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

In Jacmel, Haiti, a program to prevent violence against women and HIV is generating change not only in the community participants, but in the facilitators as well.

“Let me use myself as an example,” says Marie Denise Casséus, an organizer with Rethinking Power, when asked about changes she’s seen as a result of the program.

“I’ve experienced two big changes. First, I have the capacity to speak with people and share ideas. And second, I have the ability to truly listen, suspend judgment, and be tolerant of others’ ideas.”

For others, the change involves recognizing power they may not have realized they had. A recent “exercise on male privilege evoked a big reaction from the staff,” explains Petit-Frère Christ-Roy, also an organizer with the program.

Haitian organization Limyè Lavi has adapted Rethinking Power from a violence prevention program first pioneered in Uganda called SASA! It is premised on the idea that when individuals analyze power and its ramifications, and are motivated to end violence, they can shift power imbalances in the community.

About 30 community activists—including a substantial number of men—have been training for over a year to become anti-violence leaders in their communities. When they meet, they discuss power and the reality of violence. They come with a lot of questions, which they examine together; the program facilitators don’t give them the answers.

“This is the difference from other organizations,” says Casséus. “This is what draws people.”

“The program creates exchanges on what to do to discover solutions together. Telling people what to do doesn’t work.”

As their understandings of violence change, community activists begin to see how domination affects children, families, neighbours, the community.

For example, says Casséus, if a husband beats his wife with a stick, he misuses energy in finding the stick and then using it. Afterwards, his wife needs to go to the hospital, which requires time and money. When children live in an environment like this, they can’t perform at school; they experience trauma and delinquency, act out on their peers, and become a larger danger for the community. By analyzing violence together, and sharing their own experiences, community activists “see the impact and the use of resources and ask what to do.”

What the community activists do is engage others in conversations about violence. Each person has a network and role in the community, says Christ-Roy. Or, as Casséus puts it, each has a circle of influence, extending to family, friends, community, and society. Community activists commit to two hours of work per week in their community, and they decide what form it will take. They can organize more formal gatherings, or they can chat with people they would see anyway, at the market, at school, at a friend’s home. (None of their time is paid—“their first motivation is to end violence,” says Casséus.)

They use visual materials provided through the program, such as posters or comics, to initiate conversations. One small comic shows a group of people aboard a tap tap (share taxi) who pass an HIV clinic and notice there are more women than men there. They talk about why that may be—is it because women have so many sexual partners? Or is it because women have less power, for example, to say no to sex and to use condoms? The comic ends with a man asking if the point is that women should have all the power, to which the other passengers respond that power needs to be shared.

Idealistic as the comic sounds, it’s not too far from what is actually happening as a result of Rethinking Power. Some women have been able to express for the first time the impact of their husbands’ behaviour on them. By listening to female participants speak about their experiences, some men have received information they couldn’t hear directly from their partners. And some participants have even seen reduced psychological and physical violence in their marriages.

“I’m seeing things I hadn’t seen,” says Christ-Roy. “I want everyone to rethink things too.”

- Erin

This is Part 2 of a series. You can find the first part here:
http://pwn.bc.ca/2012/04/sasa/

*Sigh.*

It was disheartening to read a piece on HIV funding that appeared in Xtra a couple of weeks ago. I could understand author Rob Salerno’s take on the challenging process that many HIV service organizations in Ontario faced recently in applying for funding under a tight deadline. Here in BC we faced it too, and there were supportive phone calls and emails back and forth between groups as we all wrote feverishly to meet said deadline. 

What I found disheartening was Salerno’s comment on one successful funding application. Instead of applauding it, he wrote, “ I’m unconvinced that a province-wide wellness retreat for HIV-positive women …. (is) the best use of limited public funding to fight HIV.”

You know, I’ve heard that before.

Positive Women’s Network has been around for over twenty years, and in that time we’ve had people bluntly ask us why we deserve funding. Why should services for women with HIV get money when so many more men are infected? The answer is this- women get HIV, and are doing so in increasing numbers. Their needs, experiences and lives are different than men’s. A sampling could list gender roles, biological vulnerability, women’s roles in their specific cultures, histories of gender-based violence and sexual assault. Women express the need for women-only services, as we heard over and over when we did a retrospective of our work. One type of organization doesn’t fit all.

We offer a range of services that include weekend retreats for women. These retreats provide health education on HIV, treatments and disease progression; leadership development, and peer support. Women tell us we’ve changed their lives and made a death sentence manageable. Some aren’t sure how they would have gone on if it weren’t for our retreats. If that can be offered to women in other parts of the country, bravo, I say.

Salerno despairs the lack of funding that compromises the work of support organizations, and I get that- there isn’t enough money to go around to everyone. Yet he also recognizes that the organization that successfully received funding has a client base that’s over one third women.

