Issue 74 H DECEMBER 2009
TREATMENT THAT BITES WHY YOU NEED YOUR DENTIST
THE MAGAZINE for HIV+ people, their carers and supporters New Zealand ISSN 1170-2354
COLLECTIVE THINKING Issue 74 h December 2009
Editorial .................................................................................................... 1
Local News News from around Aotearoa ............................................................. 2 International News News from around the globe . .......................................................... 6 Treatment that bites Why you need your dentist ............................................................. 8 Report Unravelling the stigma of women with HIV .............................. 12
Update Employment and disclosure . ........................................................... 14 Research New Zealand’s HIV epidemic among gay and bisexual men...... 16 Opinion Coming out all over again ................................................................ 18
Positive People’s Reference Group How you can change services for positive people................. 20 Obituary Glenn Mills .............................................................................................. 21 Positive Women Treat Yourself Right ........................................................................... 22
Free Sexual Health Screenings Including HIV and Syphillis............................................................... 24
Collective Thinking, the magazine for HIV+ people, their carers and supporters, is published quarterly, by the New Zealand AIDS Foundation (NZAF).
LETTER FROM THE EDITOR Dear Readers, Over the past few months there have been a number of overseas developments that are likely to be of interest to people living with HIV in New Zealand. In September, it was announced that a major breakthrough had been made in the search for an HIV vaccine. The story was overhyped by the press – the vaccine provided less than the hoped for levels of protection. The multiple strains of HIV make it unlikely that a single preventative vaccine will ever be produced. However, the September announcement seems to have sparked a new optimism in wider scientific and medical communities that production of vaccines that target these individual strains may be possible in the not-too-distant future. Another item of global interest likely to make some impact in this country was announced in October. At long last, the United States government decided to remove discriminatory provisions in its immigration laws that denied entry to people living with HIV - or indeed even stop overs - without a special waiver. Even if granted, this waiver obliged the carrier to have a very visible “HIV” sign stamped in their passport. Ironic, as the US has one of the highest numbers of homegrown HIV cases in the Western world. In New Zealand, discrimination against people on the basis of HIV status has been illegal since 1993. It is particularly satisfying to think of the positive impact that human rights legislation has made to the lives of HIV positive people, especially in terms of reducing stigma. Some of the articles in this issue will deal with how discrimination against HIV positive people has been declining over the years. We’ll look at a number of areas including the accessing of dental services, employment, travel restrictions and insurance. However, discrimination has not disappeared altogether, and in some instances it may simply be more indirect or more subtle. Have you ever experienced making an appointment at a dentist and inexplicably being kept waiting until no other patients are left in the surgery? There could any number of logical reasons why this could be; the dentist could simply be running overtime, patients with more urgent priorities may need to be seen first and the like. However, if you notice a constant pattern of behaviour over time whenever you go to a particular dentist, then it may be time for you to start asking questions.
Jack Dragicevich Co-editor email@example.com
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 Directors. 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 persons living or dead is purely coincidental. Publication of any letters, articles and photographs is at the discretion of the publishers and the right is reserved to withhold, alter, edit and comment on any article, letter or advertisement published. The list of subscribers is confidential and is not sold, rented or leased out to anyone at any time.
Note: The views expressed in this editorial are the personal views of the writer and should not in any way be construed as representing the official views of the New Zealand AIDS Foundation (NZAF).
COLLECTIVE THINKING Issue 74 h December 2009
LOCAL LOBBYING FOR US IMMIGRATION LAW CHANGE
DIY HIV TEST KITS SPARK CONTROVERSY
The recent decision by the US government to lift a ban on people living with HIV from entering the country has been welcomed by the NZAF, one of many organisations worldwide that lobbied the Centers for Disease Control (CDC) for a law change. From January 2010, New Zealanders who have been barred from entering the US because of their HIV status will be able to travel to, stay in and apply for visas to reside in the US. “We’re delighted at the decision to lift the ban, which has been a long time coming”, says Rachael Le Mesurier, NZAF Executive Director. “This travel restriction has widely contributed to ongoing stigma and discrimination against people living with HIV. With it lifted, New Zealanders living with HIV are free to travel to the US with their partners, friends, family and wh nau.” The NZAF’s submission to the CDC in August asserted that protecting the human rights and dignity of people living with HIV leads to the most effective response to the HIV epidemic. “In lifting this ban, the US government is making a firm and bold statement that it acknowledges we all have a part to play in the development of an effective global response to HIV,” Le Mesurier says. In 2005, New Zealand introduced mandatory HIV testing for people applying for residency and for visas for longer than 12 months. The NZAF understand that currently people living with HIV who are staying for less than 12 months do not need to declare, or undergo a test for, their HIV status. However, Immigration New Zealand can request a certified HIV test from seasonal employment visa applicants from countries with a high prevalence of HIV.
The NZAF is deeply concerned about the impact of rapid-test HIV kits being sold directly to the public through adult shops. The NZAF strongly supports professional HIV testing with the provision of preand post-testing counselling provided by the NZAF Regional Centres, local Sexual Health Services, or GPs. The rapid test used by the NZAF , Uni-Gold from Trinity Biotech, was approved several years ago by the US Food and Drug Administration, reviewed by the World Health Organisation against other FDA approved rapid tests for HIV and found to one of the most accurate and reliable tests available alongside the Determine test from Abbott. These tests are widely used around the world by health professionals for the detection of HIV. The NZAF believes that any tests used in this detection process must be proven in the scientific arena. The NZAF was unable to confirm the accuracy or efficacy of this DIY test however the distributers for Uni-gold and those for the Determine test (the two best testing kits in the world) only sell to health professionals, and never to end users. Eamonn Smythe, NZAF Director Positive Health Services urgently requested evidence of the reliability of the test from the manufacturer of the DIY tests who is based in Singapore but received no response. Smythe says “there is ample research, anecdotal evidence and the personal experience of every person living with HIV that proves that a positive test for HIV is a shocking, life-changing and often deeply traumatic experience.” Research shows that effective and professional testing and therapeutic services can achieve the following goals: l reduce the further spread of HIV (an HIV prevention goal); l limit the potential trauma that a positive diagnosis may cause; l assist any person with a predictive positive result through the confirmation process l educate anyone taking an HIV test (positive or negative) about the relative risks of different sexual activities and safe sexual behaviour l provide more information and education to any client with a positive result in order not only to prevent further spread, but also to facilitate the empowerment of the client l encourage the provision of follow-up support and enable a person living with HIV to explore the options available and support them through events such as disclosing their HIV status to their partners, family, friends and employers; and l refer clients to other professional services as needed such as mental health services, drug and alcohol service providers, etc. Concern has also been raised that some may use the test before having sex, with a negative result giving a green light for condoms not to be used – despite the fact that rapid tests are testing for an antibody response that will be present in 3 months (90 days) in 80% of cases but not all cases, which means there is a significant risk of false results. The importer, Head Start, told gayNZ.com that it had decided not to sell its product direct to sex-on-site locations as they “were not an appropriate location for the sale of this product” and it did not wish to encourage “testing by individuals for the purpose of a sexual encounter”. However, it said it couldn’t take responsibility for people misusing the test in such a way. Smythe counters that “HIV testing will not protect anyone against HIV, only using condoms and lube for sex every time will. Adult shops are an appropriate place to purchase vibrators, nipple clamps, crotchless panties and other toys for sex. Adult shops are not appropriate places to purchase medical testing kits for HIV, or indeed any STI. The NZAF believes that most sex-on-site venues, adult shops, retailers and online outlets in New Zealand are responsible and we strongly recommend that they do not stock these testing kits.”
