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COLLECTIVE THINKING The Newsletter for HIV+ people, their carers and supporters- New Zealand ISSN 1170-2354 Issue 59 July 2005 MINISTRY of HEALTH announces move to routinely offering antenatal HIV screening The New Zealand AIDS Foundation welcomes Pharmac’s decision to give full access to the anti-HIV treatment, Kaletra. This will ensure those recently diagnosed with HIV, as well as those who have been living with the virus for many years, have access to a very effective anti-retroviral treatment. NZAF National Positive Health Manager Eamonn Smythe says it is good news for people newly diagnosed with HIV infection because, previously, Kaletra was not approved as a “first stage” treatment in spite of overseas experience suggesting it was an excellent drug for combating HIV in its early stages. The news that Pharmac will also extend availability of anti-HIV treatments to help prevent pregnant HIV-positive women passing on the virus to their child is also welcomed by the Foundation. However it says the benefits of this will be limited unless there is also a nationally available HIV screening programme for pregnant women to ensure no-one misses out on an opportunity to protect their child. Eamonn Smythe says that while the Pharmac announcement is good news, the Foundation is concerned at the length of time that it has taken for Kaletra to become fully available. “It’s a process that has taken three years from after Kaletra was first registered in this country. In that time some people have died and others have needlessly spent time in hospital needing extensive, and expensive, care. If these drugs were available earlier, their recipients could have continued to be working, paying taxes, caring for their families and contributing to their communities. The delays caused a huge cost on our health care and a huge burden to positive people and their families that we would not want to see repeated. “Pharmac’s processes for approving new drugs must be speeded up. The foundation is concerned that, in the case of Kaletra, unnecessary costs were passed on to hospitals when people waiting for the drug to become available ended up spending a long time in intensive care.” New Zealand will progressively move to a policy of routinely offering antenatal HIV screening as part of antenatal care, Ministry of Health spokesman Dr Pat Tuohy has said. This approach will begin in the Waikato District Health Board (DHB) region, as well as one of the Auckland DHBs. Experience in these areas will help shape the wider national roll-out over a period of three years. The decision coincides with a report released by the Health and Disability Commissioner urging the Ministry to make urgent improvements to its national policy on antenatal screening for HIV. An infectious disease doctor whose patient passed on the disease to her child had called for all pregnant women to be offered HIV testing as soon as possible. Graham Mills complained to Health and Disability Commissioner Ron Paterson. Mills says his patient was at risk of infection because she was from Thailand, where HIV is prevalent, and she had other health problems, which were not investigated properly at the time. Paterson says she should have been tested. The case follows ongoing debate over whether all pregnant women should be routinely offered testing for HIV. Dr Tuohy said there was a growing consensus in New Zealand supporting a policy change, and routine antenatal HIV screening was now part of antenatal care in many other developed countries, including Australia and the United Kingdom.``HIV screening in pregnancy is a contentious issue that has generated considerable debate. Although the estimated prevalence of antenatal HIV in this country is low, there are significant implications for the women involved, as well as their families and communities,’’ Dr Tuohy said. ``With this policy change, we can reduce the number of babies affected by this disease.’’ Information for women, education of professionals caring for pregnant women, and appropriate quality and monitoring mechanisms will be in place in the Waikato and Auckland areas from the outset. Antenatal care providers will all be informed of the proposed change and reminded of the importance of identifying high-risk women as per the current policy until routine screening is rolled out in their area. The National Health Committee reviewed the issue of antenatal HIV screening and reported to Health Minister Annette King in October 2004. The NHC noted that the current ‘high risk’ approach was not well implemented, and recommended piloting a routine offer of antenatal screening in an area of Auckland, as well as improving the education of professionals elsewhere on the existing ‘high risk’ policy. The NHC advice was referred to the Ministry for response. The Ministry had carefully considered the NHC advice and engaged in further discussions with professionals and consumer groups. Dr Tuohy said that the Health and Disability Commissioner highlighted issues with the current policy in his report HIV screening in pregnancy. This was consistent with the advice from the NHC, and the Ministry is committed to implementing the necessary changes. The New Zealand AIDS Foundation has welcomed the Ministry’s decision as something the Foundation has been campaigning for, for some time. “A child infected with HIV at or around the time of birth is an almost wholly preventable tragedy,” says NZAF Executive Director Rachael Le Mesurier. “If pregnant women are known to have HIV, much can be done to maintain their good health, avoid ongoing transmission and to prevent the child from also being infected. “The current system of relying on antenatal providers to ‘selectively screen’ for risk before offering an HIV test has been demonstrated to be ineffective, especially when the profile of an ‘at risk’ mother is changing, guidelines are unclear and training in their implementation inadequate.” The Foundation notes that in 2003 (and repeated in 2004) a record five children born in New Zealand were infected with HIV at or around the time of birth. When the mother-to-child transmission rate (when there is no medical intervention) is one-in-four, it would suggest that there are up to a further 15 women who gave birth who don’t know they are HIV positive but, this time, their child was not infected. “This shows that a universal screening HIV programme for all pregnant women should be implemented with some urgency and we would welcome measures to reduce the Ministry of Health’s three-year timetable for full implementation across the country.” KALETRA available as first stage treatment - DECISION WELCOMED

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

Issue 59 July 2005

MINISTRY of HEALTHannounces move to routinely offering antenatal HIV screening

The New Zealand AIDS Foundation welcomes Pharmac’s

decision to give full access to the anti-HIV treatment, Kaletra.

This will ensure those recently diagnosed with HIV, as well as

those who have been living with the virus for many years, have

access to a very effective anti-retroviral treatment.

NZAF National Positive Health Manager Eamonn Smythe says

it is good news for people newly diagnosed with HIV

infection because, previously, Kaletra was not approved as a

“first stage” treatment in spite of overseas experience

suggesting it was an excellent drug for combating

HIV in its early stages.

The news that Pharmac will also extend availability of

anti-HIV treatments to help prevent pregnant HIV-positive

women passing on the virus to their child is also welcomed by

the Foundation. However it says the benefits of this will

be limited unless there is also a nationally available HIV

screening programme for pregnant women to ensure no-one

misses out on an opportunity to protect their child.

Eamonn Smythe says that while the Pharmac announcement is

good news, the Foundation is concerned at the length of time

that it has taken for Kaletra to become fully available.

