When we held our first health promotion conference we called it SpringBoard because that was the goal- to launch conversations about women’s HIV health so we might inspire change. Eight years later, we’re still talking – with HIV service providers, positive women, students in health care and sciences, and a wonderful group of people in HIV, mental health, addictions, and anti-poverty work. 

Every year we explore different themes- last year it was Aging Gracefully. A couple of years ago it was looking at Confines of Health.  This year’s theme is Living Out Loud, and like the others, it’s open to interpretation. Presenters will all have an interesting take on it-

• Dr Myles Blank will address mental health and HIV. He works with women at Oak Tree Clinic and SheWay.
• Micheal Vonn of the BC Civil Liberties Association will present the latest on court cases about HIV disclosure, including the facts from the pending Supreme Court decision.
• Glen Bradford of Positive Living BC will present on the theme as it plays out for peer support staff in the Patient Navigation program.
• Melanie Kuxdorf of CIHR Canadian HIV Trials Network will be looking at it as it relates to using social media to do community research.

A wide range of interpretations, yes. And once again, the hope is that we will spark inspiration for strengthening the many communities women with HIV inhabit.

Join us May 3, from 1030-230. Registration is free but you must register in advance. We look forward to seeing you!

- Janet

Super happy- I spent Wednesday at Health Care 2.0 Social Media Camp, an event presented by the BC Patient Safety & Quality Council. It was lovely to see people I’d met previously through the Healthcare and Social Media Canada community (#hcmsca on Twitter) and to meet new faces who are as keen as I am to share the word about the potential of social media tools to engage, build and support health communities.

Social media tools are used by many community groups to enhance their relationships with individuals and organizations. We’re active on Twitter and Facebook, and to a lesser extent, YouTube (there are only so many hours in a day). Social media tools can help reach organizations and individuals who don’t live in the Lower Mainland- wherever there’s Internet, there’s a voice.*  We share program information that helps women get connected with us and ease their isolation. We also share resources and research findings so women with HIV and the folks supporting them can get up to date information for the best care no matter where they are. 

The exciting element of social media is the “social.” It’s participatory, and everyone can have a voice through sharing, discussing, and reflecting on what’s posted. This can result in strengthening communities and visioning change where it’s needed. Ongoing throughout is the opportunity for conversations.

Those of us using Twitter in the HIV community in Canada connect through community hashtags- #HIVCan, #HIV, #AIDS, #AIDSlaw etc. (Here’s a list of the tags often used). We can get program and event information to each other immediately; and share info about local and international action. New findings about HIV, prevention and treatment news is shared far and wide. A lot of activism is also carried out online via petitions that go around the world.

Social Media Tools Perfect for HIV Connections

One of the fantastic things happening through social media tools is the opportunities for patient empowerment, peer to peer connection, and patient to healthcare provider communication- sound familiar?  This is what HIV activism has always been about, and social media streams a great way to carry it on. Now it’s crossing over into other health issues as well. Community development, patient empowerment and making change in how doctors and patients work together is a growing wave that is supported by the energy flowing through social media channels. 

For those of us in the wide reaches of Canada working with little money for meeting in person, social media tools are also a great way to get to know people. As Kat Dodds from Hello Cool World said “Social media is all about collaboration; connecting with the people you want to work with.”  The HIV community is rich with accomplishments and ripe with possibility.

Like any research you read, always consider your sources- there’s incorrect information out there.  Look for established AIDS support and research organizations, medical researchers, or places like the CIHR Canadian HIV Trials Network or BC Centre for Excellence in HIV/AIDS. You can start by looking at the lists we have on our Twitter feed. And if you haven’t already, think about joining conversations on Twitter about healthcare and social media. Here in Canada, use #hcsmca to find out more about it. If you’d rather look for HIV info, #HIV will get you lots of stuff. There’s a ton to discover.

- Janet

*Communities without reliable internet access are harder to reach, obviously. I hope this will change as systems are upgraded.
 

