Collective Thinking 73

COLLECTIVE THINKING

Issue 73 H NOVEMBER 09

PASSIVE SUICIDE?

When your loved one won’t take medication

The Newsletter for HIV+ people, their carers and supporters New Zealand ISSN 1170-2354

H Research roundup: 5th International AIDS Society Conference H Interview: Chris Banks talks with Shane Bosher

CONTENTS Editorial .................................................................................................................. 1 Local News News from around Aotearoa .......................................................................... 2

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International News News from around the globe . ........................................................................ 4 Readers’ Feedback What our readers had to say ......................................................................... 6 Positive People’s Support Group Updates News from peer support groups ................................................................. 7 Feature Passive Suicide? When your loved one won’t take medication . .... 10

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Report 26th International AIDS Candlelight Memorial report ...................... 14 Positive People’s Reference Group How you can change services for positive people .............................. 16 Interview Chris Banks talks with actor and director Shane Bosher ................. 17 Opinion Elegy, by Michael Stevens . ............................................................................. 19 Research Roundup 5th International AIDS Society Conference . ........................................ 20

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Update HIV treatments update.................................................................................... 22 Positive Women Treat Yourself Right ......................................................................................... 24 Obituary Honouring David Milne .................................................................................. 26 Quotes Statements from around the world .......................................................... 27

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Get it On! Creating a Condom Culture.......................................................................... 28

Collective Thinking, the magazine for HIV+ people, their carers and supporters, is published quarterly, by the New Zealand AIDS Foundation (NZAF).

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.

COLLECTIVE THINKING

Issue 73 h November 2009

LETTER FROM THE EDITOR Dear Readers, Perhaps the single most important issue to affect the HIV Positive community over the past several months is the current case before the courts of a HIV positive man alleged to have deliberately infected several people (both men and women) with HIV. Thankfully such situations are rare. Intentionally and knowingly transmitting HIV to others is very uncommon. The vast majority of people living with HIV are very responsible when it comes to the use of condoms and lube for anal sex.

Furthermore it should be noted at present there has been no conviction in this case so all details of it are to be regarded as still being only alleged and people caught up in these situations, particularly those who may have acquired HIV infection in this manner are likely to experience a great deal of stress and anxiety. Therefore free, fast and painless confidential testing and counselling services are offered nationwide by the NZAF, sexual health and family planning clinics, at hospitals, at some GP clinics and other support organisations like Body Positive.

While not wishing to discuss this case due to legal considerations, it is worth noting that the backlash against those living with the virus has been neither helpful nor useful, as it can lead to a climate where stigma and discrimination can grow.

HIV positive people in such a climate can erroneously become convenient ‘scapegoats’ to blame for rises in recent infections. The last thing we need is for unsafe practices to be forced underground while reinforcing a misguided belief that it is solely the responsibility of ‘known’ HIV positive people to practise safe sex. This would allow for people to be able to avoid taking individual responsibility for their own sexual health and well being and for those with which they chose to be intimate. Such a move could ‘potentially’ undermine the culture of safe sex and put more people at risk.

This case is a timely reminder for us all (in terms of our own individual responsibility and to that of the wider community in which we live), to recommit ourselves to safer sex practices- remember it always takes two to tango. Both parties are responsible for their own safety and well being.

By apportioning or implying blame to HIV positive people for the rise of recent HIV infections based on the actions of few individuals, is to further stigmatise an already vulnerable population and does nothing to address the underlying causes of why after more than 20 years of knowledge of how HIV is transmitted, why people are still putting themselves at risk of infection by engaging in unsafe sex practices.

Those who pose the greatest risk to the community (of spreading the virus) and are largely responsible for the rising numbers of new diagnoses each year are those individuals who engage in unprotected anal sex and who don’t know their HIV status (or who simply refuse to test because they don’t want to know if they have been infected) .

A number of organisations are working hard to create a climate whereby all men who have sex with men are confident enough to insist on the use of condoms and lube for anal sex. However as a community we also need to do more to give people the social skills and courage to say “NO !!!” to risky behaviours (even in the face of low self esteem, or increased consumption of alcohol and recreational drugs). We need to teach people to be able to say : “If you love or care for me then let’s play safe. Let’s use protection (condoms and lube).”

Let’s keep ourselves and our community safe!!

Jack Dragicevich Co-editor c.thinking@nzaf.org.nz 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.

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LOCAL NEWS

MIXED FEELINGS GREET NEW HIV TREATMENT The New Zealand AIDS Foundation (NZAF) has welcomed the announcement that PHARMAC will subsidise ISENTRESS (raltegravir) from 1 October 2009. However, despite clinical advice from both the Pharmacology and Therapeutic Advisory Committee (PTAC) and the Anti-Infective Subcommittee, PHARMAC will not fund Darunavir, a medication that increases the efficacy of ISENTRESS when the two are used together.

ISENTRESS, developed by Merck Sharp and Dohme, is the first in a new class of medications called integrase inhibitors and is suitable for people living with HIV who have developed resistance to their existing medications. “The availability of ISENTRESS is timely” says Eamonn Smythe, NZAF Director Positive Health Services. ”Over the next few years increasing numbers of patients will require this new class of medication.”

“PHARMAC should be applauded for their decision to fund ISENTRESS. However research has shown that ISENTRESS and Darunavir when used in combination with each other are extremely effective in the ongoing management of HIV,” says Smythe.

“People living with HIV can, and do, develop resistance to HIV treatments. This is one of the greatest challenges in effective HIV management. Without access to new medications there are limited treatment options available to people who have developed drug resistance” says Smythe.

During the consultation process regarding the funding of ISENTRESS, the NZAF has asked PHARMAC for the rationale behind the decision not to fund Duranavir at the same time. As yet, the NZAF has not received a response.

Darunavir is a protease inhibitor developed by Janssen-Cilag. Both ISENTRESS and Darunavir were approved by Medsafe in 2008. In New Zealand, Janssen-Cilag provides free Darunavir to thirty people via a compassionate supply programme. In Australia, Darunavir has been funded for nearly two years.

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TESTING NUMBERS RISE FOLLOWING COURT APPEARANCE

DISCLOSURE STORIES NEEDED

The NZAF and HIV peer support groups reported a significant increase in the demand for HIV tests after the lifting of name suppression for Glenn Mills, an Auckland man who is alleged to have knowingly exposed people to HIV. Rachael Le Mesurier NZAF Executive Director said “in comparison to the same period in 2008 there has been a significant increase in the demand for HIV testing and professional counselling services at NZAF regional centres, particularly at the NZAF Burnett Centre in Auckland, and the NZAF whina Centre in Wellington.”

Out of respect for its clients and their right to confidentiality the NZAF will not release information about how many people have had HIV tests or the results of those tests. Le Mesurier stated “The NZAF provides free counselling services with qualified counsellors and psychotherapists. These services have been very well utilised particularly in the period directly after the court appearances because many people are understandably distressed.

Some people have accessed our services simply because the increased focus on HIV in the media has prompted them to get tested.”

Body Positive told the New Zealand Herald that 25 to thirty people had been tested as of 1 July at its K Rd clinic. Craig Webster, a Body Positive Social Worker said calls had come in from all over the country, averaging five to ten per day.

Personal stories are being called for by Positive Women in a new resource being produced on disclosure of HIV status.

“Disclosing the fact that one is living with HIV can be absolutely petrifying for some people,” says Positive Women National Co-ordinator Jane Bruning.

“While disclosure is a very personal issue, there will be times when you may have to disclose, either to a potential partner, to children, to family and close friends or to health professionals.

“Sharing stories, experiences and tips in this way will make the resource very real and relevant from the perspective of those living with HIV. Only those living with HIV really know the complexities, frustrations, fears and anxieties which are involved when it comes to disclosure.”

Stories provided can be kept anonymous. If you are interested, please contact Positive Women on (09) 309 1858 or positivewomen@xtra.co.nz.

COLLECTIVE THINKING

Issue 73 h November 2009

LOVE LIFE 3 FONO HELD IN AUCKLAND The third biennial summit of Pacific leaders from sexual minority communities was hosted by the NZAF at the end of October. The Love Life 3 Fono bought together participants from some of the most marginalised groups from within New Zealand and other Pacific nations to Te Mahurehure Marae in Auckland.

Between 100 and 150 people attended the event which had a strong emphasis on bringing together New Zealand’s Pacific communities and young Pacific people. Participants from Christchurch, Wellington, Auckland and regional areas of New Zealand gathered together with delegates from Samoa, Tonga, Fiji and the Cook Islands.

Phylesha Brown-Acton, Co-ordinator of the Love Life 3 Fono for the NZAF says “sexual minorities are some of the communities most at risk of HIV in the Pacific. Research shows that the development of inclusive, strong and supportive communities and organisations is essential for building an HIV resilient New Zealand and Pacific.”

Small groups of participants worked on action plans for informal support structures for transgender Pacific peoples, and for increased communication between networks based in New Zealand and in the Pacific Islands. NZAF staff from the Pacific will combine the plans and work to facilitate communication between the groups in the future.

The next gathering for the Pacific sexual minority communities is planned for March 2011 and will coincide with the 2nd Asia Pacific Outgames in Wellington.

WELLINGTON QUEEN PAGEANT SUFFERS LOSS Queen Of The Whole Universe, a major Auckland-based HIV awareness and fundraising event, has lost money on its first outing to Wellington.

Tough economic times are being blamed for the loss, but the HIV charities that were to be beneficiaries of the event remain supportive of it.

“The Queen of the Whole Universe pageant in Wellington was staged in difficult economic times but we would like congratulate and thank Eventimento, the cast and crew for a spectacular show,” said Rachael Le Mesurier, NZAF Executive Director.

Over $140,000 in event proceeds has been donated to HIV charities over the last five years from Queen Of The Whole Universe.