“It’s a process that has taken three years from after Kaletra

was first registered in this country. In that time some people

have died and others have needlessly spent time in hospital

needing extensive, and expensive, care. If these drugs were

available earlier, their recipients could have continued to be

working, paying taxes, caring for their families and

contributing to their communities.

The delays caused a huge cost on our health care and a huge

burden to positive people and their families that we would not

want to see repeated.

“Pharmac’s processes for approving new drugs must be

speeded up. The foundation is concerned that, in the case of

Kaletra, unnecessary costs were passed on to hospitals when

people waiting for the drug to become available ended up

spending a long time in intensive care.”

New Zealand will progressively move to a policy of routinely offering antenatal HIV screening as part of antenatal care, Ministry of Health spokesman Dr Pat Tuohy has said. This approach will begin in the Waikato District Health Board (DHB) region, as well as one of the Auckland DHBs. Experience in these areas will help shape the wider national roll-out over a period of three years.

The decision coincides with a report released by the Health and Disability Commissioner urgingthe Ministry to make urgent improvements to its national policy on antenatal screening for HIV.An infectious disease doctor whose patient passed on the disease to her child had called for all pregnant women to be offered HIV testing as soon as possible. Graham Mills complained to Health and Disability Commissioner Ron Paterson.

Mills says his patient was at risk of infection because she was from Thailand, where HIV is prevalent, and she had other health problems, which were not investigated properly at the time. Paterson says she should have been tested. The case follows ongoing debate over whether all pregnant women should be routinely offered testing for HIV.

Dr Tuohy said there was a growing consensus in New Zealand supporting a policy change, and routine antenatal HIV screening was now part of antenatal care in many other developed countries, including Australia and the United Kingdom.``HIV screening in pregnancy is a contentious issue that has generated considerable debate. Although the estimated prevalence of antenatal HIV in this country is low, there are significant implications for the women involved, as well as their families and communities,’’ Dr Tuohy said. ``With this policy change, we can reduce the number of babies affected by this disease.’’

Information for women, education of professionals caring for pregnant women, and appropriate quality and monitoring mechanisms will be in place in the Waikato and Auckland areas from the outset. Antenatal care providers will all be informed of the proposed change and reminded of the importance of identifying high-risk women as per the current policy until routine screening is rolled out in their area.

The National Health Committee reviewed the issue of antenatal HIV screening and reported to Health Minister Annette King in October 2004. The NHC noted that the current ‘high risk’ approach was not well implemented, and recommended piloting a routine offer of antenatal screening in an area of Auckland, as well as improving the education of professionals elsewhere on the existing ‘high risk’ policy. The NHC advice was referred to the Ministry for response. The Ministry had carefully considered the NHC advice and engaged in further discussions with professionals and consumer groups.

Dr Tuohy said that the Health and Disability Commissioner highlighted issues with the current policy in his report HIV screening in pregnancy. This was consistent with the advice from the NHC, and the Ministry is committed to implementing the necessary changes. The New Zealand AIDS Foundation has welcomed the Ministry’s decision as something the Foundation has been campaigning for, for some time. “A child infected with HIV at or around the time of birth is an almost wholly preventable tragedy,” says NZAF Executive Director Rachael Le Mesurier. “If pregnant women are known to have HIV, much can be done to maintain their good health, avoid ongoing transmission and to prevent the child from also being infected.

“The current system of relying on antenatal providers to ‘selectively screen’ for risk before offering an HIV test has been demonstrated to be ineffective, especially when the profile of an ‘at risk’ mother is changing, guidelines are unclear and training in their implementation inadequate.”The Foundation notes that in 2003 (and repeated in 2004) a record five children born in New Zealand were infected with HIV at or around the time of birth. When the mother-to-child transmission rate (when there is no medical intervention) is one-in-four, it would suggest that there are up to a further 15 women who gave birth who don’t know they are HIV positive but, this time, their child was not infected.

“This shows that a universal screening HIV programme for all pregnant women should be implemented with some urgency and we would welcome measures to reduce the Ministry of Health’s three-year timetable for full implementation across the country.”

KALETRAavailable as first stage treatment- DECISION WELCOMED

FOR NZAF BOARD

Dr Clive Aspin has been elected Chairperson of the New Zealand AIDS Foundation Board. Dr Aspin is of Ngati Maru descent and is the fi rst Maori to be elected as chairperson of the Board.

“I am extremely honoured to have been given this opportunity to serve our stakeholders, our communities but, most importantly, those living with HIV in New Zealand today,” says Dr Aspin.Dr Aspin is the Executive Research Offi cer at Nga Pae o te Maramatanga, the National Institute of Research Excellence in Maori Research and Development at the University of Auckland.

He has extensive experience of the Foundation and the AIDS epidemic in New Zealand and Australia. Dr Aspin worked on the fi rst national survey of men who have sex with men, a research programme that was conducted by the NZAF and funded by the Health Research Council. He has also been active in the public health service sector, most recently as manager of a needle and syringe programme in Sydney.

“I am looking forward to contributing to the Foundation during a particu-larly exciting time for us. This year we celebrate our 20th anniversary and, in October, the Foundation will be hosting Te Whanau o te Moana-nui-a-Kiwa, me te Mate Parekore - Family of the Pacifi c and HIV/AIDS Conference in Auckland. This will provide us with the opportunity to bring together people from throughout the Pacifi c, to acknowledge the work of all the people who have contributed to the fi ght against HIV and to remember those who have died because of this virus,” says Dr Aspin.

Dr Aspin lives in Auckland with his partner Terry. They have a nine year old son. In his spare time he enjoys gardening, socialising with friends and advocating on a variety of human rights issues.

DR CLIVE ASPIN

NEW CHAIRPERSON

“I am extremely honoured to

have been given this opportunity

to serve our stakeholders, our

communities but, most importantly,

those living with HIV in

New Zealand today,”

I am Damien Moore from the Positive Men’s Project at the New Zealand AIDS Foundation. I do a lot of online work about HIV testing (gay.com) and making contact with other HIV+ people using nzdating.com (my profi le name is hivboi). I go on line to promote the work that I do for the NZAF, just giving people a chance to know who and what I do, make contact if they wish and building a network of email contacts for New Zealand positive people.