I finally had a chance to take a look through a report that came out recently called HIV/AIDS Prevention for Women in Canada: A Meta-Ethnographic Synthesis.

It is the result of a research project developed by several universities and national AIDS organizations. The aim was to synthesize the findings of different research and make them available in one convenient source, thereby facilitating evidence-based decision making (always a good thing, right?) when it comes to HIV prevention for women. This is important because women account for an increasing proportion of people living with HIV, and Aboriginal women and African, Black, and Caribbean women face disproportionate rates of infection.

The most important message I gleaned from the report was one we should know already: Stop treating women as a homogenous group. We are not the same. This has long been known by women of colour, who have consistently pointed out that the white middle-class women who dominate feminist movements do not represent all women. Our experiences are different, yet we’re still fighting that beastly notion of the “universal woman.”

The report notes that “the importance of tailored programming and policy cannot be overstated”:

          When women are regarded and treated as a homogeneous group with
          identical HIV prevention needs, the ensuing prevention interventions lack
          the specificity to address the unique determinants of health among the 
          diverse populations of women in Canada.

In regards to ethnicity, it was observed that in general “HIV prevention services were usually not culturally-tailored or sensitive.” And when ethnicity was a factor, programs “often ignored the diversity within ethnic groups.”

Many Aboriginal women find it difficult to reconcile their traditional conceptions of health with the Western medical model. What struck me was that they “described needing to relate HIV to their traditional understanding of health and healing before they could move forward with their personal acceptance of their new HIV-positive identity.” They expressed a need for female staff who understand the historical violence wrought by colonialism and offer culturally appropriate services.

Although Black women are overrepresented among people living with HIV, fewer of them access HIV services than other women. Other issues, such as racism and unemployment, take precedence for them. Prevention messaging also isn’t reaching them, because it’s not directed at them: it’s not in an appropriate language or it focuses on risk groups, such as men who have sex with men and people who use drugs, that don’t seem relevant. Many Black women expressed a need for community leaders to start discussions about HIV, and the church, with its influence and reach, was seen as having great potential to educate about HIV. (There’s a push for this in the US as well.)

What does this mean for HIV prevention initiatives? It means thinking seriously about how to reach those women who are not getting the information they need and also talking and working with those women to figure out the barriers and develop more effective means of communication. It means focusing less on individual risk behaviours, and thinking more about inclusivity and accessibility. It means creating messaging that is relevant and comprehensible and that doesn’t further stigmatize a community. It means pushing beyond the easy, familiar, and comfortable.

It’s not necessarily simple, but it’s not necessarily complicated either. I just came across a neat example: the website of The Coalition Sida des Sourds du Québec, which offers services to people in the province who are deaf or hard of hearing. The website provides information on HIV and other sexually transmitted and blood-borne infections in English and ASL (American Sign Language), and French and LSQ (Québécois sign language).

- Erin

It’s been an interesting year in HIV science.  The folks over at The Body and Poz have chronicled the year nicely, so I’ll draw on their work to look specifically at women.

In the big picture, microbicides are still an elusive target: a trial using tenofovir vaginal gel was discontinued when it didn’t show effectiveness. Oral pre-exposure prophylaxis therapy proved a disappointment too, although research continues on both. That’s good, because women represent 50% of infections worldwide (60% in Sub-Saharan Africa). Women also experience disease progression at lower viral loads than men do – another thing to consider when looking at treatment recommendations. There’s still a lot to be done in terms of stigma, treatment access and social issues. Women struggle with convincing partners of the necessity for condoms, and violence runs through many relationships, increasing HIV and other health risks.

In Canada, the contentious issue of supervised injection sites came to a head with the Supreme Court Appeal regarding InSite. The Court ruled in September that InSite could remain open, as the health benefits outweighed the potential harms. Criminalization of HIV continues to be a difficult issue, and media portrayals don’t help. See Erin’s “The HIV Party Woman” for a great analysis. Just recently, we heard that a Canadian vaccine candidate will go to human safety trials in 2012- could this be a turning point?

