IT’S YOUR STORY PARTICIPANTS NEEDED FOR HIV FUTURES PROJECT
issue 63 JUly 06
SURVIVAL OF THE RICHEST NZ STILL BEHIND AUSTRALIA WITH NEW HIV MEDICATIONS
www.nzaf.org.nz
THE NEWSLETTER FOR HIV+ PEOPLE, THEIR CARERS AND SUPPORTERS NEW ZEALAND ISSN 1170-2354
DIPLOMACY? UNGASS MEETING DENOUNCED AS A FAILURE BY CIVIL SOCIETY GROUPS
31-35 Hargreaves St College Hill Ponsonby PO Box 6663 Wellesley St Auckland New Zealand
Phone: +64 9 303 3124 Fax: +64 9 309 3149 Email: contact@nzaf.org.nz www.nzaf.org.nz
WELLNESS FUND: REVIEW AN OPEN LETTER Dear Clients of NZAF and Friends,
NZAF’s Wellness Fund has been running since the late 1980s. It was set up to assist with much needed care and support for people who were HIV positive at a time where there were no treatments for HIV. �� The Wellness Fund is run by our National Positive Health Services through our four centres across New Zealand. As a result of growing debate about the purpose, fairness, criteria and value of the Fund across all four regions we have planned to review all aspects of the Fund in 2006. As part of this review process it is important that all HIV positive people’s voices are heard, and that a Wellness Fund is reconsidered in light of the needs of HIV positive people today in 2006. The advent of HAART, the increasing number of people living with HIV and the changing face of health care in New Zealand mean that this review process should occur on a regular basis. Your input is sought, either via the postal system, e-mail or as part of face-to-face meetings that will be held across the country. We encourage you to either reply independently or as part of a group of like-minded individuals. This part of the process will run from June 19 until August 28th. After that the information will be collated, a new proposal drafted and the positive community advised of the proposed changes. Ideally we would like the outcome of the review to be in place by December 2006.
2
This is a comprehensive review of all aspects of the Wellness Fund. We welcome any feedback on the current Wellness Fund and any other suggestions or ideas you may have concerning its future. We really do wish to start from scratch and ask – if we were setting it up today, what would it look like? My contact details are below. I look forward to hearing from you. Best Regards, Eamonn Smythe National Positive Health Manager DDI: 64 9 300 6958 Email: eamonn.smythe@nzaf.org.nz Postal: PO Box 6663, Wellesley St, Auckland
31-35 HARGREAVES ST, COLLEGE HILL PONSONBY Patron Her Excellency The Hon Dame Silvia Cartwright, PCNZM, DBE Governor-General of NewWELLESLEY Zealand PO BOX 6663 ST, AUCKLAND NEW ZEALAND Vice Patrons Dame Catherine Tizard, GCMG, DBE, The Most Reverend Sir Paul GCVO, The+64 Hon 9 Justice Michael Kirby, AC, CMG PH:Reeves, +64 9GCMG, 303 3124 FAX: 309 3149
EMAIL: AHPP@NZAF.ORG.NZ WWW.NZAF.ORG.NZ
Collective Thinking issue 63 JULY 06 The contact directory is available online at www.nzaf.org.nz It can be accessed via information for HIV+ people under groups.
Editorial Collective Thinking, the Newsletter for HIV+ people, their carers and supporters, is published quarterly, by the New Zealand AIDS Foundation.
The NZAF registered office is located at: 31-35 Hargreaves St., College Hill, Ponsonby PO Box 6663 Wellesley St. Auckland. 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.
A quarter century ago last month, the Center for Disease Control reported the first case of what is now known as AIDS. What has changed in the intervening years? In far too many respects, we are still where we were 25 years ago. Some of the same questions being asked then are still being asked today, and are still relevant. Denial and stigma are still rampant. Leadership is maybe the most important ingredient and it’s still true that the very basic kind of prevention – straightforward, targeted prevention – works. Last year, here in New Zealand, we saw 183 new diagnosis of HIV, the highest number ever recorded in any one year. Of these, 89 were men who have sex with men. Complacency has become the norm, adding fuel to our alarming infection rates. HIV is continuing to grow exponentially in New Zealand, as well as worldwide, yet it’s still considered to be everyone else’s problem. “It’s not my concern, it’s not going to knock on my front door!” This complacency is very dangerous and must be checked. The largest group of HIV infection here in New Zealand is still gay and bisexual men. We have carried the stigma of this disease for more than two decades and have buried hundreds of lovers and friends, yet the number of men infected continues to grow. Where is our leadership, both social and political? Our gay leaders, politicians at both national and local levels, gay businessmen, organisers of gay religious, social and support organisations – why haven’t these leaders stepped forward and acknowledged we have a problem that needs to be addressed with clarity and frankness? Only then will these infection rates go down. When leaders are in denial, or they allow policies and beliefs to fuel our complacency, the rates will continue to go up. Our non-governmental organisations cannot fight this virus alone. We in the community have, in the past, educated ourselves and organised an extraordinary response to this virus. It is now time for us to do this again.
Aaron McDonald EDITOR C/- NZAF SOUTH PO BOX 13618 ARMAGH CHCH Email: c.thinking@nzaf.org.nz
3
Survival of the richest If you’re an HIV-positive New Zealander in need of treatment, the chances of you receiving the appropriate medication is less than that of your counterparts living in Australia, just a few hours away. In Australia, there are currently 6 fully funded antiretroviral medications that aren’t available in New Zealand - and there are more on the way. Are the Australians that much sicker than us? The answer, of course, is no. This is (surprise surprise) a funding issue. Three of these medications – used extensively around the world to good effect – are sitting with Pharmac, New Zealand’s drug funding body. WHAT ARE THEY? FUZEON (enfuviride, also known as t20) This is a new class of antiretroviral, a fusion inhibitor, which has been available in Australia since December 2004. Fuzeon was reviewed by PTAC (Pharmacology and Therapeutics Advisory Committee) at their meeting on May 19 last year. They deferred their recommendation, pending further advice from the anti-retroviral subcommittee, who did not meet until November 25.