One of the issues that has emerged during this work is the number of other HIV+ people telling me some of their horror stories about how they were given their positive result, and their ongoing healthcare or, in some cases, lack of care. The problems seem to be particularly focussed on HIV positive results being given by GPs. What I am hearing is that some HIV+ people are getting their result from GPs who have little or no experience of HIV infection and so the situation was not handled well with little or no follow-up counselling or support offered and a lack of information for people to take away.

My programme with NZAF would like to look at some way helping GPs improve their performance in this regard, but to do that we need a bigger picture of what’s happening. I’m therefore asking HIV positive people to contact me and give feedback on the way they received their result, what needs to change, and what they think could assist GPs to handle giving a positive result in thebest way. You might want to touch on: • How was your diagnoses delivered to you?

• How was your pre and post testing counselling?

• Where you happy with the process and how the result was delivered?

• Were you given information to assist you in fi nding support services?

• Would you have found a Booklet helpful to just read when you felt up to it?

• Would you have found a CD Rom useful with helpful information and links to the NZAF and other New Zealand web sites containing information about HIV and HIV support networks?

Anything else that you can think of that needs to change Please contact me via email or phone with your concerns and comments. Damien Moore, HIV+ Men’s Health Promoter +ve Men’s Project,New Zealand AIDS Foundation. Telephone (09) 300 6955 or Mobile: 027 252 9134 e-mail: [email protected]

DAMIEN MOORE

Positive Men’s Project - wants to hear your

experiences :

A GUIDE TO TEACHING CHILDREN ABOUT HIV/AIDS

Conversation building block – Accurate HIV/AIDS information

Next, think about information you know about AIDS and HIV. Do you need to know more to feel secure in presenting the information? What pieces of this information does your child need to know now? Some information might resolve unrealist hild might have about AIDS. Other information might be important for your child to have to change risks he or she may be taking. Your child may be too young to understand some of what you know about AIDS, so think about what information you can save to teach your child later on. Does your child have a grasp of the vocabulary and concepts that will enable her or him to understand the information you wish to present? Make a plan of what you want to say.

Conversation building block – What are your values?

Third, think about your beliefs and values in relation to the information you want to share. Examine your values and try to determine where they have come from. Make a plan for what values you want to teach your child. Be aware of the impact of your values on the information you tell your child about AIDS. Do you have personal difficulties with any issues about AIDS? Try to present a balanced point of view and admit that some topics are controversial and hotly debated. Sometimes it may be difficult to talk to your child about something very important, because you fear finding out that your child is doing something that goes against your values.

For example, I may feel very strongly that shooting cocaine is wrong – so I avoid frank conversations about drug use with my teenagers. I may disapprove of premarital sex – so I avoid talking with my sexually active son about condoms use. I may feel vaginal intercourse is right and natural and may not talk with my college-aged daughter about the risks it presents for transmitting HIV. Research has shown that education about sex and drugs does not increase sexual activity and drug use. The effect of educational efforts is to increase the level of safety precautions taken by those are already sexually active or experimenting with drugs. Think about ways to share your values with your child at the same time as you tell them the facts about HIV transmission and risk reduction.

Conversation Building block : Affirm your child

Think about several ways you can affirm your child during your conversation: by listening to them, by praising them, by telling them you care. The fact that you are talking with them about AIDS shows you respect and care about them.

Conversation building block : Good times and places to talk

If you are planning a special conversation about AIDS and HIV, think about a good time and place to have it. Make sure that the groundwork has been laid and that the climate of open communication about issues of sexuality has already been established. AIDS should not be the topic of a first talk with your child about sexuality. Think about how much time the conversation will require and plan enough time. Plan something fun and relaxing to do before, after, or during the talk.

Teachable moments

This kind of thinking will also help you take advantage of teachable moments – opportunities for talking with your child about AIDS and HIV that arise naturally. All of us are most interested in learning when we have an immediate need for information or when something happens that makes us seeks answers to specific questions. Gifted teachers sometimes have a special ability to recognise teachable moments and to respond to them. You can take advantage of a variety of teachable moments in relation to AIDS. Your child may come home from school with questions about AIDS or see a show about AIDS on television. Your teenager may ask to go to a party and imply that some of kids planning to be there are sexually active. You may learn that someone in your family or neighbourhood has HIV or AIDS. Your child may simply ask a question about AIDS out of the blue.

How you reach your child about HIV or AIDS depends on the child’s questions and concerns, level of understanding, age, prior knowledge, learning style and your communication style.

Editor’s note: this guide to teaching children about HIV and AIDS was prepared by the Cornell University Parent HIV/AIDS Education Project. The project offers training and teaching material free on the program website at : www.human.cornell.educ

Any conversation about sex or drug use or disease may feel uncomfortable at the beginning, because these are topics that are rarely discussed between adults and young people in our society. Many adults don’t even talk about these topics with other adults!

Sometimes adults hide behind factual information when dealing with controversial subjects. Facts are important, but they are impersonal. Facts alone are not likely to change someone’s behaviour or form the sole basis of their future decisions. Research has shown that young people who know all the right answers about AIDS still do risky things. To be effective, education must address both factual and emotional aspects of charged issues such as AIDS.

Remember that you can have many types of conversations about AIDS with young people. Some may mostly involve listening, some may involve sharing feelings and discussing facts, some may focus on information you are passing on to your child, and some may focus on solving problems and planning what you and your child will do. All these types of conversations are very important, even if each has a different style. It is also possible to have your child leave each type of conversation feeling accepted, valued and supported in learning how to cope in the world with AIDS

Once you have learned some basic facts about AIDS and ways of reducing the spread of HIV, you are ready to talk with your child. Make sure that you and your child both have an understanding of the clinical and slang words each of you uses to discuss sex and drugs.

It may help if you teach children the correct terms for all their body parts in a matter-of-fact way when they are young. Parents can tell infant toddlers,

“This your hand, this is your vulva/penis, this is your foot, this is your nose”. This will build the young child’s sense of comfort and respect for the human body.

It will build the foundation needed for talking about sexuality later on.

Two common situations in which you may talk with your child about AIDS are:

1) when you have made a special plan to have a conversation about AIDS and,2) when a special opportunity for talking with your child about AIDS just happens. The building blocks for either talk are the same.

