I’m doing some research on HIV and aging, a wonderful term that one wouldn’t have expected even five years ago. I was talking a few weeks ago with several HIV+ women about their experiences. The conversation turned to symptoms: sleeplessness, night sweats, fatigue, and difficulty concentrating. These are typical symptoms pos people experience. But many women will deal with these symptoms during perimenopause regardless of HIV status. So the question for pos women becomes, are these symptoms HIV-related or perimenopause related? Or both? And when should you check in with your doctor?

For women with HIV there has often been a question of whether HIV itself causes change in menstrual patterns. I recently read an article on HIV and menstruation that said prior to comprehensive HIV treatment, many women experienced menstrual irregularities because of dramatic weight loss and wasting. However, for women who have access to HARRT, stabilized weight and improved health with treatment may mean an end to menstrual irregularities at a younger age than non-positive women.

May.

There’s still a lot to learn about HIV and aging for both women and men. How will HIV and long term treatment affect heart health, blood hormone levels, organs that process the drugs? How will aging affect brain function? Dementia has long been one of the frightening signs of advancing HIV disease- can better overall health mean better outcomes? Time will tell. 

And there’s still a lot to learn about perimenopause for all women. Hormone fluctuations that cause extreme symptoms may suggest hormone replacement options. Estrogen or progesterone? Research wages on. 

For now, the women I talked with agreed it’s good to be up to speed on their medications and potential side effects, and to know about what to expect in perimenopause. Some will have major symptoms and some won’t. Talking with other positive women about what’s happening can help- drop by for lunch on a Tuesday or connect with a peer support volunteer (support workers can hook you up). For research information, AIDS Community Research Initiative of America (ACRIA) has a new blog dedicated to HIV and aging.

It’s a new road.

- Janet

I do love Dr. Robert Frascino, aka Dr. Bob.

Dr. Bob is sex-positive, HIV positive and out about it, wonderfully frank and funny as he educates people on The Body about HIV transmission and prevention. His writing makes people feel comfortable to ask what can be deemed strange but true questions.

The ongoing theme in these questions is fear and the ongoing answer is to educate yourself, directly delivered by the good Doctor. HIV is not as readily transmitted as herpes or human papillomavirus (HPV), but it’s good to know the transmission “formula” when making sexual decisions, particularly with a partner whose HIV status is unknown to you.  Dr. Bob offers encouragement around testing when he thinks it’s applicable and encouragement to learn more about HIV for future liaisons.

He also catches amazing fly balls. One section he writes lists the questions as “I’m Positive I’m Positive.” People throw him anger and accusations of stupidity. It is the Internet after all, where anonymity can prompt people to, shall we say, abandon their manners.  There was the poster who’d been seen by multiple HIV specialists who all confirmed he was not infected with HIV, yet accused Dr. Bob et al. of incompetence, and insisted he should have access to HIV meds. This poster isn’t the only one with great fear.  

Dr. Bob’s messages are clear: know your risks. Know your status. Get care when needed. HIV is a fearful disease to be sure. But the fear it creates can be bigger than the risk of getting it. Dr. Bob tries to keep it all level. And living with HIV himself, he’s aware of the wonder of life. Gotta love him.

- Janet

This week, we got a message from the folks at hivdating.ca – an online dating service for people living with HIV in Canada.  They were asking us to advertise by providing a link on our site.  We can’t do that, but I thought hey, now there’s a great topic for a blog post!  Dating is pretty universally accepted as “difficult”, because of the pressure to impress.  We all have things about ourselves that we would rather not share, but whether you’re hoping to hook up or looking for true love, you will undoubtedly need to share some of them.  HIV and STIs are definitely on the must-share list.  Long term romantic relationships depend on trust, and as soon as sex is on the agenda, there is a legal obligation to disclose HIV status.  The thought of disclosure and possible rejection is enough to turn anybody off of dating, but it shouldn’t be that way.

We feature Sidney’s story on our website.  After lots of ups and downs, she was successful meeting somebody online.  For many people living with HIV, online dating offers some additional privacy.  If done wisely and safely, it can be like an additional “getting to know you” stage before you even meet, let alone get physical.  There are also a number of sites dedicated to matching people living with HIV and STIs.  Hivdating.ca is actually part of a larger online dating community.  You’ll notice it says “powered by positivesingles.com” at the bottom, and positivesingles.com says “powered by successfulmatch.com”.  So it’s a bit of a get-rich-quick pyramid scheme for the site operators, but the advantage at the user end is that you have access to a HUGE database of prospective friends and possible dates.