LIFE INSURANCE FOR HIV POSITIVE PEOPLE NOW AVAILABLE For the first time a Hamilton-based insurance broker has made life insurance easily available to people living with HIV. Reuben Waihi, Managing Director of Your Life and Associates says he advocated on behalf of a woman living with HIV, a member of Positive Women Inc., who was initially refused cover by insurance companies. “We believe that everyone’s needs are different so when one of our customers with HIV was unable to get life insurance despite being in good health, Neil Peters a Client Advisor, was determined to offer a service that met her needs.”

Collective Thinking surveyed eight major insurance companies about life insurance for people living with HIV in the August 2008 issue.

One company said they would charge an upfront fee for applications from people living with HIV due to the “complexity” involved in assessing them, while others indicated that premiums would be higher than normal, but Neil Peters of Your Life says there are “affordable” products available.

The NZAF and Positive Women Inc., have applauded Your Life and Associate’s move to make cover available for people living with HIV. “We congratulate Your Life and Associates for making this move forward and hope other insurance companies will follow their lead,” said Eamonn Smythe, NZAF Director Positive Health Services. “Life insurance is a necessity for people with mortgages and families.

As more New Zealanders are living with HIV than ever before, this is a sound and timely decision.”

For more information about insurance from Your Life and Associates go to www.ylife.co.nz or call 0800 87 54 33.

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INTERNATIONAL NEWS

FRANCE

Study suggests HIV doesn’t increase swine flu risk

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Having HIV doesn’t make you any more likely to die from swine flu, according to a new French study.

Many people living with HIV had feared that HIV might be among the “underlying conditions” that have been named as co-factors in at least 49 percent of the documented fatal cases of swine flu, known as H1N1, worldwide.

But in their study, which reviewed deaths associated with H1N1, researchers from the French Institute for Public Health Surveillance noted that “diseases most frequently associated with death [from H1N1] were the same as those identified for death from seasonal influenza.” However, the researchers emphasised that there is little information about the H1N1 pandemic, since data exists from only a few months.

The researchers said that, between April and July 2009 there were a total of 684 confirmed H1N1 deaths in 28 countries. Due to what they said was a “significant amount of missing data,” the researchers only analysed 331 cases of people who had died and were also noted to have an underlying disease.

They found that “metabolic conditions” (usually obesity, diabetes or both) were the most common underlying health risks in the cases they had data for, accounting for 57 of the people who had died. The World Health Organization defines obesity as a body mass index of thirty or more, but different countries and localities may have used different definitions.

Source: TheBody.com

GERMANY

Gene therapy holds hope of potential HIV cure GERMANY: HIV appears to have disappeared from the bloodstream of a patient living with HIV in Berlin as an unexpected side effect of a bone marrow transplant to treat his leukemia.

The man was taken off all HIV medication following the procedure, with the intention that his treatments would resume once the virus re-emerged in his bloodstream.

However, doctors have been unable to detect it in the patient’s bloodstream, brain or rectal tissue in the 600 days since the operation.

The doctor responsible for the potential breakthrough

is Gero Hütter, a hematologist. He replaced the patient’s bone marrow cells with those from a donor who has a naturally occurring genetic mutation that renders his cells immune to almost all strains of HIV. While the development suggests a new area for HIV research, doctors and scientists are urging caution. Nobel Prize winner Dr David Baltimore has warned that the case could be a fluke, however he deemed it “a very good sign” and a virtual “proof of principle” for gene-therapy approaches.

There are also concerns that HIV could evolve to overcome the genetic mutation. The transplant treatment itself is not without dangers, killing up to thirty percent of patients who undergo it.

But with increased concerns that current antiretroviral treatments are unsustainable, the search for a cure has developed greater urgency, and Dr Hütter’s breakthrough has ignited interest from other researchers to develop gene therapy treatments further.

Source: Wall Street Journal

UNITED STATES

Grant given for food safety campaign UNITED STATES: People living with AIDS in Chicago are to be educated about food safety following a three year, US$600,000 grant from the U.S. Department of Agriculture to the University of Illinois.

The money will be used to develop information campaigns for people living with AIDS who are at high risk of developing infections from certain foods, say university researchers.

Nearly half a million people in the United States are living with AIDS, according to the Centers for Disease Control and Prevention. AIDS patients whose immune systems have been severely suppressed by the HIV virus to a T-cell count below 200 (per microliter) are at risk of developing lifethreatening infections from food-borne illnesses.

“In addition to their compromised immune systems, people with AIDS may have low stomach acid, which is the first barrier against germs”, said Dr Mark Dworkin, Associate Professor of Epidemiology at the University of Illinois. “For example, such patients can become infected with salmonella bacteria from eating fresh fruits and vegetables that are not washed properly.”

Dworkin added that most people with AIDS are probably not aware that food safety recommendations for them may include heating lunchmeat. Listeria, a foodborne pathogen that has been attributed to eating lunchmeat

COLLECTIVE THINKING

Issue 73 h November 2009

and soft cheeses, can cause meningitis and sepsis in AIDS patients.

The researchers will interview 300 AIDS patients in Chicago, New Orleans and Bayamón, Puerto Rico, to determine the biggest knowledge gaps in food safety.

Source: UPI.com

Professor climbs Everest for AIDS awareness A US college professor has gone to awareness-raising extremes by climbing Mount Everest to raise money and awareness for AIDS research.

J. Paul Robinson is a Professor of Basic Medical Sciences in the School of Veterinary Medicine at Purdue University in Indiana. His chosen charity was Cytometry for Life, which is attempting to develop a portable diagnostic device to monitor blood lymphocyte levels in people living with HIV in developing countries.

“I think the most important thing, more than raising money, is raising awareness of the problems of AIDS in Africa and other limited regions,” he said. “I’m more focused on bringing awareness than on the money.

Eventually, I’m sure we’ll raise the funds that we need.”

A satellite internet connection set up by his Purdue colleagues enabled Professor Robinson to stay in touch with home during his seven-week journey. He says his attitudes about everyday life have changed since returning from the climb.

“I’ve changed the way I think, the way I look at other people,” he said. “ [On Mount Everest] the only enemy is the mountain, everyone else is a friend. They have to be. You learn if you don’t do all those things you will not achieve your goal. If you don’t persevere then you will surely fail because, you know, it’s all adversity.”

Source: The Exponent

ZIMBABWE

Positive women’s soccer story inspires ZIMBABWE: The uplifting true story of a group of Zimbabwean women living with HIV and overcoming stigma and discrimination has been immortalised on film.

The Positive Ladies Soccer Club follows the ARV Swallows, a group of women from Epworth, who decide to form a soccer club to fight stigma in their community. The women endured taunting as they trained, generally from men in their community who did not believe soccer could be a women’s game.

At the conclusion of the film the strong spirit of the team triumphs as they win both the HIV Positive Women’s League Championship and the support and acceptance of their community. The film also chronicles the personal lives of the women and their daily struggles.

China is one of the most inspiring stories, a woman who was once so sick the neighbours referred to her as a “living corpse”. Meria, another woman featured, had to take her husband to the clinic in a wheelbarrow daily for two months so he could be treated for tuberculosis (TB).

The film was made by Holand Joanna Stavropoulou, a Field Communications Officer for Doctors Without Borders. She says she was particularly moved by the fact that even after going through such heart-rending experiences the women were still “unbroken”.

“The inspiration for me for this film is the women themselves,” she said. “When I met them I was so touched by their strength and their kindness and their generosity of spirit that immediately I felt that they were my heroines and I said to myself I have to make a film about these women.”

Source: Allafrica.com

SOUTH AFRICA

Drug companies drop HIV drug prices in Africa SOUTH AFRICA: HIV and TB treatments are to be made more affordable for developing countries in a major agreement signed between the Clinton Foundation and two multinational drug companies.

The package of HIV treatments includes the antiretroviral drugs azanavir, ritonavir, tenofovir and lamivudine. The availability of TB drug rifabutin will also be expanded.

The World Health Organisation has said that TB is the leading cause of death among people living with HIV, resulting in more than 456,000 deaths in 2007.

Former US President Bill Clinton said his Foundation’s HIV/AIDS initiative had put two million people on drug therapy, and that this agreement would ensure that there was uninterrupted access to treatment.

“But their continued survival depends on uninterrupted access to medicines and quality, and affordable health care throughout their entire life. Today’s announcement will help ensure we can sustain treatment and better treat patients with both HIV and TB,” he said.

Paula Akugizibwe of the AIDS and Rights Alliance for Southern Africa welcomed the announcement.

Source: Sowetan

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READERS’ FEEDBACK The last issue of Collective Thinking generated a variety of comments and opinions. The article which elicited the largest number of comments was the feature article on being “Young, Gay and Positive”. C. writes : “I especially liked “Young, Gay, Positive” which I found to be both moving and thought-provoking. I have never really stopped to think about some of the problems HIV positive young gay men have in finding boyfriends and just having sex. Thank you very much indeed for that article.”

As a result of this article, Body Positive, an Auckland-based HIV peer support organisation has been in contact and has ongoing dialogue with the individual featured in this story in an effort to work towards providing better services to young people living with HIV. There were also many thought-provoking comments about the opinion piece “Regional Roundup”, which looked at the status of HIV peer support organisations throughout the country.

One Northland respondent wrote: “…Have just read the latest issue of Collective Thinking and really enjoyed it. I liked your write-up on Regional Support Groups, and especially your comments on the Northland AIDS Network Charitable Trust (NAN). I would have been a little more blunt if I had been writing it. It was obvious that a lot of work had gone into the Regional Groups article which was very informative.”

Some organisations were concerned that the “Regional Roundup” piece had not shown them in the best light. All of these groups were offered an opportunity to respond to Regional Roundup in this issue and that feedback is on the following pages of this issue.

Organisations that submitted information about their group after the publication deadline for the last issue were also offered the opportunity to have their story told.

Collective Thinking encourages healthy dialogue and constructive criticism from readers. Ideas for future features are gratefully appreciated. Collective Thinking would like to encourage opinions about articles, personal stories and experiences.