ANAL CELLS MAJOR RISK IN HIV TRANSMISSION
Anal transmission of HIV is associated more with the presence and concentration of vulnerable cells, rather than low level physical damage associated with anal sex, according to a new scientific review. Presented by NZAF Research Director Tony Hughes at the 21st New Zealand Sexual Health Society conference in October, the review examined why anal intercourse poses a uniquely high risk of HIV transmission. It has been commonly believed that small tears or bleeding were mainly to blame for the high HIV infection risk of anal sex, but evidence shows it is more likely to be caused by biological factors, such as the presence and concentration of cells which are particularly vulnerable to HIV infection. NZAF Senior Researcher Dr Peter Saxton also shared new research findings on which groups of gay men were less likely to use condoms for casual sex and who was less likely to test for HIV. He also vigorously challenged the New Zealand public health system to improve monitoring of sexually transmitted infections among gay and bisexual men in this country. “Without routine surveillance data we can’t identify outbreaks among gay and bisexual men aren’t able to respond in a timely way. You can’t manage what you don’t measure,” he said.
HIV POSITIVE SPEAKERS WANTED The NZAF is currently seeking people living with HIV who would be interested in becoming part of a Positive Speakers Bureau. Full training will be provided. Those interested should contact Eamonn Smythe at NZAF National Office in Auckland or the Regional Manager at your local NZAF Regional Centre. See www.nzaf.org.nz for contact details.
HIV SPECIALIST Dr RICHARD MEECH RETIRES After a quarter of a century specialising in HIV and AIDS, noted clinician Dr Richard Meech has retired from the Hawkes Bay District Health Board. Dr Meech’s contribution has been recognized locally and internationally. A specialist in venereology, Dr Meech was a key adviser to the Ministry of Health in the early days of the AIDS epidemic, and chaired the Ministry’s AIDS Medical and Technical Advisory Committee. He went on to serve as a consultant to the World Health Organisation in 1995. Dr Meech was also made an NZAF Life Member in recognition of his work in November. (See article later this issue).
CANDLELIGHT 2010 THEME UNVEILED
The Global Health Council has announced the theme for the International AIDS Candlelight Memorial 2010: “Many Lights for Human Rights”, which was decided on by the GHC Board during its annual meeting in Accra earlier in the year (see report this issue). “We feel this theme captures the collective movement of the Candlelight Memorial to move to action in the drive for access to treatment, care and prevention, in addition to the elimination of stigma and discrimination. It also aligns with the UNAIDS 2009 World AIDS Day theme of ‘Universal Access and Human Rights”, said the council in a statement. The theme was announced globally on World AIDS Day. The GHC hopes that announcing the theme early will help build momentum in the months leading up to the Memorial on 16 May 2010. Eamonn Smythe, NZAF Director of Positive Health Services and Regional Co-ordinator for Candlelight in the Oceania region is hoping for more events to be run next year, both in New Zealand and the Pacific. “If you are interested in running a community candlelight event here in New Zealand no matter how big or small, then please contact Wayne Otter at the NZAF Burnett Centre on (09) 309 5560 who will be pleased to advise you”, says Smythe.
COLLECTIVE THINKING Issue 74 h December 2009
EXPRESSIONS OF INTEREST SOUGHT The New Zealand AIDS Foundation (NZAF) is New Zealand’s leading HIV prevention and professional support organisation. NZAF Positive Heath Services are looking for a qualified, professional counsellor or psychotherapist to extend our services on a contract basis. NZAF Positive Health Services seek proposals from applicants with passion, energy, and commitment who are located in the following places: Northland: Kaitaia, Kerikeri, Waikato: Hamilton Bay of Plenty: Tauranga, Thames, Whakatane Taranaki: New Plymouth Hawke’s Bay Gisborne Nelson: Nelson Canterbury: Timaru Lakes District: Queenstown Southland: Invercargill A Counsellor or Psychotherapist is specifically sought to provide counselling or psychotherapy services upon referral, and to conduct therapist-led rapid testing for HIV and syphilis. Full NZAF FASTest (Free Anonymous Simple Test for HIV) training will be provided. Client needs will be addressed in a manner which is consistent with the standards of care available to those accessing the NZAF Regional Centres. Essential skills include: a tertiary Counselling or Psychotherapist qualification, membership of the NZ Association of Counsellors, or NZ Association of Psychotherapists. Applications from M ori, African and/or people living with HIV are especially welcome.
For more information about the NZAF please go to www.nzaf.org.nz or contact: Wayne Otter NZAF Northern Regional Manager 09 309 5560 firstname.lastname@example.org Laura Jones NZAF Central and Southern Manager 04 381 6640 or 03 379 1953 email@example.com Please forward your Expression of Interest, along with your professional details and any supporting information by 5.00pm, 11 January 2010 to: Robert Street Executive Assistant New Zealand AIDS Foundation PO Box 6663, Wellesley Street Auckland 1411 p | +64 9 303 3124 e | firstname.lastname@example.org
NZAF INVIGORATES SERVICES FOR WAIKATO PEOPLE LIVING WITH HIV The NZAF recently announced that HIV testing, counselling, psychotherapy and support services in the Waikato region will be extended and enhanced through the use of contracted services across the region. NZAF Te Puawaitanga o te Ora, the NZAF Regional Centre in Hamilton, will be closed but the same NZAF services will be available, upon referral, via qualified contract counsellors or psychotherapists across the Waikato. The NZAF Positive Health Services staff are located in NZAF Regional Centres and in other areas, and are made up of therapeutic staff who are qualified professionals in the area of HIV. They have over twenty years experience working with individuals, couples, families and whānau. All services accessed are free, independent, and confidential. The change comes as the numbers of people accessing NZAF services in the Hamilton office have been decreasing. “This move supplements the existing services that are offered by the NZAF centres in Auckland, Wellington and Christchurch and by our team of contracted therapeutic staff in Whangarei, Rotorua, Palmerston North, Wanganui, Napier, Greymouth and Dunedin,” says Eamonn Smythe, NZAF Director Positive Health Services. “This way we are able to offer our HIV and syphilis FASTests, counselling and professional support services to a greater amount of people across a much wider geographical distance.” The NZAF warmly welcome applications from qualified, professional counsellors or psychotherapists from across New Zealand. Please see page four to find out how you can submit an Expression of Interest. Opportunities exist in: Northland: Kaitaia, Kerikeri, Waikato: Hamilton Bay of Plenty: Tauranga, Thames, Whakatane Taranaki: New Plymouth Hawke’s Bay Gisborne Nelson: Nelson Canterbury: Timaru Lakes District: Queenstown Southland: Invercargill
COLLECTIVE THINKING Issue 74 h December 2009
New Life-Saver for HIV Patients: Transplants
Wisconsin State Journal (Madison) (7.10.09): David Wahlberg HIV is no longer an automatic reason for denying organ transplantation to patients who are otherwise candidates for the surgery. Since 1989, more than 500 transplants have been performed in patients living with HIV in the United States, according to the United Network for Organ Sharing. Doctors no longer believe the immunosuppressants that transplant recipients must take to prevent organ rejection are too dangerous for patients living with HIV. Recent research suggests that if HIV is well-managed, the addition of immunosuppressants appears to have no negative effects. Most organ transplants in people living with HIV have been done during the past five years, and virtually all were kidney or liver procedures. According to a National Institutes of Health study of 275 transplant patients living with HIV, 94% of kidney transplant patients were still alive three years after the surgery. 83% had functioning kidneys at that time, while some had to return to dialysis. Researchers said these outcomes are comparable to those for patients without HIV. However, HIV does appear to produce poorer outcomes in liver transplant patients, particularly if the patient also has hepatitis C. Outcomes for patients living with HIV with hepatitis B appear to be comparable to those of HIV negative transplant patients.
Law Harming HIV Prevention Sydney Star Observer (20.10.09):Andie Noonan The criminal prosecution of persons who have transmitted HIV is hurting HIV prevention efforts, says the National Association of People Living with AIDS (NAPWA). Since 1993, 22 criminal cases have been brought on grounds of HIV exposure in Australia. Almost half of these have occurred in the past three years. “A major problem in Australia is we’re dealing with different jurisdictions, and criminal prosecution is totally
removed from any sort of public health discourse,” said Robert Mitchell, NAPWA’s president. “We believe in the first instance these people should be supported and counselled to try and help them change their behaviours criminal sanctions will not change people’s behaviours.” “The main concern for us is the stigma of discrimination that this engenders for people living with HIV, in [making] them feel they’re being seen as perpetrators and guilty,” Mitchell said. “It impacts at a personal level: people get fearful [of] knowing their status because they fear it may be used against them in future prosecution. They’d rather not know their status, and that’s a very bad outcome because it means people do not know their HIV status and are not being tested for HIV, which drives down testing rates.”
