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Budget blocked, but it’s not over yet, says Costello

By PAUL KIDD

The federal government’s proposed changes to the Disability Support Pension and Pharmaceutical Benefits Scheme appear to have foundered in the Senate, after Labor, Democrat and Greens Senators refused to pass the controversial measures late last month.

The government now faces a $1.1 billion hole in its finances, and will now pursue an “alternative course of action,” says Family and Community Services Minister Amanda Vanstone.

Thousands of people living with HIV/AIDS could be forced off the Disability Support Pension, and all PLWHAs will face increased prescription drug costs, if the government succeeds in convincing the Senate to pass what NAPWA has called “a tax on illness” and “the worst possible budget” for positive people.

Under the proposed changes, eligibility for the DSP would be severely restricted, with people assessed as being capable of 15 or more hours of work per week denied access to the benefit. At present, people who are unable to work 30 hours per week are eligible. If passed, the changes could mean that potentially thousands of PLWHA will be removed from the DSP and forced onto the ‘Newstart’ unemployment allowance.

“The Government thinks this move will encourage people with disabilities to consider the possibility of part-time work, when, for chronic illnesses such as HIV/AIDS, the reverse is more likely to be the case,” said NAPWA vice-president David Menadue in a statement.

The Futures 3 national survey of people with HIV/ AIDS, released in May, found that 12.9 percent of PLWHAs report working between 15 and 30 hours a week. Of these, 19.4 percent are already living below the poverty line. As the Newstart allowance is currently $52 per fortnight less than the DSP and has less generous requirements for income and asset testing, the changes are likely to force more PLWHAs into poverty.

The budget also sought a 28 percent increase in the level of co-payment for Pharmaceutical Benefits Scheme (PBS) prescriptions – a rise of one dollar per script for pensioners, $6.20 for non-pensioners. For PLWHAs on triple combination therapy, the rise could translate to an annual increase of between $36 and $223 for antivirals, plus an additional amount for any additional drugs prescribed.

The government, which says the increases are needed to curb the spiralling cost of the PBS, currently $4.2 billion a year, has threatened to block the approval of new high-cost drugs to force the Senate to approve the controversial changes. Speaking in parliament on 19 June, Treasurer Peter Costello reiterated the warning. Unless the government’s proposals are passed, he said, “fewer new treatments will be financially affordable in the future.”

Senator Kay Patterson, the Federal health minister, reinforced the threat. “I will lay the blame at the feet of the Labor Party, the Independents, the Democrats and the Greens when I am faced with the difficulty of having to pay for new medications,” she told ABC News.

Although the government appears to have abandoned the DSP cuts for the time being, it is expected to reintroduce the PBS bill later in the year, perhaps following a publicity campaign to inform the public of the true cost of PBS medications.

Speaking to the Sydney Morning Herald, the vice-president of the Australian Medical Association, Dr Trevor Mudge, spoke out against the government’s threats. “Suggestions by the Health Minister of limiting the introduction of new drugs will only further disadvantage the poorest and sickest in the community,” he was reported as saying.

“James” (not his real name) has been on the DSP since 1995. Despite ongoing health problems, he’s managed to hold down a job for the last two years, first on a part-time basis and now full-time. He’s about to lose his pension card, a prospect that scares him as he needs ten prescriptions filled each month. Even with the PBS safety net, the proposed increases would cost him $374.40 extra a year; an amount he doesn’t feel is fair or justified. “It places me in a frightening situation,” he told PL. “I will not be able to meet the monthly cost of nearly $300 coupled with the other expenses of general living.”

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PBS protest

Photo: Courtesy MCV

A real kick in the guts

By David Menadue

“A real kick in the guts.” That’s how Daniel, an HIV-positive participant at a recent forum at Melbourne’s Positive Living Centre described the government’s proposed changes to the Disability Support Pension (DSP) and the Pharmaceutical Benefits Scheme (PBS) announced in the May federal budget.

In an impassioned speech from the floor, Daniel spoke of the difficulties he faces trying to stay in the workforce, with the side effects from treatments and the frequent need to take time off for medical appointments.

“Taking away the safety net of the DSP for me because I work more than fifteen hours is just going to add to my stress,” he told the meeting. “Add the new PBS costs and I’m in further trouble. I’m half- tempted to throw in my job and do nothing! In the long run it might be better for my health!”

A lot of working PLWHAs may well be thinking along similar lines if the government manages to get their proposed changes through Parliament. The sentiment at this meeting was that many people had struggled to rejoin the workforce, to try to get enough income to get themselves above the poverty line, and that these moves were going to be a disincentive to continue working. Unlike some disabilities, HIV is an episodic condition in which someone’s level of well-ness can change dramatically each time he or she switches treatment or when a new HIV-related condition comes along.

The government needs to understand that people with chronic illnesses need the safety net of the DSP in case their health deteriorates.