Any contributions, comments or feedback should be addressed to: c.thinking@nzaf.org.nz or Collective Thinking, c/- New Zealand AIDS Foundation, PO Box 6663, Wellesley Street, Auckland 1141.

AIDS MEMORIAL QUILT WEBSITE TAKES SHAPE 6

Following a community meeting in May attended by twenty people, the preservation and growth of the New Zealand AIDS Memorial Quilts looks brighter and more secure, reports keeper Michael Bancroft.

“The quilts are showing signs of wear and tear after years of foldings, unfoldings and displays. Some are over twenty years old. It’s imperative that we act now in order to preserve them.”

The Gay Auckland Business Association (gaba) has made a $2,000 grant toward the creation of a website where the quilts can be preserved in the digital domain and appreciated by generations to come.

The planning for the website itself is soon to begin thanks to the support and input of many members of the community. Further offers are encouraged.

In early August, photographer Gareth Watkins of Wellington and his partner Roger Smith donated two days to the photographic recording of every quilt panel and block.

The photos are now being digitally prepared to form the basis of the record for the quilt website. Work has begun to collate and order the myriad pieces of written record so that they will give easy access to the history of the New Zealand quilt since it began in 1988. This website will make available the quilts as never before - both visually and as a recorded history.

Once up and running, it is hoped to develop it further into an interactive site where new, virtual quilts can be a possibility. The quilt currently only records the memory of around 130 people, where it could potentially remember over 900.

If all goes to plan the website is expected to be available in time for the International AIDS Candlelight Memorial in May 2010.

Further information and offers of assistance can be made to Michael Bancroft, Keeper of the Quilts, c/P.O. Box 6663 Wellesley St Auckland, or by contacting the NZAF on (09) 303 3124 or contact@nzaf.org.nz.

COLLECTIVE THINKING

Issue 73 h November 2009

UPDATE

POSITIVE PEER SUPPORT GROUP UPDATES SOUTHLAND Shona Fordyce of the Southland HIV Support Group writes: “We are a small group of volunteers who have mostly a nursing background. We have two men, of which one of the partnership is a nurse as well. Mostly five [people] turn up to our meetings.

I have been involved right from the start with HIV and AIDS in New Zealand, and part of this group since the late 1980s. We were a much bigger group then, and had a number of HIV positive folk on our books. We supported clients [in the early days of the epidemic] whenever and wherever we were needed.

“We helped with small chores, helping clients to visit doctors, including support, information and companionship to HIV positive people in need. We helped with shopping and when necessary helped clients to pay small bills.

“Since that time HIV positive people [with the help of medication] are living longer and healthier lives so our role has significantly changed. Our main area of work these days is in providing information and referral services to clients as well as [organising] functions but we still retain an open door policy to HIV positive people who may require help, or to access our services on a more individual, one-on-one basis.

“Our clinic doctors work in the community as well, and I travel around Southland lecturing in high schools and have done this for over 24 years. We organise the Beacons [of Hope] and Red Ribbon Appeal every year.

I go on local TV plus [have stories reported on in] the Daily Times and our mid-week newspaper which goes into every home [in the area].

“I take every opportunity to educate. Every second year, we do education on the weekend of the Beacons.

The candle lighting ceremony on top of Bluff Hill which we organise seems to grow larger every year and it is the most southern point for such candle lighting events in the world on that date. We do this at 6pm [in conjunction] with a wee [memorial] service.

“Through the STI clinic we have a great rapport with GPs, specialists and social workers here and in Dunedin.

Last year Jan, our positive lady, spoke and she is happy for us to give her name out there for positive people.

“The members of the Southland HIV Support are all volunteers in the group and are here if and when needed [by HIV positive people]. My clinic [at the Invercargill Sexual Health Centre] has been our contact point for many years. Testing is done here at the clinic with pre/ post information given.”

Shona Fordyce Clinical Nurse Specialist.

Sexual Health Service.SDHB. Q-Ten. 03 2145768 shona.fordyce@sdhb.govt.nz

CHRISTCHURCH Laura Jones, NZAF Central and Southern Regional Manager has informed Collective Thinking that, as far as she is aware, the HIV peer support organisation known as Poz Plus is no longer officially in operation, but members of the group still meet informally to offer each other support.

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UPDATE

POSITIVE PEER SUPPORT A contact for this group told us: “The group here works solely on word of mouth and has no public interface, legal or operational structure, national presence nor connection with any other HIV peer support organisation.”

If any one is interested in this group, they can contact laura.jones@nzaf.org.nz or 03 379 1953 and she can forward the message on to the appropriate person.

WELLINGTON ABSOLUTELY POSITIVELY POSITIVE

by Shane Kelly (Secretary) and Ben Walter (Chairperson)

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Absolutely Positively Positive Inc. is a notfor-profit organisation founded on the principles of providing a means of support and social networking to those people living with HIV within New Zealand via the technology of the internet. Social events have already been a huge success and will be a regular occurrence.

Absolutely Positively Positive Inc. was a suggestion provided by the late Warren Shaw, taking Wellington City Council’s “Absolutely Positively Wellington” slogan and adjusting it slightly to provide a positive feeling for people living with HIV. His idea was to provide a necessary support group for HIV positive people in Wellington.

Absolutely Positively Positive was officially incorporated in May 2008.

It is a New Zealand organisation that happens to currently have all its board members in Wellington, but invites any person from around the country to join, provide input into the organisation’s aims and operations, and to apply for board positions when they become available.

With no funding from central government, the organisation is totally reliant on community funding resources. To this extent, no member of the organisation,

including the board, receives any income from the organisation. Funding is used only for the purposes of day to day running of the organisation and social events.

We are here for the HIV positive community, no matter what their circumstances are.

Absolutely Positively Positive is still working on building a fully functioning website. The website will provide all the services that were considered of interest by the HIV positive community during the organisation’s survey conducted during 2008.

Some results of our survey showed that almost all respondents access the internet from home and almost half from work. Their primary purposes for accessing the internet was email, finding information and the latest news, and to play games. Interest was shown in links to HIV related research, news and meeting other people living with HIV. Respondents were pretty well spread between being those who were recently diagnosed through to having HIV for over 16 years. While most respondents were gay men, there were a few respondents that were female, bisexual or heterosexual. We urge more HIV positive women to join and have their say in Absolutely Positively Positive.

Absolutely Positively Positive welcomes new members and invites them to contribute ideas to our aims and direction. Joining is easy and fast and will give secure access to information on relevant events and items of interest to people living with HIV. Doctors, nurses and psychologists from hospitals and general practices will contribute their knowledge and extensive support to our online forums.

All discussion is anonymous and privacy is of utmost concern in our work with the community. With this discretion, a trust is established in which we hope will enable frank and open discussion on personal and delicate matters pertaining to all things HIV. For further information please feel free to contact us through our web site http://www.app.org.nz to join and start the journey to support.

COLLECTIVE THINKING

Issue 73 h November 2009

GROUP UPDATES AUCKLAND FUNDRAISING - THE ENDLESS DILEMMA A perspective piece from David Robertson, Chairperson, Body Positive Inc. In these times when words like recession, cutbacks, layoffs and other financially negative words are relentlessly bandied about, it’s no wonder that any funding organisation or charitable funding institution that has previously been fulsome in its largesse, is now decidedly tight-pursed.

This means that Body Positive is forced to compete against more and more community groups and charitable trusts than ever before for a slice of the elusive social donation. We are all acutely aware of the huge increase in the barrage of requests for donations in the form of television advertising, leaflets, email drops and of course the one I just don’t understand – the intrusive telephone call at dinnertime.

Coming up with new and effective fundraising strategies is not only challenging but can also be time consuming. It demands a commitment and a passion that challenges not only because it is unpaid and in most cases a fairly thankless task, but because generally the rewards are minimal for the amount of work put in. But that is the nature of fundraising, that is what we are all up against and that is why we have to persevere and go on with it.

Every charity or group dreams of receiving the big donation. On everyone’s wish list is that perennial event or fundraiser that never fails to raise vast sums of money or that truly famous person that finally comes on board and the coffers just overflow. But of course those events are few and far between and as Elton always seems to be busy and Liz – well quite frankly Liz isn’t really up to it these days – it means that at the moment we have to muck in and do it ourselves.

This year we have tried to approach it differently, and recently a separate fundraising group was formed not

only to assist with established programmes but also to try to create new and original ideas. Those ideas have flowed freely and a few of them are already in the pipeline.

A knitting group – yes, a knitting group – has been formed. This has had a fitful start but I am sure with a bit of support from a few more people and the odd lesson or two and they will be churning out garments worthy of Trelise.

Arrangements are also underway for “The First Annual Great Porn Swap Meet” to be held at Urge Bar. If you have a closet full of porn that needs a little refreshing then keep your eye out – details will be available soon.

We are also in the process of organising a silent auction: fabulous things at ridiculous prices wrapped around an afternoon of fun and hilarity. Soon an email will be coming out with details of how you can contribute the fabulous things that we will need. Don’t be slow or reticent, anything of resalable value will be gratefully received.

Of course there’s a lot of truth in that old saying ‘make hay while the sun shines’. Once winter is over we can start planning outdoor events and also hopefully take advantage of any established events taking place. One of the most popular fair weather ideas is that of holding a garage sale-cum-fete-cum-boot sale in the car park at the back of Body Positive House, with the hope of turning it into a regular event. It would mean we could utilise the kitchens to produce all sorts of goodies to sell along with all the high fashion garments produced by the knitting group… I see brand dominance on the horizon.

Earlier I talked about wish lists; at the moment probably number one on our wish list would be for more motivated people to come forward. We need people that can organise the programme. We need people with the drive and energy to start an idea and to see it through to completion. There are some great ideas that are worth doing but of course it just needs the right people to get them done.

Body Positive Inc., 0800 HIV Line or (09) 309 3989, email office@bodypositive.org.nz, 1/3 Poynton Tce, Newton, Auckland.

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FEATURE

PASSIVE SUICIDE? When your loved one won’t take medication

By Chris Banks

H

“

e became quite alienated from me. It’s strange to think we were living in the same house, it was like a ghost existence. He just lived in the kitchen, looking out at the ocean in a state of…

I don’t know what.

