The Positive Side

Spring/Summer 2009 

From the Front Lines: Back by Popular Demand

For well over a decade, Managing your health has been a faithful friend to positive people from coast to coast. Now CATIE is launching a new edition of its must-read guide to living with HIV. Alex McClelland takes you on a tour of the newly renovated CATIE classic.

 

Cover of Managing your healthTRUE TO ITS ORIGINAL MANTRA — that information is the path to self-empowerment — the new-and-improved Managing your health (MYH) covers a wide spectrum of issues that we people lving with HIV in Canada deal with on a day-to-day basis.

Like many other positive Canadians, this was the first resource handed to me when I tested positive back in 1998 at age 19. The red and black tome at first seemed overwhelming, but without it I would have been one lost HIV newbie. It helped me navigate the wide and complex world of life with HIV. MYH is the ultimate encyclopedia for living well with HIV — packed with information on coping with your diagnosis, choosing the right meds and managing side effects, eating healthy, starting a family and more. It also includes practical stuff, like legal, money and housing issues, as well as fun stuff, like tips on making sex hot and safe.

To draft the new 340-page guide, CATIE called in the big guns — more than 20 experts, many of them living with HIV, from all over the country. After all, it takes a village to get through all the complexities that we face as people living with HIV. I chatted up a few of these experts to find out more about what to expect from the new MYH.

The doctors are in

“HIV therapy is in constant evolution and there is a need for new and updated information,” says internationally recognized Montreal-based HIV scientist Mark Wainberg, who wrote a spirited foreword to the new guide, which he calls a key resource for people with HIV. “MYH provides an important service in education and awareness in regard to HIV and AIDS. It provides patients with a sense of security and knowledge about HIV and the drugs used to combat it.”

While the new MYH still provides a comprehensive backgrounder to HIV treatment and side effects, it also takes into consideration that looking after your health means a lot more than popping your anti-HIV pills.

Check out the chapter “Your healthcare team” by Evan Collins. As a doctor living with HIV, Collins has the inside scoop on how to build a healthy relationship with your physician and other healthcare providers.

DID YOU KNOW? Though many of us hoped that research would show that “drug holidays” — structured treatment interruptions — would enable us to take an occasional break from HIV treatment and its side effects, clinical trials have shown that treatment interruptions actually increase the risk of serious health problems.

Not just for newbies

Now that we’re living longer, the need for MYH is greater than ever — whether you’re an HIV newbie or veteran. The new MYH includes the chapter “HIV and aging” by Kath Webster of the Positive Living Society of British Columbia  (Positive Living BC) and Positive Women’s Network. CATIE staffer Darien Taylor, one of the MYH editors and a woman who’s been living with HIV for more than 20 years, says, “While reviewing the chapter on aging, I decided to take its advice and get a bone scan to check for early-stage bone loss, which this chapter points out is common in both men and women with HIV as we age. Now I’m supplementing regularly with calcium to protect against further bone loss.” As we all get older (and greyer!), MYH will be there to guide us through the ins and outs of living long and well.

DID YOU KNOW? It is estimated that up to 12 percent of HIV-positive people in Canada are older than 50, and this number is expected to increase by as much as 20 percent over the next decade.

Ladies first

“As a person living with HIV, I used MYH as a daily resource when I was diagnosed 15 years ago,” says Shari Margolese, of the Blueprint for Action on Women and HIV/AIDS and Voices of Positive Women. “MYH has allowed people living with HIV, particularly those newly diagnosed, to educate themselves about the virus in a confidential manner and at their own speed.” Margolese, an HIV-positive mom, wrote the chapter “Women and HIV.” It covers issues like the interaction between birth control and anti-HIV drugs and provides information on how HIV and its treatment affect women and men differently. “The new edition is very inclusive of the different populations now affected by HIV,” Margolese says, “and it addresses many new and timely issues.”

MYH now includes sections focused on specific populations, including the chapters “Children and HIV,” also by Margolese, and “Immigrants, refugees and non-status people with HIV” by Dr. Alan Li of the Committee for Accessible AIDS Treatment.

DID YOU KNOW? Since January 2002, HIV testing has been a mandatory part of the immigration examination for everyone over the age of 15. However, having HIV does not, in itself, make you inadmissible to Canada.

Sex it up

Feeling sexy ain’t always easy when you’re on the poz side, but AIDS Committee of Toronto staffer John Maxwell encourages us to get it on — HIV and all! (And to put a condom on while we’re at it.) The chapter on sexual health seeks to support us positive peeps in having a fulfilled sex life while staying healthy and protecting our partners. Maxwell shares info on relationships, sex toys, sexually transmitted infections and much more. He even tackles the confusion around the link between viral load and infectivity, reminding us that even with an undetectable viral load it is still possible to transmit HIV.

When asked about the grass-roots nature of MYH, Maxwell says, “The community-based philosophy of MYH — one that is rooted in advocacy, self-determination and empowerment — contributes to the greater and more meaningful involvement of all PHAs within the HIV/AIDS movement. We’re not mere passive recipients of services but are actively involved in decision-making with respect to all aspects of our health.” Power to the people!

DID YOU KNOW? There’s a growing movement to include people living with HIV in the effort to stop the spread of the virus. Find out more in the new chapter “Positive prevention,” written by David Hoe, a longtime community activist in Ottawa.

CATIE has added some exciting new features to the guide. Following focus-group recommendations, MYH will be spiral-bound in a workbook format. It will include a personal health record so you can track your own health information, write notes and make the book your own. The online version of MYH will contain interactive links and more.

Order your free copy today through the CATIE Ordering Centre, or by phone at 1.800.263.1638. CATIE Ordering Centre catalogue number ATI-40215. (The French edition, Vous et votre santé, is catalogue number ATI-40216.)

Alex McClelland has been involved in many Canadian and international civil society organizations and NGOs working toward and advocating for the support, care and rights of people living with HIV. He spends his time between Montreal and Toronto and is a student at York University.

The new edition of MYH is dedicated to Nitto Marquez, a longtime employee at Toronto People with AIDS Foundation who passed away last year. Just months before he died, Nitto authored the very practical chapter “Money matters.”