I also looked at some reviews that praise the security of these sites.  Of course, they can’t protect you from sharing too much information yourself, but they will protect the personal information you give them.  There’s an added benefit to HIV- and STI- specific dating sites that you might not get from mainstream sites; they can be a place to find support and community even if you are not looking for romance.

As Sidney put it, “Your best defense is a good offense”.  Definitely check out her advice and “Have fun but be careful!”

-Miriam

It was great to be at the Canadian Association for HIV Research conference in Saskatoon earlier this month. Lots of interesting stuff unrolled at CAHR, but one plenary session in particular lit me up. It looked backwards at the origins of HIV and forwards at what we can do to bring an end to AIDS. 

Friday morning was bright and sunny in Saskatoon, but a dark hotel room housed a crowd to hear Doctors Mike Worobey and Mark Tyndall. Worobey’s work is dedicated to exploring the origins of HIV, a puzzle that hasn’t been solved, nor its findings fully agreed upon. Understanding how HIV has evolved could lead to new developments- perhaps a vaccine (although Worobey admitted he isn’t hopeful for that, given HIV’s mutation rate), or at least microbicide options. Tyndall cast his eyes forward, stressing the power we do and don’t have to limit the spread of HIV.

Worobey presented an overview- variations of SIV (simian immunodeficiency virus), the precursor to HIV, have led scientists to believe that it’s been around for at least 100,000 years. Based on the analysis of the diversity of HIV in samples recovered from around 1960, Worobey suggested that SIV made the jump to humans as early as the turn of the twentieth century. (He cited Beatrice Hahn’s work on the “how.”)

Although HIV had established itself in humans, it didn’t affect a large population until industrialization took off between 1894 and 1956. With new roads connecting emerging cities and development of business in Central Africa, people moved around a lot more, had more sexual partners, and therefore facilitated the spread of HIV.  Worobey emphasized that human behaviour has spread HIV, and human behaviour can stop it too- HIV is not as infectious as the flu, for example, and behaviour modification with the prevention tools we already have could turn the tide.

Ok, done.

But obviously it’s not that easy.

Dr. Mark Tyndall envisioned a world after AIDS, providing a timeline that went forwards rather than back. He too stressed the importance of our behaviour in the spread of HIV, but he took a social sciences perspective, emphasizing that the playing field isn’t even when making behavioural decisions.  Disparities such as gender, poverty, racism, mental health, governmental negligence and governmental ignorance all play their parts in making HIV prevention a challenge on the individual level where it counts.

In order to turn the tide on HIV, Tyndall argued, we need some significant change. We need to convince those with power on a big scale, like governments, that they need to support change through harm reduction policy and programming. We need to convince those with power on an individual scale, like the man in the moment with a condom available to him, to use it. We need better education on HIV, government support for harm reduction programs like needle exchanges, condom distribution, drug treatment and social programs that address the underlying determinants of health. As societies, we need to change gender disparities so girls and women have more power.  Not so easily done, he admitted. But humanly possible.

What fired me up was this doctor’s inclusion of a wide range of realities that affect health. Health is so much more than our physical bodies, and Tyndall acknowledged that in his call for social change. Yes, there’s a lot of work ahead and it’s international in scope. But looking at the work, breaking it down into pieces, and taking on what we can with passion and conviction is an effort we can all make. As PWN’s vision states, Action and Leadership on Women and HIV/AIDS. Every step has to count.

- Janet 

Understanding the complexities of HIV transmission is an ongoing study. Why, for example, does a group of female sex workers who have unprotected sex on a regular basis avoid infection? There’s something about their immunity that offers them protection, but what is it? This is just one line of research on the risk factors and scenarios that lead to transmission. The more understanding we have, the more potential to improve on existing prevention tools and develop more options. A new finding can add another piece to the puzzle.

Women’s vulnerability to HIV infection during vaginal intercourse is more pronounced than men’s. Not only do women have more vulnerable areas of exposure in the vagina and cervix, but in the case of unprotected sex, the exposure to potentially infectious semen lasts longer than a male partner’s exposure to vaginal secretions. One of the theories about women’s vulnerability has been that microscopic tears that can be created in the vagina during intercourse provide entry points for HIV. (This always prompts me to praise the benefits of lube.)

