Issue 72 H MAY 09
YOUNG, GAY, POSITIVEâ€Ś
WHERE DO I FIND SUPPORT?
The Newsletter for HIV+ people, their carers and supporters New Zealand ISSN 1170-2354
H Regional roundup: How support networks are coping with the recession H Positive Women: Treat yourself right
EN ST E U Q S INEMA C Y T I C 4 May S KY m o r f e l D Tickets on sa N A L K C AU 1 june – OUNT M A R 4 May 21 may A P m o r f e l ON Tickets on sa T G N I L STER E WEL y – 7 june C R O ON W T N May E 8 G 1 28 ma E R m o r sale f H n o C s R t e U k c ISTCH e Ti
CHR 4 – 10 jun
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Issue 72 h May 2009
Editorial Co-editor Jack Dragicevich wants to spark debate.......................................................... 3 Local News News from around Aotearoa.................................................................................................4.5 Wellness Fund Annual Report.................................................................................................... 6
Current and Future Growth Survey Kate Bukowski on Positive Healthâ€™s survey........................................................................... 7 International News News from around the Globe............................................................................................ 8-10 Feature: Young, Gay, Positive. Chris Banks talks to Rhys Jones....................................................................................... 11-14 Opinion Michael Stevens..................................................................................................................... 15-16 Regional Roundup..................................................................................................................17-19
Greater Involvement: an HIV Positive Reference Group.....................................20-21 The Positive Menâ€™s Retreat Jack Dragicevich.................................................................................................................. 22-23 Positive Women / Straight Arrows Events................................................................ 24-25 HIV Medications and Heart Problems........................................................................ 26-27 Positive Women A new resource.................................................................................................................... 28-29
Obituary Remembering Aaron McDonald.................................................................................... 30-31 Quotes.............................................................................................................................................. 32 Film Review: Sex Positive (2008)
Collective Thinking, the Newsletter for HIV+ people, their carers and supporters, is published quarterly, by the New Zealand AIDS Foundation (NZAF).
Co-Editors: Jack Dragicevich, Chris Banks The NZAF registered office is located at: 31-35 Hargreaves St., Ponsonby. PO Box 6663 Wellesley St. Auckland 1141. Telephone (09) 303-3124 Ideas expressed, and information given here are not necessarily representative of the opinions, nor endorsed by, the New Zealand AIDS Foundation, nor the Board of Editors. Publication of the name or photograph or likeness of any person in Collective Thinking is not to be construed as any indication of sexual orientation, or presence in their body of organisms capable of causing illness. Any similarity between individuals named or described in fiction articles and actual person living is purely coincidental. Publication of any letters, articles, photographs is at the discretion of the publishers and the right is reserved to withhold, alter, edit and comment on any article, letter, advertisement published. The list of subscribers is confidential and is not, sold, rented or leased out to anyone at any time.
Issue 72 h May 2009
LETTER FROM THE EDITOR Dear Readers, Collective Thinking as a publication has changed significantly since its inception: John Catt’s enormous energy and dedication over many years transformed it from being a simple newsletter into a fully-fledged magazine. When Aaron MacDonald took over as editor several years ago, he set out to revamp and rejuvenate the entire production, giving it a bold, fresh, up to date tabloid-sized appearance. It was less bulky and easier to carry, with photographs and graphics, printed on glossy, high quality paper, and with cutting-edge story content. Aaron’s tenure as editor was marked by a remarkable degree of professionalism and journalistic integrity. The energy which Aaron poured into the production of Collective Thinking, even during periods of increasing illness, is a tribute to the remarkable man that he was. Sadly Aaron passed away earlier this year, and an obituary as a tribute to him can be found in this issue on pages 30-31. In many ways Collective Thinking was Aaron’s baby. He has left a large and difficult void to fill. He will be sadly missed. Yet Chris Banks, who worked alongside Aaron for some time, has ably stepped into the breach and kept producing the magazine when Aaron was too ill to do so. Chris has been Editor of Collective Thinking while the New Zealand AIDS Foundation has worked to bring a new editorial team on board. For the next year Chris will stay on as Editor and a Co-editor has been appointed to work alongside him, on an issue-byissue basis, until long-term decisions are made about the publication’s future. At this juncture it seems most appropriate to introduce myself to you. My name is Jack Dragicevich. I am an HIV positive man, with nearly ten years of work experience in the area of HIV peer support and education. I was a former compiler, producer and editor of the Positively Positive magazine and represented Body Positive Incorporated (the Auckland based HIV positive peer support organisation) at two global HIV/AIDS conferences, first at Durban in South Africa and then at Barcelona in Spain. Together with Chris Banks, I will be one of the Co-editors of this issue of Collective Thinking. During my tenure as Co-editor I want to encourage greater participation from our readers and in particular from HIV positive people (irrespective of their age, gender, ethnicity, religion or sexual orientation) to write articles, to tell us your story, to give us feedback on what types of stories you would like to see in future issues of Collective Thinking, as well as constructive criticism (please try to be positive) about the issues we include. I want Collective Thinking to be more than just an issues or information-based magazine; I want it to reflect the diversity that exists in the HIV positive community; for it to spark debate and for its readers to be able to contribute, if they so wish, in its production. Tell us what you think, send your feedback to the below email: Jack Dragicevich Co-editor email@example.com
HIV diagnoses in 2008 highest ever The AIDS Epidemiology Group at the University of Otago has reported that the 184 new diagnoses in 2008 is the highest ever recorded in New Zealand. These figures are primarily due to an increase among gay and bisexual men who remain the group most at risk for HIV transmission in New Zealand and who accounted for 91 of the new diagnoses. “The figures for 2008 show that the HIV epidemic in New Zealand is very real. HIV is a highly dangerous, yet easily preventable disease,” said Rachael Le Mesurier, Executive Director of the New Zealand AIDS Foundation. “We urge gay and bisexual men not to be complacent about protecting themselves and their partners from HIV.” HIV diagnoses in New Zealand among men who have sex with men have risen 89% over the period 2000-6, similar to trends being experienced in Europe. In the latest issue of AIDS New Zealand, the AIDS Epidemiology Group noted “it is highly likely that new infections are continuing to occur in New Zealand among MSM [men who have sex with men] at a relatively high rate. As well as safer sex practices, HIV testing, and prevention and treatment of other sexually transmitted infections are important to reduce the spread of HIV through this community.” Of the 61 heterosexually acquired infections diagnosed in 2008, the majority were among men and women infected in overseas countries where HIV prevalence is high. The remaining diagnoses included two where infection was acquired through injecting drug use, two from a blood transfusion (overseas), and four children through mother-to-child transmission (three overseas and one in New Zealand).
AIDS Foundation’s Hamilton centre in new location
The New Zealand AIDS Foundation’s office in Hamilton, Te Puawaitanga o te Ora, has moved to new premises at Reid House on Alexandra Street. The new office shares premises with Waikato Queer Youth and registered counsellors. Rapid HIV and syphilis testing services will continue, as will care and support services to people living with and affected by HIV, including friends and whanau in the Waikato region. “While our former premises on Ohaupo Road were wonderful, the District Health Board wanted to expand into that space and they weren’t able to renew our lease,” says Eamonn Smythe, the Foundation’s Director of Positive Health Services. “We’re delighted with our new offices. We’re now more central, which makes it easier for people to access our services.” The centre’s contact details are as follows: Suite 5, Reid House, 115 Alexandra Street, Hamilton. Phone (07) 838 3557. Fax (07) 838 3514. Email: firstname.lastname@example.org
Peer support organisations struggle for funding in recession The global recession has taken its toll on two of New Zealand’s major HIV positive peer support organisations, Body Positive and Positive Women, who have been forced to make staffing and service cuts for 2009. Both organisations rely on funding bodies such as the ASB Community Trust, whose pool of available grant funds have been diminished by the recession. Body Positive has made one key staff member redundant and shelved plans for a community respite centre providing services similar to Herne Bay House, which was closed and sold by the Auckland City Mission in 2004. Jane Bruning is back to being Positive Women’s sole paid employee, after funding cuts saw the departure of part-time administration assistant Jane Roskruge. The cuts couldn’t have come at a more awkward time for the organisation, which has seen an increase in demand for its services following its successful nationwide anti-stigma campaign. “We’ve grown in the last four years, and there’s a lot more work to do,” Bruning told Collective Thinking. “We had hoped this year to run a couples retreat, to cater for women in relationships, but we’re struggling to get funding even for our women’s retreats. It’s mostly wages and admin costs we can’t cover, and without those we can’t do any projects. “We’ve had calls from organisations we’ve applied to for funding warning us to reduce our expectations.” If you would like to learn more about Positive Women or Body Positive, please visit their respective websites: www.positivewomen.org.nz and www.bodypositive.org.nz.
Issue 72 h May 2009
Burnett Centre opens sexual health clinic for men The New Zealand AIDS Foundation has joined with Auckland Sexual Health Services to provide a wide range of sexual health care and testing for men at the NZAF’s Burnett Centre in Ponsonby. The weekly clinics provide HIV, syphilis, hepatitis A and hepatitis B screening and care services at no cost. Wayne Otter, Burnett Centre Regional Manager described the new services as a one-stop men’s sexual health shop. “Gay and bisexual men in particular have an increased risk of sexually transmitted infections (STIs) because even if they use condoms for penetrative sex they can still transmit STIs through oral sex,” he says. An experienced sexual health clinician is available for sexual health consultations. Men are encouraged to attend for regular check ups, if they feel they may have been at risk, or have any questions or concerns about their sexual health. “STI symptoms aren’t always obvious and some infections like syphilis dramatically increase the chances of transmitting HIV. We also encourage men living with HIV to get tested because it is particularly important that their immune system is not placed under the additional pressure of fighting new STIs,” Otter says. The Men’s Sexual Health Clinics will complement the existing testing, counselling, psychotherapy and support services offered at the Burnett Centre to all those affected by HIV. To book an appointment at the Men’s Sexual Health Clinic call (09) 309 5560. The clinic will be open at Level 2, 35 Hargreaves Street, Ponsonby, Auckland on Monday evenings from 5-8pm and all services are free of charge.
HIV Treatments Update Seminar Body Positive is hosting a one-day seminar for HIV medicine and treatments information on Wednesday 27 May at University of Otago House, 385 Queen St, Auckland. The issues to be covered are diverse, including an overview of HIV/AIDS epidemiology in New Zealand today, opportunistic infections, starting and stopping treatment, long term toxicities resulting from medication, and mental health issues. There will be a group interactive session around side effects, interactions and adverse reactions from medication, and a panel discussion highlighting the issues facing diverse communities. Guest speakers include Professor Bruce Brew, Head of Neurology at the University of New South Wales, infectious disease specialists Richard Meech, Mark Thomas and Rod Ellis Pegler, and Nigel Dickson from the AIDS Epidemiology Group at Otago University. For information about registering, please visit the Body Positive website at www.bodypositive.org.nz, phone (09) 309 3989 or 0800 HIV LINE.
