CBC Interview, December 1, 2016, Living with HIV for 30 years and wrestling with survivor's guilt

A Nova Scotia man who's had HIV since the late 1980s says he feels fortunate to have lived long enough to see his children grow up — but still feels guilt when he thinks about the many who have died.

Al McNutt? runs the Northern Healthy Connections Society in Truro, N.S., which provides education on HIV and AIDS, as well as other sexually transmitted infections.

McNutt? told CBC's Information Morning that when he was first diagnosed, he expected to be dead within a couple years. On World AIDS Day — Dec. 1 — he reflected on what it means to have survived.

This interview has been edited and condensed.

CBC: How do you feel about surviving when so many with HIV have died?

McNutt?: It gets pretty lonely still being alive, because there's a lot of — what we call it in the HIV world is multiple grief and loss … because there's so many people we've worked with or I've worked with … and shared lots of stories with, you know, they're no longer here. So you end up wondering at times, "Why me, and why am I still here."

I mean, I'm very happy that I am, but when I look around my office here and see so many pictures of individuals that I've worked with or colleagues of mine that I knew very well within the HIV movement who are no longer here, it gets a little alarming at times and it really gets lonely.

CBC: How has treatment changed since you were first diagnosed?

McNutt?: The first drug I was on was AZT and you had to set your beeper in the middle of the night to take the pills then, because you had to take them every four hours, and it was a very toxic medication, it caused a lot of anemia.

So we've come a long way as far as the pharmaceutical industry. And we've come so far now they're calling HIV a chronic manageable illness, even though there are still people dying as a result of HIV complications … [but] I don't really have any major complications with HIV.

CBC: How do people view HIV now?

McNutt?: Ever since we started the North End Healthy Connections Society … we've always looked at HIV as being nothing more than a sexually transmitted infection and a blood-borne infection. We've never really put it in a category of its own, and so whenever we went into schools to talk about sexual health and sexually transmitted infections, we included HIV.

And those people that we talk to today, especially the younger people, even though we feel and we hope that they're more educated — with people living longer [with HIV] and the medication that's available — [young people] are becoming a little complacent, and they basically still feel that "it's not going to happen to me." It's quite amazing when we do surveys here, how many young people still are not using protection and not taking care of themselves.