I was at the most recent Antiretroviral Update offered by the BC Centre for Excellence in HIV/AIDS, where treatment research, case studies and good humour abound. It was an interesting day full of information, but I have to say that one presentation has continued to echo in my head beyond the others.

It starts with STOP, (Seek and Treat for Optimal Prevention of HIV/AIDS) the ongoing pilot program in the Lower Mainland and Prince George. It ends in many African countries- a long road, I know.

One of the goals of STOP is to increase the number of people being tested for HIV, as Health Canada predicts that up to 26% of Canadians with HIV don’t know they have the virus. Increasing testing across all populations, not just those “risk groups” that have been targeted in the past is one way to locate new positives. Once they’re identified, they can get on treatment if needed. Once they’re on treatment, they are less likely to pass on the virus.

Normalizing HIV Testing

Dr Reka Gustafson spoke about “Normalizing HIV testing.” She suggests that doctors can actually be the barriers to people being tested. Doctors don’t think to or don’t want to suggest testing to patients, lest it be interpreted as a judgment on behaviour. Gustafson said that not testing people results in late access to treatment. Sixty-five percent of people who test positive for HIV have disease progression that is already past the recommended starting point. In other words, their health is already compromised beyond where it needs to be.

Another one of her points is that with timely diagnosis and access to treatment, people diagnosed with HIV these days can live close or equal to a normal lifespan. That is amazing. But where can that happen? Here.

“Here” is a small place when it comes to treatment access.

It’s a dream for many people with HIV to imagine a “normal” lifespan. In countries already decimated by diseases other than HIV, but similarly deadly, “normal” is very different from here in North America.

Treatment Access

Treatment access is a complicated issue full of poverty and politics. Living well with HIV disease or living at all can depend so much on geography. Too many countries have thin resources when it comes to providing HIV treatment. Recent changes to the Global Fund will have serious impact on countries already pressed to provide treatment and care to massive numbers of citizens with HIV. Canada’s HIV/AIDS Legal Network notes that while Canada has committed to pay its portion to the Global fund, many others countries haven’t, compromising programs that need it most. In addition, this community care worker writes that women will be expected to bear the increasing burden of care. 

Normalizing testing for HIV, which can lead to treatment, which can save lives of many, is a great pathway indeed- one it would be great to travel on. But to do so, we have to continue to combat stigma of the disease, support treatment access for all, push for funding for comprehensive care. That way, more people might experience the impact of STOP.

- Janet

It’s not surprising working in this community that people will die. Those who’ve passed on are too many, and most of them wouldn’t want their names associated with HIV even in death- disclosure is too much for unknowing family and friends left behind. But acknowledging the means of death is important because it goes beyond HIV.

Health

Advanced HIV disease, as it’s often called now, used to mean AIDS. And AIDS was a miserable ending. Some women lost their minds to dementia. Others got infections they couldn’t rid themselves of, no matter what. Most women figured they would die within a couple of years, and too many were right. An AIDS diagnosis was a progressive step closer to the end.

Then came 1996, and advances in HIV therapy. A combination of treatments could hold HIV at bay, and give the immune system a fighting chance. Researchers and doctors worked on fine tuning the treatments, developing new ones and learning about how to minimize the side effects of the drugs. The progress has been amazing- someone diagnosed with HIV in 2011 could live almost a normal life span. Triumph over HIV is possible to a great extent.

Yet for lots of women, it’s not just a triumph over HIV that’s needed to save lives.  

Home

Numerous PWN members experience violence in their relationships. Sometimes violence has led to their getting HIV, because the women didn’t feel safe enough to “demand” condom use. And sometimes it’s the other way, with HIV leading to the violence. A man controls and physically dominates his partner, saying that “her” HIV is the reason, and she better stick with him. “Who else would have you?” he asks. 

One member used to be thrown down the stairs on a regular basis by her partner. When our office was in another building with multiple HIV support organizations, we used to have to sneak her out the back when he was after her. She and others like her formed part of our decision to move to a more anonymous space where we could control safety more easily. Women are beaten and killed by their partners every day. We do our best to help women cope and leave should they feel able.

Community

Women are also at risk when they’re at their most vulnerable- on the street, doing survival sex work. Alienated, abused, often drug addicted or well on the way, girls and women end up on the street and support themselves through sex work. The attitude that no one seems to care about them, and if a few are beaten up or killed, it won’t be noticed is distressingly played out all the time. Sadly, the Missing Women Enquiry. supports this. 