Human rights leader Richard Tankersley to receive NZAF Life Membership New Zealand’s first takatapui Human Rights Commissioner, Richard Tankersley, is to be awarded a New Zealand AIDS Foundation (NZAF) Life Membership in May. Richard Tankersley is Kai Tahu and lives in Christchurch, Te Wai Pounamu. He has consistently supported the NZAF’s mission since the late 1980s. “Richard Tankersley’s commitment to takatapui tane, human rights and the mission of the NZAF has contributed tremendously to the ongoing development of an HIV-resilient New Zealand. His vision, experience and compassion have spanned more than twenty years,” says Mark Henrickson, NZAF Board Chair. From his early days as a volunteer with the Christchurch Support Network, Richard was employed part-time for the NZAF as a Prevention Projects Coordinator in 1991-2. After funding cuts disestablished the position, Richard continued to support the NZAF in a voluntary capacity. He has continued to be a valued supporter of the NZAF’s regional work in the South Island, and of public events such as the AIDS Memorial Quilt project and the International AIDS Candlelight Memorial, offering a tangata whenua perspective. He has also contributed to the NZAF’s national work, forming a key part of constitutional working groups on the NZAF’s Trust Board’s responsiveness to Maori. The Life Membership Award presentation is being developed in consultation with Richard’s whanau and elders and will be presented to Richard in Christchurch in May.
WELLNESS FUND ANNUAL REPORT
The New Zealand AIDS Foundations’ Wellness Fund was relaunched on 1 April 2008 and the revised fund increased the annual amount available from $500 to $750. It also included two new sections: a travel grant of up to $500 and a special Fund for up to $3000 to address costly issues that affected the long-term health and wellbeing of positive people. The majority of applications in the later section were to address dental work and to access Aquamid, to compensate for the effects of facial lipoatyrophy, a serious side effect with some antiretroviral medications and in particular for those who have been on treatments for a significant period. The funds which had accumulated over time were very well accessed during the last year, and many positive people from across the country have seen significant benefits. The financial breakdown of each section of this Fund until March 31st 2009 follows: H Small Grant’s funded; $42,426.00 H Travel Grants funded; $10,618.00 H Special Grants funded; $103,580.00 H A total of $156,624.00 for 166 people (average $943) Total Grants funded in the Northern (Auckland) Region came to $101,801.00 this covered applications from 68 men, five women and two children. Total Grants funded in the Midland (Waikato) Region came to $12,803.00 this covered applications from 19 men and five women. Total Grants funded in the Central (Wellington) Region came to $25,002.00 this covered applications from 19 men and ten Women. Total Grants funded in the South Island Christchurch Region came to $17,018.00 this covered applications from 34 men and four Women. Owing to excellent uptake over the last 12 months, the monies remaining in the fund now total $30,000. In order to ensure that these monies are best utilised in the coming months, and after consultation with all the New Zealand Peer support organisations (PLWHA), a decision was reached to return to having the small grants from 1 April at $500 per annum cap.
Influenza immunisation is your best defence
ealth officials urge people living with HIV & AIDS to get their free influenza immunisation as soon as possible to improve their defence against this serious illness. This year’s seasonal influenza immunisation campaign began in March and the National Influenza Strategy Group (NISG) is advising people to get their immunisation from their family doctor or nurse before winter. Influenza immunisation is free for New Zealanders at high risk of complications - people aged 65 and over and people of any age including children, with long-term health conditions such as diabetes, asthma, heart disease, stroke, respiratory disease, kidney disease, immune suppression and most cancers. It is available free to these groups until June 30. Virologist and NISG spokesperson, Dr Lance Jennings says the influenza virus changes each year so annual immunisation is essential for best protection. “Influenza immunisation is particularly important for those who are most vulnerable and at high risk of complications,” says Dr Jennings. “For these people, influenza can be a serious and potentially fatal disease.” Between 10 and 20 per cent of the population are infected with influenza each year. In 2008, 474 New Zealanders were admitted to hospital for influenza. This year’s influenza vaccine offers protection against a Brisbane H3N2-like strain, a Brisbane H1N1-like strain and a B strain. The “Brisbane strains” of influenza killed six children in Australia last year, says Dr Jennings. “Immunisation is our best protection. Being fit, active and healthy does not protect you against influenza – it’s easily spread and anyone can catch it,” he explains.
Background Information on Influenza: H Influenza and ‘the Flu’ are the same thing. It is a potentially serious viral infection – much worse than a cold. The illness can last for weeks, often confines you to bed and can carry the risk of severe complications or death. H The influenza vaccine cannot give you influenza as the vaccine does not contain any live viruses. H The influenza virus changes each year so it’s important that people are immunised annually to gain protection from the strains most likely to circulate. H Even when you are immunised you should practise good hygiene to prevent the spread of the infection. You should cover your mouth with a disposable tissue when coughing or sneezing and then wash your hands. You should always stay at home when sick. For further information go to www.fightflu.co.nz or www.moh.govt.nz or call 0800 IMMUNE 0800 466 863.
Issue 72 h May 2009
By Kate Bukowski
The Positive Health Service’s current and future growth survey In December 2008, 59 positive people from around New Zealand responded to a New Zealand AIDS Foundation’s current and future growth survey. Of these, 48 people completed the hard copy questionnaire and 11 utilised the online option. The survey was developed in response to the needs highlighted in HIV Future NZ 2. Of the 59 people completed the questionnaire, just over three quarters of participants were male and 20% of respondents were female. 63% of respondents identified as gay, 21% identified as heterosexual, 6% as bisexual, 3% as takatapui and 3% as queer. The respondents varied in age and ethnicity but the majority (86%) were over 31 years of age. Respondents were predominantly Pakeha (73%), 11% were Maori, 7% were Asian, 5% were Pacific people and 3% were African. They were spread throughout New Zealand, with the highest proportion of respondents were from Auckland (33%) followed by Wellington (30%), while Christchurch and Hamilton had 12% respectively. Participants were encouraged to complete the survey by NZAF Positive Health Services nationally. Clinical nurse specialists, HIV support networks were informed also encouraged people to complete it. The NZAF also ran specific meetings around the country for HIV positive people in Auckland, with participants from Hamilton, Wellington and Christchurch. Forty percent of respondents described their health as excellent, 45% as good, 12% as fair and 3% as poor. The fact that 83% described their health as being either good or excellent is a heart-warming result that in many ways supports data from the recent HIV Futures NZ 2 research study.. The questionnaire was designed to find out what services HIV positive people thought were lacking from NZAF’s Positive Health Services. While in most people were not part of a peer support group (54%), and many individual views were held, the most common thing that respondents wanted were additional support groups : two respondents specifically requested a group for Wellington while two other respondents requested a peer support group for
migrants to New Zealand. Four participants from Wellington wanted more organised social activities for HIV positive people and this sometimes included their families: “Using social groups in the community with treatment health service’s involvement - family groups all in the community” While there are existing peer support groups in New Zealand which can be accessed it is also possible for NZAF to assist people to set up support or social groups but does not directly provide these services. If you would like to do this, please contact you nearest NZAF branch and speak with the positive Health Regional Manager. The next most wanted service was a drop-in centre in Wellington. Six people wanted a drop-in centre with internet access. This service is currently available through the NZAF library in Auckland. People can visit the library by appointment by calling Vern Keller the librarian on (09) 300 6960 or emailing email@example.com.. If you do not live in Auckland and need specific HIV information you can phone, email or write to Vern and request information to be sent to you. People can also contact your nearest centre as they may be able to provide you with the information you are seeking. Respondents also wanted an information sheet of HIV positive friendly health services. Two people wanted Positive Health Services to be more focussed on providing services for heterosexual people with HIV, while four respondents wanted more services for women. These are emerging issues and need more consultation with the HIV positive community. NZAF is planning to do this with the formation of a new HIV positive people’s advisory group. The NZAF has just released a positive health brochure. This is available at all Positive Health Services as well as on the NZAF website. Please contact Eamonn Smythe if you would like to participate in the NZAF’s HIV positive people’s advisory group on: (09) 300 6958 or by email: firstname.lastname@example.org.
Hepatitis needs more attention, says lobby group
Half of under 25’s in UK don’t use condoms
Chronic hepatitis should be given the same global attention as HIV, TB and malaria, says the World Hepatitis Alliance (WHA), after figures emerged that one in 12 people around the world is infected with either Hepatitis B Virus chronic hepatitis B or C. It is estimated that over 500 million people now have hepatitis B or C and 1.5 million people die every year from hepatitis disease. Worldwide there are 350 million people infected with the hepatitis B virus, for which there is an effective vaccine and a further 150 million are infected with hepatitis C, for which treatments and a cure is possible for as much as eighty per cent of patients. “There is a serious lack of awareness and political will to tackle these diseases,” Charles Gore, president of the WHA told a World Health Organisation (WHO) meeting in May 2008. “We need to give these diseases the same visibility as for AIDS, tuberculosis and malaria.”
A survey by the National AIDS Trust (NAT) to coincide with National Condom Week this May revealed that nearly half of all under 25’s do not use condoms with new sexual partners. NAT is now asking for condom ads on TV and radio before the 9pm watershed as well as compulsory condom awareness in school curricula. The survey of over 1,900 young people found that 49 per cent don’t always use a condom with new sexual partners and 24 per cent said they would stop using condoms once they had been tested for HIV and other STIs. Only 17 per cent said they would always use a condom. “The British public needs a wake-up call on condom use,” said Deborah Jack, NAT Chief Executive. “Too many people don’t know the basic facts on how condoms prevent a sexually transmitted infection such as HIV. Too many people are inconsistent in how they use condoms and too many people give up on condoms in a relationship without a health check-up, thus possibly harming their health or that of their sexual partner.” - Poz Nation No. 138
- Poz Nation No. 138
2010 International AIDS Conference will be in Vienna
Bareback gay HIV porn scandal in UK
The International AIDS Society (IAS) has announced that the 2010 International AIDS Conference will be held in Vienna, with a special focus on the growing HIV epidemic in Eastern Europe. Over 1.6 million people in Eastern Europe and central Asia now live with HIV and there were an estimated 150,000 new infections in the region in 2007. The International AIDS Conference is the most important meeting in the global HIV calendar and this summer’s conference was held in early August 2008 in Mexico City, with a particular focus on the growing epidemic in Latin America. Web: www.iasociety.org; www.aids2008.org
BBC’s Newsnight has revealed a scandal in the UK porn industry where gay actors are not using condoms for sex acts. Three films have been withdrawn following the Newsnight investigation into the health risks of bareback gay porn, where men have unprotected anal intercourse. The move comes as four of the British actors in the films were diagnosed HIV positive soon after shooting the porn videos. There has been an explosion in the production of bareback gay porn over the last few years, Newsnight reported, and they now make up to 60 per cent of the gay porn market. Despite campaigns by HIV health promoters, most specialist gay sex shops across Britain still stock gay bareback pornography.