An adviser to Family and Community Services Minister Amanda Vanstone was at the forum and explained that the new rules would not apply to people with Category IV AIDS. “Centrelink regards someone who has Category IV AIDS as having a manifest condition. This means that they cannot be expected to work for 30 hours a week (currently, 15 hours under the proposed new rules) over a two-year period. They will be exempt from these changes.”

The audience at the forum was a little bemused by this, given the current situation with treatments where some people with HIV can actually be sicker than a person with AIDS because of side effects. “This is great for someone with Category IV AIDS,” said an HIV-positive member of the audience, “so what do you want the rest of us who are working to do? Stop taking our treatments, develop an illness so that we can get the DSP that we need to protect us financially in the future?”

Enter the compliance queen
The rationale behind the Government’s proposed changes to the eligibility criteria for the DSP has been given as the need to stem the increasing numbers of people placed on the pension over the last few years and a particular concern with those on the DSP who are supposed to be trying to defraud the Commonwealth by pretending to have a “bad back”.

I was a member of a delegation of representatives from disability organisations that met with Senator Vanstone over the DSP changes in mid-June. The Minister had dropped the rhetoric about bad backs, which, it seemed, was an unsuccessful tactic to try to appeal to members of the community who are keen to attack ‘dole bludgers’, and other welfare cheats. Vanstone had set herself up in the media as the Compliance Queen who would stop rorting of the welfare system but now she had changed tack.

“I don’t understand what all this media fuss has been about,” she said. “The changes are only going to affect about three percent of people with a disability. They are the least disabled members of those currently on the DSP.” When we pushed the fact that there were people experiencing episodic illnesses who would be disadvantaged under these changes, she adeptly changed the subject. We were subjected instead to a tirade about the Commonwealth/States Disability Agreement and how if these changes were to be passed, there would be more money for people with disabilities to train them to get back to work.

Vanstone proved to be very disappointing; the only joy that disability groups got from her was the revelation that she was not sure if she would re-introduce the DSP bill now that the Democrats (in particular) had refused to pass it and ruled out any compromise.

Senator Lyn Allison from the Democrats proved to be much more receptive. Allison spoke of the need for the government to re-read the McClure report into welfare reform released last year and to address the real obstacles that people with a disability have in trying to get work in the current environment. Allison was keen on the McClure idea of a single welfare payment system with a proper “participation allowance” to help people get back into the workforce or to do volunteer work. “Everyone doesn’t have the capacity to work, particularly people with a disability,” she said. “Volunteer work can be just as valuable.”

The ‘single welfare payment system’ which Allison was referring to has been supported by a number of disability groups, on the proviso that the extra allowance for people with a disability covers their costs adequately. They argue that people with a disability want to work but there have been insufficient financial and systemic incentives for them to do so. A report on how the costs of disability might be tabulated under this system is due to be released by the government soon.

But it sounds like a logistical nightmare for Centrelink to introduce such a massive change to the current system, and there are clearly problems with it: how would such a system cover those people whose disability pre-cludes them from participating economically or socially, for instance? The current DSP provides basic cover for their needs and I know that NAPWA, for one, will not be supporting any change which further disadvantages or complicates life for people with HIV in the process.

For the moment though, the proposed changes to the DSP seem unlikely to pass through the Senate and the general hostility to the changes in the community (including from an unlikely ally in Sydney radio shock-jock Alan Jones) seems to have at least partially tempered the Government’s enthusiasm for the idea. Labor’s Shadow Minister for Family and Community Services, Wayne Swan, told us that the government’s own polling on this issue shows that the community is not prepared to bucket people with a disability in the way that (unfortunately) they are willing to criticise the unemployed. Politicians have been absolutely swamped with objections to these changes and for once, this community pressure may pay off.

Unfair PBS Increases
As AFAO President Bill Whittaker points out, anti-HIV medicines are helping many people with HIV/AIDS who could not work before rejoin the workforce and make a greater contribution to society. Antivirals are keeping people well and out of acute beds in hospitals. The benefits of providing people with the best possible treatments for their health conditions have to be seen in the bigger picture: the greater health of the community has obvious economic and social benefits.

These arguments have been ignored by the government, which talks of a huge blow-out in the cost of the PBS, with some drugs costing the taxpayer hundreds of dollars a script. As consumers of some high cost drugs ourselves, largely under the separate S100 system, people with HIV/ AIDS have an investment in making sure the government is prepared to pay for the drugs which keep us alive and well. This presents us with a conundrum when government argues that the savings made by these proposals will be used to finance the higher costing drugs, such as our antivirals.

Surely there can be few greater priorities for govern-ment than looking after the health of its people. Whether people need expensive drugs to stay alive or to help control an attack of asthma, they are both essential responsibilities of government that have to be budgeted and provided for.

There are many of us who look at the millions of dollars being provided for building and maintaining refugee camps, at the enormously increased expenditure on defence in this Budget and at absurdities like the recently-introduced “baby bonus” and wonder where this government’s priorities lie. And how, in all conscience, Treasurer Costello can seek to recoup costs for measures like this from people with disabilities and chronic illnesses.

It’s a real kick in the guts, as Daniel says.