PWN members are diverse in health, ethnicity, wealth, status. But all are women who live in cultural and societal circles that can devalue women- circles that can undermine their worth and survival.  At PWN we work with women who have HIV as a common ground, but so often there are other commonalities too- violence, discrimination, sexism. And so our community also unites over death. Our memorial corner has a memory book and a candle. People can sign it or read it as they wish.

Or leave it alone, just knowing that someone important will be missed. No woman goes unnoticed. 

- Janet 

Photo: Simon Howden/ FreeDigitalPhotos.net 

I’ll warn you now; this isn’t a topic that many people want to embrace: end of life planning. I was made well aware of that recently in a meeting when folks admitted their own discomfort with it, but jumped into discussion all the same. One of the folks involved shared a blog from Seattle Mama Doc, who dreads leaving her children when she dies, and knows the best thing is to “plan” her death. But even the good doctor hasn’t done it. 

Whatever health is at the moment- HIV or otherwise- we’re all going to reach the end of our lives at some point. None of us knows exactly when that transition will arrive, but when it does, don’t you want it to happen under your own terms?

I’m not talking assisted suicide- that’s a whole topic in itself. I’m thinking more generally about end of life planning. Do your friends and family know what you want? Do they know what kind of medical care you want to receive? Or what your health care team should do if you can’t communicate? Would you like to be on life support? Would you like to be resuscitated?

Unfortunately, life circumstances can override plans- a violent death, an accident. Too many women, particularly the marginalized, meet end of life this way. I know it’s a possibility, but still feel that thinking about end of life decisions can actually be empowering. So we consider our lives with dignity and grace. We all deserve it.

End of life planning can provide this information to your friends, family and health care professionals so they may care for you as you would like. So you have options even when you can’t speak for yourself. Senator Sharon Carstairs has been quoted as saying Canada is a “death denying society.”

It used to be with HIV, people felt pressured to think about the end immediately. Thank goodness that’s changed for many, but it doesn’t remove the fact that it’s still important to think about what will happen to your belongings, to your children if you’re a parent, to your healthcare if you’re dealing with decisions to be made.

No matter what your health is, it’s something we all should think about. Here are five questions to think about from the Engage with Grace Project. It was inspired by a 32 year old mom who had no idea she would die so young. 

Here in British Columbia, Representation Agreements* can cover a variety of issues you might need support with if your health is in question and you can’t speak for yourself.

- Janet

*Please note that if you had a Representation Agreement in place before September 1, 2011 when legislation changed, you may need to make some changes to it.) 

photo: Morguefile

(In this, our twentieth year, we’re featuring a monthly blog series, PWN at 20 that looks at PWN’s unique place in Canada. Last month we invited folks to Help Us Celebrate Resilience, our twentieth anniversary fundraiser coming up on October 16)

Challenging HIV.  Changing Women’s Lives.

These words guide us in our work. Since January we’ve been looking back at that work over the past twenty years. It’s been an amazing journey that we’ll celebrate together on October 16 at Resilience.

Pessimists might ask “What’s to celebrate about HIV?”

Well, the amazing community that has grown, for one. Evelyn, one of the founding members, said something one day many years ago that has always stuck with me:

“I don’t have acquaintances, I only have friends,” she said in her quiet voice.

She knew that some relationships would be more intimate than others, but she felt holding people at arm’s length did her no good. This was especially true as she faced the unknown of how HIV would unfold in her life. To her, everyone she met had a gift to share. In that way, everyone was a friend.

Most of the women who come to Positive Women’s Network don’t remember Evelyn, who died before the treatment changes of 1996. But it’s almost as if her words became part of the spirit of PWN, because friendships bloom all the time:

“Women at PWN have different experiences from mine, but we are all alike in so many ways— it’s always that one place we connect,” said one member.

Sangam, one of the Support workers, says “Watching a woman come to a retreat for the first time- often there’s a lot of fear. But women get to be with other positive women and so many of the myths that they’ve been living with themselves get dissipated in that weekend.”

Reflecting on what retreats offer, one woman said, “We can enjoy life instead of looking at HIV like a death sentence.

And there’s the resilience part. Women face incredible adversity, and not only the challenges of HIV. Many women are also up against violence, poverty, abuse, mental health and addictions. But women survive. They meet at PWN, give each other support and their perspectives change:

Summing up her experiences here, another woman said “I have hope for my life – I had no hope for my life before.”

So yes, community is something to celebrate. Resilience. Friends gather- here.

- Janet

I read a beautiful piece earlier this week from a doctor who cared for a 90 year old gay man in a nursing home. He wrote about the isolation that elderly lesbian gay, bisexual, trans and queer (LGBTQ) people can face. Treating this gentleman who ultimately died alone caused the doctor to reflect on his own gay privilege. 