- Poz Nation No. 138
- Poz Nation No. 138
Issue 72 h May 2009
Russia “not ready” for tough HIV prevention
South African HIV positive soldiers sue government
Russia is not ready to implement measures such as methadone replacement therapy for drug users to stem the tide of new HIV infections, according to the country’s chief public health officer Gennady Onishchenko. As many as eighty per cent of Russia’s estimated 1.6 million HIV positive people acquired the virus through dirty needles, and studies around the world have shown that injecting users who switch to methadone are up to five times less likely to contract HIV. Onishchenko said that uninformed Russians have little patience for drug users, preferring to imprison or ostracise them, rather than address their needs. Russia has pledged NZ$704million to fight HIV in 2009, more than twenty times the amount spent in 2005. Russia’s heroin problems stem from the vast country’s location as a trafficking route between opium-producing Afghanistan and Europe, AP reported.
A trade union representing South Africa’s military is taking the country’s defence ministry to court, accusing it of discriminating against people living with HIV. The South African Security Forces Union (SASFU) says people with HIV are not recruited, and are refused promotion if they become soldiers. An estimated 11 per cent of the South African population and 35 per cent of the army are HIV positive. The country’s defence ministry responded by saying that people with HIV “could not withstand difficult missions”. SASFU’s Charles Jacobs said there was a now a policy of mandatory testing for South Africa’s military and recruits and denying those with HIV the chance to serve abroad was unconstitutional. South African troops serve as UN or African Union peacekeepers in several foreign countries but the AIDS Law Project said arguments that people with HIV could not do strenuous jobs were a “lame excuse”. - Poz Nation No. 138
– Poz Nation No. 138
Suicidal thoughts common in people with HIV A British study has found that so-called suicidal ideation wondering whether to end it all - is very common in people with HIV. The Royal Free and University College Medical School in London found that out of a group of 778 patients from five London clinics, two-thirds of whom were white gay men, 31% reported at least one episode of suicidal thinking in the last seven days, 11% frequent suicidal thoughts, and 5% “constant” suicidal thoughts. In contrast to some other studies, this one showed that the highest risk group was heterosexual men, who were almost 50% more likely to report suicidal ideation than gay men or women. Wondering “if it’s all worth it” does not necessarily translate into doing anything about it, but results were called alarming nevertheless. - Poz Nation No. 139
In crisis? Having suicidal thoughts is not uncommon. Many people have had such thoughts and worked through them. Although it may be hard, asking for help is the most important thing to do. In case of an emergency – ie, you feel you or someone else is at risk of harm - phone 111. If you need to talk to someone, you can phone Lifeline on 0800-543-354. You can also contact Suicide Prevention Information New Zealand, a part of the Mental Health Foundation. Although we are not a crisis service, www.spinz.org.nz contains contact information for mental health services and helpful information on how to find a counsellor, doctor or support group.
Glaxo and Pfizer join forces to increase HIV drug market share
New Female Condom Approved by Food and Drug Administration in US
British drug maker GlaxoSmithKline is teaming up with American rival Pfizer to secure a fifth of the market for treatments against HIV, helping to contain Glaxo’s falling HIV drug sales. Under the agreement, Glaxo will have an initial 85 per cent stake in the joint venture while Pfizer will hold a 15 per cent stake. The new company, which is still unnamed, will be based in London, and will have an initial working capital of NZ$651m. Both drug makers said the new company would grant them a 19 per cent share of the “growing market” for HIV/ AIDS treatment, reported Forbes.com. Raymond James analyst Eric Le Berrigaud said that although the deal would not be financially meaningful in the near future for Glaxo, it had the potential to translate into “meaningful numbers” by 2014. “In having access to Pfizer’s research and development [of AIDS treatment], Glaxo will try to mitigate the downward trend of its HIV/ AIDS sales as its patents will start expiring over the next five years,” Le Berrigaud told Forbes. – Forbes.com
The United States Food and Drug Administration (FDA) has granted regulatory approval to a second generation female condom (FC2) after preliminary unanimous approval by a FDA panel late last year. The device is cheaper than existing female condoms, is easier to produce, and uses a soft new material. Serra Sippel, Executive Director of the Centre for Health and Gender Equity praised the decision: “We join women around the world in applauding the FDA’s swift action to approve the FC2 female condom…the HIV pandemic among women requires increased investment in womencentered prevention options, and FC2 approval is an important step forward in putting the power of prevention in women’s hands.” Mary Ann Leeper, the Strategic Advisor for Female Health Co., the company that developed both the original female condom and the second generation version said that regulatory approval from the FDA “is an important development in efforts to deliver affordable access to woman-initiated HIV prevention in the United States and around the world”. - Feminist Daily Newswire 12/15/08; Reuters 3/11/08; Centre for Health and Gender Equity 3/11/09
Kaletra as your sole drug still looks good - Spain Long-term data from a Spanish study in which patients’ HIV drug regimes were simplified to only one drug – Kaletra (boosted lopinavir) – has found that nearly three years into the study the patients on Kaletra only are still doing just as well as patients on conventional three-drug regimes. The OK study took 198 people who had been on a standard regime of Kaletra plus two nucleoside (NRTI) drugs for an average of 18 months and took half of them off the NRTIs. After 96 weeks, only one percentage point separated the proportion of people who have undetectable viral loads on Kaletra alone (77%) and on conventional combination therapy (78%). After another year of treatment, the proportion undetectable who stayed on Kaletra alone was 71%. 73 patients out of 100 originally put on Kaletra monotherapy completed these 144 weeks of therapy. Of those who didn’t, 17 developed detectable HIV (15 of whom restarted their NRTIs), nine dropped out of the study, two died, and one changed his treatment regimen entirely. The study authors commented: “This result supports the durability of Kaletra monotherapy.” An interesting question now is whether the approach would work with other protease inhibitors, especially the newer and very resistance-proof darunavir (Prezista). Or, for that matter, whether the development of regimes that consist of as little as one pill once a day (see the Atripla effect) has made Kaletra monotherapy less immediately exciting as a strategy. - Poz Nation No. 140
Issue 72 h May 2009
YOUNG, GAY, POSITIVE… WHERE DO I FIND SUPPORT?
When Rhys Jones first learned of his HIV diagnosis at 22, he didn’t wait too long before telling someone. “I went out that afternoon. I came straight here,” he says, gesturing to the surroundings in K Rd’s Kamo bar in Auckland, where we’re sitting on a Thursday afternoon. “This is my local. I told a friend who was the manager at the time, and basically anybody sitting at the bar.”
“I did go to Body Positive at one stage and found that I was the only one there around my own age,” he says. “Most of my support has come straight from my close friends and a lot of my family as well.”
Four years on, and he doesn’t regret his decision to be so open about his HIV status. He doesn’t even feel his life has changed all that much. “Since I walked out of the doctor’s office, I said to myself, that’s happened - it’s not gonna change. The best thing is to live your life as you should.” It’s hard to find the right word or phrase to describe Rhys’ upbeat attitude; “brave” would seem patronising, “in denial” would be both offensive and inaccurate – in 2005, the last year in which New Zealand’s HIV diagnoses hit a new peak, he became a media poster boy for a new generation of positive gay men, allowing himself to be photographed and interviewed for a national Sunday newspaper about HIV. It was a wake-up call for a community that had been lulled into thinking HIV had gone away. One thing is for certain, Rhys’ comfort with his HIV status is not something shared by all gay men in his age group, a cohort that is growing steadily year-on-year. Rhys himself knows this from the furtive approaches he receives from many young men, many of who have questions about how to adjust to a new life with HIV. They’re questions that he is more than happy to answer. These are men who may not be comfortable going to the NZAF’s Burnett Centre for counselling, or to Body Positive – which caters to a largely older crowd – for peer support. Part of Rhys’ motivation to be visible about being HIV positive was to make positive men his age more comfortable with their status. “I did go to Body Positive at one stage and found that I was the only one there around my own age,” he says. “Most of my support has come straight from my close friends and a lot of my family as well.” What about those who don’t have that support? There’s a paucity of literature available on the support needs of HIV positive youth, but available research shows that there are concerns specific to this population group. A paper published in the Canadian Journal of Human Sexuality in 1999 interviewed 32 HIV positive youth aged between 17 and 25. The authors urged readers “not to assume that the issues and concerns presented in this study are the same as they would be for any person living with HIV. It is important to remember that youth are often still financially and emotionally dependent on parents and family, generally have less life experience coping with serious difficulties, were infected in the era of AIDS prevention, and feel shame as a consequence. “They also have generally not experienced AIDS deaths like adult community members, may still be integrating their sexual identities (and coping with HIV) and feel less confident approaching service providers in health and
Issue 72 h May 2009
social services.” Most concerning in the study were comments regarding barriers in accessing services, be they HIV or youth-related. Some youth surveyed said they felt uncomfortable accessing clinical services for fear of being judged. Having grown up in an era of visible HIV prevention, some participants attached a lot of shame and guilt to the actions that “caused” their infection. With peer support services, there was a perception that some were too adult-oriented in their image and programmes, making youth feel uncomfortable about utilising them. In New Zealand, while Body Positive provides an excellent range of peer support services, including an annual retreat which continues to swell in numbers, it is possible to see where youth may be falling through the gaps by examining the activities of youth-specific organisations overseas, such as Bay Positives in San Francisco and DC Young Poz Socials in Washington. Bay Positives was founded in 1990 and claims to be the first peer-run organisation in the world for young people living with HIV and AIDS. It came together out of a recognition that no agencies existed to meet the special needs of young people. By 1994, it had received a substantial grant from the federal government to operate, something that no peer support organisation in New Zealand currently receives from central government. While Bay Positives provides a range of services including counselling and outreach, DC Young Poz Socials is more informal, mainly based around social activities. The list of activities engaged in includes parties, picnics, sporting events, hiking, theatre outings, white water rafting and canoeing, and away trips. Bay Positive currently has an Xbox on the wish list of items they’d like donated for their drop-in centre. It’s a vastly different world from the treatments conferences, pot luck dinners, massage therapy, lipodystrophy treatment and podiatry services on offer at Body Positive. This isn’t to say that Body Positive actively tries to scare off younger members – its positive men’s retreat this year included more young attendees than ever before. But is there room for New Zealand to have its own peer support service for HIV positive youth? Rhys isn’t sure. San Francisco’s HIV positive population is huge – one in four gay men are living with the virus. In Auckland, where the figures are much lower (around one in twenty), there seems to be concern from some about their visibility. “A lot of people around that age, I’ve found they don’t want anybody to know about it,” Rhys says. “They think if
they’re in a small group together, then people in that group are going to talk as well, word’ll get around and they get scared.” Such fear would do nothing to aid feelings of social isolation. All participants in the Canadian study felt socially isolated and suffered from severe loneliness. Some believed themselves to be the only ones their age with HIV. “The biggest issue for me was asking myself, ‘is anyone my age HIV positive?’” said one 21-year-old male. “I still ask myself that question all the time. I mean you just don’t see a lot of young people with AIDS hanging around anywhere.” Fear of rejection from family was a major source of anxiety for participants, some of whom had only recently come out to their parents about their sexual orientation, or perhaps even accepted it for themselves. “I came out as gay to myself just one year before testing positive,” said one 25-year-old male. “I knew I was gay from age 13, and then to keep it to myself for all those years, and then at 19 feel free, and then at 20 be positive and feel like fuck, what happened here? So I didn’t tell them [my family] for years.” Some kept their HIV status to themselves because their first coming out experience – as gay – hadn’t gone down too well with family. “My dad is not cool with my being gay and he wouldn’t have an easy time with this,” said another 25-year-old male. “He’d probably say to me, ‘this is what happens to gays’. My mom’s okay about my being gay, but HIV would just be too much. I told my brother last year and he took it pretty bad and said, ‘Don’t tell mom and dad, it’ll kill them.’” Rhys experienced similar difficulties with his mother, but managed to find support from his father. “With my mum it [being gay] was always a big deal. Telling her I was positive was even harder. But my dad’s always been right there. I came out to him first before anyone else, and he said that I hadn’t changed so he’s not going to change his attitude. And when I was diagnosed, he was the one who took me to my doctor’s appointment. We got home after that, and he went straight on Google and had a look what it was all about.” Being too scared to reach out to peers and family pales in comparison to the minefield young HIV positive men have to negotiate when it comes to relationships. One of the more common questions Rhys gets asked by people who approach him is, how can I get a boyfriend? Rhys admits to his own difficulties in this area. “I make sure they know my status, because in the end they’re going to find out one way or another,” he says. “So it’s best they know straight away.”