The HIV Futures 3 report shows that many positive people had difficulty complying with their medications and that a significant percentage reported that the cost of medications was one of the reasons for this. In other words some people are choosing whether or not to take treatments based on their capacity to pay for them.

Costello has made light of the “extra dollar” which people on a pension will have to find with this PBS increase, ignoring the fact that people with chronic illnesses, including HIV/AIDS, have to fill multiple scripts each month, incurring significant costs. Positive people on the DSP often have at least ten scripts, a total of $46 per month if Costello has his way. Those of us not on the pension face a much heavier impost: ten scripts at $28.60 adds up to $286 per month!

The Federal Government seems more determined to introduce the PBS changes than the DSP ones at the moment. As Positive Living went to press, the Democrats were suggesting sensible alternative approaches such as a small rise in the Medicare levy to cover the drug costs. I think this is the correct approach – cutting back on essential drugs and the health of society is shortsighted in the extreme and should never be acceptable.

The Medicare levy is there to pay for the medical system and so it’s a logical solution to fund an increase in the cost of the system through the levy, which spreads the cost across the entire community, instead of slugging those least able to pay.

An increase in the Medicare levy would, however, be unlikely to appeal to a government that is always keen to protect the hip pockets of the more affluent in society. Unfortunately it seems the bumpy ride that this Government introduced for the disadvantaged, including people with HIV, in the Budget is bound to continue for some months yet.

A source within Centrelink is concerned that the advice given by the Minister’s adviser on people with Category 4 being “manifest” and hence exempt from any new rules, is probably incorrect. Current Centrelink policy would indicate that it is the severity of the disability rather than it being automatically manifest which might be factored into decisions on exemptions.

David Menadue is vice-president of NAPWA. The opinions expressed here are his own and may not reflect the official position of NAPWA.

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Study confirms antivirals safe in pregnancy

An American study has confirmed that most HIV antiviral medicines are safe for use in pregnancy, contradicting an earlier study that linked HAART with premature births.

The new study, published in the New England Journal of Medicine on 13 June, showed that those who took antiretrovirals were no more likely to give birth to premature or low-birth-weight babies than those who did not.

Researchers examined the medical records of 3266 HIV-positive expectant mothers enrolled in clinical trials who gave birth between 1990 and 1998. About two-thirds of the women were receiving antiretroviral therapy: 1580 on monotherapy, 396 on combination therapy not including a protease inhibitor, and 137 on combinations which did include a PI.

The rates of premature delivery, low birth weight, very low birth weight and stillbirth showed no significant difference between the treated and untreated groups, the researchers found. Even after adjustment for risk factors such as HIV disease progression (indicated by a low CD4 count) and tobacco, alcohol and other drug use, the rates for adverse pregnancy outcomes still remained similar across both groups.

Overall, the study authors found that “the risk of an adverse outcome of pregnancy was not associated with the use of combination antiretroviral regimens.” In particular, “the risk of premature delivery was not significantly higher with combination therapy than with monotherapy or no therapy.”

A link was found between the relatively small number of women taking protease inhibitors and low or very low birth weight, however the study authors say that this finding requires further investigation as the women taking PIs tended to have more advanced HIV disease. The authors argue that the slightly increased risk of having a baby with low birth weight was significantly outweighed by the benefits to mother and baby of protease inhibitors.

Although the study was unable to look at early pregnancy loss, the risk of congenital abnormalities, or the long-term health of the infants, the news will be welcome for HIV-positive women, many of whom have had to make decisions about taking antiretroviral therapy to maintain their health and avoid transmitting HIV to their child in the absence of clear assurances of safety.

The study concludes that “the risks of adverse outcomes of pregnancy that are attributable to antiretroviral therapy are low and are likely to be outweighed by the recognised benefits of such therapy during pregnancy.”

• Children born to HIV-positive mothers are at increased risk of developing heart abnormalities, regardless of the HIV status of the infant, according to a study published late last month on The Lancet’s web site. Researchers from the University of Rochester, New York, compared 600 children born to HIV-positive mothers with 195 children whose mothers did not have the virus. 93 children in the first group were HIV-positive. Cardiac function was tested regularly for up to five years. The HIV positive children tended to have higher heart rates, and the children of HIV-positive mothers tended to have decreased low left ventricular function, a condition which reduces the ability of the heart to pump oxygenated blood through the body. While the researchers were unable to determine a precise cause, they recommended additional cardiac screening and follow-up for children of HIV-positive mothers.

— AIDSmap/New York Times/Kaiser Network

Stemcell breakthrough

Researchers in Melbourne have made a major discovery using stem cells which has potentially profound implications for HIV/AIDS. Using mouse stem cells, the team at Monash University have succeeded in growing a functioning thymus, the organ which – in humans as well as mice – is instrumental in the production of CD4 cells.

The researchers believe that the technique could eventually be used to restore the thymus function of people with HIV/AIDS and other immunological conditions.