“He was angry at me. He resented me wanting him to take medication.”

Neil * is calm as he recounts the long, slow decline of his long-term relationship with his HIV positive partner Jeremy, but you can sense the regret and frustration in his voice.

Right from the start, Jeremy was adamant that he would not be taking medication. He said he was afraid of the side effects, but his phobic reaction was somewhat extreme.

“He wasn’t even prepared to try them for a week to see if there was an effect,” Neil recalls.

As Jeremy’s condition deteriorated, other symptoms

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began to show. Neil found himself engaged in a nearconstant battle of wills to get Jeremy to go see his doctor.

Initially, they would go and see the doctor together, but Jeremy eventually put a stop to this.

“I’d have conversations with him about going in to see the doctor to talk about his current symptoms – diarrhoea, pain, or whatever was happening that particular month. He’d go in and see the doctor and come back and tell me he hadn’t said a thing.”

Jeremy’s behaviour began to change noticeably. “He was a draughtsman by trade and got fired from his job because he was losing the plot at work, so that was one of the early signs that things weren’t working,” Neil says.

“He started having rows with the neighbours, which he’d never had before. He used to go totally off the wall.

He stopped driving, because he’d get in the car to go

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Neil found himself engaged in a near-constant battle of wills to get Jeremy to go see his doctor. Initially, they would go and see the doctor together, but Jeremy eventually put a stop to this.

somewhere and not know how to get there. He used to drive in the city with friends, but eventually refused to go to town. He went from a person being totally capable to a person totally paralysed, in a car or on the street.”

By this stage, Neil believes the early signs of AIDS dementia were setting in. “It’s those early cognitive signs that affect relationships long before hospitalisation, and I’m convinced that’s what caused him to stay off the medication.

“Things just didn’t add up for him that it would be good to take it, he thought it would be some nightmare for him to walk into. It was a kind of inverse world of values that was created for him in his mind.” *** Since the introduction of new medications, AIDS dementia complex has become less common. But Jeremy’s initial resistance to taking medication could be explained by another undiagnosed condition which has become the leading worldwide cause of disability – depression.

In the general population, the impact of depression and other mood disorders is far-reaching. One in every six New Zealanders will experience a major depressive episode in their lifetime.1 For people living with HIV, the prevalence is higher and the problems resulting from the onset more acute. Lifetime prevalence of depressive disorders among populations living with HIV range from one in five to as high as one in three, a startling elevation.2 Depression risk also increases if you are from a population at heightened risk for HIV infection, such as gay, bisexual and other men who have sex with men.3 A major three-year research project in Australia in 2006 investigated depression among gay men who attended general practitioner (GP) clinics with high HIV caseloads.

Over thirty GPs and 700 men were interviewed or surveyed on the prevalence, nature, clinical and self-management of depression.

Men who were living with HIV were found to have the

highest rates of major depression in the survey, although HIV status was not found to be independently associated with major depression after key social, psychological and behavioural factors were controlled for. Issues such as socio-economic hardship, interpersonal isolation and personal withdrawal were found to be most significant.

Professor David Castle, researcher and chair of psychiatry at the University of Melbourne, has proposed that depression is a contributing factor in HIV infection as well as complicating its ongoing management. In a presentation given at the HIV Matters Summit in February 2009, he described the overlap and interaction between HIV infection and mental illness as substantial. He also pointed out that this connection often goes unnoticed or unrecognised.

While there is little evidence currently to suggest that HIV itself causes depression, it certainly makes its diagnosis more complicated. In individuals with chronic illnesses, many symptoms of depression become difficult to assess as the illnesses can cause symptoms which mimic depression, and vice versa.

In the Australian study, GPs working in high caseload practices were found to have heightened awareness for detecting depression in gay men, whether living with HIV or not.

A high level of adherence to HIV medication is necessary to both keep the virus at bay and stop resistance developing. An American study of over 3,000 patients, published in the March 2008 edition of the AIDS Journal, found that depression “significantly worsens” adherence to HIV medication. Patients living with HIV who were not being treated for their depressive symptoms were far less likely to achieve greater than 90% adherence to their HIV medications. Adherence to HIV medication was improved for patients being treated for their depression with antidepressants.

Is depression being detected early enough? The day-today management of HIV involves a number of healthcare professionals, as well as family, loved ones and the individual concerned. How do all these components work together to

11

FEATURE

pick up on problems before it becomes necessary to have an ambulance waiting at the bottom of the cliff? *** Dr Mark Thomas is the head of the infectious diseases ward at Auckland Hospital. He says that mental health problems are rare causes of people not adhering to medication, but that it is definitely part of the mix.

How would he come to know that a patient is not adhering to medication? “If a person starts on a treatment regimen that you confidently expect would work and their three and six month test results show the virus is not being controlled, it’s likely that the person is not being adherent,” he says. “Or alternatively if they’ve been getting good results and then those suddenly take a turn for the worse.”

me sick? Almost always, the amount of viral replication that occurs during a period of one or two months while a person is getting those issues sorted out is not a great deal, and the person’s CD4 count remains fine,” he explains. “It’s not what you would want them to do, but it’s a better option than taking pills unreliably and allowing resistance to develop.”

For most patients with adherence problems, Dr Thomas says most do not need psychiatric or therapeutic assistance to deal with adherence problems, “although a large minority will need help from somebody.” *** This may include a relationship with a counsellor or therapist, but for a partner of a person living with HIV that isn’t adhering to medication, not knowing what’s going on

While there is little evidence currently to suggest that HIV itself causes depression, it certainly makes its diagnosis more complicated.

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Each time a patient is seen at clinic, they are asked how they’re managing with their pills and how many doses have been missed as a matter of routine. “Many would say I’ve never missed,” says Dr Thomas. “It’s not uncommon for people to say I’ve missed one dose in the last six months.

Most of my patients would fit into those two categories.”

But for those who aren’t it’s necessary to dig deeper, and there are a number of strategies that a clinician can employ.

“In the most worrying situations, when a person is missing relatively large numbers of doses in a month and I’m worried about that continuing, I would say stop your medicines now, completely, and you and I will tackle the issues about non-adherence. Usually the person can identify what those issues are.

“They may have problems with depression, not feeling strongly motivated to do anything around their health.

There are different things that a counsellor or psychiatrist may be able to work with over the space of a month or two and help that person begin to take their pills reliably.”

In situations like these, Dr Thomas has arranged urgent assessments and referrals to a counsellor or psychiatrist after hearing about adherence issues. Understandably in these situations, people are often surprised that he is advising to stop taking medication.

“People say – what? Stop my drugs? Won’t that make

behind the closed doors of a doctor’s office or therapy room can be frustrating.

“I went to see Jeremy’s doctor and was told that his medical condition was none of my business,” Neil says. “It was the same story with clinicians and counsellors. I was on the phone every hour trying to get somebody to help.”

Health professionals are bound by confidentiality unless there is an immediate risk of self-harm, but counsellor Bede Stevens says this doesn’t mean that information provided by concerned partners goes into a vacuum.

“It can be incredibly frustrating for the partner,” he acknowledges. “I had a mother ring me up about her daughter, and I wasn’t able to confirm I was seeing her daughter. But I could use the information she gave me. It is worth making the call.”

What happens when a counsellor receives concerning information? “I can hold the information in mind, and then carefully check it out. There are always ways of doing that.

One can be very careful and caring and raise it in many different ways.”

Dr Thomas agrees. “Obviously you can’t say, ‘your partner Steve has rung me about you not taking your meds.’

But if I looked after Bruce and Steve rang me up then I would bring it up with Bruce without disclosing the phone conversation. People expect to have the conversation

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about adherence, and they’re used to us being nosey as part of the job.”

Also in Auckland and working at a more grass-roots level is the Community HIV Team. The team aim to reduce hospital admissions by providing support in a number of ways, including supporting medication adherence and empowering people to take responsibility for their own health.

Susan Mundt is the team’s social worker. Although issues around adherence to medication are usually referred to the nurse specialists within the team, Susan has dealt with these issues in the past.

“I was called by a friend of a man whose case I managed and I was told he wasn’t taking his medication,” she says.

“I then called him up and just asked him how things were going, and he admitted he wasn’t taking his medication. It became clear during that conversation that he was in a depressed state, feeling low about life.”

Mundt maintained contact with the man during this period and ensured he was referred for counselling.

Hillary Gerrard is a clinical HIV nurse specialist within the team, and has been working with people living with HIV and their loved ones for more than 25 years. The team’s work involves seeing people outside of a clinical environment and going into homes, where it’s less easy for problems to be concealed.

“A lot of our contact between appointments is done by phone, but if there are concerns that someone isn’t doing well, then we will go and see them. We’ll sit down face to face and talk about it,” she says.

“Going into an environment, you can see how someone is coping. If the house is really untidy and messy, if the person isn’t looking so great…sometimes you only have to look at someone’s face to see if they’re not coping. If you ask people what they’re doing and they say they’re not doing much, they’re not getting much pleasure out of life, nothing’s making them happy…I’ve been doing this for 25 years, so it’s experience that you pick up that allows you to tell if something’s wrong.”

In addition to the training and experience the team’s nurses already have, specialist mental health expertise is being added in the form of mental health nurse Phil Nottingham. “We’re having more interaction with mental health services, and hopefully that will get better,” Gerrard says. ***

to Australia before returning to New Zealand shortly after in a state of distress.

“I was too ill to live alone, so I had to stay with a friend for about eight months. By this stage I was getting regular therapy at the NZAF Burnett Centre, but the experience had already totally destroyed me,” he says.

His partner was moved to the now-closed Herne Bay House, where he spent nine months. He was put on medication and eventually stabilised.

Neil’s experience has still left him wondering whether the health system is fully equipped to cope with managing emerging mental health issues for people living with HIV and the effect this has on partners, families, and the medical professionals who may find themselves caught in ethical dilemmas of confidentiality between partners and patients.

