS community organizations solely dedicated to the delivery of support services for women in Canada.
In 2017, the organization closed its doors after the federal government made a change in its funding model — a change that impacted 40 total organizationsacross the country.
Nicholson said she believes she would be dead if she did not have the Positive Women’s Network, which helped her battle her drug addiction and learn how to live with her condition.
Through her advocacy work for other women, Nicholson has seen how federal funding cuts have resulted in less flexibility for organizations to offer specific supports for HIV-positive women.
“Women need a space where they feel welcome and where they know they won’t be judged or bullied,” she said. “For many who don’t have access to these safe spaces, it’s easier for them to give up and a lot of women just do that.”
A study conducted by found an alarmingly high mortality rate among women living with HIV — a rate significantly higher than male patients. The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study analyzed 1,422 women across Canada living with HIV between 2013 and 2018 and determined 61 of the total participants had died.
Researchers have also confirmed that an additional nine women in the study have died in the last seven months. The study’s data is available online, but most recent statistics are not yet publicly available.
Angela Kaida, a principal investigator of the study, said the mortality rate women in the study was five times higher than the national average. She added that this has less to do with traditional medical factors than one might think.
“We found that the greatest risks to women’s survival were mental health challenges, substance use, poverty, and experiences of violence,” she said.
“Even though we know how important the social determinants of health are for women’s survival and well-being, there have been extensive and severe cuts to community programming necessary to support women living with HIV and address these very challenges.”
Kaida said the fact that the life expectancy for women with HIV is 6.8 years shorter than men living with HIV is enough evidence that women are not getting access to the services they need.
“Large gender and other social inequities persist with respect to who has access to treatment and who survives,” she said. “Cutting community-based supports for women living with HIV, removing their few stigma- and discrimination-free spaces to meet, learn, and support one another will lead to more isolation, more suffering, and more deaths.”
Gary Lacasse, the executive director of the Canadian AIDS Society, said there are few spaces for women across Canada.
“I have been getting calls for the last three, four years from women not finding support in their communities who can’t get the support services they need,” he said “That is really troublesome in my view.”
Lacasse added that at least 90 per cent of the programs that received funding under the federal government’s new model provided prevention services rather than support services.
“How can we thrive when the governments that are in power have us in a complete survival mode day in and day out?” he said.
Richard Elliott, executive director at Canadian HIV/AIDS Legal Network, said that while he has been aware of federal funding that has been eroding since 2005, he is critical of the recent Community Action Fundthe federal government follows to provide funding to organizations.
“A feature of the Community Action Fund is that it has merged what was previously an HIV pot of funding with a Hepatitis C pot of funding,” he said.
Elliott said in theory, combining the two seems like a good idea to have a more integrated response to address HIV and other sexually transmitted diseases, but what he does not agree with is the unattainable expectations outlined for HIV/AIDS service organizations.
“This is just an excuse for cost cutting and shaving budgets and underinvesting the public good, “ he said. “Now these organizations are expected to respond to HIV and Hep C and other STI’s with the same pot of money that was expected to deal with HIV.”
The fund, administered under the Public Health Agency of Canada allocates $26.4 million each year for five years to community organizations across the country. On the federal government’s website it states the level of funding has not changed from funding support provided in previous years.
Of those that received funding, there were four women-centred organizations, but only one program was HIV specific.
Elliott added that a general lack of funds could definitely contribute to service organizations being unable to respond to specific and more vulnerable groups, like women.
Nicholson said that as long as things stay as they are, HIV-positive women across the country will continue to be deprived of the specific services they need.
“A lot of people don’t understand the daily struggles you have… just to have the opportunity to build up ourselves, empower ourselves, get some self-worth can do so much,” she explained.
Nicholson added that spaces for positive women would create greater change by allowing women to talk about common issues and address them together.
“There is a lot of work to be done for women that are missing who do not access community services,” she said. “There is no space for these women to go and right now my heart breaks for them.”
Correction: April 24, 2019
An earlier version of this article incorrectly stated that 61 per cent of women who were analyzed as part of the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study died between 2013 and 2018. There were in fact 61 individuals who participated in the study and died during that time.