At home in BC, the team at Oak Tree Clinic is exploring whether the HPV vaccine will help women with HIV-  a partnership with researchers in Uganda reaching beyond our borders. The STOP project forges on, seeking those who are undiagnosed. A trial of serodiscordant couples found that those who delayed treatment were more likely to transmit HIV to their partners, underlining the benefits of early treatment and reducing transmission that STOP embraces.

Here at PWN, we hit the milestone of 20 years of supporting women with HIV and educating the communities that work with them just how different HIV is for women. It’s been an honour and a privilege. 

I am deeply appreciative of the folks I work with in this field and passion, and know my coworkers at PWN feel the same. To everyone in our communities, all the best for the coming year. May we work together to address the many pieces of the HIV puzzle and improve the lives of all communities.

Janet 

Photo: nokhoog_buchachon / FreeDigitalPhotos.net
 

I’m not usually pulled in by the nitty gritty science of HIV. Beyond the basics, I’m easily dazed by the complexity and the jargon. But this week’s top story has piqued my interest a bit and led me to more questions than answers.

A new HIV vaccine has been approved by the United States Food and Drug Administration for human clinical trials, to begin in January 2012—next month!

Developed in Canada by Dr. Chil Yong Kang at the University of Western Ontario, with financing from the company Sumagen Canada, SAV001 is the first HIV vaccine to use a genetically modified killed whole HIV-1 virus, according to the press release. The vaccine is said to have “stimulate[d] strong immune responses in preliminary toxicology tests.”

An effective HIV vaccine has eluded researchers for decades, so this is a development to be both excited and cautious about. I’ve found that the news coverage—which has been heavily reliant on the press release—has left me, as a vaccine layperson, with several questions.  

A KILLED WHOLE VIRUS?

Let’s try to break this down. “Killed” means the virus is inactivated. In the case of SAV001, the virus is made ineffectual through genetic modification, as well as through chemicals and radiation. A live vaccine would have a live, but weakened, virus. Live vaccines tend to be more effective, lasting longer and requiring fewer doses.

“Whole” means that the entire virus is used in the vaccine, which makes sense given that it has been killed. Other vaccines use a piece of a virus, for instance a protein fragment, just enough to trigger an immunological response from the body.  

PRELIMINARY TOXICOLOGY TESTS?

What do those involve exactly? I have no details. I called Keith Marnoch, the director of media relations at the University of Western Ontario, and he told me that “a range of animal testing” was used for SAV001.   

HIV-1?

There are two major types of HIV: HIV-1 and HIV-2. The first is the more common, and the latter is found mainly in West Africa. What are the implications of developing a vaccine using the HIV-1 virus? Will it be ineffective against HIV-2? And given that HIV-1 has several subtypes, will that limit the effectiveness of the vaccine?  

SUMAGEN CANADA?

In addition to being a professor at the University of Western Ontario, Dr. Kang is Sumagen’s chief scientific officer. Sumagen Canada was established in 2008 as a subsidiary of the Korean-based pharmaceutical company Sumagen, which is a subsidiary of Curocom, which is involved in the provision of information technology services to banks. The development of an HIV vaccine is a business venture as much as it is a health initiative—and as we’ve seen with medication, this means that some people’s lives will be saved, while others are allowed to die. Sumagen Canada is ready to profit: It has already patented the vaccine in more than 70 countries.

- Erin

This is the final blog in our series: PWN at 20 which honours our twentieth anniversary providing support, education, community resources and networking for women with HIV and health care and social services communities.

It’s World AIDS Day, an internationally recognized time to remember the past and rally for the future. This year there are multiple themes, a reflection of the diverse issues presented by HIV. The UK National AIDS Trust says “Act Aware.” UNAIDS has set sights on “Getting to Zero.” Here at home, the Canadian AIDS Society urges Canadians to “Do Something.” There is still so much to be done.