4
This sub-committee noted that Fuzeon was a difficult medication to administer (it requires twice-daily injections), and because of this approximately 50% of people would decline treatment. In real terms, only 8-10 people would be accessing Fuzeon in New Zealand, with a possible four more each year as they became resistant to other therapies. Despite this, the sub-committee believed Fuzeon was a significant step forward in the treatment of HIV-positive people with multi-class resistant HIV, and considered that it should be used in addition to other antiretroviral medications, rather than replacing them. They recommended that Fuzeon be listed as “high priority” under a new funding category, covering those who have developed resistance to other drugs and are failing treatment; as well as being available subject to “special authority” criteria.
Collective Thinking issue 63 july JULY 06
Three of these medications – used extensively around the world to good effect – are sitting with Pharmac, New Zealand’s drug funding body The cost of funding this will be around $36,000 a year per patient. ATAZANAVIR SULPHATE (REYATAZ) Available in Australia since December 2004, an application was made in New Zealand to Pharmac on January 11, 2005, and was reviewed by PTAC (Pharmacology and Therapeutics Advisory Committee) at their meeting in February 2005. After reviewing the results of the Reyataz drug trials, PTAC advised they needed to be treated with caution, as the drug trial entry criteria didn’t fit New Zealand’s treatment guidelines.
In August 2004, the FDA in the United States approved a new combination medication containing FTC and Tenofovir, under the name Truvada. This combination has since been approved in Europe (November 2004) and Australia (February 2006). Meanwhile, New Zealand is still waiting. In February 2005, PTAC recommended that Tenofovir be listed with a “moderate priority” for treatment-experienced people only. As far as I can ascertain there are currently only nine patients able to access tenofovir under the “exceptional circumstances” scheme. However given the number of treatment-experienced patients in NZ (approx 700) access for this small number of patients is inadequate.
They also recommended that this medication be listed on the pharmaceutical schedule only if the cost were the same as existing antiretroviral medications.
The only reason this is not available here in New Zealand is that it is awaiting an agreement between Gilead (the manufacturer) and Pharmac over pricing.
Another review by the antiretroviral subcommittee on November 25 noted that Reyataz had some advantages over existing protease inhibitors, such as once-daily dosing and fewer metabolic side effects.
There are over 1800 people living in New Zealand with a diagnosis of HIV, and a significant number are receiving antiretroviral medications. Many more are, as yet, undiagnosed.
They recommended that atazanavir sulphate be listed in the pharmaceutical schedule with “moderate priority” and the same special access criteria as other antiretroviral medications.
The nature of HIV is such that resistance develops, and the ability to have alternative medications available is one that can mean the difference between life and death for some.
Once introduced, the subcommittee estimated between 36 and 50 people would be eligible for access to Reyataz over a five-year period. TENOFOVIR DISORPOXIL FUMARARATE (also known as Viread, common name: Tenofovir) This has been available in Australia since December 1, 2002, and was approved in Europe in May 2003 as a first-line therapy.
The medications named here are all needed by people living today here in New Zealand, and widely used elsewhere in the world. The people of Australia and New Zealand may disagree on some things. Rugby, sport and who has the best beaches are points that can be argued, but discussions over where you have the best chance of survival are not ones I think anyone should have to have. Eamonn Smythe National Positive Health Manager, New Zealand AIDS Foundation
5
Death by Diplomacy International civil society denounce UN meeting on AIDS as a failure 6
June 2nd 2006 J Blaylock – from UNGASS.ORG Civil society groups from around the world denounced the final UN Political Declaration on HIV/AIDS, released after marathon negotiations during the UN High Level meeting on AIDS in early June. “Once more we are disappointed at the failure to demonstrate real political leadership in the fight against the pandemic,” said The Most Revd Njongonkulu Ndungane, the Anglican Archbishop of Capetown. “Even at this late stage, we call on the world’s political leaders to rise up and meet the challenges that the pandemic presents and to set ambitious targets at a national level to guarantee universal access to treatment, care, support and prevention.”
UN Member States refused to commit to hard targets on funding, prevention, care and treatment. They rejected frank acknowledgement that some of today’s fastest growing HIV epidemics are happening among injecting and other drug users, sex workers, and men who have sex with men. “The final outcome document is pathetically weak. It is remarkable at this stage in the global epidemic that governments can not set the much needed targets, nor can they can name in the document the very people that are most vulnerable,” said Sisonke Msimang of the African Civil Society Coalition. “African governments have displayed a stunning degree of apathy, irresponsibility, and complete disrespect for any of the agreements they made in the last few months” said Leonard Okello, Head of HIV/AIDS for Action Aid
Collective Thinking issue 63 july 06
International. “The negotiation processes was guided by trading political, economic and other interests of the big and powerful countries rather than the glaring facts and statistics of the global AIDS crisis, seventy percent of which is in Sub-Saharan Africa.” African government delegations reneged on their promises in the 2006 Abuja Common Position agreed to by African Heads of State. South Africa and Egypt, in particular, took a deliberate decision to oppose the setting of targets on prevention and treatment, despite the fact that both participated in the Abuja Summit that endorsed ambitious targets to be reached by 2010. “The continent that is most ravaged by AIDS has demonstrated a complete lack of leadership. It is a sad, sad day as an African to be represented by such poor leadership” said Omololu Faloubi of the African Civil Society Coalition.
But the African governments were not alone. The United States was particularly damaging to the prospects for a strong declaration. Throughout the negotiations they moved time and again to weaken language on HIV prevention, low-cost drugs and trade agreements and to eliminate commitments on targets for funding and treatment. “It’s death by diplomacy,” said Eric Sawyer, veteran activist and 25-year survivor of HIV/AIDS. “Hour after hour, my government fought for its own selfish interests rather than for the lives of millions dying needlessly around the globe.” There has, however, been a strong recognition in the declaration of the alarming feminization of the pandemic. Commitments were made to ensure that women can exercise their right to have control over their sexuality and to the goal of achieving universal access to reproductive health by 2015. This progress was undermined however by regressive governments.
