Announcement from the Canadian HIV/AIDS Legal Network 

Women's voices have rarely been heard on this important issue. What happens if a woman does not disclose her HIV-positive status to a sexual partner? How does criminalization impact HIV-positive women in Canada, who are trying to live their lives in the shadow of stigma and fear? Does the law actually protect women's health? How do women feel about their experience with the criminal law with respect to HIV non-disclosure?

Positive Women: Exposing Injustice takes the audience into the hearts and minds of four positive women bravely speaking out on this important issue.

Buy tickets to the world premier in Toronto, Canada here 

June 14 at 6:30 p.m., Royal Ontario Museum/

It really does seem profoundly unfair: you've contracted HIV and have begun treatment; you may have sailed through to this point without too many problems, or you may have already been to hell and back dealing with secondary infections and psychological problems. Then, after you've been on the meds for some time, again you may have noticed no significant difference in your life, or may have suffered every side effect on the list. Eventually, for most people the situation tends to settle down and you learn to live with HIV as an irritating but constant companion (apologies to those for whom life never seems to get better). Then, seemingly out of nowhere, you begin to feel strange, new and unpleasant symptoms. After some time these are diagnosed as neuropathy (peripheral or otherwise) and your life is changed forever. For some people that can lead to annoying but ultimately not very serious symptoms and for others, the end result is invalidity and a life of pain.

Most people fall somewhere in between but you'd be justified in thinking that HIV was a big enough problem ... enough already! Neuropathy catches you unawares just when you thought you'd seen it all and feels very much like a sting in the tail.

So why has it become such a significant by-product of HIV?

First of all, not only HIV patients get neuropathy; diabetics and cancer patients who have undergone chemotherapy are statistically more likely to be confronted with neuropathic symptoms but HIV-positive people do form a significant percentage of all neuropathy sufferers. As has been mentioned before, between 30% and 40% fall victim to various degrees of neuropathy and that is a conservative estimate. The figures are growing year by year -- mainly because people with HIV are living longer and therefore by definition getting older, and neuropathy is statistically more likely to strike the older person although by no means exclusively.

So why are so many HIV positive people getting neuropathy?

For many years, it was thought that the primary reason had to do with certain HIV meds but thanks to extensive studies, it is now being proved that the virus itself can be a primary cause, which certainly muddies the waters. Besides that, HIV- positive people can develop neuropathic problems from Lyme disease, shingles, overdosing vitamins, septicaemia after a serious injury, physical trauma and infections from various other bacteria. All these things are lumped together by the medical establishment under the name "Infectious neuropathy," and can theoretically be treated by curing the cause. Unfortunately, it doesn't work that way: the cause may be treated or even cured but the neuropathy almost always remains, though in the best-case scenario, not getting any worse.

Besides the above, a higher HIV viral load (and even higher CD4-cell numbers), diabetes and heavy alcohol use also increase the chances. Other risk factors are the use of cocaine or amphetamines, cancer treatments, thyroid disease, or deficiency of vitamin B12 or vitamin E. Bear in mind, there are over a hundred possible causes of neuropathy and almost as many variations of the disease itself -- there's no black and white when it comes to neuropathy!

Looking at the various causes that most apply to HIV-positive people, we can start with the most obvious -- the anti-retroviral drugs. We appreciate that these keep us alive but as we all know, there are often consequences in the form of potential side effects. The guilty suspects concerning neuropathy are Nucleoside reverse transcriptase inhibitors' (NRTIs), or, as they are often called, the "d-drugs," (ddI -- didanosine, Videx; ddC -- zalcitabine, Hivid; d4T -- stavudine, Zerit). However, it is important here to note that, of the 'd-drugs', ddC has been removed as an option and recently, d4T/stavudine/Zerit is only prescribed in unusual situations (for instance, if there is no alternative available, as in many third world countries).

Other NRTIs (3TC [Epivir] ; AZT [Retrovir] and abacavir [Ziagen], together with the non-nucleoside reverse transcriptase inhibitors (NNRTIs) and the Protease inhibitors, are less well known for bringing on neuropathic complaints but modern combinations used to fight resistance in the virus, combined with other medications for other problems, can and do throw up unexpected side effects and neuropathy is certainly one of them. Newer research is also indicating that even the more modern HIV meds may have a role to play in bringing on neuropathy -- it's not very encouraging.