Twenty years ago some visionary women set out to support women with HIV in the Vancouver area. They were women with HIV and women from various backgrounds- nursing, social work, and education. They knew something needed to be done for women specifically, and their first meeting in the common room of a housing co-op led to the nationally recognized organization we are today. One of the big themes talked about back then was the stigma that women face, especially as members of intricate family units that centre around them.

Stigma still exists everywhere for women with HIV. A Canadian study of women revealed that stigma figures highly in their day to day lives, as does sexism and racism.  Women the world over report this. There is stigma in having HIV, and stigma in “bringing it into the family” whether this was the actual case or not. Women who discover their HIV status during pregnancy often bear the brunt of blame, as they receive the diagnosis their husbands haven’t sought.  

But women challenge stigma, and challenge the destruction that HIV brings. The Grandmothers to Grandmothers  movement is a great example. Many grandmothers in African countries have to step back into parenting their orphaned grandchildren when adult children die of AIDS. Grandmothers here in Canada work to raise awareness of the need for this work and funds to support it through the Stephen Lewis Foundation. (Yes, that IS a plug to donate!)

Peer support is also an essential part of confronting HIV as it weaves through medical, political, socioeconomic, geographical, and intimately personal pieces of life. (True, that sentence is a challenge. – but so is living with HIV). Members at Positive Women’s Network say “PWN is a confidential and safe space created for women…it feels like a family, feels like going home.”

As another member puts it, “Women heal women.”

But women can’t do this work alone. Women and men need to work together to change the shape of what it’s like to live with HIV. Many courageous and strong people do just that. Here in BC, PWN is lucky to work alongside many organizations that recognize the unique need for women’s services and complement them with their own. We’re also grateful to groups and individuals we work with across the country.

As the PWN community contemplates the beginning our twenty-first year in “Challenging HIV. Changing Women’s Lives” we ask everyone to “Do something” on World AIDS Day. Learn about HIV; talk safer sex with those you care about, young and old. Share the humility that this could happen to any one of us – risk factors for HIV transmission are based on human vulnerabilities. Make sure you and your loved ones know how to prevent HIV and where to go for support should it be needed. Don’t deny- do something.

- Janet 

Another edit of this post is on You Should Know

photo: Kevin Rosseel/ Morguefile

It’s been a rocky case, and it’s reached a new triumphant plateau for those of us working in health care. The Supreme Court of Canada has ruled that InSite, Vancouver’s controversial safe injection site, can continue to offer health services. The Federal Government’s appeal to the BC Supreme Court decision of 2008 that supported InSite has been defeated.     

InSite opened in 2003 under a special exemption to the Controlled Drugs and Substances Act, as InSite is partly a research facility, looking at the impact of safe injection on a number of factors in public health. The exemption was renewed several times, but in 2008, but the Federal Government balked at another and InSite was slated for closure June 30, 2008. BC Supreme Court Justice Ian Pitfield ruled in May of 2008 that InSite provides health services to addicts, and denying them services would contravene the Charter of Rights and Freedoms. The Federal Government decided to challenge that ruling. PHS Community Services Society, which operates InSite in conjunction with Vancouver Coastal Health, says that the closure would infringe on the rights cited in the Canadian Charter of Rights and Freedoms.

Which leads us to the decision today.

Health care for injecting drug users isn’t the most popular notion for the more conservative minded. Naysayers have said it won’t help people stop using drugs, that it will lead to increases in drug use and increases in crime.  Studies show the opposite.

InSite supports people to access a range of health options needed in the struggle with drug addiction. Abstinence is one option, but not the only one. More supportive options lead to better health outcomes. While one person may deal with their addiction by trying to go “cold turkey” another may not be able to, and a more comprehensive approach will have better and more long-lasting results.