Don’t Flag on Support, AIDS Chiefs Say Agence France Presse (19.10.09):Richard Ingham The financial crisis is constraining aid spending among donor countries, but scaling back international HIV efforts now would be unwise, experts say. “The financial crisis is of course affecting, and clearly affecting, the capacity of donors to fund international programmes on [HIV],” said Michel Kazatchkine, Executive Director of the Global Fund to Fight AIDS, TB and Malaria. Kazatchkine said he is concerned especially for next year, when a three-year round of fundraising ends. “2010 will be a key year when it comes to funding global health and funding AIDS prevention, treatment and AIDS science,” he said. “The risk is that we lose momentum, that we lose the trust and that we lose the hope that we have generated in an unprecedented movement in global health in the last eight years.” Peter Piot, former UNAIDS chief, supported the comments. “It is very ironic, [in] that it comes at a time when we have real results - four million people on antiretroviral therapy in lower and middle-income countries [and] achievement in HIV prevention. Now is not the time to decrease efforts, because the bill is then going to get higher and higher. It’s a matter of pay now or pay later. We know that there is money. The bailout of banks has shown that there is money, there is mega-money when it is needed.”
“Nearly One in Three People with HIV Do Not Know: EU” Agence France Presse (26.10.09) In a call for Europe to continue fighting HIV, the European Commission warned on Monday that almost one in three people with HIV do not know they are infected. Commission figures indicate that the number of people living with HIV in the 27 EU nations and neighbouring countries rose from 1.5 million in 2001 to 2.2 million in 2007. “We need to encourage people to take responsibility for themselves and their partners by talking about and practicing safe sex and going for HIV testing,” said EU Health Commissioner Androulla Vassiliou. “We need to continue the political momentum in the fight against HIV/ AIDS.” In 2007, 50,000 new HIV cases were diagnosed in the EU and its neighbours.
Discreet Sex Education Breaks Indian Taboo Agence France Presse (12.10.09):Rupam Jain Nair Many private schools across India are now offering lessons on sexual health – lessons that traditionalists say violate Hindu culture. While such lessons are offered to these pupils discreetly, millions of students in government schools will receive no sex education, and political controversy has made some state governments less than keen to introduce it. “India allows teenagers to learn English and other European languages, devour pizza, burgers, wear skimpy clothes and dance to English music,” says Rubina Hussain Sheikh, a teacher in Delhi. “These Western influences are welcomed. So why is talking about sex in schools not accepted?” Sheikh teaches about forty 15-year-old boys and girls in her class on sex education. She shows her students, who asked not to be named to avoid publicity, drawings of how an adolescent body develops, and graphics detailing how HIV and STDs are on the rise in India. Slides displaying material from the ancient Indian erotic text Kama Sutra are also presented. Students are hesitant to ask her questions,
Sheikh said, but many feel the course helps to dispel their misconceptions. “I had no clue about sex, pregnancy and the precautions required to protect oneself,” said a 15-year-old student at the school. “ Still, some would rather suppress such information. “If implemented, [sex education] would have adverse effects on young minds,” says Swami Nityanand, a Hindu priest in Delhi and senior member of the conservative Vishwa Hindu Parishad organisation. In 2007, his followers burned school texts that discussed contraception and STDs and asked the government in Gujarat to drop chapters on reproduction from science textbooks. Ravi Kumar Tandon, a Delhi doctor who specialises in sexual issues and who worked on a survey of about five hundred rural and urban teens in India said, “Many rural girls thought a man’s touch was enough to make them pregnant, while the urban boys said they access the internet and watch pornographic videos to understand sex.”
“Africa Should Protect Children from AIDS – Machel” Reuters (22.10.09):Peroshni Govender More must be done to protect Africa’s children from HIV, and the continent’s leaders should change their priorities regarding national budgets, according to the wife of former South African President Nelson Mandela, Graca Machael. Machael’s comments were made at the launch of the Campaign to End Pediatric HIV/AIDS (CEPA). “I am not really convinced that some of the budgets we have for defence are absolutely necessary. There is a need to redirect resources from defence. For me the priorities are health, education, water supply, agriculture.” CEPA aims to work with governments and communitybased organisations to speed the provision of drugs to prevent mother-to-child HIV transmission. Its goal is to reach at least 80% of at-risk children, more than double the current proportion accessing preventative treatment, by 2012. (Source Used : CDC HIV/Hepatitis/STD/TB Prevention News Update)
COLLECTIVE THINKING Issue 74 h December 2009
TREATMENT THAT BITES WHY YOU NEED YOUR DENTIST By Chris Banks
here are plenty of horror stories from people living with HIV about discrimination at the dentist. From the subtleties of being exclusively booked for appointments at the end of the day, through to entering a treatment room to find everything covered in plastic, it would seem that even trained medical professionals are not immune to ignorance about the infectiousness of HIV. Most of the stories you hear of this kind are historic, having occurred more than ten years ago. We’d like to think that things are getting better, but the occasional case pops up which gives pause for thought. Body Positive recently had contact with an Auckland woman who went to a new dentist, obligingly filled out the new patient form, and disclosed on the form that she was HIV positive. She was taken through to the treatment room, and sat in the chair. Everything was going well until the dentist read her form, clapped eyes on her HIV status, and promptly ejected her from the surgery. We’d like to be able to tell you the name of this dentist, but the woman concerned is too embarrassed
and humiliated to take her case further. Body Positive were willing to take a complaint to the Human Rights Commission – such treatment is not only dehumanising, it’s illegal. Many people living with HIV already avoid the dentist for fear of a scenario like the above occurring. Others who struggle financially will put off seeing a dentist because of the cost. If either of these scenarios sound familiar to you, it’s worth having a serious rethink because the dental needs of people living with HIV are greater than those of the general population, for a number of reasons. Oral concerns for HIV positive people According to a study carried out by the US Department of Health and Human Services 80% of people living with HIV will develop at least one oral condition at some stage. There are a number of effects that HIV can have on the state of your dental health. These changes happen because of the weakened immune state caused by HIV, and also the side effects of antiretroviral medications. Dry mouth is the most widespread side effect of medication. Dry mouth causes problems because saliva
washes away bacteria, as well as food and sugar from teeth. Tooth decay, gingivitis, thrush (yeast infections) and gum disease are conditions that you are more likely to develop if you suffer from dry mouth. Thrush occurs throughout the mouth, and sometimes in the throat. It appears as white patches which, when wiped away, leave a red surface. Pain, loss or distortion of taste, burning and discomfort are symptoms associated with thrush. Tumours like Kaposi’s sarcoma still develop in people with more severely-compromised immune systems, and in around 15% of AIDS related cases, the tumours will appear in the mouth as red or purple patches. The unfortunately named hairy leukoplakia is another common condition, which is often without syptoms. If symptoms do appear, they take the form of white, streaky lesions which appear on the sides of your tongue, and sometimes in other parts of the mouth. Hairy leukoplakia is painless, does not cause any other symptoms and does not require any treatment. Both Kaposi’s sarcoma and hairy leukoplakia occur significantly less often since the use of antiretroviral
medications became widespread in New Zealand in the mid 1990s. “Oral conditions seen in association with HIV are still clinically significant,” wrote David A. Reznick in the December 2005 edition of the Oral Manifestations journal. “A thorough examination of the oral cavity can easily detect most of the common lesions. An understanding of the recognition, significance, and treatment of said lesions by primary health care providers is essential for the health and well-being of people living with HIV.” Reasons to be open with your dentist You are not obligated to disclose your HIV status to a dentist, but complications like those described above show there are good reasons for being open. Your dentist has an important role to play in your overall health as they are in a position to recognise opportunistic infections that you may be at risk of developing. The enhanced care you should expect from a dentist who knows your HIV status extends beyond regular checkups. For example, prescriptions are available for saliva substitutes or fluoride rinses if you suffer from dry mouth;
COLLECTIVE THINKING Issue 74 h December 2009
and antibiotic mouthwashes before and after treatment. Oral appearances of HIV-related symptoms can be a primary indicator that the virus is progressing in your body, and/or that treatment is failing. On noting these, your dentist should refer you to your doctor or clinician for viral load and CD4 count tests. Overall, oral lesions have been seen less since the introduction of antiretroviral medications but they still are seen frequently enough for all members of your dental healthcare team to need to be able to recognise, manage and address their significance. Because of the effects of HIV and antiretroviral medications on your blood counts, your dentist should also ask you for copies of your most recent blood tests. This is so she or he can be aware of conditions such as a low platelet count, which affects the ability of your blood to clot. Try not to be intimidated by patient questionnaires which ask for information about medical conditions or
medications; in order to provide you with the best possible care, your dentist needs to know this information. Your treatment should be enhanced, not compromised, by disclosure. The New Zealand Dental Association has a code of practice which sets out guidelines around “transmissible major viral infections.” Placed in this category are hepatitis B and C, and HIV. The code clearly emphasises that a patient “must not be refused care because of their infection or seropositive status unless other appropriate arrangements are made by the dentist for the care of that individual.” Definitions of the above infections are listed in the Association’s infection control procedures. While the serious consequences of HIV infection are noted, “transmission in the dental surgery environment is extremely unlikely because of its low prevalence in New Zealand and relatively low infectivity.”
