Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
            Anthem
            Leonard Cohen

The other week was the 18th anniversary of my HIV diagnosis and I had made it through most of the day without even realizing. I was walking with a friend when it struck me and I declared the milestone out loud. She looked at me, smiled, and said, “It’s worked out alright for you.” Initially I was taken aback. What an unkind sentiment. I’m HIV+!! How does that work out alright?!?  

I was shocked and scandalized and all those other highly dramatic responses. The drama lasted about a nanosecond until I realized I agreed with her: it has worked out alright. It truly has and it’s this perspective that I tend to live out; sometimes I despair, but usually I’m very even keel with this virus. We had a good laugh making light of what can easily be a depressive topic. My friend is one of the reasons I tend towards optimism.

The anniversary of my diagnosis falls one month before my birthday and for more than a decade I used to celebrate the diagnosis rather than my birthday. Well, maybe “celebrate” is the wrong word – a more appropriate term would be I used to mark the date with a gathering of friends. Recognizing the day served many purposes, but mostly it was an opportunity for me to count my growing blessings.

Please understand I’m no Pollyanna; I can rage against it all with the best of you. Yet I also have an uncanny ability to find a blessing in the shittiest of experiences. I prefer to embrace the full spectrum of life and with this motivation in my heart I have surrounded myself with friends who can see the silver lining without ignoring the gathering storms. It makes for a much more interesting life to try to see all aspects.

How has it worked out alright? Well, I’ve got a great home, my income meets my needs, I work in a community that I love, I have a fulfilling spiritual discipline and I have a treasure trove of dear friends. Most importantly, I have my health, which is strong.

I live in a subsidized unit at a housing co-op. In the mid-80s the co-op designated my suite for a person living with HIV/AIDS. It’s a 2 bedroom unit, but charged as a 1 bedroom. The second bedroom is for a live-in care provider. How forward thinking was that in the mid-80s? It’s been a relief for me to have someone stay here and help me through the rough patches when they happen without it being an economic burden.

Oh money. It’s the source of a lot of anguish, isn’t it? I went onto disability benefits a few years ago and what an adjustment that was! Before I could collect a cent I needed to exhaust my savings. Ugh. So there was the financial readjustment aspect of going onto social assistance and then there was the psychological reconciliation of being dependent on a bureaucracy for my income. Double ugh. But even this has worked out alright for me because my housing is affordable, I have the free time I need to take care of myself and I have an engaging part-time job. For sure I live in poverty, but that is only an economic designation because truth be told I actually live in abundance.

My true riches lay with those I love and I have many dear hearts. My friends are my saving grace and I don’t take them for granted.

Over all, it has worked out alright for me. However, I in no way seek to diminish the very real and intense struggles inherent in living with a life-threatening chronic illness. Yet with that said, I do choose to not focus solely on the struggles but to also recognize the potential for growth. Coming to terms with illness can be a tremendously rich experience. It breaks some people and it makes others stronger. Thankfully I’ve found myself in the latter group. It’s not easy and I can’t say I’m not broken because I am broken. I’m full of cracks. But it’s also worked out alright.

- Monique

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’ll admit I’ve been a bit distracted these past couple of weeks, pulled into the waves of info on the Supreme Court of Canada proceedings on the criminalization of HIV disclosure, and the continuing drama unfolding in the US between Susan G Komen for the Cure Foundation and Planned Parenthood over funding for breast cancer care.

Here are the nutshells if you don’t have them:

The Supreme Court of Canada is considering two cases about non-disclosure of HIV status in sexual relationships. Most people with HIV do share their status with potential sex partners, but in the cases where they don’t (or don’t before first sexual contact), criminal charges can be laid. Some of the many questions being debated –

• If a person doesn’t disclose their HIV status, can the “yes to sex” from their partner really be classified as “informed consent”?
• Other cases have argued there must be a risk for “significant bodily harm”. So what is a significant risk of harm and who determines it- the person with HIV? Their sex partner? The courts? 
• HIV treatment can significantly reduce the risk of transmission, hence the “treatment as prevention” concept. Will this new science figure into these cases?

