By Angela Hill

Without treatment people still dying of HIV

Nov 18, 2011 | 5:41 AM

With novel medication and treatment, the new refrain of health care professionals is that HIV is not a death sentence anymore.

Or at least it shouldn’t be.

“A lot of people feel that it’s a death sentence, unfortunately, which is part of one of the messages we want to get out, which is that there’s effective treatment. In 2011 there is no reason why someone who is HIV positive should die,” said Dr. Stuart Skinner, a clinical director of the province’s leadership team on HIV.

In Saskatchewan, however, HIV is having a greater toll then it should. According to statistics provided to AIDS Saskatoon there were 22 AIDS-related deaths in that city alone between January and the end of August 2011.

One of those deaths was a woman named Lynn — her last name has been withheld at the request of her family — who was diagnosed with HIV at 46 years old.

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“This is my sister. It wasn’t supposed to happen to us … I was just so lost for words. I just hugged her,” Bev said, from the sofa in her home in Prince Albert, a few months later.

Lynn spent her life battling with addictions, after suffering abuse and seeing their mom commit suicide at a young age, Bev said. She said Lynn’s addictions meant difficulties with the health system.
People with addictions know, in their head and in their heart, the harm they are causing themselves and others, “but their bodies won’t co-operate,” Bev said.

Lynn had hearing loss after years of abuse. Over time her hearing aids went missing and at some point, she lost her glasses too.

“One thing that kind of really broke me … she said, ‘I guess they don’t think they need to spend much more money on me, seeing I’m just going to die anyway,’” Bev said.

“That statement really has haunted me because it spoke volumes on her treatment.”
Eventually Lynn was so sick that her son had her committed to care, stopping her from leaving unless it was with Bev. At that point, Lynn said she wanted to turn it around, Bev said.

It’s never too late to start treatment for HIV, but too many people are waiting until they have multiple major infections to get care, said Dr. Kurt Williams, an infection disease specialist in Saskatoon. They develop multiple infections because of late testing and they are often sick with secondary illnesses, he said.

“Early treatment is the new mantra,” he said.

Lynn’s decision was too late. A couple of days later, just before Bev could go into Saskatoon again, she received a phone call from the doctors. Lynn had gotten worse, she was on a ventilator and her organs were failing.

On that day the staff was kind, gentle and understanding — they let the family have some time with Lynn before going in and taking off all the tubes and machines, Bev said.

“I just wanted to hold her. So I was on one side … my nephew was on the other side, holding her, crying. All I could hear was the echo of him crying and telling his mom to ‘wake up now.’ My nephew is 22, but he sounded like a five year old with all of his promises to take care of her,” she said.
Bev said she remembers hearing her sister gasp for breath.

“I said, ‘I’m going to take care of your children, I’m going to take care of your grandchildren.’ I said … I want you to go and know it’s not your fault … I just love you so much.’ And with that she took one breath … and she was gone.”

To prevent AIDS-related deaths, the message needs to get to people about medication, treatment and services.

“In this sort of system we’re fighting upstream with people who feel no different than they ever felt. (But) they are sick, and prevention and early treatment is the way to go to preserve life,” Williams said.
He has files for HIV patients that are on their third volume at his medical office, something he said was unheard of years ago.

People also need help in dealing with and getting treatment for their addictions, says many health officials.

Nicole knows this. She watched her husband die of the disease she knows will eventually kill her.
“It is scary to see that, because I seen my death. That’s what scares me the most.”

Nicole had a job as a rock truck driver at a mine — one night, the people she was partying with began using injection drugs. She said she used them with others on that night. Within two years she was working to get clean, but watching her husband get worse and worse.

His organs started shutting down, his body was sensitive, he couldn’t lift himself up, she said.
“I didn’t think he was going that fast.”

He died in March 2010 and during the past year and a bit, Nicole said she knows five people know who have died of AIDS-related illnesses.

“When I went and seen them in the hospital, I’m looking at myself, you know, I’m looking at my death in the face and it really hurts, because I know how I am going to die.”

However, with education and regular medical appointments, Nicole is doing well. She talks about her experience to help others learn and raise awareness of HIV in the community, although she doesn’t use her last name to prevent her children from suffering from her choices.

She and others are part of the new wave of people with HIV speaking out about their experiences and hoping their message will convince others to stop using and start getting the help they need.

See related: The face of HIV of Saskatchewan

ahill@panow.com

This story is the ninth in a series about the face of HIV in Saskatchewan. Research for this project was made possible by a journalism grant from the Canadian Institutes of Health Research.