Coming of age in a time where gay visibility was more accepted, the doctor not only found a partner, he could be out about it, and expand his family to include children. Privilege indeed. And love. And community. Not something that all LGBTQ people have had, or can have.

The waves of homophobia that cause many people to hide or deny who they are haven’t receded completely. People in small towns and large cities still utter homophobic  threats. People still get beaten up or killed for their sexuality.

Things have gotten better in some parts of the world. In a few places, same sex marriage is a legal option. I’m happy to say that here in Canada, that’s the case, even though we’ve had our ups and downs about it. Not everyone was on the same page about it, shall we say. For those who want to have children, things have also improved both socially and clinically. For incidences of hate crimes, well… that’s still a problem the world over.

Those of us working in HIV prevention and support see the effects of homophobia all the time. The idea that gay men= AIDS is still out there. Oh we know that far more people than gay men are infected, and being queer doesn’t equal HIV infection. But many in the general public still see HIV/AIDS as just affecting gay men. It couldn’t affect a “nice” family.  But it can affect anyone. 

One of the gifts of my work at Positive Women’s Network is the community. We create a safe place here for our members, and we are part of a community that is constantly working to confront homophobia, AIDS phobia. I hope it contributes to less isolation and more connection. For everyone. 

- Janet 

Twenty years. Thousands of stories. Hundreds of laughs and certainly some tears. Bold voices. Caring support. Lifelong connections. Fantastic community.  This is what we’re going to celebrate on October 16.   

Resilience is a party, a fundraiser, and 360 degree look at Positive Women’s Network. At twenty we take the cake as the oldest HIV support organization for women in Canada and our work is constantly developing.  We started out as a handful of women (with HIV and concerned about it) who knew HIV would serve up some difference between men and women. They knew women would need their own place. Our first members were a few Vancouver women. Now we’ve grown into an organization that provides support to women across BC and health promotion resources to service providers nationally. Who knew we’d still be at it twenty years later?

Join us October 16 as we celebrate the road behind us and the paths to unfold. We’ll have live music, hors d’oeuvres, and a silent auction with tantalizing possibilities. Catch up with friends and allies in the community. Meet new people who are passionate about challenging HIV and changing women’s lives. If you can’t attend yourself, consider donating a ticket- alone or with a couple of friends.

All proceeds go to programs that provide support to women living with HIV. Medically, socially HIV remains a challenge. Our work isn’t done. Help us make it count.

I look forward to seeing you!

- Janet

  BUY TICKETS NOW

The room was packed and the energy positive at the latest HIV Antiretroviral Update put on by the BC Center for Excellence in HIV/AIDS. The “big picture” of international and national issues was discussed, but so was the importance of the one to one relationship between patient and doctor. As it often is, the day was intense but full of interesting information to think over and share.

Women’s Risk factors for HIV

Dr. Neora Pick (new Medical Director of the Oak Tree Clinic) presented an update on HIV Infection in Women, starting with a global picture. Worldwide, women account for 50% of HIV infections. Here in Canada, women represent 22% (just over 1/5) of all HIV infections, but are 26% (a 1/4) of new infections. The highest risk category for women in Canada is heterosexual sex (71%) followed by injection drug use (29%).

Pick emphasized women’s biological risks for HIV (extended exposure to HIV-infected fluids and vulnerability of vaginal tissues). She also talked about the cultural factors that increase women’s risk. Expectations of how women “should” be sexually and limited control over condom use and other harm reduction options make preventing HIV difficult. Women also have to face economic inequality, violence, and forced sex. Young women in their first sexual relationships, often with older men, may not have the power or knowledge to insist on safer sex.

Women Stop Treatment More Often…

When it comes to treatment, there are differences in men and women. Women discontinue drug therapy more often than men due to side effects (“adverse events” in the medication handout lingo). Although doctors don’t have all the answers as to why women experience side effects differently than men, there are some ideas.

Women’s and men’s bodies are different and this could affect how medications work. Women generally weigh less than men and have more fat per pound of body weight than men do (a natural difference). Women have different hormone cycles (ups and downs) and women absorb (metabolize) medications differently than men.

Women on treatment are more likely than men to see changes in body shape, an issue that Pick pointed out is essential for doctors to consider. Some medications can have the side effect of gaining weight in the middle of the body and losing weight in the face, arms and legs. We live in a society where body image is emphasized, especially for women. Doing the best to make sure treatment is chosen to minimize the possibility of body changes is very important. Depression is also an issue for positive women. Pick cited a U.S. study showed that women with depression were less likely to take their HIV medications on the schedule their doctor advised (being adherent). This led to worse health outcomes.