Conversation building blocks number – know your child

First, you need to think about your child: age, questions or concerns about HIV, what information your child already has about AIDS,

where the information came from, and whether that informa-tion is correct. You need to think about any special

circumstances your child may face in terms of AIDS: Does your child know or love

anyone who has HIV? Is a child with HIV enrolled at their school. If your

child has hemophillia, does he or she feel afraid or face stigma

related to HIV or AIDS? Is your child sexually active. Does your child fear you may be at risk? Also, think about times and situations when you and your child have had good talks. What went into mak-ing those comfortable and effective?

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KIDS CONVERSATIONS WITH

at Kobe ConferenceNZAF Boardwithdraws its Governance proposal

New Zealand’s success in managing it’s HIV/AIDS epidemic has been held out as an example for others to follow at the 7th International Congress on AIDS in Asia and Pacifi c (ICAAP) Conference recently held in Kobe, Japan.

With one of the lowest incidences of HIV per head of population in the world, New Zealand’s story was highlighted by MP Georgina Beyerat ICAAP on Saturday, where she emphasised the role of human rights legislation in helping prevent the spread of the virus. She was speaking by special invitation of the Joint United Nations Programme on HIV/AIDS (UNAIDS) in a section of the conference devoted to the role of inspirational leadership in combating the spread of HIV.The presentations were intended to help inspire leaders from other nations to develop every opportunity available to reduce the spread of HIV in their own countries.

In her presentation, Ms Beyer told the 500-plus delegates how such measures as the Homosexual Law Reform Act and anti-discrimination Human Rights laws had directly contributed to New Zealand’s enviable record on HIV management.

Listening to the speech was NZ AIDS Foundation Executive DirectorRachael Le Mesurier who said the situation in many Asia-Pacifi c countries was the same as New Zealand had in the 1980s.

“What has emerged from this conference is that in many countries it is the minorities – men-who-have-sex-with-men, sex workers and injecting drug users – who are at greatest risk from HIV. She said that their situation was precarious in countries where their Governments and communities refused to tackle minority human rights issues in the way New Zealand had.

“New Zealand’s leadership can be seen in the fact that the Homosexual Law Reform Act removed from gay and bisexual men the fear of criminality and allowed them to come out and establish

open and honest relationships.

It also made them more accessible to HIV prevention education.

“As a result the number of cases where a man who has had sex with another man has then passed HIV on to his female partner have beenextremely low in New Zealand.

In countries where homosexuality is still a punishable crime, this is a

major source of HIV transmissioninto wider communities.

“New Zealanders can be proud that their tradition of tolerance and openness has

enabled world-leading legislation to be passed. It is inspirational that

a former sex worker and transexual has been able to rise to the status of an elected representa-tive whose story, and the story of our innovative legislation, is now being held out by the United Nations as an example for others to follow,” Ms Le Mesurier said.

BEYERThe New Zealand AIDS Foundation Board has announced that it is withdrawing its proposal to have at least 50% Maori participation at all times and to hold two spaceson the board for people living with HIV.

Board Deputy Chair Simon Robb said there were two reasons for the decision:

“One, the response has raised potentially signifi cant constitutional issues for theboard that, properly, must be looked into in a meaningful way by the board.

“Two, the initial reaction from some of our stakeholders has shown that we are not bringing them with us as we work towards meeting our important governance obligations arising from the Constitution. I accept that the very best of intentions might sometimes be interpreted to be otherwise, so it is important for us to work in a meaningful way with our stakeholders to reassure them that our commitmentto fi ghting HIV/AIDS has never wavered – our communities have my assurance that this work will continue to be done.”

The proposed special general meeting in August announced previously has, therefore, been cancelled, Simon Robb said. However, NZAF members who werepreparing to submit remits/comments re the proposed Governance changes and/orthe constitution are encouraged to send them to the Board anyway.

“This will provide the Board with useful information that will be considered as we move forward with our stakeholders. Any information, submissions and opinionsre the constitution of the NZAF will be of assistance in the debate ahead. This debate will be facilitated through a variety of means, including well-plannedmeetings with our stakeholders.”

The Board wishes to maintain the level of community engagement in this debateon how best to implement the constitutional commitment to the Maori version of the Treaty and other issues, such as membership involvement in the process for constitutional changes.

The community consultation meetings planned for mid July will be deferred to a date in the near future where the Board will welcome face-to-face discussion with all interested stakeholders.

Simon Robb said that the Board had signalled from its fi rst press release that it was engaging in a consultation process and was ready to listen.

“This decision demonstrates that the board is responsive to its community. When those who support us tell us we’re going too far, too fast, we are prepared to listen.”

The US manufacturer of efavirenz, Bristol-Myers Squibb, has issued an upgraded warning about the risks of using efavirenz in women who areor may become pregnant. The warning follows four reports of babies born with neural tube defects after their mother took efavirenz during the fi rst trimester of pregnancy. The company recommends that women who are capable of becoming pregnant have a pregnancy test before starting efavirenz, and be warned about the risks....and in the brainThe neuropsychiatric disturbances which are a common side effect of efavirenz can persist for several years in some patients, European researchers report in the 15 April edition of JAIDS. The study involved 120 Dutch and Spanish people, half of whom were on efavirenz and the balance on a protease inhibitor-based regimen, and all of whom had been on the same treatments for at least a year. Signifi cantly more ofthe efavirenz group reported neuropsychological disorders includingdizziness, mood changes, poor concentration and sleep disturbances, but these were generally mild and manageable, the researchers said. –JAIDS 38 (5)

Efavirenz in Pregnancy

Body Positive Canterbury was pleased to host the exhibition marking 20 years of AIDS in NZ. After four weeks hanging at Gallery 291 in Christchurch, the works have now been packaged and sent back to their owners.

During the exhibition a series of events were held at the gallery.

On opening night, Hugh Gaw and Ralph Knowles were acknowledged for their work developing the first pamphlet about AIDS in 1982. It was heartening to see the warm response with which their contribution and pioneering initiative was received by the gay community and others present. Two weeks into the exhibition, Douglas Wright kindly consented to give a reading from his autobiography ‘Ghost Dance’, for which the exhibition provided a wonderful backdrop.

At the closure of the exhibition, Body Positive Canterbury had its monthly gathering at the Gallery, which also appropriately coincided with the day of the Candlelight Memorial.