The thymus is a small glandular organ located near the heart. Its functions include the process of clonal abortion (described in the ‘Backgrounder’ section of the last PL), which is crucial in the preparation of CD4 cells for their infection-fighting role in the body. Even in people without immune-depleting illnesses, the thymus almost completely shuts down by the age of 20, making the process of recovery from HIV/AIDS-related immune deficiency slow and difficult.

Associate Professor Richard Boyd and Dr Jason Gill of the University’s medical school performed the research, which was published in Nature Immunology last month. The scientists identified, for the first time, the stem cells which generate a key part of the thymus, the epithelium. Using the stem cells they were able to grow cell cultures which they then injected into several mice, where the cells developed into new thymus glands. They were then able to confirm that, after being transplanted to the correct location, the new organs functioned correctly, producing new CD4 cells.

The scientists believe their groundbreaking work will be able to progress to human tests within five years, opening the way for growing replacement thymus tissue in the laboratory, or using gene therapy to correct genetic mutations that can impair thymic function. “The discovery . . . is hugely exciting for us,” Professor Boyd said. “[It] has taken 15 years of dedicated research.”

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US call for action on Hep C

Health officials in the United States have been warned that as many as 16 million Americans may be infected with Hepatitis C — four times the current number — within a decade. The warning came from a twelve-member ‘consensus panel’ convened by the National Institutes of Health (NIH) to advise on Hep C policy.

The panel also “urged” that research address, and combination therapy be made available to, Hep C positive people currently considered ineligible, including injecting drug users, children, alcohol users, and people coinfected with HIV.

“The good news is that new combination therapies are having a beneficial impact on this disease,” said the chairman of the panel, Dr James Boyer, of Yale University. “In addition, preliminary research indicates that this approach may prove useful in treating important subgroups of patients … previously ineligible for treatment.”

The panel released its 39-page statement at the conclusion of a two-and-a-half-day conference at the NIH last month, called to update recommendations made in 1997 by a similar panel. Since that time, clinical trials of pegylated interferon plus ribavirin as combination therapy have demonstrated an increasing level of success, especially in contrast to interferon monotherapy.

The panel said there was an urgent need to widen the focus of research into combination therapy for Hep C.

“Most clinical trials have excluded [groups] like children, the elderly, patients with coinfections, and patients with advanced liver cirrhosis,” Dr Boyer told Reuters Health. “But we now know these patients respond to treatment,” even if they don’t respond as well as some other patients.

More than four million Americans infected with the Hepatitis C virus, making it the most common blood-borne infection in the US.

Paul Kidd

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Briefs

Australia bids for GNP+2003
NAPWA has lodged a bid to host the 11th international conference of the Global Network of People Living With HIV/AIDS (GNP+) in Cairns, Queensland during September-October 2003. GNP+ is an international network of HIV-positive people based in Amsterdam, the Netherlands. The first GNP+ conference took place in Denver, Colorado in 1983, and recent conferences have been held in Warsaw, Poland (1999) and Port of Spain, Trinidad (2001). An announcement of the winning bid is expected during the Barcelona AIDS Conference this month.

South Africa: ‘the worst is over’
The rate of HIV prevalence in South Africa appears to have levelled off, according to the South African Health Ministry. In a survey of 16,730 pregnant women attending government clinics, 24.8 percent were found to be infected with HIV, up from 24.5 percent the previous year. “We can confidently say that the prevalence rate has stabilised,” Health Minister Manto Tshabalala-Msimang told Reuters. “I think the worst is over but we cannot rest on our laurels.” Around 4.7 million of South Africa’s 43 million people were infected with HIV at the end of last year.

AIDS 2002 visa ‘fiasco’
Organisers of the XIV International AIDS Conference, to be held in Barcelona, Spain, from 7-12 July, say that participants from developing countries are being denied visas to enter Spain. The Spanish foreign ministry is insisting that delegates demonstrate adequate finances before being granted a visa, but with many delegates from the developing world attending the conference on scholarships the requirement is causing jitters. Organiser Joan Tallada says that unless the situation is resolved the biannual conference, which is expected to attract up to 15,000 delegates from around the world, will be a fiasco. “A world AIDS conference without the world’s developing countries is nothing more than nonsense,” Tallada said.

• Positive Living will carry a comprehensive range of reports from Barcelona in the September-October edition.

Zimbabwe: state of emergency
The government of Zimbabwe, led by African strongman Robert Mugabe, has declared a six-month state of emergency over the country’s worsening HIV/AIDS epidemic. The move will allow Zimbabwe to bypass patent laws to import generic HIV medications. More than 20 percent of Zimbabwe’s population is HIV-positive, with 2,500 AIDS-related deaths every week. —Reuters

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HIV futures 3

Vulnerabilities, caution, resilience

By JOHN RULE

Reading the Futures 3 report started my head swimming. Maybe because I was reading it at home and looked up into the goldfish tank in the corner of my flat and realised that I could be one of the nearly 60 percent of PLWHAs who describe pets as being a ‘very serious’ form of support – eight percent ahead of Doctors and twelve percent ahead of close friends!