How does he broach the subject? “It’s never easy,” he says. “Each time is just as hard as the other. There’s one or two times I’ve had to tell them by text, because I’ve been chickenshit. But if I am getting into a relationship with somebody then they have the right to know.” Some young men have different coping strategies, as shown in the Canadian study. Some hide their HIV status altogether, or give up sexual relationships. Some coped by only dating other HIV positive people, but found they faced a further obstacle: “The guys I date are a lot older than me because I can’t meet guys my own age who are open about being positive,” said one 25-year-old. “I’d really like a boyfriend my own age.” Some recounted painful stories of outright rejection – “I’ve had guys leave the bed when I told them. One guy wouldn’t even kiss me when he found out” – highlighting the stigma still attached to the virus, and misinformation about how it is spread. Rhys has had his own painful moments when disclosing to potential partners, but he has taken it all in his stride. “A couple have run for the hills, but that’s fine cos there’s always more,” he laughs. It’s exactly the sort of comment you’d expect to hear over drinks among friends, where – if you’ll forgive the platitude – a problem shared can become a problem halved. The Canadian study authors conclude: “In order to decrease the social isolation experienced by HIV positive youth, it is crucial to encourage and facilitate, where possible, opportunities for them to meet their HIV positive peers. This is most obviously facilitated by the provision of support groups for HIV positive youth. Through peer contact, youth learn from each other’s experiences, stories, difficulties and successes. Social isolation and loneliness lessen as they develop
“The biggest issue for me was asking myself, ‘is anyone my age HIV positive?’ ” said one 21-year-old male. “I still ask myself that question all the time. I mean you just don’t see a lot of young people with AIDS hanging around anywhere.”
friendships, and they ultimately realise that their feelings of anxiety and despair are normal, and that they are not alone.” Those words were written ten years ago. With New Zealand HIV diagnoses in 2008 at their highest levels ever, and an increasing number of men under thirty among those numbers, those words are just as relevant today. Rhys told Collective Thinking that he is happy to be contacted by anyone who has questions about living with HIV, or is looking for some individual peer support. He can be contacted by email at email@example.com.
Issue 72 h May 2009
“HIV STILL AFFECTS MY LIFE, EVERY SINGLE DAY” by Michael Stevens
was having “the talk” with a young gay man recently. Trying to make sure he looked after himself, explaining about how HIV works, how much it sucks to have it etc, and after a bit he said to me: “But you’ve had it for years and you’re fine!” It was one of those moments, when you think “Arggghhh!” Yes, I am living well. Yes, compared to where I was ten to fifteen years ago, I feel like the Six Million Dollar Man. I never thought I’d be alive at this stage of my life, and neither did my doctors. In the midnineties I nearly died. I was in and out of hospital with PCP and other nasty conditions. My body weight dropped down to fifty kilograms, mid-eighties now, where I should be. I can remember one of the worst nights in hospital when they were trying to get my temperature down, and I had my hands in basins of ice water, a fan blowing chilled air over me. I was delirious. I couldn’t get out of bed to shit. I couldn’t move. I was weak, powerless, and scared. I’d tried acupuncture, Chinese herbs, all sorts of alternative meds and they did nothing. At that time Western medicine didn’t do anything much either, not until the new drugs that have saved my life and so many others. I spent weeks and weeks in Herne Bay House, no longer sick enough for hospital, but so unwell I couldn’t walk down the corridor to the kitchen, and it wasn’t that long a corridor. Lying in my bed there with an oxygen bottle attached to me - not fun. Then I’d be sent back to hospital for something else. Then I’d be back at the house. I’d seen other friends die there. People died while I was there. I was sure I would too. I had my funeral planned. I was angry - so angry - with everything and everyone. I can remember that anger so clearly. Cold, intense and uncomprehending. I was able to change my attitude, over time. Now I love my life. But I know how lucky I am. So many of the men I loved died in the worst
days of the plague, before the new drugs came out in the mid-nineties. They changed everything. From getting ready to die, I had to get ready to live. I think I’ve done a pretty good job of it since then. HIV still affects my life every single day. I have to take my pills regularly. At first I was taking 47 a day, and it didn’t leave time for much else. Some had to be taken with food, some you had to wait two hours after you’d eaten and take, everything was measured for me by the medication. It still is. If I go out to dinner I have to remember to take my pills with me, or go home early. Luckily my latest drug regime is, for some reason, easier on my stomach. In the past I always carried a spare pair of underwear in my bag, “just in case”, and I needed them quite often. I knew, and still know, where every available toilet is on my regular walking routes, but I no longer seem to need to rush into them in the way I used to. As much as I value the drugs for all they’ve done for me, I know that they are also taking a toll on my body, on my heart, my liver and kidneys. I have friends who have had their body shapes changed by the drugs, deposits of fat around their necks and shoulders, their cheeks wasted away. HIV meds do strange things to body fat. And I know people for whom the drugs just don’t work. They are a tiny minority, but like any medication, there are some people who just don’t respond. Emotionally HIV has changed me as well. I still find it hard to trust that I have a future, I still have a little voice saying “this could all go back to how it was”, but I try and stifle that. Because focussing on it does me no good at all. Life is for living, and for enjoying where you can. Men react very differently to you when you tell them you have HIV. As much as they say they understand safe sex, it is still a deal breaker for many. And I suppose I hold myself back as well due to this. So there is the paradox - a young gay man says “you’ve had it for years - you’re fine!” – and how do I convey to him that in fact I am…but I’m not. In fact, once you get HIV, it’s like adding a tiny drop of ink to a bottle of water - you can’t see the drop once it’s added, but it’s there forever and you can never get it back. My life has been altered beyond recognition - my plans,
my hopes - all have been shifted and changed because of this. I hate it, although I don’t hate what I’ve learnt from it, but it’s a really shitty way to learn a lesson like this. I don’t recommend it to anyone. Realistically, HIV is here to stay. It is highly unlikely that we will ever live in a world without it. So we have to find ways to live with it. And I’m glad I have. But I wish I hadn’t had to do all this. I wish I’d been able to lead the life I thought was mine. So never ever think that just because so many of us are living better with it these days that it isn’t an issue. It is. It imposes a huge burden, physically, mentally and emotionally on us all. Yes, compared to where I was, I’m fine. I’m alive. I never thought I’d see in 2000, now I’m pretty sure I’ll get to 2010, and beyond. Life’s weird. I didn’t do anything special to get here, I’m not a saint. Most people with HIV aren’t, we’re just ordinary people who learn how to cope. I probably won’t die from an AIDS-related illness, but from something brought on by the medications themselves I’m aware of this, but it is still so much better than it was before. I think for me one of the worst things is the amount of control over my life I’ve lost. But this reaction - it threw me - what do we do? Do we downplay just how well most of us are doing these days? Do we cease celebrating the good things that have come our way in an effort to dissuade young people from putting themselves at risk? I think now - I’m bloody happy I’ve got to where I am, and I can’t be responsible for the ignorance of others. I intend to enjoy what life I have left with gusto. The hard thing is that to some extent, this young man was right. Yes, I’ve got this virus in my body, but I work, I travel, I go out, I fuck, I have a happy and interesting life. Having HIV for most people today really isn’t anything like as bad as it once was. But that’s not the point, is it? With all the improvements in our health and treatment, it still places a huge burden on you. Please - don’t get it. Yes, we look so much better, and live so much better - but believe me it still sucks. Please, look after yourselves out there and don’t add to the stats.
Issue 72 h May 2009
REGIONAL SUPPORT GROUPS – MISSING IN ACTION? By Jack Dragicevich
n the current climate where nationally the number of new HIV diagnoses is rising, why are a number of support organisations outside the realm of the government funded agencies, such as the NZAF branch network, sexual health clinics, the medical service providers, practitioners and specialists, and the DHBs closing down or struggling to survive? Are these services being perceived by HIV positive people as not being relevant in addressing their needs and if so, what other avenues are positive people exploring to get their needs met? And to what extent is the current economic climate of the recession, affecting the provision of such services?
Northland AIDS Network Charitable Trust www.northlandaids.org.nz Starting at the tip of the North Island, we have the Northland AIDS Network Charitable Trust, an organisation that has been operating for many years. The Trust, according to its mission statement “is a group of concerned individuals who, recognising that prevention of HIV is a major health issue for all people in Northland, seeks to provide education, support, care and advocacy for people living with HIV or AIDS, their families, caregivers and others whose lives are affected by the virus. There is no discrimination due to age, race, religion, culture, sexual orientation or gender identity.” This group was very active in the early years of the epidemic, covering all of the area above Wellsford to Cape Reinga/North Cape but today it is not very active, with very few HIV positive people accessing its services. There seems to be an identity crisis within this organisation as to what its role should be now that people with HIV, due to the success of antiretroviral medications
are living longer, and thus appear less in need of its services. Should the organisation continue to provide HIV-related services or get more active in other closely related health areas, such as preventing the transmission of STIs in the community? It appears most HIV positive people from Northland access their medications and get their needs met through the New Zealand AIDS Foundation’s Burnett Centre in Auckland, various Sexual Health clinics (such as Whangarei Sexual Health), through their own local GPs or through HIV specialists.