We are fortunate at PWN that many organizations and individuals we’ve worked with over two decades have abandoned their skepticism as they’ve seen the women we work with and the work we do.

HIV funding isn’t endless, as anyone who applies for it knows. But are we in this fight together or what? I’ve believed through the work of many that we are, but obviously there are folks who hold a different opinion.

- Janet

You know the banter that goes back and forth- “What shall I call you?” “Call me anything you want, just don’t call me later to dinner.”

Instead I’m calling you early. 

Friday night may be your “treat night” to go out for dinner or get take out, but why not make it Thursday this week? If your pick your restaurant right, your dining dollars will go to help people living with HIV. 

Dining Out for Life is a North American event that takes place in many cities. Restaurants donate a percentage of their receipts for breakfast, lunch and/ or dinner to AIDS charities. Lower Mainland and Whistler restaurants will direct funds to Friends for Life and A Loving Spoonful. On Vancouver Island, funds will go to AIDS Vancouver Island. And in a few weeks time, on April 26, it will go to the ASK Wellness Centre in Kamloops.

Please help our friends-

Friends for Life is a gem in Vancouver’s West end. Friends for Life provides complementary and alternative health support to people living with HIV and other life-threatening health conditions. They offer a variety of options, from body work to counselling.  If you’re a bingo fan, get your fill weekly and help the organization.

A Loving Spoonful works from this awesome vision: “No one living with AIDS should live with hunger.” They deliver on that through a variety of food programs that include meals and supplements for individuals and families.

AIDS Vancouver Island  offers support and education services in many communities, from Victoria and up the Island to Port Hardy- quite a feat! Faced with complex issues of the many communities they serve, AIDS Vancouver Island has been providing services since 1986.

Folks around Kamloops please don’t forget to mark April 26 on your calendars to benefit ASK Wellness Centre, which offers harm reduction and health management education, as well as crisis funding.

Eat up! (Personally, I’m having breakfast at Joe’s Grill for a start. Best home fries ever.) And hey- sure this post will be stale (!) fast. But you can always give to these organizations at any time, which will be very appreciated.

- Janet 

photo: Morguefile

Heart from morguefile.com

Just a few weeks ago I wrote about my thoughts around disclosing my HIV status. At the time of writing that post I had never had to disclose in intimate relationships because I’ve been single and celibate for 18 years. However, in my general everyday life and interactions with people I am right out there with my status. I speak in the media, I’m the HIV+ director for the Pacific Region on the board of the Canadian AIDS Society, I blog here—I obviously have no qualms when it comes to sharing my experience of living with HIV. I am fearless in the public arena, but when I sit down with the intention of disclosing to someone I care about, I lose all composure.

Most recently I did disclose to someone I care about and it was just as terrifying as I thought it would be, but I survived and our friendship is intact.

It was only our second date, but I felt I needed to tell him up front. I’ve struggled with when to disclose. Do I tell right away or let affections grow and then share the knowledge? I’ve decided I prefer to not build up emotions. I prefer to be up front from the beginning. I’m sure I feel this way because the person who infected me did not tell me, at any point, of his positive status. I’m very conscious of being transparent with people.

In the days leading up to our date and my inevitable disclosure, I was both nervous and excited. I was nervous because, well, do I really need to tell you why? And excited because I was confident that the man I was going to share my truth with would honour it and not judge. Guess what? I did choose wisely. He was calm and compassionate. He was also a little funny at just the right moment. Thank goodness for humour!

We had just finished having a discussion about how frustrating we find people who don’t say what they need to say. Hmmm, perfect opportunity to say what I needed to say. I took a deep breath and told him I needed to tell him something. There was something about me that he needed to know. Then I got really weird. My breathing got fast and shallow, my voice changed pitch and got louder, my eyes filled with tears, and I clutched a pillow to my chest. My emotions were highly charged in that moment.

I just blurted out, “I’ve been celibate for 18 years and I’m HIV positive.” I started babbling, so I stopped myself and allowed space for what I had just said to sit there between us.

His first question was, “How has it affected your health?” Wow. I had chosen wisely. Here was an empathetic person. Thank you. He proceeded to ask me more caring questions, none of which were judgemental. I truly felt safe. Initially it was terrifying and I’m quite sure my apparent anxiety freaked him out somewhat, but the whole experience quickly became yet one more honest conversation with a new friend.

My first disclosure experience could have gone completely differently. But it didn’t. My first disclosure experience has strengthened me and I trust it will only become easier. I’m not particularly eager to disclose again in a dating context, but I will. I’m glad I told him right up front. I’m not entertaining thoughts about what could have happened if I had waited to disclose because what went down between the two of us that day was amazing. Some new synaptic connections have been established; there are few new grooves on my brain.