5 STEPS TO ORAL HEALTH
Taking responsibility for your own health, including oral health, is always a good idea. Here are five things of which the trusty school dental nurse would have approved:
Brush your teeth Start from one side of the mouth and move across to the other, and aim to take. around two minutes. Brush in a circular motion, and don’t forget the back teeth . and your tongue. Soft bristle brushes are recommended by dentists, as well as . toothpaste that contains fluoride. Brush daily.
You should floss after meals and before brushing your teeth. Use about 45cm worth, winding the bulk around your middle fingers and leaving 1-2cm to work with. Slide it gently – don’t force it – between your teeth and work your way up to the gumline. Use a new section of floss for each tooth. It is normal to experience of light bleeding when you first start to floss; this should lessen once your gums get used to the process. If it doesn’t, speak to your dentist.
Mouthwash Mouthwash with fluoride kills the bacterium that causes gum disease and cavities. After you’ve brushed and flossed, use about 20ml of mouthwash. Gargle for around 45 seconds without swallowing, then spit it out. Don’t rinse your mouth out straight away, as the cleansing ingredients in the mouthwash continue to do their work after you’ve finished.
Regular dental visits Checkups every six months are recommended, more frequently if your immune . system has become particularly weakened.
Stop smoking You’ll have heard this already but it has particular relevance for oral health. Smoking is associated with oral cancers which have poor prognosis compared to other types of cancer. Limiting alcohol intake is also recommended.
Affordability If affordability of dental treatment is an issue for you, there are services available which can help. The NZAF administers the Wellness Fund which provides small grants of up to $500 per annum for a range of health-related costs including dental work. The Wellness Fund is designed for people on low incomes, so to access it you will need a Community Services Card issued by Work and Income. Other options are available if you require more expensive dental work. Body Positive provides a Work and Income satellite service on the last Monday of every month, where you can discuss financial assistance you may require in a safe and secure environment. Interest-free loans to the value of $2,500 are available if you are on a benefit. A weekly repayment scheme that fits within your budget can be arranged, and Body Positive can facilitate negotiation with Work and Income on your behalf. All that is needed from you is a quote for the dental treatment you require. If you don’t qualify for any of the above schemes but are still on a low income, it’s worth talking to your dentist about a payment plan. Some dentists are more flexible about this than others. When Terry* was in extreme pain with an abscess, the first dentist he went to did an assessment and presented him with a quote. “I was told that I had an abscess, they gave me a quote and said come back in when you’ve got the money,” he recalls. “I said, hang on – I’m in extreme pain here. So they gave me some antibiotics.” That night, the pain was still present. “I’d been at a conference. The pain was so bad that I started sweating, and had to lay on the ground,” he says. Terry went to another dentist, who despite being full up with appointments was incredibly accommodating. “He said I’ll fit you in between appointments.” That dentist was Nic Whyte, one of a short list of Auckland dentists that Body Positive recommend to their members. “I got a statement through for the work done, and we worked out a payment plan over a couple of months,” Terry says. You should consider your dentist as an important part of your healthcare team, similar to your HIV specialist, GP and counsellor. Terry says he’s never experienced any discrimination from dentists because of his HIV status, but if you should ever encounter a situation where you are refused treatment, remember your rights. Your dental health is too important to compromise. n * Names in this story have been changed for privacy reasons.
WHAT IF YOU’RE AN HIV POSITIVE DENTIST? At the height of the AIDS panic in the 1980s, a dentist living with HIV in the US state of Florida became linked to the infection of six of his patients. Despite an investigation by the Centers for Disease Control (CDC), the mystery of exactly how this occurred has never been solved. Although the patients in question were found to be infected with the same strain of HIV as the dentist, the late Dr David J. Acer, this alone did nothing to explain how blood-to-blood transmission may have occurred. Critics of the CDC investigation claim that other risk factors for HIV infection in the six patients were never fully investigated. Despite routine sterilisation of instruments at dental surgeries and the requirements to wear surgical masks and gloves, the furore caused by this case has lived on, fuelled by public ignorance around how HIV is actually transmitted. In the UK, dentists who are diagnosed HIV positive must cease practising by law. In an opinion piece for the October 2006 issue of the British Dental Journal, David Croser argued that this is an unfair double standard. “The use of barriers is a well recognised technique that works both ways: protecting the dentist from patients, and patients from the dentist. Unless, that is, you have HIV or are known to carry the hepatitis virus and want to work as a dentist in the UK, where dentists diagnosed with these conditions are not allowed to treat patients,” he wrote. “Suddenly the barriers that are normally effective are no longer acceptable in the face of these bloodborne infections.” In New Zealand, HIV positive dentists or assistants are not prohibited from practicing, nor does their status have to be disclosed to patients. According to New Zealand Dental Association guidelines, “a dentist, like any other person, has a right to privacy and confidentiality.” However, “all dentists who may have been exposed to HBV [hepatitis B], HCV [hepatitis C] or HIV through personal risk behavior, non-occupational exposure to blood products or occupational accidents have a professional and ethical responsibility to seek testing in order to ascertain their own serological status. Staff should be strongly encouraged to follow the same procedures.”
COLLECTIVE THINKING Issue 74 h December 2009
UNRAVELLING THE STIGMA OF WOMEN WITH HIV
hirty three million people around the world live with HIV, almost half of them women. Jane Bruning has been living with HIV for 21 years and in September graduated from Unitec with a Master of Social Practice, exploring the impact of stigma on women in New Zealand who have HIV. Despite 25 years of public education, the stigma attached to carrying the HIV virus is still deep rooted, Bruning discovered over five years working as National Coordinator at Positive Women Inc, a peer support organisation for women and families living with HIV. Bruning heard one story after another grounded in shame, fear, depression and isolation and decided to study the origins of these internalised feelings. The innovative research method underpinning Bruning’s thesis is called Cooperative Inquiry, and was developed by John Heron in 1996. It involves two or more people researching their own experience in alternating cycles of reflection and action. Face-to-face and collaborative, the method allows those involved to be self-directed co-participants in creating new knowledge, rather than validating previous theories.