The ‘swimming’ effect is a reaction to all those numbers – sitting and reading the Futures data can be heavy going. I had to wade through a lot of emotional reactions to what I read: after all, these numbers are about me, my friends, the people I work with, the people I work for.

Then I remembered John Willis’s talk at the NAPWA Conference last year in Melbourne about us being more than the sum of our numbers. Yes, they’re my numbers, they’re our numbers and they present us in a certain way; I need to make some sense of that, to see through the columns of numbers to the human lives behind them.

I sit and swim through Futures because there’s stuff here to be made sense of and because there are numbers here that we can use.

By ‘we’, I’m talking largely about PLWHA organisations and reflecting on the particular experience of my work with NAPWA. I’m hoping that making sense of all these numbers will help inform us and guide the way that service organisations and government respond to the needs of PLWHAs. I’m also reading all these figures, numbers and trying to translate those into a dynamic language – a language in which PLWHAs are active subjects and agents, not passive objects and recipients.

Vulnerabilities, caution and resilience are parts of that dynamic language.

I’ve tested these words out on people. Some people are happy with the ‘wellness’ framework but for some there is a ‘but’ … there is more to the story. Perhaps these words help tell the story.

We need to move away from the one dimensional PLWHA, we need to move beyond simple categorisations like ’15 percent not doing well and 85 percent doing well’ – these bland statements aren’t that helpful; we need to find descriptive language – wiping everything over with diversity and difference leaves no useful language.

That’s why I’m putting forward the trinity of vulnerabilities, caution and resilience.

Another problem: Futures emphasises the collective experience. We need language that works on two levels, with individuals and the collective: for example, vulnerabilities.

Futures has sometimes been criticised as an ‘unrepresentative’ survey, because it inevitably finds many of its respondents in those who are in some way already connected with HIV organisations and health services. Fair enough. However, it is the only national picture that is available to us and there is no doubt that it does provide some broad brush strokes to which we can attend and indeed provides plenty of fine detail.

I also think that the moment is right to work with Futures 3 in a different way. There’s familiarity and previous experience in working with material – for individuals and for organisations – a maturity.

Futures is tremendously valued by PLWHA organisations and service providers. A recent NAPWA study found it was the single most used relied-upon resource in program planning. With three reports available to us, the longer term trends are starting to become apparent.

I want to go back to the painting analogy.

The first broad brush stroke concerns health problems related to HIV. Nearly 70 percent of the respondents suffer low energy and fatigue; nearly 40 percent experience lipodystrophy; 30 percent experience weight loss; and 1 in 3 experience confusion or memory loss.

Although three-quarters agreed that antiretrovirals meant better prospects for PLWHAs, close to 90 percent say they experience difficulties taking them. 43.9 percent experience side effects like diarrhoea, nausea, fatigue and lipodystrophy.

Despite all the hype, 16.2 percent remain cautious about better prospects and antiretrovirals – they believe it’s still too early to tell. The report says that Doctors are less likely to be consulted before a treatment break than afterward, that everyone surveyed had visited a GP specialising in HIV or a HIV specialist in the last six months and that 46.9 percent had used an AIDS service organisation for treatment advice.

I look at that broad-brush stroke and it suggests to me that dealing with the disease of HIV is a relentless and demanding experience.

It concerns me greatly when I read figures that show over half the respondents had their HIV status disclosed to another person without their consent, and for over a quarter this had happened in the last two years.

When one-fifth say they plan only one day at a time and in the last six months almost one-third have taken prescribed medication for depression and over one-quarter for anxiety, I begin to get a clearer picture of the vulnerabilities experienced by PLWHAs.

These vulnerabilities are even clearer in figures related to relationships, where a quarter report not having sex at present and over half of the PLWHAs surveyed expressed fear of rejection upon disclosure of their status. 60.9 percent felt HIV had a negative effect on their sexual pleasure.

There are some figures which challenge the discussions about ‘strategic positioning’ going on in education circles around new treatments, viral load and unprotected or unsafe sex. Only 1 in 10 PLWHAs report confidence about unprotected sex because of new treatments and similarly low figures say that treatments make safe sex less important.

I see a picture emerge of a cautious group of people. And as I read on, I see a picture emerge of a resilient group of people.

We are resilient because of the difficulties we face around employment, where almost two-thirds of respondents report that they have stopped work at some time in the past for reasons related to having HIV (are you listening, Senator Vanstone?)

We are resilient in the face of financial hardship: 30 percent are living below the poverty line and more than half report difficulties in meeting the cost of daily living.

We remain resilient despite persistent stigmatisation and discrimination, reported or experienced in very startling percentages in accommodation, health services and something as basic as insurance.

I wouldn’t be doing my job if I didn’t recognise that there are a whole lot of different experiences and realities about living with HIV that different positive communities face. Mark Saunders and Jon Willis spoke at the HHARD Conference about some of the different patterns that emerge for Aboriginal and Torres Strait Islander people living with HIV when looking at the data from Futures 2 and 3. I understand that there will be a separate report for women and one, eventually, for the different states. This is essential and it’s an excellent process that has been developed in publishing following up reports and discussing them with the different groupings.