“There needs to be more support for partners, some alternative respite, and also for the doctors who are dealing with these issues,” Neil says. “It’s a terrible irony. Jeremy wouldn’t take pills to save his life, but if he’d taken a big handful of pills to kill himself, he would have had that support in a flash.”

1 According to the New Zealand Mental Health Survey released September 2006, within the mood disorders, major depressive episode is the most prevalent disorder with an overall lifetime prevalence rate of 16.0%.

Oakley-Brown, M. A., Wells, E., Scott, K. M., & McGee, M. A. (2006).

Lifetime prevalence and projected lifetime risk of DSM-IV disorders in Te Rau Hinengaro: The New Zealand Mental Health Survey. Australian and New Zealand Journal of Psychiatry, 40, 865-874.

2 http://www.thebody.com/content/living/art1819.html Cross-sectional and prospective studies in populations living with HIV estimate the lifetime prevalence of depressive disorders ranges from 22% to 35% and the current prevalence (1-2 months) ranges from six percent to ten percent. These rates are all elevated when compared to the estimates of lifetime (nine percent) and current (three percent) prevalence of major depression in the general community.

3 http://www.thebody.com/content/living/art1819.html Similar to persons living with HIV, people who are HIV-negative, but at-risk for HIV infection, have similar increases in rates of depression. In other words, if you are from a population that is at-risk for HIV infection, you are also at increased risk of depression compared to the general population. * Names in this story have been changed for privacy reasons.

Sadly, Neil’s relationship ended as the stresses and strains of Jeremy’s behaviour took their toll on his own mental wellbeing. He eventually moved out of the house, and fled

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REPORT

TOGETHER WE ARE THE SOLUTION

26th International AIDS Candlelight Memorial Report

By Eamonn Smythe - National Candlelight Co-ordinator, New Zealand International Candlelight Co-ordinator, East Asia and Australasia

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OVERVIEW The theme for the 2009 International AIDS Candlelight Memorial was ’Together We Are the Solution’, a theme that allowed for a broad level of raising awareness and advocating for the advancement of AIDS policy at all levels.

At the heart of each year’s memorial is the declaration of solidarity, created by an international advisory board which represents every world region, in collaboration with the Global Health Council. The declaration was read out and made available at each of the events this year.

The declaration was sent to the leaders of each political party in New Zealand, along with a request to provide a statement to be incorporated into the Memorial events, as well as being supplied to various media outlets.

While messages were received from the Prime Minister and Leader of the Opposition, neither referred to the declaration, preferring to give more generic messages of support.

The communities most affected by HIV, particularly people living with HIV, were strongly involved in the planning and participation of the Memorial events. Events nationwide were developed and held with the assistance of many different people from a multitude of backgrounds.

Memorials were held in Auckland, Hamilton, Wellington, Christchurch and Invercargill and an independent memorial was also held in Northland.

Sadly, no memorial was held in Dunedin this year as key members of the local planning group had moved to other cities and it was not possible to find successors for them.

The event was sorely missed by the local community and an agreement has since been reached with St Paul’s Cathedral in the Octagon to co-ordinate the Dunedin Memorial in 2010.

This year’s report again shows great examples of people working together for a common cause.

AUCKLAND Participants: 120-180 people Auckland has had a Candlelight Memorial service since the 1990s, with numbers of attendees fluctuating over the years. A few years ago, numbers had dwindled to such a low point that the cancelation of the Memorial was seriously considered. Fortunately, to the delight of organisers, numbers have picked up significantly in the last few years.

People representing diverse communities attended this year’s service, and many of these took part in the ceremony.

The programme of the event has changed with the times and been embraced by people living with HIV. The major change has been the cessation of the calling of names, which has been replaced with different ways of acknowledging those who have passed. In 2009, as people came forward to light their candles they were invited to write a name or the names of those they wished to remember on a canvas which has been mounted, framed and will be hung in the NZAF Burnett Centre. In 2008, attendees placed names on a pohutukawa tree that was planted at the Circle of Friends memorial garden in Western Springs Park.

Organisers aimed for an inclusive evening, respectful of age, gender, ethnicity, nationality, religious beliefs and sexual orientation.

HAMILTON Participants: 25 people Hamilton has also had a Candlelight Memorial service since the 1990s. Over the years, the numbers attending have diminished for various reasons. Approximately 25 people representing various communities including M ori, African and the rainbow communities attended this year’s service.

A powerful symbol of remembrance was provided this year through the presence of one of the AIDS Memorial Quilts.

The service was opened with a karakia and blessing by Geoff Rua’ine, Health Promoter, NZAF Te Pu waitanga o te Ora in Hamilton. Geoff facilitated the evening alongside Lynda Johnston from the Hamilton Pride committee and

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Waikato University. Following the karakia Lynda read out the official declaration of solidarity.

Robyn Cresswell, Counsellor, NZAF Te Pu waitanga o te Ora read the statement from the NZAF Trust Board. Simon Hinchco, Wintec rainbow communities representative and Hamilton Pride committee member, read the message from the Governor-General, the Hon Sir Anand Satyanand.

Following this, National MP David Bennett read out the message from the Prime Minister John Key. Finally, Labour MP Sue Moroney read out the message from the Leader of the Opposition Phil Goff.

After the messages were shared, Geoff introduced the guest speaker, Marama Pala of INA (Indigenous, M ori and Pasifika HIV/AIDS Foundation). This was the highlight of the evening as Marama shared parts of her journey as a M ori woman living with HIV, her hopes for the future and her support for this year’s theme that ‘together, we are the solution’.

The participants were then invited to speak or share someone’s name. before the lighting of the candles took place. Once all the candles were lit, the lights were turned off and the audience were treated to the soulful voice of soul diva Patti Labelle, herself a tireless campaigner for HIV and AIDS awareness.

The ceremony was then closed with a karakia and blessing by Geoff followed by supper, tea and coffee. The organisers would like to give thanks to all who participated and supported, and to Michael Bancroft, Keeper of the AIDS Memorial Quilt.

WELLINGTON Participants: 150 people The 2009 International AIDS Candlelight Memorial was held at St. Andrews-on-the-Terrace. It was a cold, windy Winter’s night but this did not seem to deter more than 150 Wellingtonians who braved the elements to attend.

An inclusive, community-wide spirt of involvement marked this year’s Memorial. Activities began at 1.00pm

with a multitude of volunteers industriously making sandwiches and wraps, then moved to the church to help set up. Sections of the AIDS Memorial Quilt were draped around the church along with rainbow flags, candles, programmes, red flowing tablecloths and pictures of those lost along with a Memorial Book. Thanks to a generous donation beautifully arranged flowers covered all the tables.

Finally, the lights were dimmed, creating an atmosphere that was very moving.

This year Bill Logan read a tribute to the late Sister Paula Brettkelly QSM, acknowledging all the work she had contributed to the community. Former NZ Idol winner Rosita Vai performed while the candles were lit from the balcony of the church. Labour MP Grant Robertson was in attendance along with three NZAF Trust Board members.

Supper was served after the service which was well attended and much favourable feedback was received. It was a deeply moving and memorable night for all, including the organisers and participants.

CHRISTCHURCH: Participants: 40 people Approximately forty people attended the Christchurch Memorial, held in the Great Hall at the Arts Centre. Human Rights Commissioner Richard Tankersley spoke and led the karakia and waiata at the opening and closing of the Memorial.

A poem was read by a community member, after which Laura Jones, NZAF South/Te Toka Regional Manager, led a call and response for the whole group.

Candles were lit, and carried in a circle after the calling of the names of those who have passed away. A jazz guitarist provided a musical accompaniment throughout the ceremony.

Labour MP for Christchurch Central, Brendon Burns, was in attendance, along with an NZAF Trustee and two former NZAF Regional Managers. Those who attended reported a positive and meaningful experience.

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WOULD YOU LIKE TO BE PART OF A NEW POSITIVE PEOPLE’S REFERENCE GROUP BEING ESTABLISHED BY THE NZAF? T n koutou katoa,

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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 the NZAF Positive Health Services.

This will enhance the ongoing relationship the NZAF has with HIV peer support organisations and the contribution of staff living 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 the 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 approximately nine people, with a focus on individuals rather than representatives of existing organisations. This will ensure that members of the group can add value to the relationships we already have with HIV peer support organisations.

It is hoped 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, those new to treatments, those who have not yet started and parents of children with living with HIV. Once formed, the group will meet every three months for a full day and contact will be maintained between members of the group throughout the year. The draft terms of reference include: • Helping to establish the direction for future issues of Collective Thinking • Reviewing any planned materials for publication by NZAF Positive Health Services • Reviewing changes to systems and services such as the NZAF Positive Speakers Bureau and Wellness Fund • Providing input into the annual process of setting operational goals • 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 participants don’t need to be published, group members will need to be comfortable with their status being known by some NZAF staff other than the NZAF Director Positive Health Services to assist with administration.

If you are interested and wish to become a member of this group please contact Eamonn Smythe, NZAF Director Positive Health Services or your nearest NZAF Regional Manager by 1 December 2009. 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.

Eamonn Smythe NZAF Director Positive Health Services eamonn.smythe@nzaf.org.nz PO Box 6663 Wellesley St Auckland 1141 Fax | 09 303 3149

Wayne Otter NZAF Northern and Midland Regional Manager wayne.otter@nzaf.org.nz PO Box 6663 Wellesley St Auckland 1141 Fax | 09 302 2338

Laura Jones NZAF Central and Southern Regional Manager laura.jones@nzaf.org.nz PO Box 13618 Armagh Christchurch 8141 Fax | 03 365 2477

COLLECTIVE THINKING

Issue 73 h November 2009

INTERVIEW

HOLDING THE MAN A poignant memoir about HIV captures the hearts of Auckland audiences Interview by Chris Banks

H

olding The Man is regarded as a seminal piece of Australian literature. It won the United Nations Human Rights Award for non-fiction in 1995 and was among the 100 Favourite Australian Books selected by the Australian Society of Authors in 2003.