Body Positive New Zealand & Positive Women In the Auckland region (south of Wellsford to the Bombay Hills), two major HIV peer support organisations operate – Body Positive Inc. (NZ) and Positive Women, an Aucklandbased but national organisation providing education, advocacy and support to HIV positive women, their partners and families. Both of these organisations are very active and offer a wide range of services to HIV positive people and also act as the national peer support bodies for their respective clientele. While the Community HIV Team (formerly the CART Team), a part of the Auckland District Health Board, works almost exclusively at Auckland Hospital, it also works with the HIV positive community. For a list of the services it provides to HIV positive people see: www.healthpoint.co.nz/default,46782.sm Body Positive has a national membership of approximately 400 HIV positive people from throughout the country. Though most of its services are Aucklandbased, they do provide peer support and advocacy on a national basis for all HIV positive people in New Zealand
regardless of age, race, gender or sexual orientation. Body Positive runs and organises an annual national retreat for positive men; offers support, practical advice and help to other peer support organisations throughout the country, produces a national newsletter, Positively Positive, giving a peer based perspective on HIV issues. It has been operating as an incorporated society with charitable status since 1994. Over the past few years Body Positive has grown enormously and expanded its services to meet the ever-changing needs of its members. However, both Body Positive and Positive Women are suffering from the harsh economic realities of the current recession. With no funding from central government, both organisations are reliant on community funding sources to provide the range of services that they currently offer to HIV positive clients. As local sources for funding start to dry up, these organisations are starting to feel the pinch. Body Positive recently had to lay off some staff members and put on hold plans to expand its services to include residential respite care, and Positive Women similarly had to lay off its support person and concentrate on its core services. There is little likelihood that either Body Positive or Positive Women will disappear, but neither organisation appears to be able to offer the level or range of support that they would they would like, or believes is needed, to the HIV positive community.
Body Positive Waikato
South of Auckland operates Body Positive Waikato, which is a peer support group of people living with HIV/AIDS, helping others in the Waikato region who are experiencing difficulties coping with living with HIV. This organization offers peer support by way of counseling, advice, assistance and practical help (when able). They have an excellent working relationship with the Hamilton office of the New Zealand AIDS Foundation, primarily to avoid duplication of services and thereby wastage of valuable funding resources. The organization operates throughout the Waikato, King Country, Coromandel, Bay of Plenty and Poverty Bay/ Gisborne areas. “We try to get our members and those who want help but don’t want to be members, together, at least four times per year to allow them the opportunity to discuss medications, side effects and any other aspect of their illness with others in the group. We have found this helps some when they realise that the problems they are experiencing are not affecting them alone,” says Lance, secretary/treasurer for
Body Positive Waikato. “Unfortunately, due to the difficulty during these hard economic times and the increasing scarcity of charity funding, we have almost run out of money and are therefore in hiatus until we can secure funding. Hopefully, we will survive these economic upheavals and be back in operation at a later date!” Contact details: Lance, (Secretary/Treasurer) Phone: (07) 839-9925 E-mail: firstname.lastname@example.org Address: 32B Hobson Street, Maeroa, Hamilton, 3200
Bay Area AIDS Support Services (BAAS) Another local organisation that provided HIV support for many years in the Bay of Plenty region was the Bay Area AIDS Support Services (BAAS), based in Tauranga. It is now no longer in operation. Once its original founder died several years ago, this organisation struggled to attract enough support to survive. With the arrival of a well-respected HIV physician working in the area, most positive people now access medical support and other services through that avenue, through referrals from local GPs, through Tauranga Hospital’s Sexual Health Unit (Clinic No. 2), through the HIV nurse (Sue Ogden) and social worker based at the hospital as well as from support provided by NZAF Hamilton. Contact details: Sue Ogden (07) 579 8157 (021) 241 6513
Wellington HIV support services in the lower half of the North Island and top of the South Island were based on Wellington. But Wellington has traditionally found it hard to get any form of peer support in operation for very long, and usually in the context of small group meetings at the New Zealand AIDS Foundation’s Awhina Centre or sexual health clinics. For a brief period, there was a Body Positive support organisation in Wellington, however it failed to attract a wide enough base of support and is no longer in operation.
Issue 72 h May 2009
A recent attempt to form a peer support group calling itself Absolutely Positively Positive (capitalising on Wellington City’s well-known tourist slogan) is underway but it remains to be seen if this group will garner enough support for it to continue.
Nelson Another long-standing HIV support organisation, the Nelson HIV/AIDS Support Network, went out of existence a couple of months ago. It provided support for over ten years, including referrals to other services, basic HIV and prevention information as well as individual support to positive people when needed The closure came about for a number of reasons, including the lack of people interested in being involved and a drop off of positive people in the area requiring the organisation’s support. Positive people in the area now access support through the HIV specialist at the local hospital, who has good contact links with other services, which to an extent made the support network somewhat redundant as well. The founder of this organisation is still willing to pass on his details to those who may still require support, information or referrals. Email Kevin at email@example.com.
Christchurch The collapse of Poz Plus in recent months has left a large hole in the provision of such support in the South Island. An organisation active in providing peer support for HIV positive people, its services included a drop-in/meeting place facility, a regional magazine and website, member’s lunches and even organised a South Island retreat for HIV positive men, predominantly in the Canterbury region but also throughout the South Island for the past several years. Positive people now have to seek help through other channels such as the HIV specialists at local hospitals, GPs and the New Zealand AIDS Foundation’s South/Te Toka centre in Christchurch.
Otago/Southland For those further south, there were two small local organisations that provided some measure of support for HIV positive people in the Otago/Southland area. The first of these, the Dunedinbased Otago Positive Support Network (OPSN) is now defunct, although a contact for referral through to services at Public Health South can be accessed on (021) 151 3307. While the Southland HIV & AIDS Support Group in Invercargill is still in operation, it is very small and is a volunteer-based group who fundraise for events such as the annual Candlelight Memorial and World AIDS Day. It also offers support on an individual basis to HIV positive people, their friends and families, as needs arise. Shona Fordyce, at the Invercargill Sexual Health Clinic, where local HIV positive people can get medical services, referrals and other practical help, is a contact for both groups: (03) 214 5768 or firstname.lastname@example.org.
It seems that some HIV positive people around the country can get most of their basic medical needs met, while some may have to travel great distances to get them or the other forms of support they need. For peer support, HIV positive people either access such support through the Internet and blog sites, peer organisations, through national HIV positive retreats and forums or through local community-based volunteer support groups. In today’s environment, many of these groups are under financial stress and may not survive, at a time when more than ever such services are needed, as HIV infection rates continue to rise. Co-editors Comment: From personal experience, I know that the annual retreats organised by groups such as Body Positive and Positive Women have a great impact in terms of peer support for people living with HIV. Yet in the current economic climate, both organisations are finding that raising funds for these events is becoming more and more difficult. If any of our readers would like to make suggestions for fundraising events, know of other suitable venues for future retreats, wish to make a donation etc. please contact the above organisations on their websites: www.bodypositive.org.nz www.positivewomen.org.nz
Greater Involvement of People Living with HIV and/ or AIDS1 (GIPA). Tena koutou katoa Over the last year a commitment has been made to have a greater input from HIV positive people in the planning and review of services delivered by the Positive Health services within the New Zealand AIDS Foundation.
his will add to the ongoing relationship with PLWHIV support organisations and the contribution of our own HIV positive staff. So far we have met with local informal groups and individual meetings across the country and produced our recent ‘what do you want/need from NZAF services’ survey. During the process of completing this survey it was asked if people would like to join an advisory/reference group for Positive Health services. It was heartening to see the strong support for this idea. The results of that survey are in this edition of Collective Thinking. We wish to express our sincere thanks to those who completed it. For us to continue to build our commitment to GIPA (Greater Involvement of People with HIV and AIDS) we must now move to the next stage of this commitment, the formation of a HIV positive ‘reference’ group. This group will be a national group, made up of approximately 9 people, a focus on individuals rather than support organisation representatives (so they can add value to the current relationship we have with the support organisations) and it is hoped that a cross section of HIV positive people will be involved. We need the contribution of men and women, a range of ages, gay and heterosexual, those taking treatments for many years and those new to treatments, as well as not yet started. Perhaps a parent of a HIV positive child and certainly recognising that if possible - Māori, African, Pacific and Asian cultures are represented.
This group once formed will meet every three months for a full day and contact will be maintained throughout the year. The draft terms of reference include; H Help set the direction for future issues of Collective Thinking H Guidance and advice on PLWHIV focused events such as Candlelight Memorial H Review any planned materials for publication by Positive Health H Review changes to systems/services such as Positive Speakers Bureau and the Wellness Fund H Input into the annual process of setting operational goals. H Reviewing and monitoring delivery on those plans This group will meet and work with the Director of Positive Health services, although others, such as the editors of Collective Thinking, and Regional Mangers will join us for specific purposes. Whilst confidentiality will be respected and the names of the participants need not be published to assist with administering the group and ensuring the members are included in other NZAF news/ information, group members will need to be comfortable with their status being known by NZAF staff other than the PH Director.
Issue 72 h May 2009
If you are interested and wish to be a part of this group please write to me or your Regional Manager, telling us a little about yourself (a CV would be helpful but not essential), what you believe you can contribute and your reason for wanting to participate. Fax, email or snail post all welcome. Eamonn.email@example.com, firstname.lastname@example.org. nz, email@example.com. By 1 June 2009. Looking forward to hearing from you. Naku noa, na Eamonn Smythe Director Positive Health. Wayne Otter Regional Manager NZAF Burnett NZAF Te Puawaitanga (temporary) Laura Jones Regional Manager NZAF Te Toka South NZAF Awhina (temporary)
THE BODY POSITIVE HIV POSITIVE MEN’S RETREAT By Jack Dragicevich
he concept of a national annual retreat, accessible to all HIV positive men regardless of their age, ethnicity or sexual orientation, was born more than a decade ago. It was based on a very successful model of annual retreats for positive women that had been running for several years prior to that date, albeit on a much smaller scale than those envisaged for a positive men’s retreat. The same philosophy and programme format was used to create the men’s retreat, and is still in use today. It works to achieve the right balance of educational workshops and relaxation time, with the provision of various therapists, guest speakers, entertainment and fun events, and pampering (donated gift bags for each participant etc) so that the participants could get the maximum benefit from the weekend away, in a safe, secure, non-threatening environment. It was to be a venue for positive men to interact with each other, make friends, learn from and share experiences with their peers from all over the country. These were deemed to be the essential elements to make the project a success. This blueprint for running a successful retreat for men living with HIV was taken up by Gary Pepperell of the CART Team and by David Skelton, who was then employed as the NZAF Burnett Centre’s Treatments Information Officer. Together with a small committee of other interested parties, including the NZAF Burnett Centre, community volunteers, Body Positive (of which I was one of its representatives), we set about organising the first national HIV Positive Men’s Retreat at Clark’s Beach on Auckland’s Manukau Harbour. The success of this venture led to two more retreats being held in subsequent years, at Clark’s Beach, before the venue for future retreats was changed. Due to its popularity Clark’s Beach was deemed too small to cope with the numbers wishing to attend, and the participants were looking for improved comfort in terms of sleeping accommodation. The new venue and present location is Vaughan Park, at Long Bay on Auckland’s North Shore.