Stopping Offending Medications

If the neuropathy is thought to be caused by an HIV drug or drugs, the patient is frequently advised to stop using that particular medication but your options may be limited because of the increased chance of resistance caused by switching drugs and the number of drugs still available to you. Apart from that, as mentioned before, stopping the offending medication doesn't mean you are free from neuropathy; it just means it shouldn't get any worse!

For HIV-positive people, it's also possible that neuropathy can emerge as a result of the natural progression of the illness -- the virus itself. HIV can attack the nervous system directly with all the well-known consequences as a result but establishing if the cause of neuropathy lies with either the virus, or the medication, or both, is practically impossible because by the time you're doing that sort of research, you're already suffering from the condition.

The statistics do show that older (but also taller!) HIV patients are much more likely to develop neuropathy but that may be logical and in 2011 we're really still only thirty years into the disease. There's a lot still to learn but unfortunately research is still relatively spasmodic.

After reading all of this, reaching for the nearest available bottle and a stiff drink won't really help! Alcohol abuse can cause its own form of neuropathy!!

Much more information about Neuropathy and HIV can be found on my website here and my blog here.

Dave also writes for The Body.com here, where this article first appeared.

Bio: English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving here is the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a website and blog where practical information, hints, tips and experiences for patients could be gathered together in one place.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

Next week Dave explains  "How Neuropathy Is Currently Treated" .

This article first appeared in The Positive Side, a publication of CATIE. 

Une version française est disponible ici. 

MY NAME is Mashkiki-waabika-inini (Medicine Circle of Stones Man); my given name is Ron Horsefall. I am from Pasqua First Nation, Saskatchewan. I am 45 years old and currently reside in Vancouver, BC. The first time I was tested for HIV was December 1996 and I was diagnosed with AIDS. At the time I was living in a room in a single-occupancy hotel in the Downtown Eastside of Vancouver. I had shingles, which was what prompted me to get tested.

After my diagnosis, I was put on HIV meds; AZT was one of them. For about four years, I was on and off meds: The times when I was not drinking were the times I was able to take the meds. My health finally made a turn for the better when I sobered up in 2000. Now my health is good: I’m on therapy, my viral load is undetectable and my CD4 count is 400.

I am a survivor of a residential school. I started attending when I was five years old and I was abused before and while at the school. After leaving, I wanted to distance myself from everything that had happened there and I discovered the best way to do that was to use drugs and alcohol. My addictions led me to ugly places and to a life of high-risk behaviour. I just didn’t care about myself and, more fundamentally, I didn’t love myself.

Bottoming out

In retrospect, I see HIV as a gift — it helped me hit bottom. Trying to manage my addictions and my health at the same time was not working. So I had a decision to make: Get sober and live or keep using and die. After 23 years of drinking and drugging, I reached out. I joined Alcoholics Anonymous, found a drug and alcohol counsellor and eventually saw a psychologist. These were the hardest things I had ever done up to that point.

HIV and the drug and alcohol use were symptoms of more deep-seated problems in my life. Under the surface were some very serious issues — issues that I’ve had to deal with over the years. Addressing them meant turning inward to look at myself and my life and putting away the blame and self-pity I was feeling. I became aware of why I used and why I became HIV positive. It is a very hard road to walk, and I didn’t walk it alone; I had help from a great many people. It was the journey from my head to my heart.

Eventually, doing my own inner work and practicing a healthier lifestyle brought me to a place in my life where I could give back what had been so freely given to me. From 2004 to 2007, I worked with two Aboriginal AIDS service organizations: Healing Our Spirit here in Vancouver and All Nations Hope AIDS Network in Regina, Saskatchewan. I spoke publicly about my life with HIV — something I still do on occasion — and developed workshops for Aboriginal people with HIV. It gave me joy to help people on their own journeys, whether they were HIV positive or not.

The residential school system disconnected me from my culture and spirituality. I knew I was First Nation; however, I didn’t know what that meant. As part of my healing, I embarked on another journey, this time to reclaim my culture and spirituality — my birthright. As I learned about my identity, I became interested in powwow dancing. I decided to make my own regalia (dance outfit) and this required beadwork. Thus began my artistry with beads. I am a self-taught bead worker — I learn from books, videos and the Internet.

Phoenix rising

I have always been creative; I took art classes throughout high school and at university. For years, low self-esteem and a sense of low self-worth prevented me from pursuing my dream as an artist and I listened to people who said it was hard to make it as an artist. More importantly, I listened to myself when I said, “I’m not good enough.”