Have you ever done something that was so completely terrifying that it altered you at a cellular level? I’ve always been a courageous person and the first time I noticed the refining power of moving through fear was when I was 8 years old and I slept out in my tree fort overnight. By myself. In the dark. Just me. Out in a field. Far from home. Did I mention I was all alone? The next morning I was so jazzed by what I had accomplished, and that experience established a pattern of facing my fears in my receptive psyche. I’ve not looked back and I don’t regret being a courageous person.

I understand courage as being open and receptive to life, and engaging with my whole being despite any perceived or real dangers. Being courageous does not include checking out of life. I like the “heart” in the word courage. At the root of courage is coeur, French for heart. I believe we must have an open and receptive heart to be courageous. It can be a vulnerable place to be, but it can also be the sweetest, most transcendent place. I choose to live from my heart. Always.

- Monique

Condoms. Photo from iStock.

News that made me smile this week: an 81-year-old woman who educates seniors about sexual health is getting recognized.

According to the Sun Sentinel, Kate GeMeiner of Florida decided to engage with older populations about sex after learning there was a high incidence of HIV in seniors in the area.

She’s earned the nickname “The Condom Lady” for handing out condoms to seniors. Having had to strategically engage with older adults to get condoms into their hands, I appreciate her creativity in getting reticent seniors to take condoms home.

“I tell them when they write a letter or send a check to their grandkids in college, I tell them to send them a condom,” she said. “That’s how I get them to take the condoms.”

After all, she says, “Seniors who are retired, they have time to have sex.”

How great is that?

It’s especially heart-warming news given the rise in sexually transmitted infections among older populations in Canada and the US. Many seniors are having sex, and many are dating around, but they aren’t necessarily practising safer sex and they may not realize the risks.

It’s a potent reminder that people don’t outgrow the need for sexual health education. And they’re never too old to become the sexual health educators themselves.

- Erin

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.
 

Happy International Women’s Day! Today we honour the work of generations who have made change to make our world what it is today. And today we celebrate the work we’re all doing to make things better for the women of tomorrow.  

There is still a lot to take on- gender violence, equal rights, cultural "norms" that place girls and women behind men. Voting rights, control of money, property ownership, health care, and access to birth control options are all works in progress. These are just a few of the issues we have to take on. There’s a lot of work in progress.

And that is amazing. 

Women often face ongoing and frequently brutal adversity, but that doesn’t stop us. Women are resilient, resourceful, and passionate. 

Happy International Women’s Day to all women. To our girls- we’re working on a better future for you. 

Together. 

Janet

Cross-posted at You Should Know

photo: MorgueFile
 

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 

A few weeks ago, we had a workshop on diabetes here at Positive Women’s Network. Sandra from Vancouver Native Health Society, who coordinates the ADAPT (Aboriginal Diabetes Awareness Prevention and Teaching) program, came over to field questions about diabetes. PWN members had a lot of to ask about diabetes prevention for their children and themselves. Some women already have diabetes and wanted to know how to slow down the disease.

Diabetes = Blood Syrup

Diabetes, Sandra explained, is caused by an excess of sugar in the blood, which creates a syrup that damages small blood vessels. This’s why unchecked diabetes can lead to numbness or tingling in the feet, blurry vision or blindness, kidney problems, amputations, nerve damage, and sexual dysfunction.

Who’s At Risk? More Than You Think

Diabetes rates in the Aboriginal community are three to five times the national rate, and they’re also higher for Black, Southeast Asian, and Latin populations. Heart disease, Sandra said, “goes hand in hand with diabetes.” Smoking, being overweight, and having high blood pressure are risk factors. Those over 40 years are also more at risk for diabetes.

That was all straightforward to me. Then I learned that certain anti-psychotic medications and particular HIV medications (the ones that lead to extra fat around the middle), as well as schizophrenia, can put a person at risk. So can gestational diabetes or having a baby over 9 pounds.

Signs and Symptoms

Increased urination. Increased thirst. Tiredness. Weight loss.

Easy Nutrition Tips

How to prevent and manage diabetes? The answer of course is exercise and above all nutritious eating. In the past, some doctors had urged people with HIV to eat high-calorie foods and pack on weight. But with advances in treatment, and the general health that people with HIV can now attain, that’s not necessary and in fact can put people with HIV at risk for diabetes.

Sandra suggested eating every four to six hours, to keep the body’s metabolism working. She explained that the body digests different types of food at different rates, so it’s best to eat a variety of food types in a meal. And what should we be eating the most of? Veggies! Here’s a formula that’s easy to remember: Half your plate should be made up of vegetables. One quarter should be starch (the size of your fist) and one quarter should be protein (the size of your palm).

And stay away from the juice. A glass of juice, Sandra said, is equivalent to consuming several pieces of fruit, which means you’re getting a load of sugar but none of the fibre.

And what about treats that contain sugar substitutes? Diet soda? Are those okay?

No way. According to Sandra, sugar substitutes actually confuse the body and mess up its metabolism. Unfortunately, she said, “there’s no such thing as diet junk.”

- Erin