The two cases under review are being considered by our country’s highest court, so these decisions will have oomph.

Breast Cancer Care is Women’s Health Care, but Komen Differs…

Then there are our neighbours in the US. Susan G Komen for the Cure, a foundation that calls itself “the global leader of the breast cancer movement” cut off funding to Planned Parenthood for breast cancer care provision a couple of weeks ago. Their explanations were inconsistent, but one was that Planned Parenthood is currently under investigation about the source of funds used for abortion care. Komen recently enacted a policy that no organization under investigation will be funded, and as far as I understand it, Planned Parenthood is the only organization affected by this policy so far. The power behind the new policy was Karen Handel, who prior to her work at Komen ran on the Republican ticket and was at that time criticized for not speaking out enough against abortion. Add that to the drama.

The reaction to the funding withdrawal was huge, the backlash against Komen was stunning. Komen has reversed their decision and now says Planned Parenthood can be eligible for funds. But this has not been without the internal turmoil of threats or actual resignations (Handel resigned) and a huge cost to Komen’s image as a promoter of women’s health.

The tale’s full of politics, positioning, and prejudice and the loser is women if they don’t get the care they need. That’s also one of the arguments about what HIV criminalization can do- if having HIV can potentially land one in jail, there’s a disincentive to test, and then get care. Without care, HIV has a chance to do its nasty damage to the immune system. And without HIV treatment as part of care, people are more likely to transmit HIV to sex partners.

See why it’s been quite a time?

All of this is still in process, but some links follow below if you want to dip into the tides.

- Janet 

Coverage of Supreme Court and HIV criminalization 

Vancouver Sun editorial that criminalization isn’t the right approach

Toronto Globe and Mail on necessity of disclosure

CBC Early Edition podcast with Micheal Vonn of the BC Civil Liberties Association explaining the issues

Good piece poses a question for everyone: do you discuss your sexual history with sex partners?

Komen/Planned Parenthood 

Explanation of why Planned Parenthood is under investigation

Does Komen apology seem credible?

Good piece on the inconsistencies of decision

Planned Parenthood response to cuts…  and their response to Komen’s reversal.

Komen says decision and says is not politically motivated 

Earlier this week on my You Should Know Twitter feed, someone sent me a link reporting the results of a court case in the US-  a wrestler who knew his positive HIV status but didn’t disclose it to multiple sex partners that followed, putting them at risk for HIV infection. His defense was that he was a sex addict and couldn’t help himself.  Oh boy.

The question of sex addiction aside, let’s talk about the man’s failure to disclose his HIV status. This is a much debated topic in many fields these days- the law (obviously), public health, human rights, HIV prevention and education, health care, you name it. The Canadian HIV/AIDS Legal Network has some great information on the issues, and I’d urge readers to check it out. In particular, I’d urge you to look at their recent brief on an upcoming Supreme Court case.  Two important cases will be tried. 

Here at Positive Women’s Network the question of HIV and criminalization often comes up. We work with women who are infected with HIV, many of whom had no idea their sex partner had HIV. We’ve supported women going through legal proceedings where they are giving evidence against former partners that infected them. We’ve also supported women who themselves have been accused of non-disclosure. Our goal of supporting all women with HIV demands that we look at the issue of criminalization. We’ve been asked to develop policy that could be used by other organizations, as we’re one of only two organizations in Canada that focuses on women and HIV exclusively.

We’ve witnessed the pain and suffering for women on both sides of the criminalization fence.  To provide the most comprehensive support we can, here’s what we’ve come to about the issue at present.