The organising of the annual retreats has been taken over by Body Positive, making it an event run by and for HIV positive men. Body Positive Incorporated New Zealand, the Aucklandbased peer support organisation, has now run and organised this annual retreat, for over a decade. This year’s event, held over the Easter break from 10-12 April, was the tenth one. The noticeable thing about this year’s retreat was the amount of out-of-towners who came from all over the country, including the South Island and the number of first timers and newly diagnosed who attended. We are going to need a bigger retreat venue next year! The emphasis this year was less than it has been in the past on structured workshops and more on quiet time/ reflection/leisure (the true spirit of the retreat) and on interaction between retreat participants. There was no pressure to attend any or all of the activities. Delegates, if they so wished, could choose to just relax, walk among the beautiful tracks and beaches, read or simply enjoy the company of other positive men. A highlight (among many of this year’s retreat) for me was the moving (non-denominational) Easter service conducted by one of our own members, a Unitarian minister. For the more active amongst us, there was an opportunity to go horse riding (a very popular event) or supervised kayaking. There was even an opportunity for those who wanted to participate in a karaoke evening to do so (not my cup of tea, I preferred to listen rather than inflict my dulcet tones on the unsuspecting ear drums of others). Once again there was an opportunity for participants to enjoy a range of therapies including massage (both a mechanical one from a special therapy bed provided by the Oasis team or from several qualified massage therapists), get a haircut or have your feet pampered, preened and prodded by a qualified podiatrist. For me, there was just the right number of workshops. It was interesting to hear from Nathan Billing who spoke on nutrition for HIV positive people, in particular how to work
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out my risks for having a heart attack on a thing called the Framingham scale. Sorry folks, it appears HIV is not the cause of all problems – our age, what we eat, how much exercise we get (or lack thereof), the amount we drink or smoke, etc are just as likely to cause long term illness than the organism with which we have been infected. As always, Dr. Mark Thomas, one of the leading HIV and infectious diseases specialists in the country was in fine form, in a question and answer forum called the “HIV Update”. He raised some interesting points. Here are some of them: Is superinfection (that is, the risk of an HIV positive person being infected by another strain of the virus) real? Yes, it does occur, it’s in the medical literature, but it is likely to be a rare occurrence. Over all the years he has been in medicine, Dr Thomas has never personally seen such a case. On the topic of Kivexa and its links to heart problems Dr Thomas talked of the possible complications that long term use of abacavir-related and some other HIV medications could increase the long term risk of heart problems for those with predisposing conditions (such as hypertension, poor diet, lack of exercise, high cholesterol and triglyceride levels, old age and genetic factors). However, the vast majority of people on this treatment experience no complications and it works for them in achieving long-term viral suppression with minimal side effects. If worried, patients should discuss these factors and how best to manage them with their specialist (leave them to do the worrying). He also pointed out the risk of smoking was like “sledge hammer” in terms of risk of heart disease, and Kivexa “a butterfly”. It would be a very unlucky person to suffer badly from “the butterfly.” Can two HIV positive people, both of which are on HIV medications with undetectable viral loads, engage in consensual unprotected sex and not pass on the virus? If the blood (serum) levels of the virus and those in the semen are both undetectable (i.e. less than 40 copies per millilitre of blood), then it is very unlikely that the virus
will be passed on. The Swisse study (a large European study) seems to confirm this. However it should be noted the Swisse study was conducted between heterosexual couples not with men who have sex with men. Similarly all overseas studies conducted on the safety risks of sexual activity with condoms is conducted in the context of heterosexual activity not on homosexual sexual activity so there may be some difference there.
The other workshop that I really enjoyed at the retreat was the “Story Telling” one, where people were invited to share a favourite story or experience (not necessarily HIV related). It really showed what depth of experience and diversity there is in the positive community. While I did not attend, the Sunday morning HIV 101 course (a beginners guide to basic HIV information) aimed at the recently diagnosed, I can certainly see the value in it, with so many first timers being at the retreat. The only major difference in workshops this year, was that Body Positive decided to hold its AGM at the retreat, so that people from outside of Auckland could have a real say in the future direction of the organisation and give a better insight as to what is happening around the country in terms of provision of services to HIV positive people. For me the experience of this year’s retreat was a most enjoyable, relaxing, sustaining, informative and empowering weekend. Thanks to Bruce and his wonderful team at Body Positive for their work in making this retreat such a success. Future ideas and suggestions on the retreat (and possible future venues to cater for larger numbers) can be made by contacting the Body Positive website or ringing the free phone service from anywhere in the country. www.bodypositive.org.nz Free phone: 0800 HIV LINE
POSITIVE WOMEN FAMILY HUI STRAIGHT ARROWS DINNERS A SUCCESSFUL EVENT
ore than 75 people attended Positive Women’s family hui held near Matamata in early November, with lots of good feedback. Fine weather, a big turnout, and the way members took ownership of the hui - running activities like quiz night and helping volunteers - all added up to a successful event. It follows the first family hui run by Positive Women at the same camp two years ago. Attending their second family hui, Svadha’s family accounted for three generations with her daughters and grandchildren. Svadha felt the hui and venue were fantastic. There were plenty of activities for the children including a flying fox, kayaking and fishing. “I think 99 per cent of the people who went came back closer,” she says. “There was a real camaraderie happening, which was what also struck me about the first hui.” One personal highlight was her grandson catching an eel on a fishing rod he had never used before. The prized eel was then smoked and shared around. “Having it so fresh and knowing that my grandson caught it, made it taste like caviar,” Svadha says. Auckland hospital social worker Susan Mundt was one of several volunteers who looked after the children. “It was really lovely meeting some of the kids of our clients, and people from other parts of New Zealand,” she says. As a vegetarian, Susan gave eeling a miss but really enjoyed the flying fox and all the other activities. She is keen to return to help at the next family hui. “The whole weekend was a lot of fun.”
One couple’s story When Miranda and David took up an invitation to attend Positive Women’s family hui, they didn’t know what to expect.
“At first you’re wary,” Miranda says. “You think, what am I walking into? What sort of people are going to be here? Is it a medical conference? But you soon learn it’s a really good atmosphere to be around.” Miranda, who is HIV positive, has been married to David, who is HIV negative, for two years. They come from a small town where Miranda’s HIV status is a secret. “You can’t discuss it in your own community,” David says. “I don’t even tell my mother.” Attending the hui lifted the daily stress of keeping her HIV status a secret. “It’s a totally different atmosphere,” Miranda says. “When I was first diagnosed, I was really paranoid about anyone finding out. I’m not so worried now, but I’m still very wary about who knows my business. At the hui, the camouflage comes off, and it gives you a sense of freedom and belonging with people in the same situation as you.” “It’s like a weight taken off your shoulders,” David agrees. “The group discussions are really good for HIV negative people to have somewhere to go and people to talk to. You might not even want to talk the first time, just listen so you can get to grips with it all. I can’t imagine what it would be like for someone being diagnosed without that kind of support being around.” David and Miranda would like to see events like the family hui happening more often, as there is a lack of peer support outside of main centres. “There’s nothing available,” says Miranda. “In the bigger centres there are clinics, hospitals, seminars, people getting together, but out here you’re waiting for someone from a bigger city to come and visit you.” As well as making new friends and sharing common experiences, Miranda and David were inspired to make a life-changing decision by attending the hui. “When we got married, we didn’t think about having
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kids as something that would be possible,” Miranda says. “We were inspired by the stories, how many HIV negative children are born from HIV positive parents. The hui is a place where you get a lot of hope, and you can learn a lot from a place like that.” Positive Women would like to extend a big thank you to the hui sponsors and volunteers who gave up their weekend to help out at the camp, running workshops, providing counseling and organising activities.
STRAIGHT ARROWS In 2008, 39 men and 22 women who are heterosexual were diagnosed with HIV, adding to a steadily growing pool of people whose support needs are distinct from those of gay and bisexual men. For some HIV positive people, being heterosexual can add another barrier to seeking support, since the majority of positive people in New Zealand are gay men. Positive people have much in common but within the shared health condition are different cultures and stories. The modes of infection can be different, reactions of family members and workmates can be different, and many people also have children. Because HIV has been in the gay community in New Zealand for longer, gay HIV positive people often experience greater acceptance of their diagnosis because their peer group is frequently HIV aware. Where HIV positive heterosexual people, in particular men, often face another level of difficulty through lack of awareness and stigma. Straight Arrows is a social evening for heterosexual men and women who are HIV positive. Co-ordinated jointly by Body Positive, Positive Women and the
Community HIV Team, it is held on the last Thursday of each month from 6:30pm. For Paul, Straight Arrows was the first opportunity he’d had to meet and socialize with other HIV positive heterosexual people. “I was searching for maybe eight to ten years, but could not find any groups that existed. I have been to other social groups with mostly gay people, and while I had good relationships with them I wanted to meet other straight people, particularly women,” he says. The last two evenings have been pot luck dinners, with people bringing something along from home for the table. Around fifteen people regularly attend, and Paul hopes that the group will be a springboard for other social events, and a place for friendships to develop. “For other positive people who may be reading this, I say come and join us. It doesn’t just have to be once a month – we can go out to a café, have a beer, go to the cinema.” In particular, Paul would like to see more women coming along. “Not too many women are coming at the moment, much as I know they are out there! It would be good to have more friends, and when I talk about friends I don’t mean sex, I mean friendships.” From the start, Paul says that the confidentiality of everyone attending is assured. “It’s a very friendly atmosphere. It’s up to you how much of your life or experiences you want to share.” If you’re interested in attending or would like more information, contact any of the organisations listed below: Positive Women – (09) 309 1858 Community HIV Team (formerly CART) – (09) 375 7077 Body Positive – (09) 309 3989
HIV MEDICATIONS AND HEART
t has long been postulated that people living with untreated HIV have a significantly higher risk of cardiovascular disease and heart problems than those in the general population who are unaffected by HIV. Antiretroviral therapy with powerful HIV medications has led to most HIV positive people on treatment being able to achieve long-term suppression of their virus. Over the past decade or so, this had led to HIV positive people living longer, healthier and more productive lives, transforming what was once a lifethreatening illness into a chronically manageable condition, reducing the risk of cardiovascular disease to similar (though slightly higher levels) than the general population. In terms of heart risks, it appears that HIV infection itself has a significant impact on increasing cardiovascular disease, but there is also increasing evidence that the long-term toxicities of HIV medications themselves are a significant contributing factor. Recent research theories appear to link this to some protease inhibitors and some of the class of drugs known as the non-nukes (nonnucleoside reverse transcriptase inhibitors).