The events were very well attended but the exhibition, while there was a steady flow through the door, was visited mainly by Lesbian women of all ages and Gay men who had their own experience of the 20 year history. There was a marked absence of men under 30.

It was a remarkable achievement to bring twentyfour works of sixteen artists from all over NZ together for a month on a shoestring budget and with little knowledge of the tasks involved. Many thanks to all who volunteered their time to assist with the setting up and the day-to-day running. A big thankyou to Le Café, Menfriends, NZAF, and Creative NZ for their generous support. Copies of the Exhibition catalogue are available for $30 from Body Positive Canterbury, PO Box 24 155, East Linwood, Christchurch.

Ray Taylor

EDITORIAL

AARON McDONALD

AIDS IN NZ

20YEARS ON

A N A R T E X H I B I T I O N

EDITORc/o NZAF SOUTHPO BOX [email protected]

The New Zealand AIDS Foundation Board has withdrawn its proposal to establish a governance model that would have given Maori 50% representation on the board and held two places for people living with HIV.

The proposal had been heralded as new way implementing community partnership with Maori and People Living With HIV and AIDS and the NZAF Board at a governance level. However the Board withdrew the proposal after stating that community reaction had shown it clearly had no mandate to move ahead with it at this stage. Where did the NZAF Board go wrong and how could it have avoided some of the pitfalls it encountered? There are number of different elements that should be considered before embarking on a process of community change. The NZAF Board, in my opinion, fell at the first obstacle - it failed to size up the community’s readiness and capacity to act before committing valuable energies and resources.

It is function of leadership to sometimes acknowledge that you don’t have the expertise to manage a process fully. The NZAF Board could have established a diverse core group of people with the talents, relationships, resources and credibility to facilitate and lead the charge. This core group could have been made up of stakeholders, representatives and staff of NZAF who have an intimate knowledge of our diverse community. It could have been this group’s role to lead the process, not to have magic answers, but to elicit creative responses from their communities in a manner that builds shared action.

This core group would be a community leadership team, which becomes the catalyst for the successful launch of a community-wide effort. Members would need to develop a clear mission, in this case: “How can NZAF meet its long-standing constitutional commitment to the Treaty of Waitangi and to people living with HIV and AIDS at a governance level.

They would need to generate a powerful set of activities to engage and communicate with the diversity of the community. A thoughtful and comprehensive process would be needed that builds a type of understanding that inspires action and support for the mission. Thus bringing a shared vision from the Board and community.

Translating a shared vision into a comprehensive plan will require changing individual and organisational behaviours, impacting old systems and structures that might have outlived their purpose and getting beyond quick-fix solutions. Community priorities need to be established for more than the conspicuous issues emerging out of this process.

The process as whole should inevitably touch the core of what it means to be a community. Build relationships of trust and commitment across lines of sector, race and class. Allow the community to engage in a continuous process of learning and evolve ways to help our communities improve life while reducing the impact of HIV and AIDS on our community and those affected.

The NZAF Board must take stock of what it wants to achieve and seek solutions from the community by embarking on the process as outlined above. It is incumbent that the board take the community with them and not divide it. I have no doubt that our community will be able to overcome the divisiveness of debate over the last few weeks and come together and assist the Board to establish a path ahead, in which we allow it to enhance its governance.

A LESSON in FACILITATING COMMUNITY CHANGE:

Closing Date5.00 p.m. Thursday 1st September 2005

The Foxley Fellowship is a prestigious award that will enable an individual with a minimum of 5 years experience in the health sector to undertake a one-year research sabbatical within an academic institution. The research undertaken by the applicant should be aimed at increasing the utilisation of health research results within the health sector. Information regarding the Foxley Fellowship can be found at http://www.hrc.govt.nz/assets/pdfs/funding/Foxley%20Exp%20notes.pdf Application and Forms. Applications must be made to the Council through the head of department and through the normal administrative channels of theapplicant’s intended institution.

Full information and application forms are available from the HRC website www.hrc.govt.nz

Researcher - Heather McKay

Top Shelf Productions is an award winning TV Production Company with a long history of making documentaries - many of a highly sensitive nature – including: “All About Eve: The Story of Eve Van Grafthorst”, “AIDS Babies”, “AIDS and Love”, “AIDS and Drugs” and “AIDS in the Community: An interview with Dick Johnston”. However, it is now 15 years since these documentaries were made and we recognise it is time to revisit the issue of HIV/AIDS in our community.

The documentary will highlight the plight of babies currently being born with HIV because of a compre-hensive lack of screening for pregnant women in New Zealand. Since the invention of antiviral drugs the risk of unborn babies contracting the HIV virus from their mother has plummeted. But for these drugs to work, it is imperative pregnant women’s HIV status is known prior to the birth.

Unlike in the United Kingdom and the United States, where pregnant women are routinely screened for HIV - and the number of babies born with the virus is decreasing - there is no comprehensive screening for pregnant women in New Zealand and each year as many as 5 babies are subsequently born with the virus. We would argue this is avoidable if comprehensive screening is introduced. In order to make this documentary and bring this valuable issue into the public domain, we need to speak to children/ young people born with the virus and their mothers. We are also interested in speaking to HIV positive women who are currently pregnant or planning on having a baby in the next year.

I would like to stress, that at this stage, we are simply wanting to speak to people for research purposes. If you want to speak to me (in complete confi dence) to fi nd out more about the documentary or just to chat please call me on 0800 899 777.

Name: ______________________________________________________Address: ______________________________________________________________________________

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Telephone: __________________________________________________E-mail: ____________________________________________________ __Do you require a fl ight? Yes _______________ No __________________Where do you require a fl ight from: _______________________________Please indicate preferred dates and times: ___________________________________________________________________________________________________________________

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REGISTRATION FORM

PREGNANT WOMAN & CHILDREN

HEALTH RESEARCHCOUNCIL FOXLEY FELLOWSHIP

MAKING AN IMPACTON HIV & AIDSNGO Experiences of Scaling UpBy Jocelyn DeJong

As the HIV/AIDS epidemic has grown to become the fourth biggest killer in the world and the leading cause of death in sub-Saharan Africa so the pressure on those working in the fi eld to expand the scale of their activities has increased. Non-governmental organisations (NGO’s) have been especiallyinfl uential in the response to HIV in developing countries and the pressure to increase the scope and impact of this work is particularly strong. Making an Impact on HIV and AIDS recognises that scaling up NGO programmes requires more than just additional resources or straight forward replication or expansion of interventions. The book analyses when expansionis appropriate, how to make it effective, how to measure the costs, and what the implication for organisations might be.