This best-selling memoir by Tim Conigrave centres on Conigrave’s relationship with his partner of 15 years, John Calleo, from the time they met in the 1970s at a Catholic boys high school, through to John’s death from AIDS in the early 1990s. The book was published by Penguin Books in Australia in 1995, just a few months after Conigrave’s own death.

Fast forward ten years to 2006, where playwright Tommy Murphy adapted Holding The Man for the stage.

It was a runaway success, becoming one of the most successful Australian stage productions of recent times.

Acclaimed New Zealand actor and director Shane Bosher brought Holding The Man to the Silo Theatre in Auckland for a sell-out season in August, to rave reviews. He spoke to Collective Thinking about how the production came together and the important role that the real stories of people living with HIV played in his research.

How did you discover the story?

I actually had the book sitting on my shelf for a number of years, and I hadn’t read it because it had a really ugly cover [laughs]. Eventually I ended up reading it when I got sick. I ended up sitting in bed reading it from cover to cover in one sitting, which is rare for me.

The thing that really grabbed me about it was its humour and really visible soul. Often stories like this are exceptionally grim and while they convey the realities of AIDS, they don’t always portray the heart and courage around it. But this book, and this adaptation, really captured that.

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Shane Bosher

Tim comes across as quite an unsympathetic character at times. Do you think he was aware of this when he was writing his memoir?

Our take on it is that Tim wrote the book to say sorry to John – sorry for what I did to you, and thank you for being part of my life. One of the things we discovered, both in our own research and in learning about the interviews Tommy [Murphy] did with people who knew Tim is that he could be a bit difficult. And that’s one of the wonderful things about the story – Tim is being really honest about himself. Often in stories like this we’re given a really sympathetic hero, and I think through this we understand him a little bit because of his fallibility.

INTERVIEW

“The thing that really grabbed me about it was its humour and really visible soul. Often stories like this are exceptionally grim and while they convey the realities of AIDS, they don’t always portray the heart and courage around it.”

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How much research of your own did you do before starting rehearsal?

I went to Sydney and Melbourne about two months before we went into rehearsal. The aim was to talk to people that knew Tim and John, which I didn’t end up doing – I made the decision that it was better to work exclusively with the text and not let other people’s opinions colour our work.

But I did speak to a lot of people, several doctors and nurses who had worked at St Vincent’s during the height of the epidemic, as well as people living with HIV who were diagnosed in the late 1980s who talked about the realities of AIDS back then within Sydney and Melbourne.

I also did a lot of reading – Randy Shilts’ And The Band Played On, Paul Monette’s Borrowed Time, and then I discovered William Yang’s Sadness – he’s a social history photographer, and we used a number of his photos as part of our set.

Sadness was a pivotal work documenting the late stages of illness of several people he knew, a comparison of how they were at the beginning of their illness and right at the end. And that was a magnificent touchstone for us.

We also worked a lot from documentaries. We found a wonderful resource called The Hidden History of Homosexuality in Australia, which went right back to colonial times. In that, a number of people spoke about both the gay pride movement, the epidemic in the 1980s, and what it was like attending funerals every two weeks.

What about the actors?

The actors all found their own way through. A lot of the resources that I had worked with, they also picked up, some well in advance. And from there, Douglas Jenkin from the New Zealand AIDS Foundation came in to visit us, and at that time we were two weeks through the rehearsal. He provided not only a fantastic snapshot of what it meant from a really human perspective within the 1980s, but also what it means today – because the realities are certainly quite different.

Why did you decide to choose this story?

One of the reasons we programmed it is not only because it’s a great piece of work, but to open up a new dialogue with our audience. Our audience is much younger than most other theatre companies. Anyone below thirty didn’t grow up with the horrors of the epidemic because they were far too young to understand or comprehend it.

I look at myself growing up in the 1970s and 1980s – we were told that if we had sex, we’d die. At high school, everyone was told that. So there was an extraordinary deal of fear around it. Whereas for a lot of younger people, particularly younger actors, their knowledge was minimal. So this has been an eye-opening journey for them. What’s great about it is that engaging with this work has provoked them into considering their own sexual histories and their own behaviours, which regardless of their sexuality is a great thing to do.

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Issue 73 h November 2009

OPINION

ELEGY

by Michael Stevens

M

ike, Glenn, Alan, Peter, Alan, Andrew, Chris, David: I used to have a list somewhere of all the names of the men I know who’d died. Then it got too long. And now I can’t remember everyone I knew who died of AIDS. I hope their families still do, but it is over twenty years now since many of them sickened and died. Even to their brothers and sisters they will be turning into misty memories, the sadness and grief now all but worn away over time, as they look at old photos and remember the good times.

I suppose this is what it is like after a war. Twenty years on who wanted to hear talk of the trenches of World War I and their horrors, or who in the 1960s really cared about the agony and brilliance of the Battle of Britain pilots?

Who cares today about the veterans of the first Gulf War? But in all of these, families were destroyed. Young loved men in the prime of their lives disappeared into some distant land or city, and returned, if at all, either plaguewracked and waiting to die or already dead, to the fear and grief of their families.

I remember that the first support group I went to at Body Positive had two facilitators: One died three weeks after the group started. “This is what will happen to us all,” was the silent thought around the group. But I know at least three of us are still alive, if not more.

At least in a war, the dead are honoured. But for us, our dead were not so welcomed, not initially. The fear of contagion surrounding even a corpse was strong. To have to admit to friends that a son who’d got sick and died had had AIDS was shameful. Shame, guilt, ostracism, doubt and fear: HIV is marked with all of these in ways that other diseases are not. And if you nursed people through those days, watched them sicken and waste away, become demented, forget who you were even though you’d been spending hours every day with them, this was heartbreaking. It seemed a whole generation of beautiful young men were cursed, and we all wondered when our turn would come, because why should we escape?

Today, it is all so different, in a medical sense anyhow. For most of us, if you take your pills and do what your doctor says, you will be OK. Medically OK that is. But those deep currents of shame and anguish linger and are strong. Grown

men still weep in fear and at their folly in getting infected.

Even though they know in a rational sense that they will most likely not follow the same trajectory as we did back in the early days, still that sense of fear, of shame and of guilt is there, still strong, perhaps even stronger. After all, that little voice inside your head says, “They knew the risks!” And it’s true, they did know what they were doing, and even so, in spite of all the safe-sex campaigns they’d been in, in spite of all the condoms they’d thrown off floats in parades, in spite of having manned AIDS hotlines, even they got it eventually, and they cannot help but ask themselves: “Why? How?” They will not die in the same way as all those men did twenty years ago, blind, demented and lying in their own shit. They will be able to lead fairly normal lives. Travel.

Have relationships. Have sex. Maybe even have kids. All this is possible now for those of us with HIV. But still, the shock is there, the trauma, the agony.

And for those of us old enough to remember the really bad days, for me anyhow, there is that sense of, “Why did we have to go through all that horror?” along with a feeling that, in some ways, that is when in fact we were most alive, most useful, most worthy as human beings. We were in there, at times up to our elbows, dealing with sickness and death and grief on an almost daily basis. It was horrible, debilitating and sorrowful, and yet it felt for many of us as though we were doing the most valuable and important things that could be done.

And who remembers that now? Did it all happen? Did it matter? This generation today – they have no idea. And why should they? In fact, I want to protect them from it – but still I resent their blithe ways and their lack of understanding, their lack of history.

But then, go through small-town New Zealand and look.

You will see them there, small memorials from World War I or II; in my school chapel we even had a memorial for the Boer War dead. Think of the heartbreak every one of those deaths caused, the devastation and distress on receiving that letter or telegram, knowing that son was never coming home. And now, who remembers the person behind those names? Who recalls their laugh, what made them special. All gone, generations ago. And so will all this be gone too. Who will remember them, with their good points and flaws? Who will recall how they were loved?

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CONFERENCE

RESEARCH ROUNDUP: 5TH INTERNATIONAL AIDS SOCIETY CONFERENCE The 5th International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention was held in Cape Town, South Africa, on 19-22 July 2009. Below is a summary of some of the papers presented at this conference.

Vaginal washing increases HIV infection risk; results for dry sex less clear-cut

by Roger Pebody, aidsmap.com / 30 July 2009

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A meta-analysis of data on vaginal practices and HIV infection from ten African cohorts has found that both vaginal washing with soap and wiping the vagina with cloths, tissues or paper were associated with an increased risk of acquiring HIV, researchers reported. The use of products to dry or tighten the vagina, often referred to as “dry sex”, did not however have a statistically significant association with HIV infection.

Globally, there is a wide variety of vaginal practices and products used by women to clean, tighten, dry or warm the vagina. Women’s efforts to change their genital environment can undermine the body’s innate defences against pathogens. In particular, vaginal practices have been linked to disruption of the vaginal epithelium and loss of lactobacilli (i.e. an increase in bacterial vaginosis, which is also associated with an increased risk of HIV infection).

In resource-limited settings with strong imbalances in power between men and women, women may be motivated to adopt vaginal practices which enhance men’s sexual pleasure in order to maintain economically essential relations with husbands or other sexual partners. Other reasons to engage in these practices include genital hygiene, self-treatment of vaginal discharge, and pregnancy prevention.

Partly because of the wide variety of vaginal practices in different communities, and because of differences in the way in which practices have been recorded by researchers, epidemiological studies have so far produced conflicting findings on whether vaginal practices are associated with an increased risk of women acquiring HIV.

An international team of researchers therefore took the data from ten previous studies, and conducted an individual patient data meta-analysis. Most meta-analyses involve combining the end results from a number of different studies, whereas the approach taken here involved re-coding and re-analysing the data for each individual who had participated in the ten separate studies. This allowed for vaginal practices to be recorded according to a standardised classification system and for new analyses to be carried out.