InSite staff includes nurses, counsellors and peer support counsellors. InSite doesn’t supply people with drugs, but staff does help them learn how to use them more safely. Nurses teach about how to avoid getting injection associated illness and infections. They are also immediately on hand when and if an overdose occurs, although overdoses have decreased by a third since InSite opened. When a client expresses interest in going to detox programs, support and referrals are made. There’s also counselling, referrals to housing and social support services. Veteran injectors say it’s saved their lives. But the abstinence only mind of many politicians hasn’t allowed for the spectrum of what recovery and change can look like.

Those against InSite see it as a place of criminality. I see it as a place of health care. Thank goodness the Supreme Court has decided on that vision too. For more of today’s updates on this landmark ruling, follow hashtag #InSite on Twitter. 

- 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

A new HIV drug is on its way, and it could change people’s dreams. On July 22, Health Canada gave a "Notice of Compliance" status to Edurant (rilpivirine). "Notice of Compliance" means that the drug meets Health Canada’s standards in terms of safety, efficacy and quality. The next step towards making Edurant available is the  Common Drug Review. This process looks at how the new drug compares with others of its kind, how it will benefit people, and whether it’s worthwhile for the money it costs.

Rilpivirine is a new NNRTI (Non-Nucleoside Reverse Transcriptase Inhibitor). NNRTIs work with other HIV medications to stop HIV from being able to make copies of itself. Edurant was tested for use in people who have never been on treatment before (known as “treatment naïve”). The goal was to test how well it worked and what kind of side effects or “adverse effects” were seen when compared with Sustiva (efavirenz), which is known for the wild dreams it can produce.

Good representation of women represented in studies

There were a good proportion of women in the testing of Edurant- 32%. This often isn’t the case when testing HIV meds. Women and men responded equally well to Edurant combinations, but the intensity of side effects was different for each group. Women were more likely to experience nausea and men were more likely to have diarrhea. Side effects that challenge one’s day-to-day functioning, especially when looking after kids, can be difficult. Ideally, side effects are largely resolved within the first two months of treatment.

Safety in pregnancy undetermined

Rilpivirine has been tested in animals (rats and rabbits) to see its possible effects in human pregnancy. There were no adverse (negative) effects in animal studies, and animals were exposed to 15 and 70 times higher the recommended dosage for humans. When Ripilvirine was approved for use in the U.S.,  the Food and Drug Administration (FDA) placed it in Pregnancy Category B, indicating “Animal reproduction studies have failed to demonstrate a risk to the fetus and there are no adequate and well-controlled studies in pregnant women”  In other words, we don’t yet know how Edurant might affect a human pregnancy, but animal pregnancies haven’t indicated need for concern. It should not be used in pregnancy unless the potential benefits outweigh the potential risks. (product monograph)

Target Population

Edurant will be used as a first line therapy for those who have never been on treatment. More studies are needed to see how it will fare in people who have been on HIV treatment already. It did have a higher incidence of virologic failure (didn’t control HIV reproduction) than Sustiva, but its adverse effects were lower. But of those who did fail, 50% experienced resistance, which can influence what other treatment options they may have later on. All this needs to be considered when starting HIV therapy.

The Common Drug Review of Edurant will take a number of months before it will be available on public formularies, although private health plans may cover it sooner. You can follow its progress at the Common Drug Review page that lists drugs that are approved and in process.

- Janet
 
Look for a more detailed version of this blog in our upcoming newsletter.  

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 looked at HIV in Aboriginal Communities.

There is power in partnerships. Our organization was a partnership from the start: HIV+ women and uninfected allies working together. We’ve benefitted greatly from the various viewpoints that partnerships offer. Learning from people, organizations and even landscapes has helped us improve services and resources for HIV+ women.

Partnerships connect people. Here’s a few of our wonderful partner projects over the years.

Oak Tree Clinic

Oak Tree Clinic, which is the province’s HIV care centre focussed on women and children, launched at BC Women’s Hospital in 1994. The idea behind a women-specific health centre was to include a place for women’s HIV care and a place where children were welcome and able to access treatment too. The planning committee was made up of doctors, social workers, and members of Positive Women’s Network, including the Executive Director, Marcie Summers.