And at the risk of trying a very cheap catch all I will again propose that, despite our differences, the notions of vulnerabilities, caution and resilience could work across all groups.

John Rule is NAPWA’s HIV Living Policy Analyst.

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HIV futures 3

Back to the futures

The papers may be full of stories about the 2001 Census, but you may not have read much about our own census, the HIV Futures biennial survey of positive Australians. On this and in the preceding article we look at the findings.

People living with HIV/AIDS in Australia may be living longer and staying healthier than just a few years ago, but significant numbers of us experience discrimination and financial hardship, with one in three living below the poverty line.

This is the overwhelming message in HIV Futures 3: Positive Australians on Services, Health and Well-Being, released in May by the Melbourne-based Australian Research Centre in Sex, Health and Society. Based on a survey of 894 positive Australians from all states and territories, the report follows previous reports published in 1998 and 2000.

Almost 20 years into Australia’s HIV experience, the stigmatisation of positive people seems disturbingly alive and well – more than half of respondents reported experiencing HIV-related discrimination. “We seem to be no closer to a sound public awareness of the nature of this disease so that we can deal fairly with those affected by it,” says Dr Jeffrey Grierson, the principal author of the report.

The most common source of discriminatory treatment was the medical profession, with 37 percent of respondents reporting discriminatory treatment at some time, 18 percent in the last two years. Examples of less-favourable medical treatment included breaches of confidentiality, being treated last, additional infection control procedures, or refusal of treatment altogether. Discrimination was also reported in relation to accommodation (11 percent, 4.5 percent in the last two years) and insurance (22 percent, 15 percent in the last two years).

Nearly one-fifth of respondents live in fear of violence.

The survey findings highlight the financial difficulties that many people with HIV/AIDS face. Nearly half of Australia’s PLWHAs are dependent on welfare, with 31 percent living below the poverty line. About a quarter of respondents have a partner with whom they share financial resources. Among this group, only 7.5 percent are living in poverty, a figure which suggests that a substantial proportion of PLWHAs are protected from financial hardship by their partners.

More than half of respondents have difficulty meeting their general living expenses such as clothing, housing and transport. 51.6 percent say they have difficulty paying for food.

The great majority of respondents – more than 70 percent – are currently taking antiretroviral therapy, with nearly 90 percent having taken it at some time. Despite falling deaths and improving health for many, “the experience of antiretroviral treatments is increasingly one of disparity,” the researchers say, with “an increasingly large number for whom treatments are failing or causing health difficulties.”

Copies of the report are available from the Australian Research Centre in Sex, Health and Society at LaTrobe University in Melbourne, or available online from www.latrobe.edu.au/arcshs

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Anatomy of the Body Positive

Futures 3 surveyed 894 Australian people living with HIV/AIDS. This diagram summarises a few key findings from the report. Click on the picture for a larger PDF version. (428 KB)

Surveys are useful, but be wary

by Brent Allan

There are probably few HIV positive people who have not filled in a survey questionnaire, sat in on a focus group or been interviewed for some sort of study or other. But do you some-times wonder – to what end?

We are lucky in Australia: there is little likelihood that some uninformed and naïve researcher or, worse yet, some unscrupulous research body would be allowed to get away with research that is designed to stigmatise or demonise HIV positive people.

Most research done in Australia – certainly that from reputable research institutions – requires ethics approval before any research can be conducted. Ethics approval varies between institutions, but it is there to ensure that no harm is done to any individual or group of people. It also dictates how the research is to be conducted and ensures that the results can be viewed with the highest degree of accuracy and validity.

This is important since research findings are often used to determine how public money in health and social services is allocated. In turn, this affects the range and quality of services that you can expect from your AIDS Council right up to your local public hospital.

Australia’s partnership between research and services relies upon and is only effective as long as there is participation by HIV positive people. At times it seems as if HIV positive people are continuously being asked to expose their private lives, the workings of their bodies and their innermost feelings and emotions. Some may even go so far as to say that this continued poking and prodding of the body positive borders upon the exploitative and is unnecessarily intrusive.

There is a degree of trust that is expected from HIV positive people when they open up their lives to a stranger; even more so when there is no person at all — just a pen and seemingly endless tick-a-boxes. The continued participation, goodwill and trust of HIV positive people are amongst the greatest hallmarks of the success of the Australian response to HIV/AIDS.

The release of Futures 3 gives us an excellent opportunity to reflect on our participation in research. The three HIV Futures reports have been integral in Australia’s HIV/AIDS response. This research has provided the much-needed ‘evidence’ to galvanise support from politicians, funding bodies and indeed the general public to the range of issues affecting people living with HIV/AIDS. The findings provide a unique window into the private lives, struggles and successes of PLWHAs, and the many common themes amongst communities, providing important opportunities for service agencies to tailor programs to individuals as well as for entire communities.