But new research indicates that women don’t have to experience any kind of tearing for HIV to gain entry. Inside the vagina there’s a layer of cells that is designed to keep out infection. These cells are bonded together to create a protective wall between infection and the cells underneath. HIV is able to latch onto this protective layer of cells and break the bonds apart. Once there is space between these protective cells, HIV can slip through and infect the cells underneath. (Medicine.net provides a more scientific explanation than mine!).

On an individual level, this certainly underlines the importance of using condoms for penetrative sex. On a public health level, further findings uncovering these parts of HIV transmission could help in the development of prevention tools like vaccines and microbicides. Either way, I’m hoping we’re a tiny step closer.

- Janet

Next week is Prevention of Violence Against Women Week (April 19th to 26th, 2010), so naturally we at Positive Women’s Network decided to blog about it.  The rates of violence against women in BC and Canada are discouraging to say the least.  For some of these statistics, visit The Violence Stops Here.  I’ve been surfing the web looking for events and activities around the province and I want to highlight a few.  Of course, this is just a snippet of what’s going on, but it’s encouraging to see so many groups organizing and hosting amazing initiatives to raise awareness and get people mobilized against gendered violence.

In the Lower Mainland, the Urban Women’s Anti-Violence Strategy will again be presenting a series of film screenings, panel discussions and interactive forums.  This important partnership of feminist women’s organization currently includes WAVAW, Vancouver Rape Relief & Women’s Shelter, Battered Women’s Support Services, YWCA’s Munro House and Act II Safe Choice.

There is also a full line-up of events planned in Prince George – hosted by a number of  groups including the Elizabeth Fry Society, Phoenix Transition Society, and John Howard Society.

In Kimberley and Courtney, an impressive list of organizations and businesses have banded together to present their own Clothesline Project.  T-shirts painted by women, with messages relating their personal view of violence against women, will be on display in various locations.

Meanwhile, The Violence Stops Here will be hosting a Men’s Roundtable, bringing together men’s anti-violence activists, professional athletes and politicians – urging men to own their role in ending violence against women.  For more information, contact Battered Women’s Support Services.

In the coming week, whether you are a woman or a man, take a moment to think about what role you can play in preventing violence against women, and check out some of the events in your neighbourhood.  If you are a woman experiencing violence, don’t hesitate to call WAVAW’s 24 hour crisis line at 604-255-6344 / 1-877-392-7583

-Miriam

When I started in this work 16 years ago, there were few treatments and little hope. But people are resourceful thinkers, and alternatives to medicine were hot. Meditation groups, yoga, and the power of positive thinking were just a few things that were embraced. Having a life threatening illness that often meant a rapid death with little help from Western medicine challenged people to get their minds around these different approaches. For some it meant getting clean from drugs or alcohol, for others it meant looking at unhealthy relationships and deciding to leave them. Through these changes, there were people who came to the notion that “HIV was the best thing that ever happened to me.”  But there were also those who didn’t reap the perceived benefits of learning they had HIV.

Louise Hay’s thinking  was popular in those days. Louise Hay was writing about the connection between mind and body, implying that you could heal yourself from a disease like cancer. Not everyone read her books, but the ideas of her books floated in the air and took weight in conversations. People felt the possibility was there. 

“I hate Louise Hay,” spat a support worker one day as we debriefed.
“Why?”
“Because her philosophy of you can heal your life just adds to the guilt that PWAs have if they can’t.”

And he was spot on.  There were those who plunged further into drugs and alcohol, and lost any hope they’d ever have a healthy relationship because HIV would keep them trapped (abusive partners often helped reinforce this notion). And there were those who tried like mad  to heal their lives and got sick and died anyway.

I see echoes of that in this day and age of HIV being hailed as a “chronic manageable condition” for those who are on treatments (and not everyone is, but that’s another story). I’m not dissing treatment by any means, but it hasn’t made things manageable for everyone. I was grateful to see a recent blog by the smart and funny Dr. Bob to this effect. Dr Bob, himself HIV-pos and by his own admission very privileged, highlights some of the hefty challenges that HIV still brings, both physical and emotional.