7
“Syria, Egypt, Yemen, Iraq, Pakistan and Gabon blocked efforts to recognize and act to empower girls to protect themselves from HIV infection,” said Pinar Ilkkaracan, President of Women for Women’s Human Rights. “Their failure to commit to ensuring access to comprehensive sexuality education for young people, and promote and protect sexual rights will undermine the response to the HIV pandemic.”
8
This was compounded by the declaration failing to acknowledge that some of the today’s fastest growing HIV epidemics are happening among injecting and other drug users, sex workers and men who have sex with men, despite strong support from the Rio Group of countries. For example, governments have ignored the needs of injecting drug users by not stating the need for substitution drug treatment, putting them at further risk. “Failing to fully address the needs of these groups, and particularly to counter stigma and discrimination by decriminalizing drug use and sexual behaviors, will render them more invisible and ultimately lead to even higher rates of HIV/ AIDS,” said Raminta Stuikyte of the Central and Eastern European Harm Reduction Network. Again the US, along with the European Union and other governments, ensured that the final declaration text contains a substantially weaker reference to the AIDS funding need. It now only acknowledges that more money is needed, rather than committing to raising the needed funds.
An estimated $23 billion is needed per annum by 2010 in order to fund AIDS treatment, care, prevention and health infrastructure. “At this stage in the pandemic, we expected government commitment to close the global funding gap,” said Kieran Daly of the International Council of AIDS Service Organizations. “Instead they have tried to let themselves off the hook.” While there has been a failure of governments to face the realities of HIV and AIDS, civil society will be holding them to account. Civil society will hold governments to account to deliver on universal access. Civil society will make sure governments recognize and support vulnerable populations. The failure of governments to commit will not be accepted. EDITORS NOTE: “Vulnerable populations” includes women and girls, youth, older people, men who have sex with men, injecting and other drug users, sex workers, transgenders, people living in poverty, prisoners, migrant laborers, orphans, people in conflict and post-conflict situations, indigenous peoples, refugees and internally displaced persons, as well as HIV and AIDS outreach workers and people living with HIV and AIDS.
Collective Thinking issue 63 july 06
It’s your story, so tell us about it! HIV FUTURES NZ 2 The Australian Research Centre in Sex, Health and Society at Latrobe University in Melbourne, in collaboration with the New Zealand AIDS Foundation, Body Positive Inc, Positive Women Inc, Absolutely Positively Positive, POZ Plus (formally Body Positive Canterbury) and a range of other community partners will launch “HIV Futures NZ2” in October. The first HIV Futures New Zealand survey was conducted five years ago, providing a comprehensive examination of the health and social experience of HIV positive people in New Zealand. It’s an anonymous, national, non-clinical survey which has six major content areas: health and treatments, sex and relationships, accommodation, employment, community involvement and finances. The survey forms are selfcompleted, and can either be mailed back in hard copy format or completed via the Internet. HIV Futures NZ 2 has a goal of recruiting everyone living with HIV and AIDS (PLWHA) from all walks of life and from all parts of New Zealand. It is hoped that once the questionnaire is disseminated widely that all positive people will have had an opportunity to complete the questionnaire.
Community organizations, clinicians and governments need to respond in ways that address the real needs and concerns of PLWHA. It is essential to therefore document PLWHA experiences in a New Zealand context. “There is no question that the results from HIV futures NZ 2 will substantially improve the precision of our service delivery for PLWHA,” says Tony Hughes, Research Director for the New Zealand AIDS Foundation. “HIV Futures NZ 2 will effectively act as a needs assessment, providing NZAF and its community partners with an enormous amount of local information to focus project planning, to respond to the needs of PLWHA”. Data will be collected from early October through to the end of December 2006 and the results should be available in June 2007. Collective Thinking has signed on to HIV Futures NZ 2 as a community partner and will bring you continued updates on this important project from now until to the release of the final report next year. We will also be including a copy of the questionnaire with our next issue. We hope that all positive people in New Zealand will be supportive of this worthwhile project by completing the survey. It offers us a chance to tell our own individual story about living with HIV and AIDS. Together our individual stories will provide a powerful overview of New Zealand PLWHA experience.
9
DIABETES AND HIV Living with one long-term medical condition is quite enough for most of us. Yet as we live longer with HIV, many of us face competing health concerns, including diabetes. To mark National Diabetes Awareness Week (11 to 17 June) PN has turned the spotlight on how this common but sometimes complicated condition affects people living with HIV. 10
The available evidence on diabetes and HIV makes uncomfortable reading. Men with HIV on HAART are over four times more likely to develop new onset diabetes than HIV negative men. And HIV positive women on a protease inhibitor (PI) are three times more likely to develop diabetes than HIV negative women and women on other drugs. If that wasn’t enough to worry about, having a CD4 count below 300 at some point also appears linked to the development of the condition. Several studies show diabetes may be associated with HIV infection itself, and that its incidence may increase with longer exposure to treatment. But it may be that diabetes occurs less frequently now than in the early HAART era when there was more prescribing of protease inhibitors.
Diabetes occurs if our body fails to produce enough, or respond to, the hormone insulin. This affects the amount of glucose in our blood. As we age and gain weight we are all more likely to develop diabetes, so everyone, regardless of HIV status, should be regularly screened for hyperglycaemia (high blood sugar). This is when too much glucose circulates in the blood. A measurement of over 11mmol/l (or 7mmol/l while fasting) is usually considered a diagnosis of hyperglycaemia and therefore diabetes. DIABETES: THE TWO MAIN TYPES ▲ Type 1 Often diagnosed in childhood, it’s caused by the body’s failure to produce enough insulin, preventing cells from using glucose properly. ▲ Type 2 Also known as ‘mature, new onset diabetes’ or ‘insulin resistance’, it’s caused by the body failing to respond to insulin. It’s more common than Type 1 and can be caused by being overweight and a lack of exercise. It develops as we get older and may also occur due to using HIV drugs, particularly PIs.