It examines these issues through the experience of NGOs working in different contexts, and in all aspects of, HIV/AIDS including prevention, care and support, and mitigating the impact of the

epidemic. The author draws on case studies from a range of countries in Africa, Asia and Latin America. She integrates the insights from these experiences with existingthinking and proposes a new typology of approaches to scaling up. Key elements of scaling up are discussed, as are the issues such as the risks entailed in growth,motivation for scaling up and the special challenges related to scaling up workon HIV and AIDS.

This book is aimed at those active in the HIV/AIDS fi eld who are interested in the NGO programmes, and those in the wilder developmental fi eld who are concerned about the impact of HIV and AIDS and what NGOs can do about it. It makes an important contribution to thinking about scaling up NGO activities in general and is particularly relevant as the pressures of the epidemic concern not only the organisations directly involved but also those working on all aspects of development.

Jocelyn DeJong has worked on AIDS and reproductive health in the Middle East for the Ford Foundation. She is lecturer in Social Policy and Social Development at the Institute for Development Policy and Management at theUniversity of Manchester in the UK.

This is the seventh annual three-day residential retreat for HIV+ women.

The retreat is an opportunity to meet other women in a safe, confi dential and nurturing environment and to share experiences, information and relax away from the pressures of everyday life. The retreat will have different sessions each day such as yoga, interactive drawing, drumming and other fun activities.In additional there will also be a variety of natural therapists; aromatherapymassage, acupuncture Shiatsu and more. Throughout the retreat participantswill be given the opportunity to receive information and attend workshops specifi cally on issues related to HIV+ women such as pregnancy, drugtreatment, diet and nutrition and HIV services.The retreat will also allow plenty of opportunities to swim and walk on the beach and enjoy the beautiful surroundings.

The retreat is free to all HIV+ women in New Zealand. Funds are available to help HIV+ women outside of the Auckland region to get to the retreat, just indicate this on the registration form opposite. There will be no childcare avail-able at the retreat, some assistance can be provided if requested, contact Jane at Positive Women.

It you are interested in attending the retreat , either complete the printed registration form opposite or contact Jane at Positive Women at:

1/3 Poynton Tce, Newton, Auckland. Telephone (09) 309-1858or 0800POZTIV or e-mail [email protected]

The Venue

This year the retreat will be held at Vaughan Park, Long Bay, overlookingone of Auckland’s most beautiful eastern beaches. All the rooms are well appointed with contemporary fi ttings. In most cases you will have your own room complete with a hand basin. Towels and bed linen are provided. During your stay at Vaughan Park you will be treated toa wonderful range of healthy food, catering for both vegetarians and meat eaters.

HIV+WOMAN’S RETREAT Vaughan Park AUCKLAND 16th -19th SEPTEMBER

2005

HIV+

On Sunday, 15 May 2005, thousands of communities around the world came together in solidarity to light candles and remember those who have been affected by HIV/AIDS. Communities across New Zealand including Auckland, Hamilton, Tauranga, Wellington, Christchurch, Dunedin and Invercargill took part in the Candlelight Memorial, which has become the largest grassroots AIDS event in the world. The first International AIDS Candlelight Memorial was held in San Francisco in 1983, when the cause of AIDS was unknown and less than a few thousand AIDS deaths recorded. The coordinators initially wished to honour the memory of those lost, while demonstrating support for those living with AIDS. This remains the focus of the event today.

Since the beginning of the pandemic, AIDS has claimed more than 28 million lives, with more than 42 million now living with the virus. As AIDS continues to ravage communities around the world, the Candlelight has become a tangible vehicle for communities to take action by publicly mourning loved ones lost to AIDS, and by strengthening local and national commitments to fighting the pandemic. In small communities, the Memorial can help increase awareness and understanding, while promoting volunteerism and fundraising. In large cities, it unites a diverse spectrum of people who care about HIV/AIDS. In all cases, the event creates a sense of global solidarity, and generates worldwide attention.

The International AIDS Candlelight Memorial has four main objectives:

• To honour the memory of those lost to AIDS

• To show support for those living with HIV and AIDS

• To raise community awareness and decrease stigma related to HIV/AIDS

• To mobilise community involvement in the fight against HIV/AIDS

New Zealanders who think HIV/AIDS is not their issue should be prepared to accept devastation of families, a massive increase in HIV among youth, more children born with the virus and severe impacts on economic prosperity, said the New Zealand AIDS Foundation on the eve of the International AIDS Candlelight Memorial.

Said Rachael Le Mesurier NZAF Executive Director: “United Nations Secretary Kofi Annan said recently that we must make people everywhere understand that the AIDS crisis is not over, that it is a threat to an entire generation, to an entire civilization. New Zealanders need to realise he was talking about us as much as he was talking about places like Africa.

Ms Le Mesurier said there was a very real risk that the devastation of HIV in Third World countries could be repeated in Aotearoa New Zealand unless there was continued vigilance and improved community buy-in to HIV prevention. “Just look at our chlamydia infections and replace those with HIV – they are both transmitted the same way.”

“While there are better medical treatment options available here, living with HIV can still have a devastating effect on the lives of people with the virus and their families, not the least being a shortened life expectancy and the daily trauma of having to take what some term a “toxic cocktail” of drugs to try to slow the progression of the virus down.

“Consider these facts:

• People are still dying of AIDS in New Zealand. Last year there were four AIDS-related deaths. This means at least 4 families are deeply affected by the loss of a loved one and reminds us of the poignant theme from UNAIDS for the Candlelight ceremony – ‘Turning Remembrance into Action’

• Last year in New Zealand a record 157 people learnt they were HIV positive, that’s about three a week!

• In 2003 and 2004 new diagnoses for heterosexually acquired and homosexually acquired HIV were in roughly equal numbers.

• In both 2003 and 2004 six children were diagnosed with HIV in New Zealand the highest number ever.

• There are now about 1400 people who know they are living with HIV in New Zealand, that’s more than ever before in the history of HIV/AIDS in New Zealand.

• On top of the 1400, it is estimated that about one third more people living with HIV in New Zealand don’t know they have it and therefore aren’t appearing in the epidemiological figures. People can’t rely on their sexual partners to say if they have HIV if they don’t know they have it!