How people speak of their illness can be influenced by language. I thought of this as I read Judy Segal’s piece in the Vancouver Sun about being a cancer survivor who wasn’t so sunny about her diagnosis. She wrote, “If, as a person with cancer, you violate the code of optimism, or if cancer somehow failed to improve you, you’d better be quiet. So I thought I’d better speak up.” She expresses a need to be honest about not feeling positive at times, and feeling pressured that she wasn’t keeping up the optimistic narrative that those diagnosed with cancer are supposed to have. It so made me think about those living with HIV.

“I reject a survivalism that seems to blame the breast-cancer dead for not trying hard enough,” wrote Segal.  An echo to my support worker friend’s lament that made me nod as I read and sipped my coffee. 

I’m with the optimists that say you can change your attitude about things and that in itself can change your overall health. Optimism is important. But it is one of many avenues a person might travel in a day when dealing with life changing diagnoses like HIV or cancer. A presumption that a person should always make the best of it is like putting a bearing rein on horses that holds their heads in place and can inhibit them from putting their heads down into hard work. It’s not the best support we can offer. The best support is to listen to what’s happening in the moment. 

-  Janet

Just back from a conference in Montreal, I’m a little tired, sweetly full of things to follow up on, and amused by the fact that because of the damp, it feels colder here than it did “back East.” The Canadian AIDS Society Leading Together 2010 conference attracted people from all across the country to share knowledge, network and band together to discuss the challenges faced by PHAs.

How to grab the energy of what happened? The great passion with which people address the homophobia, the serophobia, sexism, discrimination and even the glorious advances in treatment that spell better, longer lives for PHAs was revealed in posters, workshops, plenaries, and displays.

For example, take The Electronic Wake. This art installation in Montreal features “techno-flowers” with petals made of shoes and the face of the flower as a space where video testimonials play. People are invited to send a message, express what they know or feel about HIV, show solidarity, or make a comment. Filmed at community events in Montreal, the garden of techno-flowers is on display at the Montreal Parc L’Espoire (Park of Hope), the AIDS memorial. Talking to one of the creators of the project, I felt as if I was looking into a summer afternoon in Montreal, full of possibility and energy.

Miriam and Melissa took a lot from HIV Edmonton’s session about incorporating art and creativity into everyday programming- the appeal of the senses to the mind. Marcie said the session which emphasized the power of storytelling in educating the public was a great reminder that people connect people, and stories are our way of weaving meaning into our lives. Appeal to someone on a personal level and you have a new way to get your message across, whether it’s health promotion or fundraising.

Sunday’s plenary session on the criminalization of HIV featured the voices of several people who painted the complex picture that it is. Yes, it’s important for PHAs to take responsibility for disclosing their status to sex partners, but it’s also the responsibility of sex partners to protect themselves. While all speakers commented on the harshness of the law in managing people’s personal lives, there was also general acknowledgment from PHA speakers that the option for legal recourse needs to be in place. Darien Taylor spoke of HIV positive men who purposely put their partners at risk as using HIV “as a form of violence against women.” This was echoed by another presenter, who also spoke about the cultural challenges of talking about sex and HIV in communities where it’s just not done, and to do so means risking violence.

Sangam provided a workshop on her "HIV basic training" around the province with transition house workers, and we also had two posters on display. We profiled our You Should Know project, a social marketing health promotion campaign aimed at preventing STIs. Since we often receive calls from people across the country wanting to know more about our retreat program, we  presented a poster on that as well.

There are many ways to educate people through their fears, prejudices, and hopes. There’s much to do. The tension between what could be and what things currently are fuels this work, and it’s a vibrant, committed community that takes it on.

- Janet

A recent headline about humanpapillomavirus (HPV) made me glad, because it underlines the importance of talking about all kinds of safer sex. Researchers are finding HPV DNA in various tumours where the cancer is found in mucosal tissue, such as the nasal cavities or the throat. The connection between oral sex and HPV that leads to these cancers can be used as another argument in favour of the HPV vaccine, which has been controversial. I support parents’ rights to make decisions about what vaccines their kids receive, but am also for illuminating the prevalence of HPV.   

HPV is one of the most common and easily spread sexually transmitted infections. Even using barriers like condoms and dental dams might not prevent it, as skin-to-skin contact is all that’s needed for transmission. A recent study from McGill University found over half of sexually active young adult couples were infected with HPV. Forty-four percent had the types that can lead to cancer. For people who are becoming sexually active at a younger age and racking up more sexual partners, these trends are likely to continue. Enter the HPV vaccine.