Collective Thinking issue 63 july JULY 06
Several studies show diabetes may be associated with HIV infection itself, and that its incidence may increase with longer exposure to treatment.
HOW DOES DIABETES DEVELOP? Our cells need glucose for energy. Over time, they may be less able to absorb the glucose that builds up in the bloodstream after a meal. When this happens, people are said to be ‘insulin resistant’ as they require more insulin to maintain glucose levels within the normal range. As insulin resistance increases, our fat cells release fatty acids to supply our livers with more raw materials to make glucose, but this fails to restore normal glucose levels. Eventually glucose levels rise to a point where they trigger physical symptoms of hyperglycaemia such as tiredness, frequent urination, constant thirst due to loss of fluid, blurred vision and weight loss. In Type 2 diabetes, more serious problems can arise such as lesions in the retina of the eye, kidney disorders, nerve damage (especially in the legs), impotence, bacterial or fungal skin infections and heart disease (angina, stroke or heart attack).
HIV DRUGS AND TYPE 2 DIABETES Studies suggest between two and 10 per cent of people taking HIV meds develop Type 2 diabetes and the prevalence may be growing as people spend longer on treatment. In the D:A:D study of 25,000 people living with HIV, researchers found PI use was associated with a six per cent increase in diabetes for each year on that class of drug. If you are on therapy you should have your glucose levels monitored regularly so steps can be taken to reduce rising glucose levels before diabetes develops. Type 2 diabetes may emerge rapidly after beginning a new drug combo. There are some reports of people with slightly elevated glucose levels advancing to a diabetic state in just a matter of weeks. Extra weight around our middles predisposes us to Type 2 diabetes because fat surrounding organs is highly insulin resistant.
11
INCREASED HEART DISEASE RISK Developing diabetes may put us at greater risk of heart disease in future. When large amounts of glucose are present in our blood, the sugar becomes attached to lowdensity lipoprotein (LDL) or ‘bad’ cholesterol. This causes cholesterol to be oxidised more easily. It’s taken up into the wall of blood vessels where it forms plaques that contribute to hardening of the arteries and heart disease. When sugar attaches to high density lipoprotein (HDL) or ‘good’ cholesterol, the liver finds it less easy to remove this cholesterol from the bloodstream. High glucose levels also increase blood clotting and reduce the flexibility of blood vessels. These factors contribute to heart problems. HEP C COINFECTION Being coinfected with hepatitis C appears to further increase our risk of developing diabetes and hyperglycaemia, especially for those of us over 40 or with a previous history of pancreatitis. OBESITY Being severely overweight is a major factor in HIV negative people developing Type 2 diabetes. A recent study found obesity was an increasingly important complication of HIV, with women and black people more likely to suffer from both.
12
FITNESS FACTORS We can help to normalise glucose levels by increasing the amount of daily exercise we do. Ideally we should try to raise our heart rate above normal levels for at least 20 minutes each day. Brisk walking, swimming, cycling, jogging or aerobics are good for this.
FAT FACTORS People with diabetes should also eat more fibre, choosing wholegrains, beans, fresh fruit and vegetables and cutting back on saturated fats (butter, lard, cream), trans-fatty acids (margarine) and hydrogenated fats (in prepared foods such as cakes, biscuits and pizza). We should also eat more polyunsaturated fats like cornflower, sunflower or safflower oil and soya beans. You should consult a dietitian with specialist knowledge of HIV before you start a diet designed to deal with diabetes. DRUG TREATMENTS FOR TYPE 2 DIABETES If dietary and exercise changes are insufficient to bring your glucose levels back to normal, and you have limited antiretroviral options to switch to, you may need additional drugs to treat diabetes. People starting drugs for diabetes should continue to exercise and stick with dietary changes, to help lower blood sugar. Drug therapy for diabetes aims to lower the peak in our glucose levels after we eat, since a rise in glucose levels after eating plays an important role in stimulating insulin resistance and developing complications such as retinal, nerve or kidney damage. FIRST-LINE DIABETES TREATMENT First-line treatment comes from a class of antihyperglycaemic drugs called sulphonylureas. These include glipizide (Glibenese) and glimepiride (Amaryl). They stimulate the pancreas, a small organ near the liver, to produce more insulin. These drugs can cause weight gain of up to 5kg and blood sugar to fall very low, which may lead to a state of hypoglycaemia (low blood sugar). Glyburide is not recommended for use in people with kidney abnormalities, and is also associated with a higher risk of hypoglycaemia.
Collective Thinking issue 63 july JULY 06
OTHER ALTERNATIVES An alternative option is metformin (Glucophage), which does not act directly on insulin, but rather cuts glucose production in the liver. Metformin tends to reduce weight, unlike the sulphonylureas, and reduce insulin levels. It’s commonly used in obese patients, but may be less suitable for people who have already lost a significant amount of body fat due to HIV drugs. Metformin may also reduce triglyceride and LDL ‘bad’ cholesterol levels, which are often elevated in people with high glucose levels on combination therapy. One study showed that metformin and exercise helped cut risk of heart disease and improved body fat redistribution in people with HIV who have taken HAART. Its most common side effects are stomach pain, nausea and diarrhoea, reported by up to half of all people during the first few weeks of treatment. Diarrhoea and gastrointestinal problems occur less frequently if metformin is taken with food. GLITAZONES A third class of drugs is the thiazolidinediones, often referred to as glitazones. These increase insulinstimulated uptake of glucose by muscle cells. Rosiglitazone (Avandia) and pioglitazone (Actos), have shown the same ability to control insulin as metformin and sulphonylureas. The drugs can improve HDL ‘good’ cholesterol levels and reduce triglyceride levels, blood pressure and blood clotting. No long-term studies have yet reported on their impact on the risk of heart disease.