• This means that anyone who chooses to have unsafe sex in New Zealand now, has more chance than ever before of being exposed to HIV.

• Having an existing sexually transmitted disease makes it some ten times easier to contract HIV. New Zealand has some of the highest rates of STIs among its young people in the Western world.

“The Foundation is working with a wide range of community and health groups to try to stem the spread of HIV in New Zealand. Compared with other countries with similar epidemics we have had remarkable success; New Zealand’s per capita rate of HIV infection is one of the lowest in the world.”

“But the current rate of new infections suggests our communities cannot afford to sit back and say ‘haven’t we done well!’ The slightest relaxing of effort has the potential to allow this virus to explode through our sexually active communities in dramatic numbers. That would have a terrible impact on our society, as those most affected would be rangatahi/young people, young working adults, and those who would normally be having families. This is not just a social or medical issue, it is an issue of vital economic importance.”

Ms Le Mesurier said that while the social and epidemiological issues surrounding HIV were becoming increasingly complex, the way the virus spread was unchanged and, therefore, the prevention message was unchanged.

“Our most effective weapon has always been, and will continue to be, properly used condoms for vaginal or anal intercourse, alongside the continuation of our internationally respected needle exchange system for injecting drug users.

“We will do ourselves a disservice, and put whole future generations at risk, if we do not continue to talk openly about sex and sexuality; if we fail to promote responsibility for self and for others; and if we shy away from providing accurate and comprehen-sive information to our young people.”

A two-and-a-half-day retreat for HIV+ men was held at Vaughan Park, Long Bay Auckland on April 1 to 3, 2005. The retreat was attended by 65 men from throughout New Zealand.

The retreat provided an opportunity for men to attend a series of workshops as diverse as “Sex and HIV”, to an overview of the Health and Disability Commission. There was also plenty of time for rest, recreation and to revitalise in the lovely surroundings of Long Bay. Many chose to have their stresses worked away by a group of massage therapists.

The organising committee and staff of Vaughan Park created a safe and supportive environment for the men attending. This enabled participants to discuss a range of issues concerning living with HIV/AIDS .

The weekend was much enjoyed by the participants. The retreat was organised by Body Positive Inc. They would like to thank the following sponsors for their financial generosity: Merck Sharp & Dohme, GlaxoSmithKline, Grafton Pharmacy at the Hospital and the New Zealand AIDS Foundation.

INTERNATIONALAIDS Candlelight Memorial

6TH Annual HIV PositiveMENS RETREAT

People who suffer from depression are more likely to have good adherence to antiretroviral dosing requirements if they are treated with antidepres-sants, according to a study in the 1 April edition of JAIDS. The retrospective study looked at the medical records of 1713 US HIV patients, and analysed them for signs of depression, medication adherence and antidepressant prescription. Among people who were depressed, adherence tended to be better if the patient was prescribed antidepressants. The researchers noted that depression was a common diagnosis among their cohort, with 57 percent of patients affected.

DEPRESSION & ADHERENCE

TURNING REMEMBRANCE into ACTION

PICTURE COURTESY OF THE PRESS CHRISTCHURCH

NATIONALNational AIDS Hotline0800 802 437(09) 358 0099

New Zealand AIDSFoundationNational Office/Library31-35 Hargreaves StreetPonsonbyP O box 6663Wellesly Street AucklandPh: (09) 303 3124Fax (09) 309 3149e-mail:[email protected]:www.nzaf.org.nz

Positive Women1/3 Poynton TceNewton, AucklandPh: (09) 309 1858Fax: (09) 302 2338e-mail:[email protected]

NZ Circle of Friends TrustAIDS Memorial GardenKanuka Grove Western Springs LakesidePark, AucklandP O Box 41 300St Lukes, AucklandPh: (09) 378 1199

NZ AIDS Memorial QuiltDennis MoranP O Box 7024Wellesley Street AucklandPh (025) 955 863e-mail:[email protected]

National Co ordinatorsNeedle Exchange ProgrammePh: (03) 366-9403PO Box 22176ChristchurchWeb:www.needle.co.nz

NZ Prostitutes Collective,& NZ Drug Project202 Willis StreetPO Box 11 412, WellingtonNZPC Ph: (04) 382 8791NZPC Fax: (04) 801 5690NZDP Ph: (04) 382 8404

NZ Haemophilia SocietyHaemophilia Centre1st Floor, Auckland HospitalPark Road GraftonPO Box 122 AucklandPh: (09) 302 2522Treatment Informatione-mail:[email protected]

web:www.nzaf.org.nz

REGIONAL CONTACT

NORTHLAND

Northland AIDS NetworkPO Box 1778WhangareiDavid, Ph (09) 436 2883

www.northlandaids.org.nz

AUCKLAND

NZAF Gay Men’s HealthProgramme31-35 Hargreaves StreetPonsonbyP O box 6663Wellesly Street AucklandPh: (09) 303 3124Fax (09) 309 3149e-mail:[email protected]

NZAF Hau Ora TakataapuiProgramme e-mail:[email protected]

NZAF Burnett Centre1/3 Poynton TcePh: (09) 309 5560Fax: (09) 302 2338e-mail:[email protected]

Community AIDS Resource Team (CART)2/3 Poynton Tce, NewtonAucklandPh: (09) 309 2693Fax: (09) 375 4303e-mail:[email protected]

Body PositiveHIV+ Peer support and information.Publishes Positively PositivePO Box 68-766NewtonAucklandPh: (09) 309-3989Fax (09) 302-2338e-mail:[email protected]

Hepatitis C Research CentrePO Box 90-563, AucklandPh: (09) 377 8500Toll Free: 0800 224 372e-mail:[email protected]:www.hepc.org.nz

Herne Bay House304 Jervois RoadP O Box 5352, Wellesley StreetAucklandPh: (09) 376 1192Ph/Fax: (09) 376 0956

Auckland Drug information Outreach (ADIO) – Needle Exchange Service10 East Street, Newton, AucklandPO Box 68 134, Newton, AucklandPh: (09) 356 7373Fax: (09) 356 7374Gay Community Project

Community Alcohol and Drug Service (CADS)409 New North RoadKingland, AucklandPh: (09) 845 1800Fax: (09) 845 1845