The range of cardio vascular/ heart problems involved can include:
H coronary heart disease (heart attacks) H cerebrovascular disease (problems with blood vessels in the brain, including stroke) H high blood pressure (hypertension) H peripheral artery disease (blocked blood vessels in the legs) H rheumatic heart disease (a complication of a throat infection) H congenital heart disease (due to a birth defect) H heart failure. The link between HIV and heart problems is not new. In 2005, a European study examined the impact of HIV medications on the human body. This study is thought to be the first of its kind to suggest HIV had an effect on cardiac health. Specifically, the study showed that people infected with HIV were twice as likely to have a heart attack or a stroke than those not infected with HIV. This was confirmed in another study whose results were reported in 2007. However, the 2007 study showed a stronger connection between heart problems and HIV. For instance, a woman’s risk for a heart attack tripled after she became HIV positive and a man had a forty per cent increase in risk after becoming HIV positive.
It must be noted that an epidemic of cardiovascular disease in HIV positive people receiving protease inhibitorbased treatment is not on the horizon, according to an editorial in the 27 April 2007 edition of the New England Journal of Medicine. Commenting on the findings of the DAD study, James Stein of the University of Wisconsin School of Medicine says HIV infection uncontrolled by treatment is likely to be a greater risk for heart disease than the metabolic changes associated with HIV treatment.
So what causes cardiovascular disease? Heart attacks and strokes are caused by blockages that prevent blood flow to the heart or the brain. The most common cause is a build-up of fatty deposits on the inner walls of the blood vessels. Over the years, they become narrower and less flexible. This is known as atherosclerosis (or hardening of the arteries). The blood vessels are then more likely to become blocked by blood clots. When this happens, the blocked vessels cannot supply blood to the heart and brain, which then are damaged due to lack of blood and oxygen supply. The major causes of cardiovascular disease are tobacco use, physical inactivity, and an unhealthy diet. Increasing age, being male (or a female over 45 years of age), family history of heart complications, smoking, diabetes, and high blood pressure all increase the risk of cardiovascular disease. Antiretroviral therapy can also increase blood fats (cholesterol and triglyceride levels). It can also cause diabetes and insulin resistance. These are risk factors for heart disease. Additionally, HIV causes inflammation, which can also contribute to heart problems. Therefore it is essential for HIV positive people to have their risk levels checked regularly (at least once a year, or more often if found to have increased risk factors for cardiovascular disease). Another important factor to consider is that certain HIV drugs, mainly protease inhibitors and some other agents in other drug classes and possibly HIV itself, can cause lipodystrophy. Lipodystrophy is a group of metabolic fat-related body changes (such as wasting, loss of subcutaneous fat on the face, buttocks and extremities, accumulation of fat around internal body organs, and central obesity or accumulation of fat around the neck known as “buffalo hump”). Some of these changes are risk factors for heart disease, including: high cholesterol, high tryclycerides and diabetes. There is also evidence of an increased risk of heart disease in HIV positive older women (over 45) with lipodystrophy.
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PROBLEMS So How Do We Measure CVD Risk? Nathan Billing, a specialist in nutrition for HIV positive people, spoke at Body Positive’s annual retreat in April this year. He suggested that one of the most successful tools for measuring CVD risk is the Framingham Risk Assessment. A calculator is available on the Internet at http://hin. nhlbi.nih.gov/atpiii/calculator.asp. Although not adjusted specifically for HIV, the Framingham calculation appears to be fairly accurate. At present there is no risk calculator that is adjusted for HIV, and more studies are needed to develop a more accurate risk calculation.
What are the other risk factors for CVD? Many factors can increase your risk for heart disease other than HIV. One of the most important factors is family history. If someone in your family has had heart disease, you may have a genetic predisposition to have a higher risk of the same. Hormone replacement therapy (HRT) may increase a woman’s risk for heart disease, stroke, pulmonary embolism (blood clot in the lung), and breast cancer. For some women, the benefits of HRT outweigh the risk of heart disease. You should discuss your family history and risk factors with your doctor to decide what is right for you. Other risk factors include: high blood pressure, high cholesterol levels, high triglyceride levels, lack of exercise, stress and hypertension, poor diet, being overweight or obese (in particular central obesity, fat accumulation around the waist), and diabetes. According to HIV specialist, Dr Mark Thomas, Professor at Auckland University School of Medicine, smoking is one of the leading causes of coronary heart disease in HIV positive people in New Zealand.
So how can you reduce the risk of HIV-related heart disease? A very large study conducted by the US Food and Drugs Administration (FDA) found that people using protease inhibitors had slightly higher CVD risk than those using non-nucleoside reverse transcriptase inhibitors. The same study found a slightly increased risk for patients using abacavir-based treatments (including the combination of abacavir and 3TC, known as Kivexa) or ddI. This risk disappeared six months after patients stopped these drugs. Although changing medication may be an option for some people, for others it may not be so clear-cut. Some
patients may have very few treatment options left available to them. Also there is conflicting evidence that the combination drug Kivexa (due to its abacavir content) may also pose a slightly increased risk of heart problems. However, other studies contradict this evidence and show Kivexa to be one of the most popular and effective first line therapies in the HIV specialist’s arsenal at reducing and maintaining long term viral suppression, with a good profile of minimising long term side effects. The jury is still out on this point. It would be best if HIV positive people who take this combination, or other abacavir based treatments, not to be overly concerned, but should ask, in a routine consultation with their specialist for their advice and see if you are likely to have any of the indicators that might predispose you to possible heart risks from this drug. Otherwise, if a drug combination is working for you and causing you no problems - then why change? Do the benefits of being on a certain drug regimen outweigh the risks of not being on it? By changing you may find a new combination has more side effects than the one from which you changed. Also, it is important to tell your specialist about any other medications and supplements you are taking – whether prescription, recreational or non-prescription drugs; including alcohol consumption, vitamin or health supplements, inhalers and the like – as these can also have an unwanted effect on the effectiveness of your HIV medications and can create additional complications for you in the long term. The most important things you can do to reduce your CVD risk are to reduce the normal risk factors. Stopping smoking has the greatest impact. Change eating and exercise habits to reduce levels of cholesterol, keep excess weight in check, and discuss with your doctor/specialist any risk factors or concerns you may have for heart disease. Keep them monitored on a regular basis or when appropriate to do so. Check triglycerides and glucose (sugar levels). If necessary and in consultation with your doctor/ specialist discuss any appropriate changes to your treatment regimen.
For more information, see: Your Guide to Lowering Cholesterol with Therapeutic Lifestyle Changes (TLC) at http://emall.nhlbihin.net/ product2.asp?sku=06-5235 Sources Used: AIDS Infonet Fact Sheet 652 “HIV & Cardiovascular Disease”; About.com:HIV/AIDS “HIV & Coronary Artery Disease; TheWellProject “Caring for your heart” by Shari Margolese, December 2004.
TREAT YOURSELF RIGHT
reat Yourself Right is the title of a new resource produced by Positive Women, which provides upto-date information on health and wellbeing for women living with HIV or AIDS. The resource has been adapted for New Zealand audiences from a version produced in Australia by the Australian Federation of AIDS Organisations (AFAO) and the Australian National Association of People Living With HIV and AIDS (NAPWA). Women who have been recently diagnosed and those who have been living with HIV for many years will find value in the resource, as well as partners, friends and family members of women living with HIV. The resource also contains information suitable for those working with HIV positive people, such as sexual health clinics, nurses, midwives, social workers and GPs. Treat Yourself Right has been produced in the context of an increasing evidence base showing that gender differences can make a significant impact of the natural history of HIV infection, affecting treatment and the range of side effects experienced by women. There are also a number of issues specific to women, such as pregnancy, breastfeeding, cervical cancer and even menopause that highlight the need for a resource with information specific to women. The cover image utilises images of the four women from Positive Women’s recent destigmatisation campaign, and the booklet has been produced in a handy A5 size so that it can easily be popped into a handbag or bedside drawer. Funding to produce the booklet was provided by the New Zealand Lottery Grants Board. The funding has covered the costs for design and print of over ten thousand copies, meaning the resource will be available for free. A PDF copy will also be available to download from Positive Women’s website by the end of April. Over the next few issues, Collective Thinking will also publish extracts from Treat Yourself Right.
“TREAT YOURSELF RIGHT” - EXTRACT Being an HIV positive woman – an introduction You may be reading this because you have recently learned that you are HIV positive or you may have known your diagnosis for some time, even many years. Either way, you probably feel you need to know more about HIV, how it can be managed and what treatments are available for women. If you have only recently been diagnosed, you may be
feeling shocked, frightened, confused, angry or upset. These feelings are quite normal. Women diagnosed for many years may also continue to have these feelings. It may help you to know that there are women from all over New Zealand and from all walks of life who are HIV positive. There are women from many different cultural and religious backgrounds, young women, older women, married women, single women, heterosexual and lesbian women, women with children and women who want to have children, women who are students, women who are carers, women in all sorts of work, and women who are unemployed or retired. Some women in New Zealand have been HIV positive for over twenty years and still remain well and active. Nowadays more and more women with HIV are living longer, enjoying healthy and fulfilling lives, working, studying, having relationships and children, and making their own choices about treatment.
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Getting information Knowledge about HIV and AIDS and its management is increasing every year. New treatments are being trialled all the time, and there are now many drugs and therapies which have been shown to prevent, reduce or delay illness. The effectiveness of treatments means that not everyone who has HIV will necessarily get AIDS. Now that relatively effective treatment is available, it’s possible even after being diagnosed with an AIDS-defining illness to become completely symptom-free again and even to recover some lost immune function. Because there are so many benefits to be gained by managing your health, it is important that you start getting the right kind of information and support as soon as possible.
Men outnumber women as participants in clinical research, and most major HIV trials involve groups of people who are predominantly male. However there has been a concerted attempt to get more women into clinical trials and to conduct sub-studies of the women in major trials where possible, in case women respond differently to men. Some studies suggest that HIV may affect women differently, with possibly greater damage to the immune system at an earlier stage. Although other studies have not reached the same conclusions, you may have concerns about this research, or wish to discuss it further with your doctor. There is some evidence to show that HIV does affect women differently in some respects. This may be due to physical, social or psychological differences.
HIV may affect:
There are many people who can help you make decisions about the way you manage living with HIV. This list could include doctors and health professionals who have experience with HIV and AIDS, but may also include community organisations set up specifically to support HIV positive people. Other people living with HIV, especially other positive women, can be invaluable. It can help to hear how other women have dealt with issues such as relationships, sexuality, work, decisions about having children, telling people they are positive, treatment choices, and staying well.
H hormones H body weight and shape H your reproductive system H menstruation and menopause H your lifestyle and social circumstances
As a woman with HIV H You have the right to take control over your own health, and make your own decisions about how you live with HIV H You have the right to choose which treatments or therapies you use H You also have the right to refuse any treatments or therapies with which you do not feel comfortable H You have the right to a full and active sex life H You have the right to have children H You have the right to work, or make changes to the way you work H You have the right to high quality health care, support and counselling in an environment which is supportive, sensitive and free from discrimination
Does HIV affect women differently? The differences between men and women mean that there can be a different response to HIV and its treatment. It’s important that your doctor has this in perspective and keeps an eye on women-specific research.