Glitazones are associated with weight gain, an effect that may not be entirely unwelcome in people with lipodystrophy, because they reduce visceral fat deposits and increase levels of subcutaneous fat, which often decline after extended use of nukes. But there is conflicting evidence about this effect on fat distribution in people with HIV-related body fat changes. Two studies showed no improvement in subcutaneous fat levels or body weight, while another found subcutaneous fat increased in people treated with rosiglitazone for three months. Why different studies have drawn different conclusions is unknown. One worry is that rosiglitazone in people with HIV boosts blood levels of triglycerides and cholesterol. Elevated lipids are a risk factor for heart disease and stroke. So we don’t know the long-term consequences of their use by people with HIV. ORAL THERAPY Therapy may also include insulin injections, or a combination of oral tablets to normalise glucose levels. Insulin therapy is usually reserved for severe cases of Type 2 diabetes, although some experts believe that if it could be used earlier, remission of Type 2 diabetes might be achieved more frequently. A QUESTION OF AGE As we live longer with HIV, it’s natural we may have to deal with other age-related health problems. This makes staying healthy through diet, exercise and choosing drug therapy even more important. If you are concerned that you are at risk of developing diabetes, discuss your concerns with your healthcare team.
13
AIDS Candlelight Memorials - Thank You From NZAF The New Zealand AIDS Foundation would like to thank Eamonn Smythe, the National Co-ordinator for the Candlelight Memorials, and all those who helped light the path to a brighter future at the International AIDS Candlelight Memorials around the country in May. Over four hundred people attended services from Auckland to Invercargill. Candles were lit in remembrance of those who had died from AIDS, and messages were read from Governor-General Dame Silvia Cartwright, Prime Minister Helen Clark, Opposition Leader Don Brash, and Australian High Court Justice Michael Kirby.
14
In keeping with this year’s theme, a strong commitment was made in messages and speeches to keeping the safe sex message alive, in a time when HIV infections in New Zealand are the highest they have ever been. Support for the work of NZAF was also expressed, but groups like Body Positive, Positive Women, Poz Plus, the CART team, NZPC, and Sexual Health Services all need to be acknowledged, says NZAF Acting Executive Director Te Herekiekie Herewini.
“We’re humbled by the recognition given to the work of NZAF in the Candlelight messages, but we’re not in this alone,” he says. “It’s important for us to embrace all the groups that have supported people living with HIV and AIDS, as well as the tireless individual volunteers and allies that have lent their support to HIV and AIDS causes around the country over the last twenty years, and will continue to do so in the future.” NZAF would also like to extend a special thank-you to the local service co-ordinators: Wayne Otter (Auckland), Robyn Cresswell (Hamilton), Susan Kennedy (Tauranga), Debbie Langley (Wellington), Robin Furley (Christchurch), Lisa Te Pana (Dunedin), and Shona Fordyce (Invercargill). “It’s through these Candlelight memorials that we help keep alive the memory of those who have died from AIDS, as well as strengthening our commitment to stop the spread of HIV for future generations,” says Te Herekiekie Herewini.
Collective Thinking issue 63 JULY 06
15
Staying optimistic In this, our second installment in the series on living a happier life with HIV, Dr Rupert Whitaker looks at skills for successful survival. This series of four articles originally appeared in the Positive Nation Magazine from the United Kingdom, beginning in issue 113 June/July 2005 Do you handle your ‘bad’ days with style, or do you muddle through like a character from Winnie the Pooh, asks Dr Rupert Whitaker Beaten-up or up-beat with HIV? It can be hard to be optimistic while living with HIV, especially if you have symptoms. The striking thing is that life can be good despite really bad situations. Keeping a positive attitude can help that happen and, if it doesn’t come naturally to you, it can be learned. ‘Positive style’ gets you through the hard times; it helps you plant a rose in almost any crap that you land in. Having a positive style is 80 per cent optimism and 20 per cent pessimism. The obvious questions are: ‘why, which approach, and when?’
16
SMILING YOUR WAY TO A LONGER LIFE Generally, optimists live longer (even with extreme illness), recover faster, are happier, more successful, achieve more, smoke and drink less, take fewer unnecessary risks, are more attentive and pro-active. They tend to stick at worthwhile things; they’re better liked generally and have better relationships. But in the right situation, pessimism is useful, too: there are positive and negative sides to optimism and pessimism, and having ‘positive style’ is about choosing the positive side of both. Which is which? ‘Positive optimism’ helps you to be happy, resilient, and focus on the good stuff. ‘Positive pessimism’ helps you weigh things up and avoid unnecessary problems. It enables you to be accurate in your judgments, and maintains your ego at a reasonable size. ‘Negative optimism’ however lets you become an insensitive egomaniac; you ignore problems, duck responsibility for those you cause, have magical thinking, and bluff through challenges. This is serious denial and both fundamentalists and ‘speed’ addicts are more likely to have such a style. When this works, you can be fun to have around (think of Tigger); but when it stops working, you can spiral and crash fast.
Collective Thinking issue 63 july 06
Dr Rupert Whitaker is co-founder of the Terrence Higgins Trust and has a clinical practice in psychological medicine. He has lived with HIV for 25 years and is currently writing a reference book and creating workshops called Life Medicine for HIV.
www.lifemedicine.co.uk
‘Negative pessimism’ makes you dwell on problems long past the point where you can learn anything constructive; you often take responsibility for problems that aren’t yours, and you don’t value yourself (it can look like modesty but is more like self-sabotage); it promotes depression and worry, leaching the value out of living. Rather like Eeyore. So, having a positive style means being a ‘positive pessimist’ when you face new risks while being a ‘positive optimist’ the rest of the time. You switch the style when it’s most helpful to you. Can you suddenly develop a positive style? No; it takes awareness of how you think, plus practice. Groups are a good place to learn it, as others help you see what you’re doing. Gradually, you’ll be able to meet challenges better, resolve them more quickly, and bounce back faster. POSITIVE STYLE When something good happens, you like yourself better because of it and find it rewarding. You see what you can do to make it more likely to happen again (after all, you deserve it). If you have a negative style, you’ll think the good thing is a fluke or you’ll dismiss it. NEGATIVE STYLE When something bad happens, you think it says something important about who you are. For example: a bad job interview means you’re lousy at them and you’ll never get a job. You get so paralysed by your sense of incompetence that you fail to prepare for the next one. If you have a positive style you’ll think it was just bad luck and the next interview will be different and possibly successful. Think of something as it happens: are you looking at it with a positive or negative style? How could you look at it differently? And think about different situations: you might have a ‘negative pessimist’ style about your job and a ‘positive optimist’ style about your relationships. If you have a great job and a dysfunctional relationship, it can make life really hard going. Having a positive style is about developing an intelligent strategy to life; one that makes life more worth living.
