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Ann Kaciulis, passionate advocate for patients' rights and people with HIV/AIDS, dies of cancer at 59

Fierce and relentless critic of the BRHA, she led the fight for supporters of Dr. Alan Rich last year
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Ann Kaciulis, left, with her friend and fellow health care activist Pamela Groening, right, demonstrating their support for Dr. Alan Rich in his dispute with the BRHA last June 1 outside his office in the Professional Building on Selkirk Avenue.

Ann Kaciulis, 59, a tireless advocate for people with HIV/AIDS, and a fierce critic of the Burntwood Regional Health Authority (BRHA) on a number of fronts over the years, but most recently less than a year ago during the acrimonious events surrounding the departure of Dr. Alan Rich, the longest-serving physician in Thompson, died of cancer in palliative care at Health Sciences Centre in Winnipeg April 21 after being in a coma for several days. She had been admitted to hospital March 31.

Rich's career with the BRHA ended badly after a high profile dispute with by Dr. Hisham Tassi, an internist, and Dr. Hussam Azzam, vice-president of medical services.

Tassi and Azzam filed complaints against Rich in relation to his behavior and comments in earlier meetings with them, which they said had been inappropriate. The BRHA medical advisory committee considered the case last May 31 after earlier attempts at informal resolution failed. Rich had offered to apologize to Azzam but disagreed over what form the apology would take. Rich continues to practices medicine from his office in the Professional Building on Selkirk Avenue, where he has been a long-time tenant of J.B. Johnston Ventures Limited, Mayor Tim Johnston's family property holding company, and in Swan River, where he his semi-retired.

"When they attacked Dr. Rich, it became personal," said Kaciulis, who spearheaded a public protest aimed at the BRHA outside the Professional Building last June 1. "They need to let him retire on his own with his own dignity."

It was a classic example of the street level in-your-face politics Kaciulis practiced for so long with such passion, making her a thorn in the side of many in authority, to put it mildly, be they elected politicians or appointed bureaucrats. Yet if one measure of a life well lived is the outpouring of grief that marks a passing, then Ann Kaciulis' was a life well lived, as even some of those she butted heads with in life more than once were moved to comment on her death.

Kaciulis never made any secret of her frustration that the NDP provincial government didn't see things more her way when it came to the BRHA, yet Steve Ashton, Thompson NDP MLA and minister of infrastructure and transportation, commented on Facebook April 22: "So sad too hear. She always fought for fairness for people. We will miss her."

Kevin Carlson, of The Pas, assistant to former Manitoba Keewatinowi Okimakanak (MKO) grand Chief Sydney Garrioch, offered a prayer for Kaciulis' recovery Friday, while Percy Ballantyne, founder of the Cree Nation Lance Runners Society, also offered prayers.

"R.I.P. Ann, it is well deserved. Thank you for all that you gave us," Audrie Brooks, program co-ordinator of Marymound Receiving Home, a member of the Catholic Health Corporation of Manitoba, wrote on Facebook.

Among those closest to Kaciulis in sharing both her friendship and passion for patient advocacy health care issues were Pamela Groening, of Winnipeg, a non-practicing criminal and First Nations lawyer, and Karen Chevillard, also of Winnipeg.

Wrote Groening on Facebook: "It's we who are left behind that are spinning, wondering how we can even live without this woman in our lives. She was the center of everything, of her family, her friendships, causes, what happens when our wonderful leader is gone? She has been my dearest friend and soul mate for 14 years ... I love her family like my own We all have to learn to live without her powerful spirit around us, guiding us...hopefully she'll give me a nudge now and then when I screw up and tell me to shape up!"

Her husband Al, brother John, daughter Audrey, and three grandchildren Dwight, Jaycee and Denzel survive Kaciulis.

As part of a cost-saving initiative announced earlier this month in the provincial budget, the BRHA and Flin Flon-based NOR-MAN Regional Health Authority (NRHA) will merge later this year into what will be known as the Northern Health Region. It will cover about 61 per cent of Manitoba's land mass and serve about 73,000 people, providing health care of to 46 communities in Northern Manitoba with the exception of Churchill, which is having its RHA merged with Winnipeg.

The Regional Health Authorities model was created in Manitoba in 1997 under Progressive Conservative premier Gary Filmon. Amendments to reduce the number of regional health authorities to five from 11were introduced in the legislature April 20 by Health Minister Theresa Oswald.

Among the legislative changes proposed, Oswald said, is the implementation of tighter controls on executive compensation in RHAs, hospitals and other health corporations; requiring chief executive officers' expenses for RHAs, hospitals and personal-care homes to be posted online for public review; and placing restrictions on the rehiring of former senior executives in RHAs, hospitals and other health corporations.

Kaciulis spent most of her life in Northern Manitoba, spending her childhood in Cross Lake on the Pimicikamak Cree Nation, and later Wabowden, and near The Pas on the Opaskwayak Cree Nation, where she remained a status First Nation band member.

She became an outspoken advocate on HIV/AIDS issues, especially its impact on the aboriginal community, often not talked about much publicly, after it deeply impacted her immediate family. A brother died of AIDS in 1992, and at the funeral another brother, Darryl, said he was HIV positive also. In 2000, her daughter, Audrey, her only child, tested positive for HIV, and her son-in-law died of AIDS in November 2007. "It was really hard trying to explain what is HIV and AIDS to elders," said Kaciulis, who speaks Cree fluently. "They had a lot of questions," she told the Thomson Citizen in an August 2007 interview. She said it was a challenge to find the right terminology without being disrespectful, since she had to talk about safe sex and condoms.

She worked on a Bachelor of Social Work (BSW) undergraduate degree through the University of Manitoba, and along with Groening in May 2006 started Camp Hope Inc., a camp near Liz Lake for children who had multiple family members with AIDS, as well as a mandate to provide advocacy and services to people affected by or infected with, HIV. Because advocacy was such a critical aspect of the work, Camp Hope could not be registered as a charity for tax purposes and funding remained problematic.

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