Four themes emerged: internalised stigma, disclosure, selfesteem and unacceptable behaviour, and shame and fear of being judged. Literature reviews discuss stigma in terms of ‘spoiled identity’, the blaming of people judged unworthy of social investment. “Many women say ‘I am HIV’, rather than ‘I’m a person living with HIV’,” says Bruning. “They wear it as an identity. The stigma is then reinforced by society. Those with cancer are more able to ask for support than those with HIV as it doesn’t carry the same stigma.” Irrational fears of accidentally transmitting HIV are internalised. “One woman stopped working because of her fears, another took her own mug to work. Another would break off a piece of her biscuit and give it to her child rather than let the child take a bite of it. I couldn’t find any literature for irrational fears held by people who live with HIV.” says Bruning.
Challenges and limitations
The group process “It took three months to get four other participants signed up,” says Bruning. “They initially said yes to help me out but the biggest surprise came when they began to realise how deeply their everyday lives were affected by stigma.” The five women met each week for five weeks, with Jane positioning herself as a research subject and allowing the participants to internalise the research method, to make it their own. Talking about the nature of stigma at the first session led to immediate action. “The teenage daughter of one of the women had a teacher in her sex education class at school say that HIV could be transmitted through sneezing and that people with the virus only live 10-15 years,” says Bruning. “She didn’t feel
comfortable about correcting the teacher’s misinformation because it would have led her classmates to question her knowledge of the subject. She went home and said, ‘hey Mum, guess what? You should be dead by now’.” Women in the group contacted schools, Family Planning and Auckland Hospital to investigate the accuracy of information.
While Cooperative Inquiry eschews existing literature and mainstream analysis, the academic framework of a Masters degree requires a literature review, which Bruning based in feminist theory. Critical analysis was replaced by reflective analysis. Supervisors Dr Helene Connor and Dr Ksenija Napan brought a balance of approaches to constructing the thesis. “They have different ways of thinking – on the spectrum of conservative academic to liberal minded,” says Bruning. “When you work with two supervisors they sometimes have contradictory approaches. Differing opinions can be enriching and complementary. We frequently had robust discussions and dialogue as the three of us worked together to decide how to structure and strengthen the thesis.” Less talk and more action by government, communities and individuals lie at the heart of making a positive difference to destigmatising HIV. While five weeks was insufficient time to develop a feminist-grounded theory from the consciousness-raising process, Bruning’s sevenmonth follow up determined that transformative change had occurred in every woman’s life. Some had returned to work or study, others were engaged in further counselling. Actions were also identified for Positive Women to follow up. Founder of the Cooperative Inquiry method, John Heron, read Bruning’s completed thesis. “It seems to be very well done, with methodological finesse, including an honest appraisal of the
BUSY TIME FOR POSITIVE WOMEN It’s been a busy few months for Positive Women, with Jane Bruning’s groundbreaking thesis capturing the attention of the mainstream media, and international recognition for the peer support group’s work. An article on Bruning’s thesis appeared in The Aucklander and three other regional papers, and Bruning was interviewed for Radio New Zealand’s Nine To Noon programme. Positive Women have been offered a space on the UNAIDS NGO Consultation Group, and asked to contribute a chapter to a new book on global HIV and AIDS policies and their effects on women. The authors are professors at Cornell University and Binghamton University in the United States. Josephine Allen Ph.D. is Professor Emerita in the Department of Policy Analysis and Management at Cornell University and Professor of Social Work at Binghamton University in the College of Community and Public Affairs. Andrea Parrot Ph.D. is a Professor in the Department of Policy Analysis and Management at Cornell University and also holds an appointment as a Clinical Professor of Psychiatry at Upstate Medical University in Syracuse, New York. “It is our belief that HIV policies have significantly disproportionate, serious, and sometimes fatal consequences for women globally,” say the authors. “We propose to explore the current HIV situation for women, policies that are effective in decreasing the impact of HIV on women, as well as policies that contribute to the prevalence and severity of HIV for women.” The book will investigate HIV related issues for women in various parts of the world and will examine policies that contribute to successful prevention, care and treatment of people with HIV and AIDS.
accommodations made in adapting the inquiry to meet academic requirements, and with a very encouraging account of the transformative outcomes of the inquiry,” he says. “Really very worthwhile, liberating and radical.” “Stigma and Women Living with HIV” can be read at the Unitec library. For more information contact Dr Helene Connor, email@example.com n This article first appeared in Advance, Unitec’s research magazine, Summer 2009.
COLLECTIVE THINKING Issue 74 h December 2009
EMPLOYMENT AND DISCLOSURE By Jack Dragicevich
n the current economic climate and with concerns about job security, it is little wonder that people living with HIV wishing to return to work feel increasingly anxious and fearful of stigma and prejudice in the workplace if their HIV status is discovered by a potential employer. Why would any employer want to hire somebody who has HIV when there are many tens of thousands of “healthy” individuals also looking for work? Disclosure of status in this context is a major concern for people living with HIV who are seeking employment, especially for those who may have been out of work for many years. Some employers are using pre-selection procedures for job interviews via the internet to reduce the number of candidates they will physically need to interview. Many employers, including government departments and local authorities, will either have in-house managers or hire specialist human resources personnel to deal with the overall employment process. Of concern for people living with HIV will be what types of questions an employer can and cannot ask in these online application forms, especially in the medical sections. Most of these forms will have clauses relating to disclosure of information, for example “providing false or misleading information will be grounds for instant dismissal,” or “a failure to disclose all relevant information will or can be considered a serious matter and may result in termination of your employment.” For people living with HIV this can create a dilemma about whether it is appropriate or necessary to disclose their HIV status. However, the intent of such clauses that ask for information about family medical history or pre-existing health problems relates only to a candidate’s ability to do they job for which they are being hired. They are included not just to weed out unfit applicants but to cover the employer from liability over any mishap or accident which may occur in the workplace, in accordance with occupational safety and health regulations (OSH). An employer cannot ask questions on general health, medical history or history of mental illness if they are not directly related to the applicant’s ability to perform the
job for which they are seeking employment. However be wary – sometimes the way in which a question is phrased can seem to push you down the path to revealing more information about yourself then you may wish to reveal or feel comfortable with giving. It comes down to a judgement call. If you are offered an interview, you may wish to reveal additional details about yourself at that stage. Remember though, it is illegal to discriminate against any employee on grounds of disability, and HIV status comes under this category. You are not required to disclose your HIV status unless it will prevent you from carrying out the job requirements satisfactorily. One approach may be to not reveal too much detail about yourself, as this may result in the HR people cutting you off the short list for an interview. The object here is to get past the preliminary stage and to get to the interview. Besides, other medical information may be much more relevant to the job for which you are applying than your HIV status. For example, a history of asthma, bad neck or back pain or frequent days off as a result of sickness are likely to be much more relevant than your HIV status. You may be asked as part of the application process to consent to a drugs test or premedical examination to assess your ability to perform the tasks of the job, the results of which are sent to the employer. If you agree to a medical examination, the employer should not ask general information about your medical, ACC or WINZ benefit history. The employer’s sole objective should be to establish whether the applicant is able to do the job or not. The employer should tell the applicant the requirements of the job and can then ask about medical or physical conditions that may prevent you from carrying out the specified work. You should also be provided with a copy of the results; You have a right to challenge Them. If the physical demands of a specific job are essential to perform the job satisfactorily, the employer can ask questions about physical characteristics such as height, weight or strength. Questions aout illness or disease can be asked if there is a risk that they could be passed onto or affect others in the workplace. For example, working in a hospital may require
disclosure of such an illness or disease if it is likely to affect other staff or patients. A legal expert at the Human Rights Commission provided the following answers about HIV and employment : Which government departments and other providers of public services are exempt from the purview of the Human Rights Act 1993, and what does this mean for an HIV positive person who may wish to seek employment in such government departments? Part 1A of the [Human Rights Act] binds the entire public sector on all the grounds [specified in the Act] with the exception of employment which is covered by Part 2. Effectively what this means is that - except in employment - government departments cannot discriminate unless the discriminatory action can be justified under [Section .5] of the Bill of Rights Act (that is, it can be justified as a reasonable limitation). In the case of employment, it is unlawful to treat someone differently by reason of any of the prohibited grounds unless one of the specific exceptions applies. The employment exception in relation to disability is found in [Section 29] which essentially allows an employer to treat people with a disability differently if the person with the disability requires special services or facilities to do the job and it is not reasonable for the employer to provide them, or the environment in which the job is to be performed is such that there is a risk of harm to the person or others and it is not reasonable to take that risk. The risk would involve the possibility of infecting others with an illness. Many councils, private firms and other organisations have a pre-selection process for screening employment applicants. What are employers allowed to ask on such forms, especially in terms of medical questions, as many people living with HIV fear disclosing their status on such forms would jeopardise their chances of getting an interview? In relation to pre-employment practices you could access the [Human Rights] Commission’s pre-employment guidelines A-Z of getting a job – guidelines for employers and employees on the Commission’s website at www.hrc.co.nz. This should give you some idea of what can and can’t be asked in job interviews etc. As a general rule, an employer should only ask questions that are relevant to the job. Can an employer legally ask you to undergo a premedical exam that could reveal your HIV status and can they compel you to see a doctor of their choosing or are you allowed to suggest your own GP? An employer can only require a medical examination if it is relevant to the particular job. It is inappropriate for them to refuse to allow a person to attend a doctor of their choice. Information and permission to reproduce extracts of the above information for this article was kindly supplied by the Human Rights Commission. n
As a general rule, an employer should only ask questions that are relevant to the job.