17
Forums Seek Strategies to Stop Soaring HIV Infection within the MSM Community More than 2700 people have been diagnosed with HIV in New Zealand since the first known case in 1984, and the infection rate within the communities of men who have sex with men (MSM) continues to grow at an alarming rate. Solving a health crisis such as HIV and AIDS calls for serious innovation and a need to think outside the box. No single organisation or individual can possibly have a monopoly on how to halt this worrying surge of infection amongst the MSM communities. The New Zealand AIDS Foundation says it’s time to reevaluate strategies for dealing the soaring HIV epidemic among men who have sex with men, and a series of community forums were held last month in Christchurch, Wellington, Hamilton and Auckland to engage directly with the MSM communities on the issue, following last year’s record number of 89 new infections amongst gay and bisexual men.
18
An extra forum in Tauranga and a hui in Auckland for takatapui tane (Maori men who have sex with men) were also added for July following requests made by the community. “We can’t stress enough how important these open community forums are for all of us. NZAF is and always has been a communitybased organisation, and we can’t work in a vacuum,” says NZAF’s National Manager of Health Promotion, Te Herekiekie Herewini. “Last year’s disturbing increase in HIV infections shows that we still have a lot of work to do. These forums will help us find out what we’ve been doing right, what we’ve been doing wrong, and how we can work together to stop this virus spreading.” Gay and bisexual men, their families, people living with HIV, health professionals with an interest in HIV and AIDS and representatives
of allied communities and groups were among those encouraged to attend. The format of the evening forums included an open Q&A and discussion session, and feedback from the forums was minuted. Collective Thinking will bring a full report in our next issue on the outcome of these important and worthwhile forums.
Collective Thinking issue 63 july 06
NEW SOCIAL WORK AND INTERNET SERVICE FOR BURNETT CENTRE A much-needed social work role and outreach to gay and bisexual men using the Internet is being added to the services provided by the New Zealand AIDS Foundation’s Burnett Centre in Auckland. Damien Moore, formerly of the Foundation’s Positive Men’s Health Project, is moving to the new role with the title of Positive Community Support Worker. His position will be a mix of social work, internet outreach, and involvement in special research projects like HIV Futures, an important study of the experiences of people living with HIV and AIDS in New Zealand. Eamonn Smythe, NZAF National Positive Health Manager, says the role is particularly needed in Auckland. There is a currently a waiting list for those wishing to use the Burnett Centre’s counselling services, because of demands created by counsellors also being asked to help with social needs of clients.
“We need a social worker with large community involvement, and Damien is well known in the community,” Smythe says. Moore will provide support services for a range of positive health issues, from advice on travel and medication adherence to help with WINZ and immigration applications. An equally important aspect of the new role will be an internet presence, with the creation of an online “positive profile” to challenge unsafe sex behaviours and offer advice. “The growth in the numbers of MSM hooking up via the Internet is huge,” says Smythe, “and it’s changing the way we do our jobs.” Outside of cyberspace, the role also provides for an expanded presence at sex-on-site venues, and greater encouragement of HIV testing.
19
HIV maternal screening success in Waikato An HIV screening programme for pregnant women run by the Waikato District Health Board has been running successfully since March 20, with 1,600 women taking advantage of the service. None have been found to be HIV positive. “There has been 99 per cent uptake of the screening which represents overwhelming buy-in from GPs, nurses, midwives and prospective parents,” Health Minister Pete Hodgson said from the United Nations high-level meeting on AIDS in New York last month.
20
“If detected early, an HIV pregnancy may result in a healthy HIV-free child. The implications for this are just wonderful. There will always be emerging health challenges for our society – but here is the potential to have a generation of children born without HIV.” Within the next three years, all 21 DHBs around the country will have completed the necessary work to enable them to offer a high quality screening service. The HIV screening will be incorporated into existing tests for pregnant women at between 8 and 14 weeks, which include: full blood count, Rhesus factor, Rubella, Syphilis and Hepatitis B. HIV is currently uncommon amongst pregnant women in New Zealand, however it is increasing so it is being recommended that the test be offered universally. Currently any woman who believes she is at risk can have the test. Eamonn Smythe National Positive Health Manager for the New Zealand AIDS Foundation met recently with the National Screening Unit co-coordinator for Antenatal and Neonatal Screening and welcomes this as a significant development in the early detection and treatment (where appropriate) of HIV.
Collective Thinking issue 63 july 06
HIV is currently uncommon amongst pregnant women in New Zealand, however it is increasing so it is being recommended that the test be offered universally
21
NZAF Constitutional Review Announced EDITOR’S NOTE The constitutional review of the New Zealand AIDS Foundation detailed below isn’t just an administrative process. It is a thoughtful and comprehensive process that will build an understanding, inspiring call to action. It is also an opportunity for people living with HIV, their carers and supporters, to engage and interact with the working group. It is a process where we can share our own thoughts about the governance structure of this organisation, so that it may continue the vital work it has undertaken for over twenty years at the coalface of New Zealand’s HIV and AIDS epidemic. It is vitally important that people living with HIV and AIDS, their carers and supporters are actively involved in this process as NZAF members.