NZ Prostitutes Collective Auckland (NZPC)Transsexual OutreachProject (TOPS)486 Karangahape RoadPO Box 68 509, NewtonAuckland

Ph/Fax: 366 6106

HAMILTON

NZAF Te Puawaitanga o Te Ora11 Ohaupo RoadPO Box 41 HamiltonPh: (07) 838 3557Fax: (07) 838 3514e-mail:[email protected]

Body Positive Waikato32b Hobson StreetHamilton

Ph: (07) 839 9925

THAMES

Te Korowai Hauora O Hauraki210 Richmond, Thames

Ph: (07) 868 5375

TAURANGA

Bay Area AIDS Support Service (BAASS)Social Work DepartmentC/- Tauranga HospitalPrivate Bag 12024TaurangaMarlene Ware

Ph: (07) 579 8460

GISBORNE

Te Roopu Tautoko Trust ki Tairawhiti1st Floor, Tower Corp BuildingGrey Street, P O Box 781, Gisborne.Ph (06) 867 9099

Or (06) 867 5911

PALMERSTON NTH

IV UNION91 Grey StreetPh: (06) 357 1059

Team Health(Alcohol, Drug, HIV/AIDSissues)51 Waldegrave StreetPalmerston NorthPh: (06) 354 0311

e-mail:[email protected]

WELLINGTON

NZAF Awhina CentreLevel 3, 27 Dixon StreetPO Box 9247,Marion Square, WellingtonPh: (04) 381 6640Fax: (04) 381 6641e-mail:[email protected]

Te Puawai TapuP O Box 6044, Te AroWellingtonPh; (04) 801 8859Fax: (04) 01 9908

NELSON

HIV & AIDS Support Network

Kevin JensenP O Box 2239Nelson SouthPh: (03) 547 2827Nelson Injecting Community

Health Enterprise (NICHE)Needle Exchange16 Nile Street westPh/Fax: (03) 546 8170

e-mail:[email protected]

CHRISTCHURCH

NZAF South Te Toka269 Hereford StreetPO Box 13 618ChristchurchPh: (03) 379 1953Fax: (03) 365 2477e-mail:[email protected]

Body Positive Canterbury IncP O Box 24-155East LinwoodChristchurchPh: (03) 942 6647email:[email protected]

The Roger Wright CentreDrug Injecting Service inCanterbury10 Liverpool StreetPO Box 22-478ChristchurchPh: (03) 365 2293Fax: (03) 365 2508e-mail:[email protected]

NZ Prostitutes Collective144 Lichfield streetP O Box 13 561Christchurch

Ph: (03) 365 2595

DUNEDIN

HIV Information and EducationPublic Health South57 Hanover StreetDunedinPh: (03) 474 1700

Dunedin Intravenous Organisation (DIVO)PO Box 5379DunedinPh: (03) 479 2300Fax: (03) 479 7631

NZ Prostitutes CollectiveLisa Te PanaP O box 5636DunedinPh: (03) 477 6988

INVERCARGILL

Southland HIV & AIDS Support Shona FordyceP O Box 828InvercargillPh: (03) 214 5768

Disclaimer: Opinions expressed or information given in this magazine are not necessarily endorsed, recommended or otherwise supported by the Board of Editors or the NZAF

directory

A Study to try to understand the social and cultural factors that influence men’s decisions to put themselves at risk of HIV has been awarded the first Matt Whyte Postgraduate Research Grant by the New Zealand AIDS Foundation.

The $6000 per annum grant has gone to a study proposal presented by Michael Stevens who has just commenced a PhD at the University of Auckland. Matt Whyte was a long-term worker for the New Zealand AIDS Foundation who worked tirelessly in the field of HIV prevention and support of people living with HIV. He died of an AIDS-related illness last year. NZAF Research Director Tony Hughes said a number of applications for the grant were received, but the proposal by Michael Stevens was the most outstanding and promised the most benefit to HIV/AIDS research and prevention programmes. Stevens’ research concerns the lives of men with living with HIV, and especially those men who have become recently infected with the virus.

“I am interested in hearing from gay men who have been recently infected with HIV,” Stevens said, “and interviewing them about their lives at the time they think they became infected. We have a lot of excellent numerical data about HIV/AIDS in this country, but there hasn’t been any fine-grained qualitative analysis of the experiences of HIV positive men done for a long time. Stevens said he wants to talk to men within 12 months of receiving their HIV positive diagnosis.

“My interest is driven by a number of factors, partially the rise in new infections that we have seen over the last few years, and also by the constant comments around the country during the NZAF Roadshow last year, where people kept asking about just why we were seeing this amount of new infections.

“By talking to men who have recently become infected I hope to get a better understanding of the social and cultural factors that influence HIV infection. I hope to get a better understanding of the social and cultural factors that influence HIV infection.

This study will extend our knowledge of what lies behind HIV infection in New Zealand, and also provide information for further prevention campaigns.” Stevens hopes to carry out in-depth interviews with men throughout the country. They will all be entirely confidential. No-one will be able to be identified by the process or in the findings. “As someone who lives with the virus myself I am very sensitive to the situation of HIV positive gay men.”

Michael can be reached either through any NZAF centre, or directly via email at [email protected]

Grant will helpResearcher understand why people take risks that lead to HIV infection:

People living with HIV and AIDS are invited to join the 400-plus who will be gathering from all corners of the Pacific at the “Te Whanau o te moana-nui-a-Kiwa, me te mate parekore - Family of the Pacific HIV and AIDS” conference in Auckland 25 - 28 October 2005. There is also going to be a Positive People’s Symposium, hosted by Body Positive and Pacific Island AIDS Foundation founder Maire Bopp Dupont and the National Association of People Living with AIDS (NAPWA), from Monday 24 to Tuesday 25 October 2005 in Auckland. To learn more about this symposium contact Bruce Kilmister at Body Positive on 09 309 3989 or [email protected] How to get there: The conference committee is committed to removing financial hurdles as much as possible, for those for whom money might be an issue. An application form for applying to get a fully-funded scholarship is available on the website (www.panpacific-hivaids05.net.nz) and a hard copy registration form will be available from mid June.

The deadline for applications is 11 August 2005.

getting funding to got to the

PAN PACIFIC CONFERENCE on HIV/AIDSAUCKLAND OCTOBER2005