COLLECTIVE THINKING Issue 74 h December 2009
DETECTIVE WORK NZAF Senior Researcher Dr Peter Saxton has completed a PhD on New Zealand’s HIV epidemic among gay and bisexual men by Chris Banks
ZAF Senior Researcher Dr Peter Saxton’s recently completed PhD thesis is a mammoth opus. Entitled ‘HIV epidemiology and behavioural surveillance among men who have sex with men in New Zealand,’ it runs to 518 pages and is the result of five years of work. Groundbreaking in its scope, it covers in intricate detail the transmission modes of HIV, the New Zealand epidemic from 1985-2005, and sexual behaviour data collected by the NZAF in a series of surveys over the last decade. At the heart of the thesis is an investigation into why New Zealand’s HIV epidemic among gay and bisexual men has entered a resurgent phase in the 21st century. In the late 1990s, it seemed as if the battle was over. New Zealand was averaging around twenty new, locallycontracted diagnoses per year among gay and bisexual men, but by 2002 this had begun to rise. By 2005, diagnoses were at their highest since the early days of the epidemic. What happened? In order to understand what is going on, Dr Saxton says we first need to change the way we think about how HIV is transmitted. “When most people imagine the process of HIV transmission, they think about two individuals,” he
says. “But when we’re talking about epidemics, we need to think about how individuals fit into a network, a whole population of people.” Like any chain, our sexual networks are only as safe as the weakest link. An individual’s assertion that it is their personal choice not to use condoms has far wider implications than they might like to think. “To have an epidemic, we need more than one individual becoming infected. HIV needs to find enough opportunities for ongoing transmission. These opportunities are affected by the number of individuals having unprotected sex, the number of partners they do it with, and the way in which they’re connected to other people.” Up until 2006, the NZAF Gay Auckland Periodic Sex Survey (GAPSS) provided few answers about why a resurgence was occuring. Reported rates of condom use overall appeared to be consistent. But then a change occurred, Saxton says. “In 2004, we noticed a big increase in the number of men who reported meeting a sexual partner through the internet. In 2006, we decided to add an online component to our survey to see if there was anything we had been missing.” What had been missing was an entirely different group
of gay and bisexual men who don’t go to gay venues and events, the traditional recruitment spots for the GAPSS survey. Respondents to the 2006 Gay Online Sex Survey (GOSS), reported higher rates of casual sex, greater numbers of men with several sexual partners, lower rates of condom use for casual sex, lower rates of testing and more problematic attitudes to HIV. It became clear that the internet has opened a floodgate, allowing new men into sexual networks exhibiting behaviours which could facilitate the transmission of HIV. This explains why infection rates can rise while overall rates of condom use remain consistent. GAPSS and GOSS also collected information on HIV status. Most of the respondents living with HIV showed up in the offline sample, rather than the online one, which differs from patterns in similar research overseas. In his analysis of this data, Dr Saxton says that this perhaps suggests that the internet is not providing the same serosorting opportunities (choosing a sexual partner on the basis of their reported HIV status) as overseas. Rates of recent amyl and methamphetamine use were higher among men living with HIV, but these men were much more knowledgeable around questions relating to HIV. The majority of men living with HIV (83.3.%) disagreed with the statement “a man who knows he has HIV would tell me he was positive before we had sex.” HIV negative respondents were more than twice as likely to agree with this statement. Dr Saxton says the information gathered will be invaluable for people who design HIV prevention campaigns. “We’ve got really good information about diagnoses and the characteristics of people with new diagnoses. This always throws up interesting conundrums, for example we know that men in their thirties and forties are disproportionately affected by HIV, but it’s men under thirty who are showing the highest rates of unprotected sex.” So where to next? It has long been known that people who have HIV and are unaware of their status are one of the highest risk groups for onward transmission, but at present there is little New Zealand data on the proportion of people with HIV in New Zealand who are unaware of their status. “Overseas estimates have shown that up to 40% of people with HIV could be unaware that they have it,” Saxton says. “We need to know what proportion of people in New Zealand are living with HIV and don’t know it, and if their characteristics are different from those who are negative, or from those who are positive and aware of their status. This information could greatly sharpen HIV prevention responses.” Dr Saxton’s findings have been presented to the NZAF and stakeholders like the Ministry of Health. “The urgent priority was to finish the thesis and release the initial findings to inform HIV prevention initiatives. Now papers will be prepared for academic publication,” he says. n
BACKGROUND ON THE THESIS (from the Preface) By Dr Peter Saxton I came to the specialties of epidemiology and public health by accident. Like many gay men, I was initially attracted to the HIV field because it provided an opportunity to work for a community I belonged to. I was in the final stages of completing an MPhil (Hons) in the sociology of social movements when I took a temporary job as a telephone interviewer on Project Male Call / Waea Mai, Tane Ma in June of 1996. This was the first large scale, indepth nationwide study on men who have sex with men (MSM) to be conducted in New Zealand, and the energy and promise surrounding it immediately captured me. The following February I was employed at the NZAF as a research assistant to analyse and report the results. This was an apprenticeship which I still regard as pivotal to the shaping of my current research interests. I was hungry for, and fascinated by, original data about my community, the priority was to apply the findings directly to HIV prevention, and we familiarised ourselves with diverse areas of the literature because of the broad nature of the Male Call questionnaire. When the research funding came to an end I was employed as the NZAF policy analyst, and was able to apply my previous training from a BSocSci (Hons) in political philosophy, public policy and economics to the NZAF’s work. My deep interest in conceptual and methodological issues surrounding sexual orientation data collection emerged in this period, a research thread I try hard to maintain to this day. Several substantial and, I hope, influential submissions to government departments were written with Tony Hughes on topics such as official statistics, blood donation, youth suicide, hate speech, sexually transmitted infection monitoring, and same-sex relationships. These were our attempts at forging a consilience between sexual orientation, social justice and HIV management within an Ottawa Charter health promotion framework. How then did I find myself learning and practising epidemiology? In retrospect it makes complete sense: both of my earlier degrees involved studying collective action at some level, and epidemics are collective events. The main reason is that it was a necessary response to a practical problem. From 2001 HIV diagnoses among MSM in New Zealand were rising, and there was no real understanding of why apart from lay beliefs about gay men’s “complacency” due to HIV treatments and “safe sex fatigue.” New frameworks and data were required. This thesis is one response to that challenge. Dr Saxton’s thesis is available in full from the NZAF Library in Auckland or the Lesbian and Gay Archives of New Zealand (LAGANZ) in Wellington.