However, as I walked my journey I came to see that I was good enough and that I did have potential. Two and a half years ago, I made a commitment to my art and began selling it at arts and crafts fairs. Before that, I had done commissioned work for friends and friends of friends. Then, in September 2009, I learned that the Carnegie Community Centre — a drop-in centre serving the people of the Downtown Eastside — had an arts grant program that was funded by the Vancouver Foundation, Canada’s largest community foundation. I applied and, surprisingly, I was selected. Not only was I very excited, I was also now accountable for my artwork. I had a body of work to produce and had to answer to someone other than myself for it. I had obligations!

The project included a series of beaded circular wooden and metal containers ranging from 1½ to 7 inches in height. I chose the name “Out of the Ashes,” shortened from “Phoenix Rising Out of the Ashes,” to represent how I rose out of darkness and into the light. I dedicated my project to my niece, Lorraine Horsefall, who died of AIDS in 2006. As part of the program, all recipients exhibit their work, and so last summer I had my first art show. Thanks to this experience, I now call myself an artist, without any reservations.

Creating is a spiritual process for me and what comes out is a tapestry of my life. When I sit still and bead, “me” catches up with “me” — feelings from the past begin to flow and they go into each piece I create. As I continue to walk in and with the Light and to expand spiritually, my work expands along with me.

Photo: Tiffany Cooper

A sure fire way to help beat the summer heat is to sport shorts. We all tend to wear less during the summer months whether it is for added comfort or just to bring a little sexy back. After all, what better way to flaunt all that gym time, exercise and/or great tan than by exposing those sexy gams? 

Once reserved exclusively for sports and casual attire, shorts have expanded into other realms of one’s wardrobe needs. Case in point: designers have teamed up Bermuda shorts with blazers over the last few summers, giving you dressier options to integrate into your wardrobe as well. Depending on your work environment and/or social obligations, these cuffed or uncuffed shorts, which usually end about an inch above the knee, can be an acceptable alternative to trousers. They also create a new and easy option for morphing into an “after five” look. 

Besides Bermuda shorts, Cargo Shorts (which include patch pockets down the sides of the legs), and ¾ length trousers, there are two new options to consider this season. Short shorts available in a wide array of solid colors work best with looser fitting tops or knits keeping proportions in check. The length varies from a few inches below your inseam to the widest part of your thighs (Quadriceps).

Fabrics range from colored denim to exotic. Silk is a new alternative but be careful that you don’t look like you are just wearing your boxer shorts and were in a mad rush to get dressed.

Elongated shorts that are cut a few inches below the knee flatter the trend in pattern play that is so popular this season. Tropical prints tend to look best with this style and can be fitted to the body if not semi tapered. The most flattering end point would be the widest part of your calves, making your legs appear larger than they actually are. This style can also add height to your frame. 

Fabric options vary pending the style of shorts. Seersucker, which is a textured cotton and/or blend, is the most comfortable as it creates an air pocket between your skin and the garment and feels as close to being nude as you can possibly get. They are the best option, especially for those of us who live in humid climates. Linen is also a cool choice but best for casual looks due to the crumpled affect it creates. Also, look for other machine friendly options to keep your summer free of trips to the Drycleaners.

Exotic prints, checks and patterns are abundant in all styles and again keep your proportions in mind as to select the most flattering and appropriate looks best suited to you. 

Sandals also play an integral role in complimenting your selection of shorts, adding to your cool quota. Desert boots are a new option this season and are worthy of consideration, especially ones made in suede and in a vibrant color. Sandals or Shoes that are worn without socks create an elongated leg that can come in handy if you are vertically challenged. Adding socks with your shoes or boots when wearing shorts creates a more casual look that may add to your machismo. Socks with sandals is still a huge no-no and falls into the old stereotype of looking homely or completely out of touch. 

Striking the perfect balance with your lifestyle, age, proportions and comfort zone will take some added experimentation due to the variety of styles available this season. But once you find the right styles best suited to your needs, you will breeze through the summer in a selection of shorts guaranteed to keep you cool and well dressed for any occasion.

And that is the end to this short story.

You can’t help but like Francisco Ibáñez-Carrasco.  He is a handsome silvered-haired dynamo, a Latino through and through, who is enthusiastic about everything he touches, even about being alive.  Clearly Francisco loves life and that comes through in the interview which follows.

Not that his life has been an easy one.  Born in Chile forty-eight years ago, he was,  according to his 2011 profile in CATIE’s The Positive Side “raised by a poor, single mother who earned her living cleaning rich people’s houses. As a child he was molested by Catholic priests, and as a teenager he traded sex for cash. “I get along with people with an edge, with difficult lives,” he says, “because I see myself reflected in them.”"