22
I would encourage all those who watched the events of last year unfold, who expressed a view in a conversation, read a news article, contributed to an online forum or attended the AGM as observers to become NZAF members and advocate for a governance structure which you believe will allow the Foundation to continue to improve our lives, while reducing the impact of HIV and AIDS on those affected, and our community at large. I have no doubt that our collective involvement in this process will allow us to overcome the divisiveness of the debate last year and come together to assist the Board in establishing a path ahead, allowing it to enhance its governance. Aaron McDonald / EDITOR
At last year’s Annual General Meeting in November, NZAF members expressed considerable concern about a Board proposal that had been released a few months earlier. The proposal sought to interpret an NZAF constitutional clause about the Treaty of Waitangi within a governance context. The Board proposed a partnership interpretation, whereby at least half of the Board would be required to be of Maori descent at all times. Although later withdrawn, the actions of the Board created suspicion of the Board’s motives and strategic direction in the minds of many members that, by the time of the AGM, resulted in a series of remits challenging the Board to reconsider the issues raised. Amongst those remits was one from the Board that proposed the creation of a working party to work through the Treaty of Waitangi clause, as well as other constitutional issues that had been raised in the lead up to the AGM. This remit was passed by the membership. At its February meeting, the NZAF Board went about carrying out the wishes of the members by drafting a terms of reference for a constitutional working group. These terms of reference were accepted at the Board’s April meeting and, in line with those terms, Board members Jeremy Lambert and Cameron Law were asked to form the working group. The Board required the group to include NZAF members who had shown an interest in the organisation’s constitution but, most importantly, had played important roles in NZAF governance and operations in the past. With this in mind, the following three NZAF members were invited to join Jeremy and Cameron on the working party: ▲ Warren Lindberg, former NZAF Executive Director ▲ Michael Stevens, former Chair NZAF Board ▲ Richard Tankersley, former NZAF Trustee
Collective Thinking issue 63 july 06
CONSTITUTIONAL REVIEW PROCESS TIMELINE (Revised chamges in Bold) 11th July 2006
Discussion document issued
7th Aug – 18th Aug 2006
Consultation meetings
25th August 2006
Written submissions close
24th October 2006
Options report and Board’s response released to members (with AGM papers)
24th November 2006
Annual General Meeting
By June 2007
Special General Meeting
The Board is grateful that all three agreed to participate in the process. The working group met for the first time in early May. Jeremy Lambert was asked by the group to act as convenor. The group agreed to some terms of reference (with minor amendments to clarify its scope) and developed the consultation process. The information below as well as the terms of reference for the review were mailed out to members in May, with the information also posted on the NZAF website. The group decided on a consultation process that would allow for maximum involvement from the membership. A discussion document was developed at the direction of the working group to identify the central themes that have emerged from discussions on NZAF’s governance, based on the submissions received in June/July 2005, the remits at the November 2005 AGM, and the responses to the Board’s May 2006 Call for Issues, which closed on 23 June 2006. Based on feedback received from the Call for Issues, the working group has determined to: a) extend the period for member consultation before the written submissions deadline; b) have membership vote upon the final options that arise from the submissions at the November 2006 AGM; c) allow for more time to draft the new/revised clauses as directed by the November 2005 AGM; and d) set a Special General Meeting in the first half of 2007 to bring the final draft Constitution back for membership vote. Further consultation on the NZAF Constitutional Review (the Review) is scheduled for 7th to 18th August 2006 through a series of public consultation meetings. Written submissions on specific constitutional changes are then invited and the deadline for these is 25th August 2006. The written submissions and feedback at the public meetings will form the basis for the working group’s options paper to the Board regarding any amendments to the Constitution. The Board will consider the proposed options paper at their September 2006 meeting.
The final options paper will go out to members in October 2006 with the November 2006 AGM papers. The options paper will provide a final determination of the options identified in respect to the constitutional clauses to be changed or added. The AGM will decide upon these options and the outcome will shape a new Constitution for NZAF. The final draft Constitution will be returned to the membership for final vote at a Special General Meeting in mid-2007. HOW TO HAVE YOUR SAY You are encouraged to give feedback on the themes and issues contained in this discussion document in two ways: 1. DISCUSS THE ISSUES AT THE CONSTITUTIONAL CONSULTATION MEETINGS You may orally present your views at a series of public meetings to be held in the following areas: Auckland
6:30 pm 7th August
Venue T.B.A
Hamilton
6:30 pm 8th August
Venue T.B.A
Wellington
6:30 pm 15th August
Venue T.B.A
Christchurch
6:30 pm 14th August
Venue T.B.A
2. MAKE A WRITTEN SUBMISSION You may also submit your views in writing. All written submissions are due by 5 pm on Friday, 25th August 2006. Please forward a copy of your submission to: NZAF Constitutional Review C/o NZAF Policy Analyst PO Box 6663, Wellesley Street, AUCKLAND Email: policy@nzaf.org.nz Tel: (09) 303 3124 / Fax: (09) 309 3149 The discussion document and its appendices are available on the NZAF website (www.nzaf.org.nz). The appendices can also be sent by post or email if requested.
23
Positive Women Plans Family Hui When you’re HIV-positive, you don’t live in isolation, it affects your whole family, says Jane Bruning of Positive Women.
24
And so the idea of a family hui was born. “We’ve had some women who haven’t been able to come to our annual women’s retreats because they didn’t have anyone to look after their families, and couldn’t bring them along,” Bruning explains. “We thought a family hui would be good, because then everyone from the family could come.” Funding applications have been made for the event, which will hopefully take place on the first weekend in September. Twelve families have so far expressed an interest in attending, with a maximum of twenty-five places being available at the venue – Totara Springs in Matamata. “Each family would be staying together, housed in a family unit with a kitchenette,” Bruning says. “It’s a total family environment – they have go-cart racing, rock climbing, canoeing and other facilities to keep the kids occupied, and conference facilities for the adults. And it’s all catered in house.”
During the day, a team of volunteers will look after the youngsters so the adults can attend workshops, for which a variety of themes are planned, including family relationships and dynamics, sero-discordant relationships, disclosure (including disclosure to children) and medication. Separate workshops will also be run for positive and negative partners, and women and men. Bruning says the hui is not strictly for Mum, Dad and the kids either. “You could, for example, be a positive woman in her 30s with her mother. We have one woman who lives with her daughter and her grandchildren, so they all live with HIV.” If the event goes ahead, financial assistance will be available for families who require help with travel expenses. “The intention is to pay for everything, but if we don’t have all the funding by the end of July we’ll cancel it. We wouldn’t want to exclude any family that couldn’t afford to come,” Bruning says. “If it doesn’t go ahead in September, we will try again next year anyway. It’s not going to go away. We think there’s a huge need for it.”