COLLECTIVE THINKING Issue 74 h December 2009
COMING OUT ALL OVER AGAIN
“We should all just assume everyone is HIV positive and always play safe.”
By Michael Stevens
ne of the most successful tactics of the Gay Liberation Movement in the 1970s was the emphasis they placed on coming out as a political statement. The logic was that if every gay man and lesbian came out and admitted who they were, the general public would see so many queers everywhere that they’d appreciate we were just a normal part of the population. If our real numbers were revealed, we’d be stronger. I remember reading a piece from back then where this activist said he wished every homo would turn purple overnight, so we could all be seen. Coming out did work. It took brave people at the start, but over time it became more and more ordinary, and now it is hard to imagine a world where it doesn’t happen, in the West anyway. By making ourselves visible, instead of quietly hiding away, we made ourselves part of the landscape. It was a very clever political move. Even now, unfortunately, there are queers in New Zealand and elsewhere in the world who are still too scared to admit they are attracted to the same sex. People in sports, politics, business, the arts, on TV and everywhere else in our world who, in spite of all we’ve gained, even in liberal homofriendly New Zealand, are terrified that someone will find out that they are somehow “different” and have to hide this part of their personality. I have to say I find it weird that people today find it hard to come out, but if you’re in professional sports, trying to make a career on TV, being same-sex attracted is still seen as a weakness. Of course, if they all came out, well, it wouldn’t be seen in the same way: that is the basic argument for coming out as an act - it makes us visible and normal. But it can’t be denied, it still takes courage to come out as gay. Those people these days who don’t come out, I do tend to think of as just a little bit cowardly, but I understand their cowardice. One friend recently recalled the fear and terror of it all and referred to coming out as “stomach-churning”, and I know what he means. It is opening yourself up and taking on an identity that is stigmatised, looked-down on, and saying “hey, I’m just as good as you!” when a number of people still think that we are sick, sinners or just evil. But in reality we are just as good, or bad, or ordinary, as anyone else, gay, straight, queer, whatever word you want to use.
I wonder how well it could work for making HIV seem less fearful and more normal. I wonder how it would be if every HIV positive person came out, so everyone around could see that we are just normal people going about our lives. I’m not suggesting right now that every HIV positive person tell all to the world; it takes time and preparation and support before you can do that, and some people will never get to that point. But more of us could, I’m sure. One night back in the 1990s at Volt (long gone, alas) I was chatting with a guy, and said to him “I guess you should know I’m HIV positive”, and he said to me, “you really don’t need to tell me that, in fact, you shouldn’t tell people. We should all just assume everyone is HIV positive and always play safe.” That has always been the basis of the “use a condom every time” message. We just don’t know for sure who has it or who doesn’t. And that message used to be very strong in our world. This was all just after the new drugs came out, and things were starting to turn around for us, but there was still a strong communal knowledge of how bad things can get with HIV, so many of us had seen friends get so sick, and then die. But that safe sex message has remained the same. And it does make sense still. We don’t tell people “if you smoke five cigarettes a day you’ll be OK”. Even though people continue to smoke, we still don’t encourage them to risk a few. We tell, with damn good evidence, that the best thing they can do is stop completely. And of course, realistically, we all know that these
messages won’t be blindly followed. So even though, you might be fine risking it having unsafe sex nine out of ten times, you might also have been exposed to HIV each of those ten times you didn’t use condoms. It’s a brutally simple message, but one that is still factually true. But I think one thing that has changed a lot is that now people who think they’re HIV negative are placing a far greater responsibility of those of us who have the virus to tell them. It used to be all of us together - now it’s seen more and more as the HIV positive person’s job. With the numbers of people living with the virus here in New Zealand going up all the time, living well and not looking as though anything is wrong, and fewer and fewer of us dying, in fact the opportunity to be exposed to HIV has increased significantly. The other advantage from that old way of behaving was that it didn’t stigmatise HIV positive people as much. The burden was shared, and that was a good thing. Today, if you’re a fit, healthy looking gym-bunny who just happens to have HIV, as so many are, there is now I think even more fear and stigma about admitting it to others. And that’s a shame. It used to be poz and neg together, not, as we often seem now, in two differing camps where the HIV negative think the HIV positive should shoulder all the responsibility. Because having HIV is nothing to be ashamed of. It’s a virus in our blood. It’s not a moral judgement. But the weight of social judgement and stigma, not least from the gay world, is such that most people with HIV feel a need to hide it, so as to avoid the pain of rejection, pity and ostracism. And this leads to more invisibility, more fear and shame felt by those living with the virus. But maybe if you knew just how many of us are out there, perhaps you’d think differently. n
COLLECTIVE THINKING Issue 74 h December 2009
WOULD YOU LIKE TO BE PART OF A NEW POSITIVE PEOPLE’S REFERENCE GROUP BEING ESTABLISHED BY THE NZAF? T n koutou katoa,
Over the last year a commitment has been made to having greater input from people living with HIV in the planning and review of services delivered by NZAF Positive Health Services. This will enhance the ongoing relationship the NZAF has with HIV peer support organisations and the contribution of staff with HIV within the NZAF. So far, the NZAF has met informally with local groups, had individual meetings across the country, and produced a survey asking what people want or need from NZAF services. One of the survey questions asked if people would like to join an advisory/reference group for NZAF Positive Health Services. It was heartening to see strong support for this idea. For the NZAF to continue to build upon our commitment to greater involvement of people living with HIV, we must now move to the next stage, the formation of a HIV positive ‘reference’ group. The reference group will be a national group, made up of individuals who are interested in the work of the group and representatives of established HIV peer support groups that wish to participate.We hope that a cross-section of people living with HIV will be involved. We need the contribution of a range of genders, ages, cultures, ethnicities, sexual orientations and identities, people newly and long-term diagnosed, those taking treatments for many years, new to treatments, those who have not yet started, parents of children with living with HIV. Once formed, the group will meet approximately three times a year and contact will be maintained between members of the group throughout the year. The draft terms of reference include: l Helping to establish the direction for future issues of Collective Thinking l Reviewing any planned materials for publication by NZAF Positive Health Services l Reviewing changes to systems and services such as the NZAF Positive Speakers Bureau and Wellness Fund l Providing input into the annual process of setting operational goals l Reviewing and monitoring delivery of those plans This group will meet and work with the NZAF Director of Positive Health Services, although others, such as the editors of Collective Thinking, and NZAF Regional Managers 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 receive other NZAF communicationsgroup members will need to be comfortable with their status being known by NZAF staff other than the NZAF Director of Positive Health Services. If you are interested and wish to be a part of this group please contact Eamonn Smythe, NZAF Director Positive Health Services or your nearest NZAF Regional Manager by 30 January 2010. Please include some information about yourself (a resume would be helpful but not essential), what you believe you can contribute and your reason for wanting to participate. Responses are welcomed by email, post or fax. We look forward to hearing from you. Nuku noa, n
Eamonn Smythe NZAF Director Positive . Health Services firstname.lastname@example.org PO Box 6663 Wellesley St Auckland 1141 Fax | 09 303 3149
Wayne Otter NZAF Northern and Midland . Regional Manager email@example.com PO Box 6663 Wellesley St Auckland 1141 Fax | 09 302 2338
Laura Jones NZAF Central and Southern . Regional Manager firstname.lastname@example.org PO Box 13618 Armagh Christchurch 8141 Fax | 03 365 2477
NZAF OPENS FREE SEXUAL HEALTH CLINIC IN WELLINGTON The NZAF has joined with Wellington Sexual Health Services to provide a full sexual health screening service at the NZAF whina Centre in Wellington. The weekly Sexual Health Clinics will be held every Wednesday from 4.00pm – 7.00pm and are free of charge. Laura Jones, NZAF Regional Manager described the new services as a “one stop sexual health shop. We’re thrilled that we can offer these essential screening services free of charge”. The Sexual Health Clinics aim to be welcoming and men-focussed. “Anyone who seeks free anonymous HIV and STI testing is welcome and we have a specially designed and refitted room ready for clients at the NZAF whina Centre.” An experienced sexual health clinician or nurse will be carry out the free checks and gay and bisexual men in particular are encouraged to attend for both regular checkups, if they feel that they may be at risk, or if they have any questions or concerns about their sexual health. “We aim to offer an alternative service if people choose not to go to their GP or another sexual health service” says Jones. The Sexual Health Clinics will complement the existing testing, counselling or psychotherapy and support services offered at the NZAF whina Centre for anyone affected by HIV. To book an appointment for the Sexual Health Clinic please call 04 381 6640 or email email@example.com The clinic will be open at Level 1, 187 Willis Street, Wellington on Wednesday evenings from 4.00-7.00pm, public transport and metered parking is available and all services are free of charge.