Francisco came to Canada in 1985; within months he was diagnosed with HIV.  Says CATIE “Most of the friends he arrived with in Vancouver moved on to New York City, which was “kind of a gay Mecca in our imaginations,” he says. “We were all young gay men who didn’t know anything about AIDS. We all got infected and they all died. Some of them died of HIV-related complications; some of them died undocumented. So, yeah, there’s a trail of dead people behind me, whom I honour, of course, all the time.”"

Francisco himself was diagnosed with Kaposi’s  Sarcoma back then, its  spots covering most of his body. He saw first one and then a second partner die of AIDS-related complications. But like many others he was saved from the jaws of death by the protease inhibitors which surfaced in 1996.

Meanwhile he had been pursuing higher education at B.C.’s Simon Fraser University where he eventually earned his Ph. D in 1999 – one of the first Canadians with HIV to earn a doctoral degree. His focus since has been on research on HIV and rehabilitation and, latterly, in the training of new researchers in the field of HIV. Resident at the OHTN (Ontario HIV Treatment Network) in Toronto, he has been Program Manager of Universities Without Walls.  Just recently he has been appointed the OHTN’s Director of Education and Training.

As you’ll see, Francisco is a lively and engaging interview subject.  For this interview I asked him the questions off camera with those questions edited out, allowing Francisco’s responses to shine through.

Videography by Guy McLoughlin

Photo by Bob Leahy

As I re-entered the world of singledom, after the South African, some things became disturbingly clear

I realized that I have a post break-up habit.  Some people get a drastic hair cut. Some people gain or even lose 15 lbs. For me, after a relationship ends I tend to become a true believer in free love.   During which I made good use of all of my gentleman’s socializing networks. I could be found chatting with guys at the gym, at work, at home.  I would even travel the length of Manhattan to partake in an extra long lunch break. Just to clarify, this was NOT my prior lunch date.  Within the midst of my newly rejuvenated spurt of free love, there were a couple observations that shocked and confused me. 

Way before the South African existed in my word, I chatted with this handsome Brooklyn Boy. We met on OkCupid and we tried to set up a really real date on a couple different occasions. Unfortunately it never really worked out, so we both just gave up. While on sowing my newly found wild oats, I came across the same Brooklyn Boy, on a slightly different website, Manhunt. We chatted again and this time we were determined finally to make our date happen. Since we were chatting on a site that had the byline of “Get on, Get off” I thought I should come clean with my status. He quickly became excited and he said, “So am I, now you can fuck me raw!” Clearly, I should’ve given him a different nickname with the initials B. B. I politely declined and then literally got off. 

There was another guy, who I chatted with for quite some time.  We talked about everyday random stuff and not just about a mutual love for our freedoms.  Finally, we decided to finally set up a time to meet. Again, because we didn’t meet on Manhunt and I wasn’t sure what his intentions were, I told him my status and lo-and-behold he said he was also poz. Ok, great. There should be no weirdness. Oh, was I wrong. I also told him that I always play safe and he proceeded to tell me that he never uses protection and he basically apologized saying that he hates “rubbers” and he would never have sex with someone who insisted on using them. 

I was baffled. I know I talk a lot about my disappointment and frustration with negative guys who turn me down because of my status, now I was turned down by a positive guy who didn’t date me because I always use a condom! I felt like I had just stepped into some bizzaro universe. 

Now, don’t get me wrong, I completely understand the allure of this particular practice, especially with another positive person.  But forgeting  the personal risk factors involved, I think people tend to forget that there are other STDs out there. I have a hard enough time expressing my status to a prospective date; imagine adding Chlamydia, Gonorrhea, Herpes, or Syphilis to the mix! 

Another thing that completely perplexed me was the amount of people that ask me if I "parTy". I am not that naïve that I am completely unaware of this practice and on prior occasions I have been asked if I "parTy and play". And I would be remiss not to mention I did try meth once. Luckily for me the only addictive substance my body will let me consume is chocolate.  But day after day, I found myself bombarded with that question, “Do you parTy?” No, “Hello.” No, “How are you?” Just “Do you parTy?”

I would respond: “Why yes I do! When my niece turned five, you should have seen me tearing up that Disney karaoke.” 

I love my oral fixations too much to give myself meth mouth and I love my penis way too much to swing it around at every Tom, Dick, and Harry without any protection. You can call me a fuddy-duddy, but I still head the advice given to me Mr. Jiminy Cricket and I always let my conscience by my guide.