Families interested in attending the planned hui should get in touch with Positive Women by phoning 09 309 1858 in Auckland or 0800 POZTIV (0800 769 848) for the rest of the country, or email: positivewomen@xtra.co.nz .
Collective Thinking issue 62 april 06
In
“Half of th e world’s 4 with HIV an 0 million p d AIDS live eople in the Comm Ignorance a o n w n e d a lth. l ack Brief unpcoesrtainty, even fear. oBfutunsderstanding breeds omeone who itive can l is HIV ead a full HER MAJESTY and rewardi THE QUEEN SP n g EAKS PUBLIC life” THE FI LY RST TIME, FR ABOUT HIV AN OM HER COMM D AIDS FOR ONWEALTH DA Y ADDRESS IN SYDNEY
“The money once ring-f HIV epidemi enced to ta c among gay ckle the m e n has become and like cr scarce, ude oil, is DR JUSTIN VA becoming sc RNEY, IN A PLENARY SPEE arcer” CH TO THE CH APS CONFEREN CE
“No one kno ws the real than the pe ity of the ople who ha disease ve it. This a p p l i e i s t ’ w s hether HIV or any SEAN STRUB, FOUNDER OF kind of sit POZ MAGAZINE uation” , CRITICISING OUT HIV POSI THE ABSENCE TIVE PEOPLE OF IN CARE AND ADVOCACY GR OUPS
“The land o f the free? It’s the la It’s quite nd of the s shocking th lave. at we rely take care o on charitie f p e o p l s to e with AIDS (the US), h . In this c ow difficult ountry it is to ge t treatment . We’re in a terrib l e system. It’s much b OPENLY GAY HOLLYWOOD AC etter in Eu TOR RUPERT rope” EVERETT IN THE MIAMI HE RA
LD “The cost o f the war in American ta Iraq has co xpayer appr st the oximately $ This amount 274,146,167 could have ,464. fully funde d worldwide AIDS programmes for 27 year SISTER MARY s” ELIZABETH,
FROM WWW.AE GIS.ORG
25
news FIRST COMBO CAN LAST SEVEN YEARS
People living with HIV in the UK remain on their first antiretroviral combination for an average of seven years, according to new research. Between 1996 and 2002, 3,647 people living with HIV started their first triple combination therapy at one of the 27 participating HIV clinics across the UK.
26
YOUNG PEOPLE LESS LIKELY TO STICK TO MEDS Young people, those living alone or those who are treatment-experienced are more likely to struggle taking antiretrovirals as prescribed, a large study has found. Taking a ritonavir-boosted PI was another factor that increased the risk of poor adherence. The Swiss HIV cohort study looked at 3,607 people on antiretrovirals for at least six months, and their current combo for at least one month. Almost one in three participants reported missing one or more doses in the previous four weeks while around 15 per cent missed two or more doses. Around seven per cent reported taking fewer than 95 per cent of doses in the preceding four weeks. Overall, around six per cent reported taking a drug holiday. The authors concluded that investment in behavioural dimensions of HIV was crucial to improve adherence in ARV recipients. JAIDS 2006; 41: 385-392
As they began therapy for the first time, people’s CD4 counts averaged 270 and viral load 75,000 copies. Around one in ten had an AIDS diagnosis before starting therapy. Their first therapy lasted an average of 6.7 years. People who started with a CD4 count below 170 cells or with a prior AIDSdefining illness, or who started therapy with an unboosted protease inhibitor, stayed on their first combo for a shorter time Researchers concluded that treatment failure and viral load rebound accounted for between 40 and 50 per cent of treatment switches, and that side effects were the main reason most people switched therapy. Abstract O33
s
Collective Thinking issue 63 JULY 06
FRANCE & UK PROMOTE AIR TAX LEVY FOR HIV France and Britain have struck a deal that has ensured UK support for a tax on air travel to generate funds to fight HIV. British Chancellor Gordon Brown agreed to support the air travel levy if France backed his plan to increase aid for poor countries through an international finance facility. Campaign groups said the agreement, achieved in February, was a breakthrough in efforts to generate the extra $50bn (£20m) in aid pledged by the G8 at last year’s Gleneagles summit. More than 100 countries meeting in Paris agreed to look at new ways of funding development to achieve UN goals of halving the number of people living on less than $1 a day by 2015, cutting infant mortality rates by two-thirds and providing primary education for every child. The International Finance Facility scheme involves “frontloading” development aid over the next decade.
A further working party will now look at the feasibility of the “live now, pay later” scheme that could be funded through a tax on airline passengers. A pilot scheme has been successfully used to raise cash for immunisation. In addition, Britain said it expected its spending of £1.5bn a year on fighting HIV and AIDS “to continue over the long term”. It also supports the proposals from French President, Jacques Chirac, for an international drug-purchasing facility; a scheme for bulk buying medicines for poor countries at low cost.
COLLECTIVE THINKING IS A FREE PUBLICATION WITH CONFIDENTIAL MAILING LIST. IF YOU WOULD LIKE TO BECOME A SUBSCRIBER OR IF YOUR DETAILS HAVE CHANGED PLEASE COMPLETE THE FORM BELOW AND MAIL TO: COLLECTIVE THINKING, PO BOX 6663, WELLESLEY STREET, AUCKLAND NAME: ADDRESS:
OR E-MAIL YOUR CONTACT/UPDATE DETAILS TO: C.THINKING@NZAF.ORG.NZ
27
20 Years On... From a fearless gay community response to prejudice, discrimination, and the deadly HIV virus, the New Zealand AIDS Foundation was born. We join with our community in celebrating this 20th anniversary of Homosexual Law Reform. We’ve come a long way, but HIV is still with us. Let’s celebrate our progress and - more than ever continue to love life and embrace safe sex. on behalf of the Members, Board, and Staff of the New Zealand AIDS Foundation