The analysis from ten cohorts in six sub-Saharan African countries includes 16,307 women, of whom 865 contracted HIV. Six cohorts were of women in the general population; four were of commercial sex workers or women working in high-risk settings. There was a wide variation in the prevalence of both vaginal practices and bacterial vaginosis in these cohorts.

Compared to women who had no vaginal practices or who cleaned the vagina with water alone, women who cleaned with soap had an increased risk of acquiring HIV. In multivariate analysis (which controlled for age, marital status and number of sexual partners - the only factors found to skew the result), the hazard ratio was 1.22 (95% confidence interval 1.00-1.49).

Women who used cloths, tissues or paper to wipe the vagina and remove moisture also had an increased risk of infection. In multivariate analysis, the hazard ratio was 1.41 (95% confidence interval 1.03-1.77). The researchers suggest that some items used intravaginally may be more harmful than others and could cause abrasions.

As the lower confidence interval for the last two factors was above 1.00, the results are considered statistically significant (i.e. unlikely to be produced by chance alone).

However in the case of the use of products to dry or

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tighten the vagina, the hazard ratio was 1.23 (95% confidence interval 0.97-1.56). The lower confidence interval of 0.97 means that this result is not statistically significant, but Matthew Chersich, presenting, said that the findings did suggest that these practices are harmful.

The researchers hypothesised that vaginal practices may cause an increase in bacterial vaginosis, which in turn leads to an increased risk of HIV acquisition. However, when bacterial vaginosis was added to the multivariate model, it did not substantially affect the results.

Matthew Chersich said that although the meta-analysis had attempted to re-classify previous studies’ data using a standardised classification, the questions used in the studies were often ambiguous. He called for more research which asked more precise questions about different practices and products. He also recommended evaluation of interventions encouraging women to switch to less harmful practices, such as washing with water alone.

Concentrating on the finding that washing with soap is associated with an increased risk of infection, he noted: “The effect size is modest, but as this is a very common practice, at a population level a small effect would have important implications”.

Increased risk of HIV transmission in serodiscordant couples wishing to conceive

by Lesley Odendal, aidsmap.com / 27 July, 2009 Harm reduction interventions to avoid HIV transmission in heterosexual, serodiscordant couples who wish to have children are urgently needed, according to Dr Sara Brubaker, from Kenya.

A study conducted in Kisumu, Kenya, found that HIV-serodiscordant couples, where one partner is HIV positive and the other is not, continue to conceive despite knowledge of their serostatus. In this cohort, couples who conceived were at eighty per cent increased risk of HIV transmission between the partners.

A large proportion of new HIV infections in sub-Saharan Africa occur in stable heterosexual partnerships. The Kenya AIDS Indicator Survey of 2007 showed that half of Kenyans living with HIV have partners who are HIV negative.

Prevention efforts have focused on couples-based HIV testing. Although couples studies in central Africa have shown that condom use increases when couples learn about their discordant status, these same studies had shown that twenty to 43% of couples continue to have unprotected intercourse despite knowledge of their serostatus. This behaviour is often motivated by the desire to have children.

A systematic review of factors influencing fertility desires

in people living with HIV showed the factors that positively influence the desire and intention to have children are young age, having few or no previous children and having access to antiretroviral treatment.

Once-daily Kaletra as safe and effective as twice-daily dosing

by Liz Highleyman, aidsmap.com / 22 July, 2009 Lopinavir/ritonavir (Kaletra) taken once-daily as part of a combination antiretroviral regimen worked as well as the approved twice-daily dose in previously treated patients but led to better adherence.

Past studies have shown that once-daily and twice-daily Kaletra work equally well in people starting treatment for the first time. Study M06-802 was designed to see whether this was also the case for treatment-experienced patients.

There had been previous concerns that once-daily Kaletra might be less effective in treatment-experienced patients.

Overall, the once-daily and twice-daily Kaletra doses were similarly well tolerated. Comparable proportions of participants (78%) in both arms completed the study, and most drop-outs were due to reasons other than adverse events. Side effects led fiver per cent of patients taking the once-daily dose and seven per cent of those taking twicedaily doses to withdraw from the study.

About one-quarter of participants in both groups experienced side-effects. The most commonly reported Kaletra-associated side-effects were diarrhoea (14% in the once-daily arm vs. 11% in the twice-daily arm) and nausea (3 per cent versus seven per cent, respectively). Similar proportions in both groups had elevated cholesterol (about seven per cent) and triglycerides (about five per cent).

The investigators concluded that once-daily and twice-daily Kaletra had similar efficacy and tolerability in treatment-experienced patients, but the less frequent dose led to better adherence.

[Co-editor’s note: This news item should not be taken as a substitute for professional medical advice. We would not advise altering your medication regime without first speaking with your HIV clinician.]

This material is based on an original copyright publication

by NAM Publications, an independent HIV information charity based in the UK. Permission for this translation has been granted by NAM. The original publication can be viewed at www.aidsmap.com. NAM cannot be held responsible for the accuracy of the translation nor the local relevance of the text.

21

UPDATE

HIV TREATMENTS UPDATE

By Jack Dragicevich

O 22

n 27 May 2009, a very successful national forum on HIV treatments information was held in Auckland at the Otago University building on Queen Street.

The objective of the full day event was to present and discuss a range of HIV-related topics to an audience with differing levels of knowledge, and to share that information with those affected by HIV and with those working in a variety of capacities within the HIV health sector.

Attendees included drug company representatives, pharmacists, counsellors and therapists, HIV specialists and doctors, HIV support groups, drug and alcohol support services, sexual health services as well as people living with HIV and other interested parties keen to learn, network and share more information about this illness and its future direction in New Zealand.

A presentation by Dr Nigel Dickson of the Otago University AIDS Epidemiology Group showed how the dramatic effect of the HIV pandemic is reflected in the statistics. The term “the five per cent club” refers to the percentage of New Zealanders who were infected in the late 1980s and early 1990s who are still alive in 2009. By comparison, over 75-80% of those diagnosed after 1995 are still alive. These statistics show the dramatic impact that effective HIV treatment has had in saving lives. The remaining 15-20% reflects individuals who, for a variety of reasons, may have had poor adherence to antiretroviral treatment, and are the group most likely to contribute to HIV morbidity statistics since 1995.

Dr. Rod Ellis-Pegler, former Head of Infectious Diseases at the Auckland District Health Board and one of the top HIV specialists in New Zealand, spoke movingly and personally of his experiences over twenty years of working with patients with HIV before his retirement a couple of years ago. He spoke of the evolution of HIV from a disease that was invariably fatal in the 1980s to a

chronically manageable condition by the late 1990s-early 2000s.

Dr Mark Thomas of Auckland Hospital’s Infectious Diseases Department spoke on the role and goals of HIV treatment. “In any standard 3-drug combination it should be possible for 80-90% of patients to achieve an undetectable viral load within six months of starting treatment” he said.

However experience has shown that approximately ten to twenty per cent of patients will not. The most common reason for this is poor adherence (failure to take the pills reliably). Poor adherence counts as anything less than 9095% of doses. Poor adherence leads to resistance to one or more drugs within months to years, ultimately undermining the number of options for future treatment of such patients. For patients on a once a day regimen, resistance and ultimately failure of a treatment regimen may arise by missing simply two to three doses of the drugs per month.

If viral resistance occurs, then a physician usually has enough other drugs in other drug classes to make up a new treatment combination. However a patient may not have sufficient drugs left for a fourth change of regimen.

In terms of when to start a patient on treatment, Dr Thomas said a number of things need to be considered, such as the chance of the patient developing resistance or whether the patient has been infected by a resistant strain; the toxicity of the drugs and how this may affect adherence and thirdly the cost of treatment – whether financial or psychosocial.

Dr Bruce Brew, a specialist in HIV and its relationship to mental health issues from St Vincent’s Hospital, Sydney, Australia gave a lengthy and somewhat technical presentation on the high and largely undiagnosed rates of HIV dementia and those affected by a range of mental health impairments among people living with HIV. He reported that treatment with HIV medication

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appears to be largely ineffective in stopping or lessening the effects of such dementia and related mental health conditions. This may be due to the damage HIV itself has caused, or to the long-term toxicities of HIV medication.

Some patients have a genetic or family predisposition to mental health problems, which is amplified by the presence of HIV. Dr Brew suggested that as many as twenty to thirty per cent (possibly much higher) of people living with HIV will develop some degree of impairment or dementia as they age. (Co-editor’s note: However there are currently trials of new agents, such as prezista/darunavir, and other medications under investigation that may have a significant impact in delivering more effective treatment across the blood/brain barrier in the not too distant future.)

In the latter half of the day, Dr Thomas spoke about the clinical management of patients living with HIV. Topics included: a discussion on some of the common and rarer opportunistic infections related to an AIDS diagnosis; what factors a physician uses to successfully treat and manage HIV medication; a brief discussion of postexposure prophylaxis (PEP), and when and why it is used; at what stage it is best to start treatment; what markers do physicians use to detect resistance to medication; why viral load (rather than just CD4 count) is the most important marker to indicate if treatments are working or not; the importance of achieving an undetectable viral load and many related topics. There was also an interactive component where the audience was invited to participate by responding how they would manage a patient in certain hypothetical situations.

Dr. Richard Meech then gave a comprehensive discourse on the direction and development of new and future generations of HIV medications by starting with an overview of the viral lifecycle of HIV and how, on a cellular level, HIV

infects and destroys cells of the human immune system.

He described in detail how the virus attaches itself to a specific receptors on the surface of the CD4 cell and, by using compounds known as chemokines, inserts itself through the cell wall and gains entry into the cell; how it then uses critical proteins such as protease and integrase to enter into the cell nucleus; splices its own RNA into the DNA of the cell, causing the cell to become a virus factory that produces thousands upon thousands of viral copies, overwhelming and thus destroying the host cell. By describing the viral lifecycle in such detail, Dr Meech was able to pinpoint how the existing classes of HIV medications work and where future generations of drugs can be developed, such as fusion and chemokine inhibitors to stop the virus gaining entry into cells; by blocking the virus from using essential proteins and enzymes to replicate itself such as integrase and protease inhibitors and other compounds within the cell that HIV uses to develop “mature� viral copies, hence the possibility if creating a new class of drugs known as maturation inhibitors.