… Yet Do Better Once They Find a Good Combo

Establishing a good treatment combination for women leads to better health. At the beginning of the AIDS epidemic, women did worse than men. But in the last two years, death rates are lower in women than in men. Although women discontinue drug therapy more often due to side effects, once a tolerable regime is established, women do better. Doctors don’t yet know why. Dr. Pick suggested that it could be that with aging overall, women tend to have better health (particularly cardiovascular health) than men.

Overall, the energy at the ARV Update was optimistic. There was recognition that there’s more research that needs to be done (as always) but the options out there are better than we’ve ever seen. Luckily, more than one of the doctors advocated that the medical treatment of HIV isn’t all that needs to be addressed. Stigma, treatment access, harm reduction, social and peer support all need to be in place as well. And that’s what everyone is working on.

- Janet

A more extensive version of this blog is in our July-September newsletter

I’m holding my breath, anxiously awaiting the imminent publication of the new edition of our Pocket Guide for Women Living with HIV. Okay, well, no, not really anxiously awaiting so much as anxiously finishing up the final preparations before it goes to print. That’s right, it’s me holding it up, but seriously, it’s coming very very soon! It started as a simple re-design, since we’ve actually run out of copies (25,000 copies of the Pocket Guide have been distributed nationally over the past five years, thanks to CATIE’s invaluable Ordering Centre). We realized pretty quickly that there were places we could update the content as well, to reflect new research, knowledge and trends.

Some of the changes to the new edition are pretty concrete – new knowledge about how HIV meds and street drugs interact, changing legal responsibilities around disclosure – but others are a bit more subtle. One of the more subtle changes we’ve made reflects ongoing improvements to antiretroviral meds and antiretroviral therapy (ART). We’re talking more about complementary therapies and less about alternative therapies, even though we’re actually talking about the same things – yoga, bodywork, traditional Aboriginal medicine, journalling, etc …

Concerns with talking about alternative therapies

When our peers at CATIE first reviewed our content for the new edition, they were all over the section about complementary therapies, which suggested that one option for using complementary therapies was to use them instead of ART. The question was basically this (not that this is how they put it, but this is what it’s become in my mind): When we now know how effective antiretroviral therapy is, and we know it saves and prolongs lives, how can we possibly propose that there are any alternatives? For doctors, it would be an ethical matter – if you know an available treatment can significantly improve somebody’s life, there is an ethical responsibility not to recommend something else instead. At first, I was a bit defensive. I’m sure that back in the day when Janet created the copy for the original pocket guide, she was not oblivious to ethical considerations! As is so often the case, it’s a simple matter of the times a-changing.

Why we originally talked about alternatives

First, it’s important to acknowledge our commitment to women’s choice. Choice is about so much more than just reproductive choice. It’s about women really truly taking charge of their health and wellbeing. It says right in our Values Statement that we “advocate and support women to be active participants in their health care decisions”. So, in the early days of HIV meds, this meant that some women chose, pretty legitimately, not to use them. There were huge concerns about the toxicity of antiretrovirals and early regimens could be incredibly complicated, challenging to take, and often led to side effects that many women frankly found unmanageable. So, in those days, we encouraged women to be informed, to weigh all the pros and cons, to discuss and be open with their doctors, but ultimately, to take responsibility for their own health.

What’s changed?

A lot has changed in the 15 years since highly active antiretroviral therapy (HAART) first burst onto our scene. There are now (at least where we live) many different options for treatment, that can be catered to individual women’s needs. We also know more about the toxicity of antiretrovirals and formulas and doses are now being developed to maximize effectiveness and minimize side effects. We still have much to learn, and new drugs and therapies are constantly in development. We also acknowledge that some women still experience side effects and find treatment unmanageable. That being said, significant changes have taken place and we have seen women live and thrive into their later years.  These women are now worrying about issues related to aging that have nothing to do with HIV, and that is without any doubt whatsoever, because of ART.

Nowadays, as will be reflected in this new edition of the Pocket Guide, we recommend exploring complementary therapies because they can help to improve overall health, may strengthen the immune system, and can definitely contribute to an overall feeling of empowerment. There is so much about HIV and HIV treatment that women feel they cannot control. Getting a massage, taking vitamins, meditating, connecting with your Aboriginal roots – these are things that you can control! Go for it!