The HPV vaccine currently available (another has just been approved by Health Canada) was developed to protect against four strains of HPV, two of which can lead to cervical cancer and two of which can lead to genital warts. At present, it’s being offered to girls and young women aged 9-26, ideally before they become sexually active. Once women have become sexually active and been exposed to HPV, the benefits won’t be as dramatic as they are for unexposed women. (Manufacturers are trying to market the angle  that women won’t have been exposed to all four strains the vaccine protects against, so vaccination in the 27-40 age range could be helpful and cost-effective. They haven’t convinced the powers that be just yet). Studies are ongoing- Oak Tree Clinic is one of the sites exploring how the vaccine affects HIV+ girls and women.

There has been discussion about vaccinating boys too. They aren’t currently offered the vaccine, but you can see where they could benefit. Less HPV circulating in the population means less likelihood of exposure, infection and need for eventual treatment, etc. Research on that is also in the works.

Some parents have held off vaccinating their girls, citing that vaccination might seem to be a “go to it” directive for sex at a young age. As a parent and sex educator, I disagree. I think one can instead look at it as an opportunity to talk to our kids about different tools to keep them healthy when they decide to have sex. Depending on what we want to teach our kids about when those sexual relationships might begin is an indivdual choice, but approach is important. Studies have found that religion- based abstinence programs often fail, but abstinence programs that provide kids with negotiation and problem solving skills have greater success at delaying sex.

Whether parents choose to vaccinate or not, the debate about the HPV vaccine is a great opportunity to talk about the variations of sexual behaviour and about personal safety. It’s a chance to talk about safe practices and the responsibilities and risks that can accompany the pleasures of sex. There are age appropriate ways to do so. (If you’re not sure where to start,  see Meg Hickling’s fantastic selection of books.) using the HPV vaccine to talk about healthy sexuality and self-esteem sex with girls (and their brothers) isn’t a directive to have sex- it’s a responsible thing to do. 

- Janet

Right around the time this post goes online, the Olympic torch will be running by my house.  I’ll be standing on the corner with my camera and pretending that’s not my dog barking in the window, driven insane by all the “trespassers”.    I don’t know what these two weeks will hold for me and my family, but for many people – especially athletes and visitors – the Olympics will be one big party.  If you’re not somebody who regularly participates in international sporting events, you might not know that there’s an awful lot of hanky-panky and partying that goes on.

Unfortunately, when people are visiting another place, feeling excited and euphoric, with easy access to alcohol, drugs and parties, they don’t always set themselves the same boundaries as they would at home.  The numbers show that the incidence of sexual assault and violence against women increases at international sporting events like this one.  With more people engaging in risk activities (like heavy drinking and having unprotected vaginal or anal sex), many end up bringing home a not-so-nice souvenir in the form of a sexually transmitted infection (STI).  That’s why the Vancouver health promotion and harm reduction community has banded together to present Safe Games 2010 – a visitor’s one-stop on-line shop for information on staying safe and partying responsibly during the Games.

In addition to providing online information and links to local agencies (including PWN), Safe Games will be visible at events and in the media, distributing Safe Games kits, including condoms, lube and information about how and where visitors can get help if they find themselves in a pinch.  Condoms have been distributed at every Olympic Games since Barcelona 1992.  70,000 condoms were quickly used up at the 2000 Olympics in Sydney and another 20,000 had to be brought in.  100,000 were distributed at Salt Lake City 2002, 130,000 at Athens 2004 and Beijing authorities distributed a whopping 400,000 (100,000 of them for athletes).  I am sure not everybody guages the worth of a city by how many condoms they can distribute when they host the Olympics … but I do.  The visibility of a safer sex message and availability of condoms at large, high-profile sporting events has the power to reduce HIV transmission and save lives.

Another initiative I’ve been following is Safe Vibe.  A campaign by WAVAW (Women Against Violence Against Women), Safe Vibe aims to build a movement to keep predators out of bars.  Check it out.  For more on HIV and Sport, see the last issue of our newsletter The Positive Side.  And to all you visitors to this beautiful city – happy (responsible) hanky-panky, and sorry about the barking dog!

-Miriam

This blog represents the ideas of individual writers, and does not necessarily reflect any formal stance taken by Positive Women’s Network.