There is no evidence that criminal law is effective at preventing HIV transmission.  People’s sexual decisions are dynamic, intimate and often spontaneous. Criminal laws and convictions haven’t changed that. For women in situations of abuse, coercion or assault, decisions can be about reducing harm, not enhancing it. (One of the cases to be heard February 8 involves a woman and her abusive former partner).

Criminalization may actually drive people away from public health initiatives like testing, counselling, and support. In this US case, the man knew he had HIV, but admits that he didn’t talk about it as he didn’t want his family to know. Why? Probably because HIV is still a highly stigmatized, misunderstood disease.  People with HIV often experience discrimination- even in this day and age when prevention, treatment and education are available.Criminalization can add to this, not diminish it. 

Criminalization gives people a false sense of security.  The idea that “he (or she) would tell me if they had HIV because the law says so” is obviously not the case.

We feel that a public policy response and public health laws are preferable to criminal law. How do we support people with HIV, and all people, to have comprehensive sex education and unbiased HIV prevention information?  How do we support people to gain the power to act on their knowledge and look after their sexual health? How do we address gender and relationship inequality to make this possible?

These are big issues and big challenges.

Their resolution isn’t likely found in a courtroom.

-  Janet

  Photo: IStock

Well hallelujah- I hope.

Earlier this week new US sex education standards were released. Benchmarks include knowledge of proper names for anatomy by the end of second grade (age seven or eight) as well as an understanding of the range of sexual orientation by the end of fifth grade (age ten or eleven). Add to that an emphasis that all kids know about inappropriate touch.

Good news, right? Well…. 

These standards are suggested, not required. And you know that the folks who support abstinence based education are all over it. The piece I read included a quote from the Executive Director of the National Education Abstinence Association who doesn’t agree with the new standards.

The Battle

Contention over sex education is always an issue. I read a piece a couple of days ago about Planned Parenthood being ousted from teaching sexual health in a school district where they’ve been teaching for 20 years. And then there’s the piece from youth counselors  begging for sex education for kids because misinformation is doing more harm than good, putting kids at risk for STDs including HIV, and pregnancy. 

We have the opportunity to teach our kids language and body integrity from the start. Following the old adage, “walking at one, talking at two,” picture a two year old. If your son is pointing to his elbow, you help him learn language by saying, “That’s your elbow, honey.” Obviously we value this body knowledge as a culture- there’s a kids’ song “Head and Shoulders, Knees and Toes,” which jauntily teaches body parts and calisthenics at the same time. So why wouldn’t we teach a kid the proper name for penis or vulva? I don’t think that “wee wee” or a similarly incorrect alternative is better, nor does it do anything positive for our kids.

The Goal

It is possible to teach children about their bodies and instill pride and understanding, rather than confusion. And it’s possible to teach about sexuality without “encouraging” relationships before kids are ready. This isn’t an either /or situation, and more importantly, it’s not a one-time discussion. Kids need to have ongoing sexual health information that’s age appropriate. Five year-olds deserve to know the proper names of their body parts. Eleven year-olds deserve to know about appropriate and inappropriate touching- it may already be too late for those who didn’t hear it beforehand.

Home vs School

Some of the argument about school based sex education is that it should happen at home, not at school. I totally think that parents should be talking to their kids about sexuality and sexual health at home, but not everyone does it. I know one parent at my kids’ school who doesn’t want to give her kid a sex ed “talk” (note the singular). She prefers the school do it, and I’m at least  grateful she hasn’t pulled her kid from the classroom.

We have to be adults here. And being adult is looking to the future of children- ours and others. If we want to raise sexually healthy kids who grow into sexually healthy adults, we need to start with the facts- body parts, body function. I believe in age-appropriate sexual health education for all kids. Lucky for B.C., there’s Saleema Noon. Ideally there’s someone in your locale who’s as sexual health-positive for girls and boys.

For many of us who grew up with limited and/or shaming sex education, we know the need for change. Let’s hope these new US recommendations develop legs, and walk into every classroom in the country.

- Janet 

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 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

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

(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