Do women respond differently to HIV? In general, women’s lives differ from those of men in a number of ways. Women are often the primary carers, responsible for the emotional and physical wellbeing of others in their lives and often juggling these responsibilities with paid work.
What you are entitled to as a positive woman? While women remain a minority of people infected with HIV in New Zealand, as a positive woman, you are entitled to the same quality of and access to information, clinical services and support, as are HIV positive men. If you believe that you have received a lesser standard of service delivery in any of these areas, you are entitled to make a complaint. Extracted with kind permission of Positive Women from Treat Yourself Right. For a full copy of the booklet, contact: Positive Women Address: 1/3 Poynton Terrace, Newton, Auckland 1010 Phone: (09) 309 1858 Free phone: 0800 POZ TIV (0800 769 848) Email: firstname.lastname@example.org Web: www.positivewomen.co.nz
AARON MCDONALD On Friday 16 January, Aaron McDonald, editor of Collective Thinking, passed away at his home in Ashburton, surrounded by his family and friends. His memorial was held the following Thursday. Brent Skerten, a counsellor at the New Zealand AIDS Foundation’s South/Te Toka centre and close friend of Aaron’s, was invited by the family to deliver a eulogy. With kind permission of Brent and Aaron’s family, we have reproduced the text here.
Good afternoon everyone. My name is Brent Skerten. I knew Aaron as his counsellor, as his colleague, and (as was the way with Aaron) over time he became a valued friend. Aaron lived in two worlds and he kept these worlds very separate. Only towards the end of last year, as Aaron approached death, did these two worlds begin to collapse into one, and even then only to a limited extent and under duress. I feel it could be of value to allow each of these two worlds, finally gathered here today, to have a glimpse into the other, so that together we can see the combination that helped make Aaron a unique and remarkable man. Aaron chose to live the great majority of his life here in Ashburton and at the family home. He regarded this home as a place of refuge and sanctuary. He was adamant that it was here that he wished to die. Family was crucial to him. Unusually for a gay man, Aaron played a prime role, and at times the prime role, in helping raise two nieces, Kylie and Brittany, and a nephew Isaac. As with anyone in a childraising role, Aaron no doubt had his hair-raising moments, but you only had to witness him talking about, or to, one of these charges to see the enormous pride and love he brought to this role. In this context I want also to pay tribute to Aaron’s parents, Daphne and Doug, for the way that they stuck by Aaron through his difficult final months. From the desk at the bay window of his room in the family home Aaron performed his various roles for the taxi firm that Les has already told us about. Also on his computer Aaron maintained a network of contacts that enabled him to become probably one of the best informed people in New Zealand on issues to do with gay culture and HIV and AIDS, and to edit the quarterly magazine Collective Thinking, for people living with the HIV virus. Surrounding the chaos of that bedroom there were posters and banners and bookshelves that loudly proclaimed Aaron’s commitment and political activism for gay and HIV causes.
For while family was important to Aaron, so was community. This was his other world. And periodically Aaron needed face-to-face contact with this wider community. He would don a pair of dress jeans and one of his many fashionable and immaculate shirts and usually hitch a ride to Christchurch aboard the blood sample run from Ashburton to Christchurch hospitals. Often he would arrive at the New Zealand AIDS Foundation with food; a huge Black Forest Gateau was always a favourite. Not that Aaron ever ate much of it himself. His pleasure was in our pleasure. We also were a place of appreciative sanctuary for him. Aaron served in many voluntary roles for the New Zealand AIDS Foundation. One of the most valuable was as a public speaker on behalf of people living with HIV. At a time when medication makes it increasingly easy for people who are HIV positive to not make known their health status, an understandable decision given the stigma that must often be faced, Aaron had the courage to front up to various groups, frequently medical students in training, as someone living daily with the virus. His honesty and insights did a lot to break down stigma around both HIV and the gay lifestyle. In this we may find him hard to replace. But Aaron’s activism and community extended far beyond this. Visiting him in hospital last year, when it seemed he was near to death, I asked him what he would most like to be remembered for. He said he was most proud of his involvement in the activism that helped lead to homosexual law reform and later in presenting submissions to the parliamentary select committee on anti-discrimination legislation. I sometimes worried that Aaron used political and social issues as a way to evade his own. I also worried that he focussed too heavily on HIV and was pleased, after I enticed him to the city art gallery, that he wrote in his final editorial for Collective Thinking that he was hoping to
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cultivate wider interests. But within his specialist fields of interest I want to try and pinpoint perhaps the most subtle, rare and valuable of Aaron’s qualities. Aaron loved nothing more than a good discussion, and in his contribution displayed an intellect far greater than any harnessed by his formal education. He would listen and often reply in his southern drawl, ‘Yes, well I guess that’s right’, but always deliciously implicit was the unstated proviso, ‘but then again it might not be’. In this way he kept the discussion open and even-tempered as the issue was circled and explored from all angles in its rich intricacy. A phrase used yesterday by President Barack Obama in his inaugural address comes to mind: ‘The tempering qualities of humility’. Well, it is also one of the humbling ironies of being human that often even our best qualities contain within them a hook, a downside. And in the end we can’t always hedge our bets. Aaron chose to come off medication for his HIV. Truth to tell it emerged that secretly he had never really adhered to it fully. The medical complications compounded, so that at each stage reversing that decision become that much more difficult and onerous. At least towards the end Aaron was fully conscious of his decision,
the risks and ramifications, and had some clarity about his motivation. For those of us who may still find his decision puzzling and frustrating we need to remember we were not journeying in his shoes and it was clearly his decision to make. These are the rich complexities and responsibilities that go with being a human individual. When a person suffers a prolonged and debilitating illness the deterioration can leave an impression that obscures the best qualities of a person and we need to reach back a little harder to recapture the essential qualities that we want to keep as our lasting impression. There were many things that made Aaron’s life a difficult one. For example he battled bipolar mood swings, still one of the most puzzling and challenging of mental conditions. But Aaron did not only surmount such challenges: he used them to nurture qualities of warmth, courage, generosity, humility, careful reasoning and advocacy for others. Then he shared these qualities with his two worlds: family and community. In this way Aaron wove his own unique kete aronui, basket of knowledge that contains love, peace and the skills which benefit all living things. We can now lift this kete from Aaron and carry it on. For these are the qualities in him we would otherwise miss.
“You can’t resolve it [HIV/ AIDS] with the distribution of condoms… On the contrary, it increases the problem…” The wisdom of Pope Bendict XVI, April 2009
“While it is not up to us to pass judgment on church doctrine, we consider that such comments are a threat to public health policies and the duty to protect human life.” Eric Chevallier, French Foreign Ministry, in one of many worldwide protest responses to the above
“To make these remarks on a continent that unfortunately is a continent where 70% of people who have AIDS die, it’s absolutely unbelievable”
Michel Kazatchkine, head of the Global Fund To Fight AIDS, Tuberculosis and Malaria, calls for the Pope to retract his “unacceptable” statement
“In a perfect world, people would abstain from having sex until they were married or would be monogamous in committed relationships, the world isn’t perfect… neither is Pope Benedict’s pronouncement on the effectiveness of condoms in the battle against HIV/AIDS. The evidence says so.” The conservative Washington Times weighs in…
“The continued promotion of condoms and lube is essential to stop the global HIV epidemic, and remains the most effective strategy worldwide in fighting the disease. Public comment from such a world leader against condom use is dangerous and likely to lead to increased and preventable HIV transmissions.” New Zealand AIDS Foundation
Issue 72 h May 2009
SEX POSITIVE (2008) Director: Darryl Wein
t’s a bittersweet reality that Richard Berkowitz (pictured) has survived through the AIDS-related decimation of the 80s and 90s only to bear witness to his own invisibility as a pioneer and activist who arguably should be seen in the same league as Larry Kramer. The compelling and award-winning documentary Sex Positive traces Berkowitz’s beginnings as a young man and skilled journalist with a deep-rooted sense of social justice. AIDS couldn’t have emerged into urban gay centres in America at a worse time. A right-wing government and disturbingly outright homophobia helped fuel the epidemic, with TV air time given to junk scientist Paul Cameron (who advocated for the quarantining of AIDS patients) and fundamentalist preacher Jerry Falwell, who argued that AIDS was retribution from God for “promiscuous homosexuality”. Before the discovery of HIV, no-one knew how or why AIDS was spreading, only that gay men were being mostly affected. There were theories about a viral agent, but in conjunction with a sexual health doctor Joseph Sonnabend, and fellow AIDS activist Michael Callen, Berkowitz argued that the urban gay lifestyle itself was a factor: a combination of multiple partners, infection and re-infection with virulent STIs, and drug use playing havoc with the body and making it more susceptible to infection. These theories did not go down well, and saw Berkowitz and Callen labeled as “self-loathing”, and the Jerry Falwells of the gay community. His perceived stand against promiscuity saw Berkowitz being character assassinated by some, with his lucrative side career as an S&M hustler being dragged into the public domain. Ironically it was Berkowitz’s knowledge, gleaned from his career as a professional sex worker (recounted in some detail here), which made him infinitely qualified to comment – not that the gay press in New York would let him, even when he tried to respond to his critics. His 1982 booklet, How To Have Sex In An Epidemic, was a veritable bible of safer sexual practice, before anything was definitively known about the transmission of AIDS, before the discovery of HIV. Central to the advice given in the booklet was the adoption of condom use, something antithetical to gay communities at the time. In what will undoubtedly be seen historically as a shocking absolution of responsibility by government and perhaps
even the gay community itself, the life-saving booklet never received the wide distribution it warranted. Gay Men’s Health Crisis, one of the largest support organisations at the time, refused to bring the booklet to a wider audience because one section of it advocated for reduction in the number of sexual partners as a strategy. Berkowitz and Callen worked tirelessly over the next three years to try and obtain funding to turn the booklet’s messages into a campaign, to no avail. All the while, the infection rates and death toll continued to climb. By advocating for condoms, Berkowitz was seen as sexnegative by some. They didn’t understand how radical his message actually was: namely that it is safer to have sex in a back room with forty men using condoms than it is to have unsafe sex at home in your bedroom with a partner. Far from curtailing the sexual revolution, Berkowitz wanted gay men to continue to enjoy the freedoms they’d fought so hard for. Richard Berkowitz is not the first man in history to be a lone voice in the crowd, pilloried for giving advice that could have saved millions. Sex Positive shows a man scarred by the wounds of a life lived on the edge, but above all, it tells the story of a survivor. Sex Positive is playing in Auckland, Wellington and Christchurch during May and June as part of the Out Takes Reel Queer Film Festival. See www.outtakes.org.nz for screening times and booking information.
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May 17, 2009
St Andrew’s the Terrace Join communities on worldwide in the oldest against HIV/AIDS. Christchurch The movement Arts Centre Great Hall
Together, Auckland St Matthew-in-the-City 6.00pm We Are the Solution Hamilton Celebrating Age Centre 6.30pm
Sunday, May 17, 2009
Join communities worldwide in the oldest movement against HIV/AIDS.
Together, We Are the Solution