I loved this article about a new TV show that totally misrepresented information about HPV (aka Human papillomavirus, if you prefer the long handle). I didn’t love the misinformation, but I loved the writer’s critique.

The summary of the piece is that a TV show character mixes up HPV and HIV (human immunodeficiency virus, again for the long handle lovers). She gets lousy information from her doctor and panics. Sounds like an argument for good sex education if I ever heard it.

Wonderfully, the writer shares the correct information on HPV and testing for other STIs (sexually transmitted infections). She also makes a valuable point about storytelling – while TV shows aren’t the best source for accurate information, they have great impact on viewers because the emotional impact of a story can easily override facts.

We know stories are important, especially when it comes to health. Shared experiences can be fantastic support. But shared misinformation can do a lot of harm. “Do you know what happened to Susie when she got [fill in the blank]?” Of course it’s bad news.

Don’t assume what you see about health related stuff in a TV show or movie is correct. While some shows do have scientists review what is presented (a welcome job to this chemist), not all do.  Mark Chichocki offers this as his list of best movies about HIV/AIDS, and given his nursing background, I trust it.   

End of the story is, don’t jump to health conclusions based on last night’s sitcom. And if you research your own health info online, which many people do, take information from “Dr Google” to talk over with your doctor(s). Take your time, ask questions if you’re not clear on something, get a second opinion if you want it.

Your health is yours alone, and not like that of a TV character.

- Janet

Photo: FreeDigitalPhotos.net

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

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

December 1, 1989, marked the first World AIDS Day. Since then, a lot has changed in the field of HIV, and a lot hasn’t. World AIDS Day is still a time to consider the many ways in which HIV challenges the world—medically, socially, emotionally, and politically.

In light of the various challenges, organizations have adopted different themes for the day. Last week Janet blogged about the UK National AIDS Trust’s message to “Act Aware,” and next week she’ll look at the Canadian AIDS Society directive to “Do Something.” Here I want to give some thought to the UNAIDS goal of “Getting to Zero.”

The vision for “Getting to Zero” is three-pronged: Zero new infections. Zero AIDS-related deaths. Zero discrimination.

It’s a flexible vision, one that leaves room for adaptation based on a group’s context and priorities. Djibril Diallo, Director of Global Outreach at UNAIDS, noted that “it’s important to keep this connection with the local realities” rather than impose a one-size-fits-all vision. And Linda Mafu, World AIDS Campaign Africa Director, pointed out that “the choice is there for others to pick a different zero” if it suits them.

What’s your zero?

For me, it’s zero discrimination in treatment. Access to medication and care is an ongoing issue that shouldn’t be. Currently certain populations are receiving HIV treatment, while others aren’t. How can this be justifiable? Treatment availability shouldn’t be based on wealth, or geographical location, or nationality. It shouldn’t be inflected with racism and homophobia and transphobia. People shouldn’t be left to deteriorate and die simply because the powerful refuse to allocate wealth in a more equitable and just way.

Nor should they have to depend on the “financial return” of HIV treatment for survival. Some corporations have realized that providing treatment for workers improves their balance sheet. This kind of situation shouldn’t exist: The value of human lives shouldn’t be decided on the basis of their usefulness to corporate profit.

The problem isn’t that workers are being provided with medication; the problem is that companies are filling the void left by an unjust economic system. A fairer system of taxation and wealth distribution would provide for the necessary financing for HIV treatment for all. One idea that’s gaining support is the financial transaction tax, or Robin Hood tax, which could be a small start to properly funding global health.

So what’s it really going to take to get us to zero? Kellee Terrell over at The Body beat me to answering this question, writing, “Striving for social and economic equality and equal access for all—both negative and positive—is crucial if we are going to end AIDS.” My answer is one word: justice. Justice of all kinds. Economic justice. Justice in housing and income and law. Food, environmental, and climate justice. Justice for indigenous peoples, migrants and refugees, people of colour, people of the Global South. For women, trans and genderqueer people, and LGBTTQ folks. For those who use drugs, are in prison, engage in sex work. As Terrell rightly notes, “We can no longer be content working in our own silos separated from other social justice movements and causes, because in the end all of our work is somehow connected.”

That certain people are left behind when it comes to HIV treatment is not a natural or accidental condition, but a structural one. Rosalia Sciortino, a professor at Mahidol University, observed that “groups are not born vulnerable, but are made vulnerable by societies that marginalise and exploit them.” Structural conditions can be changed, and social change should be a fight for all of us, HIV+ or not.

- Erin

The first World AIDS Day was December 1, 1989 with the theme Our Lives, Our World – Let’s Take Care of Each Other. This shared responsibility theme has been recreated over many years on December 1, with a focus on different members of the world community. World AIDS Day is an opportunity to recognize the many ways in which AIDS challenges the world- medically, socially, emotionally and politically.

I’ve come across three different World AIDS Day messages so far. UK National AIDS Trust says Act Aware, UNAIDS is Getting to Zero and here in Canada, the Canadian AIDS Society urges us to Do Something. Over the next few weeks, we’ll be blogging on the different themes.

Act Aware

UK National AIDS Trust breaks down their awareness theme into personal, social and community building approaches:

• Personal:  Learn about HIV transmission and look after yourself and your sex partners
• Social: Educate yourself and others about HIV and raise funds for HIV services
• Community Building:  Share AIDS Day events you’re having or attending. what events you’re holding or being part of on the day itself

I admire their succinct goals, because awareness spans so many possibilities and prejudices. Under the umbrella of awareness, HIV activists have to combat homophobia, transphobia and many of the “isms”- sexism, racism, and classism among them. Awareness is not only a nation (or world) wide conversation; it’s a personal one with individuals-  from sex partners to politicians who’d rather ignore it. 

A Vancouver awareness campaign is the recently launched It’s Different Now. A tagline of the campaign says “We don’t think you’re special” and explains why routine HIV testing is a great idea for everyone who is sexual – putting them at risk for STIs including HIV. Offering tests to everyone rather than those in “at-risk” groups emphasizes the message that HIV is different than it used to be.

Aware is being in the present – in the bedroom or bar, in the emergency department, at the doctor’s. This World AIDS Day and every day, what’s your version of HIV awareness? 

- Janet

Photos: HIV/AIDS blocks: jscreationzs/ freedigitalphtos.net

Circle of friends: savit keawtavee / freedigitalphtos.net

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