Although it may seem insignificant, a duty, or just a nuisance, our participation in research is important and affects us all. The information that flows from all those tick-a-boxes can be used to improve our lives through more effective services, but be careful: it can also be used to attack us. While we’re fortunate to have a research community that is bound by ethics and will respond vigorously where their findings are misused, the next time a stranger comes up to you with a clipboard it’s fair enough to ask how the information you volunteer will be used.

Brent Allan is ACON’s Director of Community Health and a Director and Education Portfolio Convener for NAPWA. The opinions expressed here are personal and may not reflect the official position of ACON or NAPWA.

Letters

Smoke and mirrors
Regarding Jim Arachne’s commentary on Vitamin E and hepatitis (PL May-June 2002): Rather than comparing results from one arm of one trial against one arm of another trial, what I’d like to see is a comparison of results for control group arm versus the active drug arm, within each trial. Anything else is “smoke and mirrors”.

Jim surmises “. . . this is an interesting result. Compared to medical drugs, vitamin E is cheap and virtually free of side effects.” To most readers this would suggest that vitamin E is a reasonably effective therapy for alleviating HBV liver damage and/or HBV clearance.

Perhaps there is evidence in the actual published papers, but Jim certainly hasn’t provided evidence within his article to make such a suggestion. Who knows if his summation is factual?

Please “raise the bar” in regard to your reporting of scientific trials.

Paul Harvey
Hepatitis C Council of NSW
29 May

• Letters to Positive Living are welcome. Preference will be given to letters under 200 words, and may be edited for clarity, length, or legal reasons at the discretion of the editor.

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Australian survivor

What does it take to make a long-term survivor? More of us are living longer with HIV, but are we living well or are we just surviving from day to day? MARK TIETJEN, GABE McCARTHY and LANCE FEENEY discuss the big issues.

Scared out of our wits

Lance Feeney

There’s no mystical secret to living long-term with HIV: luck, genetics, stubbornness, support of family and friends and, importantly, flexibility and resilience are certainly some of the characteristics which have helped me.

These skills – some innate, some hard-earned – are far more responsible for our wellness than many of us admit.

Cast your mind back to the eighties and early nineties when so many of us were dying. Attending three or four funerals in a week. The obituary section of the Star sometimes ran to a page. The fear amongst most of us was palpable.

Scared out of their wits, many cocooned themselves – severely restricted their sexual, social and recreational drug activity in a desperate attempt to stay healthy. They hoped to live long enough for an interventionist HIV therapy, which would save them from an all-too-familiar ugly death. Others adopted the opposite strategy, throwing caution to the wind in a head-spinning cycle of social and sexual hedonism.

During this period prior to combination therapy, many of us made extraordinary and desperate attempts to stay well. We tried everything and anything. Interferon and AZT monotherapy were introduced to initial excitement, then disappointment.

Many, however, put off by “poisonous allopathic therapies peddled by doctors and drug companies,” hung their hopes for survival on the utterances of well-meaning complementary therapists. Positive people resorted to blending up strange lumpy Asiatic vegetables and squirting the liquid up their bottoms. They grew smelly black Japanese mushrooms in bottles, which were fed daily, given personal names like Blanche and eventually devoured.

Such was the fear. Such was the desperation.

That’s changed. People are living longer; deaths have declined. Are we living well? Yes, the treatments have a downside. But it’s a helluva lot better than where we were.

A community built on disease alone seems to have limited appeal once “wellness” – however we define it – emerges. As people with HIV rebuild their lives in the communities they came from, the test for those communities becomes one of how ready or willing they are to re-embrace them.

We’re still finding out.

The majority of positive Australians are taking their pills – or not – and getting on with their lives as best they can. We may not be all that visible but we’re out there. We may not always be totally well, but mostly we’re not sick.

We have jobs, careers, mortgages, lovers and friends. We lead lives of reassuringly mundane normality.

The person training next to you in the gym, standing next to you in the book store and, if you’re lucky, cruising you from across the bar. Their HIV status is integrated into who they are: sometimes more, often less important than other aspects of their lives. But always there.

One day, after with difficulty, guts, fear, hanging on, over-it-itis, hating it, regaining strength and well-being, you realise HIV has been reprioritised to somewhere between earning money and keeping your boyfriend happy . . . and you realise you’re sort of . . . managing it.

There are days when it’s too high priority to let you do much in the way of taking charge, but there are fewer of them. It’s you – not HIV – who’s the dominant partner. This is not to say that it’s an easy ride. But long before the academics came up with ‘re-engagement’ and ‘reconstruction’, you were doing both, although you wouldn’t have used such dickhead terms for it.

You’re obviously not going to die soon and you don’t really give a rat’s about treatments failure: you’ll cross that bridge when you come to it. You’re sort of there. It might not look like much but it’s home.

But some of us haven’t got home yet.

For some, HIV/AIDS remains an overwhelming experience, maybe along with psychiatric illness, social dysfunction, drugs or alcohol. We refer to this group as “clients with complex needs” and indeed they are. However our expertise in identifying them as such is not matched by an ability to do much about resolving the complexity.