Some of the new generation of HIV drugs to look for include raltegravir (an integrase inhibitor); darunavir (a new protease inhibitor), maraviroc (an entry inhibitor), vicraviroc (a CCR5 entry inhibitor and candidate as a possible therapeutic vaccine) and etravirine (intelence) a new NNRTI (non-nucleoside reverse transcriptase inhibitor), and SP-01A (a candidate as an oral entry inhibitor) to name a few.

In the final session of the day, there was a wide ranging panel discussion and interactive question and answer session, where the audience could ask questions and raise matters with Drs. Thomas and Meech.

The feedback from participants is expected to show that these type of widely accessible forums are valuable exercises and that there is a desire to see them become regular or possibly annual events.

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POSITIVE WOMEN

TREAT YOURSELF RIGHT

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EXCERPT FROM TREAT YOURSELF RIGHT Treat 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 people living with HIV, such as sexual health clinic staff, 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 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 beside 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.

Look for published extracts from Treat Yourself Right in upcoming issues of Collective Thinking.

TELLING PEOPLE YOU ARE HIV POSITIVE It is hard to know how people will react if, and when, you tell them you are HIV positive. Many people find that family, close friends and partners are very supportive and understanding. Unfortunately, there is still some ignorance about, and stigma attached to HIV infection. Nonetheless, it is important that you do have people whom you can talk

with about being HIV positive.

You may be thinking about whether to tell family or friends. When you are thinking about whether you should tell people, and whom you might tell, it may be useful to consider the following questions.

• Can I trust this person with this information?

• Will they offer me support?

• Are they likely to judge me?

• Will they respect my confidentiality?

You may find it useful to discuss these issues with a counsellor or another HIV positive person. If you want to keep your HIV status fairly private but want to be able to discuss it with a few trusted friends, it is a good idea to give the people you tell permission to talk to another specific person. This is a practical way of keeping the information private, while recognising that a person may need to talk about it with another trusted person.

TELLING PARTNERS If you are in a relationship with an HIV negative partner who does not know you are positive, you may want to tell them. This can be difficult, but you will probably need their support and understanding to help you to live with HIV. You may be afraid that your partner will be angry, accusing or judgmental.

Your partner may certainly be scared or confused. You might be scared that he or she will leave you. It can be as big a shock to your partner as it was for you to learn that you are HIV positive. It is often helpful to have a doctor or HIV counsellor available to support you and answer questions when you tell people close to you.

Your partner may want to consider having an HIV test. You will probably find that your partner can come to terms with you being HIV positive and, in fact, it may strengthen your relationship. You may need to discuss issues about safer sex.

TELLING CHILDREN It’s up to you when you want to tell children that you are HIV positive. This is one of the main issues that arise for women with children after diagnosis. Talking with other positive women, particularly those with children, can be really helpful for exploring different approaches you might take. This is also an issue that you can discuss with a counsellor or health care professional if you would like some guidance on what might be best for your particular

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CIRCUMSTANCES IN WHICH THE LAW MAY REQUIRE DISCLOSURE Generally, you are not obliged to tell anyone if you are HIV positive. However, in some circumstances, the law requires that you disclose.

• HIV positive people are legally obliged to tell any sexual partner if they have unprotected sex (sex without a condom) • The Department of Immigration requires anyone applying for permanent residency in New Zealand to be tested for HIV

family circumstances.

Some women decide to talk to their children straightaway, whereas others decide to wait until the children are older.

It very much depends on the family situation and your judgment. You know your children and are in the best position to make this hard decision.

When you decide to tell your children, it may be a good idea to tell some other people who can provide support for the child – maybe an aunt or a good friend whom your child trusts. Older children may feel angry, particularly if they feel that important information has been withheld.

THERE ARE PEOPLE YOU DO NOT HAVE TO TELL If you are HIV positive, you do not have to disclose your HIV status to: • your friends • your employer • your work colleagues • doctors, dentists or other health care professionals Having said this, it may be wise to tell any doctor treating you — particularly over the long term, or for serious conditions — that you have HIV. To help you make the best decisions about your health, your doctor will need as full a picture as possible. It is also a good idea to tell your dentist, since HIV can affect your gums. If you do tell a doctor, dentist or any other health care provider, they cannot refuse to treat or manage you: this would be discrimination and against the law.

DISCRIMINATION If you are refused any service or believe you have been treated unfairly because you are known or presumed to be HIV positive, this may be a case of discrimination. It is against the law to discriminate against people because of their HIV status.

If you would like more information about how to deal with HIV-related discrimination, contact the Health and Disability Commission (contact details below) or your local HIV peer support group.

Health and Disability Commissioner Freephone: 0800 11 22 33, Email: hdc@hdc.org.nz Website: http://www.hdc.org.nz/ Auckland Office Street Address: Level 10, Tower Centre, 45 Queen St Postal Address: PO Box 1791, Auckland Phone: (09) 373 1060, Fax: (09) 373 1061 Wellington Office Street Address: Level 13 Vogel Building, Aitken Street Postal Address: PO Box 12 299 Wellington Phone: (04) 494 7900, Fax: (04) 494 7901 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: positivewomen@xtra.co.nz Web: www.positivewomen.co.nz

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OBITUARY

DAVID MILNE AKA. DORABELLA Employee and creative talent at the NZAF David Milne, aka Dorabella, a long-term supporter, employee and friend of the New Zealand AIDS Foundation (NZAF) passed away in Brisbane on 13 August 2009.

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David Milne was a creative, generous and positive force in the NZAF South/Te Toka regional office. Born on 19 October 1955 in Southland, David left New Zealand after his schooling and lived for several years in Amsterdam. After his return from Amsterdam to New Zealand in the mid 1980s, David lived mainly in Christchurch and Auckland and worked in a number of roles in the fashion and hospitality industries.

After settling in Christchurch, David began volunteering at NZAF South/Te Toka and was employed, initially on a part-time basis, as an Administration Assistant in October 2003.

Laura Jones, NZAF Regional Manager and a friend of David’s described him as “creative beyond words. Dorabella, his alter ego, had an extensive and dazzling costume collection that he made. He was resourceful and ingenious; he made his own Edina and Patsy dolls, most of the curtains in Te Toka and some of the furniture. He decorated his house, arranged flowers - fresh and silk, loved to cook and many days had strawberry milk with his lunch which we found charming.

“He could be very earthy and cut straight to the heart of the matter which often went over well with people who called with questions about HIV transmission.

“He was compassionate and efficient with people who received a new diagnosis in our office. They often came in a bit early to chat with him.”

David Skelton, a friend whom David had met in the early 1980s, remembered the same creative talent manifested in his skilful gardening. In addition to his artistic endeavours Skelton said he was “amazed at how David lived with his illness. He enjoyed life in a genuine and sincere way. He never complained and if something affected him it never showed - he just got on with life.”

David is survived by his partner Saleem. A memorial service was held for David on Saturday, 22 August 2009, in Christchurch.

David Milne, Dorabella, creative talent and former Administration Assistant of the New Zealand AIDS Foundation, born 19 October 1955; died 13 August 2009.

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“QUOTES” “A cultural change is needed in workplaces across the UK. Simple, proactive steps by employers to show they understand HIV and would be supportive of disclosure will have a dramatic effect on the working lives of people with HIV.” Deborah Jack, Chief Executive of the National AIDS Trust, United Kingdom comments on a new survey of people living with HIV in the workplace that showed that stigma and discrimination create more problems at work than ill-health “It was eight years of budget cuts, eight years of abstinence only, eight years of condoms don’t work, eight years of bad people do bad things so bad things happen to them, it was eight years of monogamy until marriage…but we made it.”

Christopher Bates, director of HIV/AIDS policy at the Department of Health and Human Services in the United States rejoices the end of the Bush administration “More than eighty percent of the available budget has gone to low-risk young people, compared with less than twenty percent that has gone to high-risk young people.”

Swarup Sarkar, Asia Unit Director of The Global Fund, an international organisation dedicated to preventing and treating HIV and AIDS laments that already-limited funding for prevention programmes in the Asia/Pacific region are poorly distributed “In some parts of India, being childless is still a bigger stigma than being HIV-positive.”

Dr Suniti Solomon, YR Gaitonde Centre for AIDS Research and Education (YRG CARE), India “It is inappropriate to subsidise an event that promotes promiscuity and deviant sexual practices when the HIV/AIDS rate in Australia has increased due to unprotected sex between men.”

The NSW Young Liberals Council in Australia attempts to pass a motion to cut government funding to Sydney Mardi Gras

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The NZAF is extending the message about using condoms and .

prevention initative

is a call to action to

and to support those most at risk from HIV to protect themselves a useful TXT service,

shows New Zealand wrapped

group most at risk from HIV in New Zealand, while people from Creamer,

Spokesperson. “However, it’s important to

2008, New Zealand had a record number of new HIV diagnoses. rates by building a condom culture where every person feels based marketing initiative; “local research shows that most gay 28

of condom use.

aims to celebrate this because it’s a

to increase the rates of condom use still further.” and in Christchurch on 19 September. Text GET IT ON to 3535 .co.nz. In addition to the website and TXT service, youtube.com/NZAF and in national and regional newspapers,

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Issue 73 h November 2009

lube into the mainstream, with the launch of it’s new HIV everyone in New Zealand to get behind the safe sex movement and their partners. Accompanied by a bold new website and safely in a condom. “Gay and bisexual men continue to be the our African Communities are second most at risk,” says Matt remember that everyone has a part to play in HIV prevention.” In “

is a challenge to the whole country to reduce HIV ”. Creamer says

is an evidence-

and bisexual men in New Zealand are maintaining high levels real achievement. But for HIV numbers to decrease we need was launched in Auckland and Wellington on 12 September , or go to www. can been seen on a popular TV commercial available at www. magazines and websites.