- Miriam

As the editor (me) and designer (Miriam) of the various publications Positive Women’s Network produces, Miriam and I read a lot of stuff. A lot. We follow blogs, subscribe to feeds, and share resources on Facebook and Twitter (for PWN and You Should Know, our project aimed at STI health and prevention). We’ve noticed lately that there’s been a real emphasis on treatment research circulating, and a marked lack of psychosocial research- the emotional and relationship effects of living with HIV. I see so much  treatment info speaking of HIV as a “chronic manageable” condition, that I can’t help but wonder if perceptions are changing to emphasize treatment at the cost of hearing individuals’ experiences of living with HIV.

What is Successful Treatment? 

It was great to see a recent piece on women’s experiences with lipodsytrophy*. Nurse advocates Marilou Gagnon and Dave Holmes report, “[Lipodystrophy] is not a simple reconfiguration of fat tissue but rather a complete transformation of self.”  Gagnon and Holmes interviewed women who had been on antiretroviral treatment (ART) starting as early as 1990 and as late as 2006, and all women experienced the significant body changes of lipodystrophy. They spoke with passion about how doctors and other health care providers need to be aware that while “[HIV] health is measured within clinical setting of CD4 counts and viral load, women… are continuously confronted with the image of a sick-looking body.”

I keep hearing how much better treatment is these days- the schedules are easier, the side effects are less. Yes, HIV meds are improving lives and life opportunities. Treatment can save your life. But it’s not just a matter of taking pills and boom! It’s all good. Women in the study spoke of the transition process to becoming “chronically medicated individuals.” And they spoke about the changes in body shape. 

Body changes PHAs face from treatment they’ve been on or treatment they’re currently on can’t be pushed aside. Gagnon and Holmes point out that lipodystrophy is not a “side effect” but is front and center in changing women’s experiences of themselves in the world, affecting sexuality, self-image, social choices, mental health and economic status.  There are a number of members at PWN who have lipodystrophy. Thankfully, many have been able to connect with peers to discuss how the changes affect them. (If you’d like to connect with a peer support volunteer, contact Melissa).

People are more than their pill regime

We mustn’t lose sight of the people taking pills. There are things that can get in the way of being able to be on treatment in the way it’s needed for success at managing HIV. There are primary needs issues like poverty, no housing (or crummy housing), child welfare, welfare itself, scarcity of food, a controlling or violent partner, a community where you get no privacy and don’t want to risk exposure. But even if you can put food in your belly and have a warm safe bed, things that HIV presents aren’t lacking: changes in self-image and body-image, worries about never having sex again (if you’re single) or disclosing existing sex partners (if you’re not). As a friend who’s been positive for over ten years and is a national activist once told me, “Disclosure never ends and it’s always stressful.”

The pills can’t change poverty. The pills can’t change unstable housing. The pills can’t change fear of being abandoned or beaten when HIV is disclosed. So while it’s amazing how far we’ve come with treatment and people are living longer lives, we all still need to work on making the living characterized by support, care, respect and compassion.  That’s everyone’s work to take on, community and health care alike.

- Janet 

*I know this takes you to an abstract and you have to pay for the full article. If you want to borrow mine, drop me a line.

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It used to be that if you had HIV, you didn’t think about aging- you’d be lucky if you made it to forty. With the success of HAART, more women and men who are positive are being faced with these realities. The inflammation that HIV causes starts a damaging process in the body that can affect the heart and other organs. And the damage can start early on in HIV infection.

“My doctor says I have to lose weight or I’ll have a heart attack. I thought I was going to die of AIDS,” a member said to Sangam not too long ago. Ironic, isn’t it?

I used to think heart disease was more for men to worry about, but it’s not so- heart disease is a significant health concern for all women. Cardiovascular disease kills more women than breast cancer does, although you might think breast cancer is the greater threat.  For women with HIV, the concerns about heart disease are heightened because of the inflammatory effect of HIV.  

The BC Centre for Excellence in HIV/AIDS has recently updated their treatment recommendations to address the inflammatory damage and impact of HIV on cardiovascular health. In fact, it’s suggested that it’s never too early to start treatment even for "asymptomatic" individuals. 

But what about concerns that HAART can have a negative effect on heart health? There are potential side effects of some medications used to treat HIV- some can raise lipid (fat) levels in the blood, increasing risk for cardiovascular health. Those on HAART need to be monitored for the success of the treatment in controlling HIV (viral load and CD4 testing) but also for the possible rise in lipid levels or changes to blood sugar levels.

Biological family history, obesity, diabetes, and existing high blood pressure can all be risks for heart disease. Smoking, lack of exercise and poor eating habits can also contribute. Women need to talk to their health care providers about heart health, and health care providers need to talk to their patients.  

Overall, doctors suggest that the benefits of HAART outweigh worries about the heart. A switch in medications may ease the heart concerns but abandoning HAART can lead to speeding up HIV progression.  

- Janet