The vision back in the 90’s continues in service delivery today, with comprehensive care for women that is provided by a multidisciplinary team of doctors, nurses, a pharmacist, dietician and social worker. Kids can come along to the play space, and if they’re infected themselves, they get care as well.

We also partner with Oak Tree in providing outreach, an important bridge for lots of women. Getting to medical appointments can be difficult, whether it’s because of travelling a long distance or because HIV itself has many challenges to body and spirit. Oak Tree’s Outreach Workers connect with women 1-1 and take them to their appointments to ease these challenges. One of the Outreach workers is part of the PWN staff team, an idea that was launched early on in the life of the Clinic. Having an Oak Tree staff person as a part of the PWN team means that information about services, programs and resources travels both ways between Oak Tree and PWN. Better awareness of options provides better support.

Physician Education Project

HIV is different for women than it is for men, a truth that still plays out today, but this was even more evident back in the 90’s when PWN started. The Physician Education Project took place at Grand Rounds sessions in hospitals. Doctors could provide the influence to get into the hospitals, and the team of doctor and positive woman would teach about medical and psychosocial realities of HIV+ women’s lives. This national demonstration project was offered around the Lower Mainland in 1995-1996 and presented at the XII International Conference on AIDS in Vancouver in 1996.

But our membership isn’t limited to the Lower Mainland. We approached several smaller communities in BC about the idea of taking physician education one step further. We didn’t want to just jump in with our experiences. We wanted to know what was happening for positive women locally in their communities, and how we could work together to improve things. The Healthcare Provider’s Education Project was a partnership of Positive Women’s Network, AIDS Prince George (now reshaped and renamed Positive Living North), ANKORS and AIDS Vancouver Island. We worked in each community to discover the issues. We expanded the project to include health care and social service providers beyond primary care or HIV doctors, because we were hearing that HIV phobia and stigma were also problematic outside the medical examining room. We trained local educators so they could make connections in the community that would benefit services and support beyond the end of the project.

Listen UP! Peers get WISE

Listen Up! was a multi-year project of peer driven research and peer-driven education. Positive women interviewed others about the risks that they felt had made them vulnerable to HIV and what resources might have helped them avoid it. Using the information gathered from the peer-research, PWN partnered with communities across BC to talk about the determinants of health and HIV risk for women. Small towns like Chetwynd, Williams Lake and Prince George and communities on Vancouver Island played host to the education team to present data and directions communities could take to support women.

A great project unfolded with YouthCO, Canada’s first youth-driven and youth-run HIV organization. We started together because young women were increasingly at HIV risk and underserved, which led to the Bases Covered awareness project. That evolved into two phases of Women’s Initiatives for Support and Education (WISE.  Peer-to-peer support and education resulted in resource development for young women infected and those who were at risk.

Transition Houses

Violence affects women with HIV significantly. Abusive partners can blame a woman for bringing HIV into the relationship, use it as a means to ensure she will stay in the relationship (“No one will love you now that you have HIV”). They can also control when she can or can’t access health care and support. Enter our partnership with the BC Society of Transition Houses. Many PWN members use transition houses to get out of abusive relationships, but fear they’ll not be welcome can hold them back. We’ve been delivering HIV education to staff at transition houses for years now. HIV transmission information, confidentiality and disclosure, universal precautions and advocacy issues all figure in the sessions.

We value our ongoing partnership with AIDS Vancouver for the Grocery program, and connect regularly with other member groups of the Pacific AIDS Network on committees and short term projects. We’re currently in partnership with Literacy Lives, a project sponsored by Simon Fraser University to increase health literacy of those living with HIV. And we’ve had a fantastic six months working with Tamara Landry, a PhD candidate from Universities Without Walls. Tamara has been interviewing members and community folks in documenting our 20th anniversary.

We believe that partnerships can create awesome possibilities. We’re grateful to the many we’ve worked with over the years, and definitely look forward to more. 

 - Janet