CORONER TO INVESTIGATE DEATH OF GLENN MILLS The coroner will investigate the death of Glenn Richard Albert Mills, who was found dead in his prison cell at the Auckland Remand Centre in Mt Eden on Monday, 30 November 2009. Police say they are not looking for anyone else in connection to his death and the death is not suspicious. Mills had been charged with wounding and attempting to wound with reckless disregard and infecting and attempting to infect with HIV. He had faced 28 charges relating to 14 victims. The Department of Corrections says staff tried to revive Mills. “Staff provided medical assistance but were unable to revive the prisoner. He was pronounced dead when ambulance staff arrived a short time later,” Department of Corrections assistant regional manager Grace Smit says. “The prisoner’s death is not considered suspicious, however the Coroner will investigate and confirm the circumstances.” Mills had been in custody since charges were laid earlier this year. He was due to appear for a scheduled court appearance in the Auckland District Court on 30 November, the morning he died. Smit says a review of Mills’ death will be undertaken by the independent Corrections Inspectorate, which is monitored by the Office of the Ombudsmen. Rachael Le Mesurier, NZAF Executive Director offered “our deepest sympathy to the family and friends of Glenn Mills” on behalf of the NZAF. “Any death is tragic and our thoughts are with those who cared for Glenn. We also encourage all those affected by Glenn’s passing to seek support if and when they need it. The NZAF has free, professional, non-judgmental support services available, as do other agencies”. To access free and professional counselling or psychotherapy please contact your local NZAF Regional Office or visit www.nzaf.org.nz Source: One News/NZPA/NZAF
COLLECTIVE THINKING Issue 74 h December 2009
Some women like to get involved in activities such as volunteer work or study in order to keep busy, and to maintain or develop social networks and other contact. Your work situation may affect things like work and income entitlements. Disability Support Officers located at WINZ or an HIV counsellor may be able to advise you further on this.
Stress and fatigue
TREAT YOURSELF RIGHT
reat Yourself Right is the title of a new resource produced by Positive Women Inc., which provides up-to-date information on health and wellbeing for women living with HIV and 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 will 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 in 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 which highlight the need for a resource with information specific to women. The cover image utilises images of the four women from Positive Women’s highly successful anti-stigma 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 is also available to download from www. positivewomen.org.nz. In this issue’s extract from Treat Yourself Right, we look at getting on with living in the presence of HIV.
GETTING ON WITH YOUR LIFE Work
Work has the potential to affect your health and wellbeing, in both positive and negative ways. Work may be boring and stressful, or merely an economic necessity. It may also be interesting, fulfilling, and a great reason to get up in the morning. If you have a choice as to whether you can work or not, or whether to work full-time or part-time, it may be a good idea to think about the role of work in your life. Remember, you don’t have to rush into any decisions. The issue of work may be complicated by your health. Perhaps you are experiencing periods in which you are unwell or need regular time off for medical care. Complicated antiviral regimes may also be an issue, particularly if you are experiencing side effects (such as diarrhoea). In these circumstances, it makes sense to take time to think about your work situation. You may wish to discuss your options with your partner, your counsellor, doctor or another health care provider. If you are having periods in which you are unwell, it may be harder to balance the demands of work and family or personal life. It is useful to remember that the nature of the workforce is changing all the time. You may find that there are opportunities for part-time work, or for work with flexible hours which may suit you more than full-time work.
If you’re HIV positive, you may experience periods of fatigue or constant tiredness. The cause of this could be physical or psychological. Stress or depression are common causes of fatigue. However, constant tiredness may also have a physical cause, related to HIV, or to other illness. If you feel constantly tired or stressed, think about ways in which you might reduce your work load and responsibilities. Take time out for yourself, even if you’re caring for others. Some complementary therapies incorporate relaxation techniques. Yoga or meditation are just two of the approaches many women have found helpful. Positive Women Inc. holds free, annual women’s retreats and a family gathering every two years. These can be a great way to take time out for yourself, meet other positive women and perhaps learn to deal with problems like stress or depression. It’s important to keep doing the things that you enjoy in life — things which make you feel good about yourself and raise your self-esteem. If you are feeling more than usually fatigued, or the onset of tiredness is sudden or extreme, it could be related to HIV. Talk to your doctor if you think this may be the case.
Diet and exercise To help your immune system stay healthy and to prevent HIV related weight loss, it is important to eat well and enjoy your food. This means eating meals which include a wide range of foods. Because people with HIV are susceptible to weight loss, it is recommended that you eat a well-balanced diet to try to maintain your normal weight. This is a diet that includes fresh fruit, vegetables, grains and protein. Avoid low calorie or low-fat diets, or ‘fad’ diets and eating plans which are excessively restrictive. Women with HIV may need to eat a diet higher in protein than HIV negative women in order to conserve lean muscle mass. Some women need specific help to maintain normal blood lipids and sugar. You may want to talk with a dietitian to help manage your specific nutritional needs. A dietitian may be able to recommend ways to manage stress, fatigue, diarrhoea, nausea, changes in body shape or weight loss. You may choose to take some extra vitamins or nutritional supplements. If you think this could be for you, seek advice from your doctor or HIV specialist. Exercise can also improve your mood, increase your energy levels and help maintain your lean muscle mass. Even a daily
walk in the fresh air can help you feel, and sleep, better.
Alcohol A little alcohol can help you relax, feel good and increase your appetite. A glass of wine or beer or a single measure of spirits should do you no harm. Heavy drinking increases your body’s requirements for certain nutrients, such as vitamin B6, and places a strain on your liver. A healthy liver is needed to process anti HIV drugs. Some women on these treatments find that they become increasingly likely to experience a ‘hung over’ feeling, with even small amounts of alcohol.
Smoking If you smoke, you may want to cut down or stop if you can. It is well known that smoking is a health hazard for everyone and may be unhelpful for someone with a damaged immune system. Smoking increases the risk of cervical cancer, also a higher risk for HIV positive women. There are programmes that can help you stop smoking if you decide to quit smoking and some are available on subsidies. Ask your doctor.
Recreational drug use Some recreational drugs interact with anti HIV drugs, so it’s important to talk honestly to your doctor about any drugs that you use, whether regularly or occasionally. Using recreational drugs while you are on antiviral treatment can be harmful because l Each person’s body may have a different reaction; l Your immune system may be damaged through longterm use of some of these drugs; l Some recreational drugs may lower the levels of antivirals in your blood, so less of the dose is absorbed; l Some antivirals may raise the blood levels of amphetamine-based drugs to possibly dangerous levels. If you do inject recreational drugs, it is strongly advised that you do not share needles or injecting equipment — even with other HIV positive people. Use your own injecting equipment or use a new kit every time. This is important in order to: l Reduce the risk of becoming infected with Hepatitis C or other blood borne viruses; l Prevent the transmission of HIV and other infections. If you use drugs, you may want to reduce your use or stop altogether. You should seek advice and support for this through your doctor, community health service, or HIV support group. Extracted with kind permission of Positive Women from Treat Yourself Right. For a full copy of the booklet, contact Positive Women, 1/3 Poynton Tce, Newton, Auckland 1010. (09) 309 1858 or 0800 POZ TIV (0800 769 848). firstname.lastname@example.org , www.positivewomen.co.nz