This is not to say that they aren’t intelligent, articulate, attractive men and women. Many of my clients at the PLC are all of the above. However for some a diagnosis of HIV when they were in their late teens or early twenties significantly stifled their educational, professional, and social development. Many were left stigmatised and isolated, without social support mechanisms. They dropped out of university, college or the work force, went on the DSP, further reinforcing their social isolation, financial and social insecurity, and reducing their personal options even further. For many of them PLWHA is less appropriate maybe than PWSAO – People With Stuff-All Options.

There’s a whole subculture of youngish poz gay men in Sydney whose lives track from day to day, hour to hour. They’ve forgotten what it’s like to have a pay packet; they haven’t worked with any consistency in maybe a decade, some longer. They have survival skills and they may get heaps of validation in a backroom at 5am, but no employment skills, nor the self-respect which comes from being socially networked, from career or a regular working environment.

If beliefs and attitudes create action, this group has lost nearly all incentive to change. The challenge is just too difficult and confronting. To reconstruct or re-engage is too frightening to contemplate.

They are terrified of losing the pension. “If I lose my DSP,” one client told me, “I’ll be back to where I was when I was 18: living in some $100/week granny flat in Woop-Woop. How culturally appropriate is that?”

Most of them have worked out that they’re not about to die. Many face real fears about the endless empty horizon, getting older, just going on. If you’re thirty, on the DSP, living in public housing in the inner city, doing a bit of sex work or small-time drug dealing, you’re hanging in there. But what happens at forty? Or fifty?

To stare this prospect in the face and be carried powerlessly towards it isn’t easy. And lots of them are trying not to look.

However well-intentioned our motivation was in wrapping them up in DSP disempowerment, we did. No matter how much we think we’re doing the right thing by offering them ‘reconstruction’, we need to accept that those who can, mostly have, and that a lot of those who haven’t, can’t. At least not easily.

If we’re going to make ‘community’ real – and here I refer to gay and lesbian community specifically – we’re going to have to go there. We have to find much more meaningful and creative ways to assist people – to work with them – if any real improvement in their quality of life is to be achieved. As they age, and the employment market becomes ever more demanding, how will we give them a chance to get out of poverty, co-dependence and hopelessness?

This is the real challenge for service providers. It’s certainly a challenge for the communities within which they’re placed. I just hope we live long enough to see the fruits of our collective labours — given that some of us seem to have lived a helluva long time already, it may be that time’s up.

Lance Feeney is the manager of the Sydney Positive Living Centre.

My albatross

Gabe McCarthy

Thirteen years of living with HIV has presented some unique challenges and I’ve struggled at times both physically and emotionally.

HIV has stopped being such a scary part of my life, but it can still be a real drag. One of the things I really notice is that HIV adds a layer of complexity that I could quite happily do without. Emotionally, HIV consumes a lot of my energy, and I find that I’m not as resilient when it comes to dealing with the other shit that life can throw at me.

I was talking to another poz person, diagnosed eight years ago. “I’m only 29,” he said, “but I feel old”. Well, I’m only 36, but I feel ancient!

At 23, when I was diagnosed, I was given about five years to live — a bit of a mind-fuck. I spent most of these first few years waiting for AIDS to happen. As I approached the five-year mark I realised that nothing was happening and just hanging around waiting wasn’t really working for me anymore. So I left Sydney and ended up in Toowoomba.

Next, I had to learn how to get on with life. I spent a lot of time with a counsellor, developing ‘future orientation’ in my life. The most effective strategy was to decide that I was going to be a long-term non-progressor. This worked really effectively for me … until I progressed.

I didn’t start treatments until I really needed to. I’d been living in self-imposed isolation from all things virussy, so I’d completely missed the protease moment. Starting treatments was almost as much of a mind-fuck as diagnosis.

It was important for me to be as involved as possible in treatments decisions. Unfortunately the only prescriber in Toowoomba didn’t really understand this. After many attempts to make the doctor/patient relationship work for me I began travelling to my old HIV GP in Brisbane. This was a good move.

The PR about treatments promotes them as improving people’s health so that people can return to work. Generally somewhere amongst the hype is a condescending reference to ‘not forgetting those that aren’t doing well’.

My experience of treatments has been one of debilitating side effects. I stopped work due to side effects. I’ve changed combinations due to side effects. Thanks to lipo I hate my body; high cholesterol and diabetes mean there’s absolutely nothing I can eat in a 7-11.

Over the last five years my health has deteriorated due to side effects and perhaps also due to having AIDS. At first, very focused on my health, I was happy to put my life ‘on hold’ until my health improved.

Five years on, big chunks of my life are still ‘on hold’.

I have days where it is hard to get out of bed. I have days where I’m juggling finances, working out what I can manage without this fortnight. I have days where I can’t do what I want to do.

I’m a bit scared that this might be what the rest of my life is going to be like – and I’m not sure I want to be making compromises forever.

Moving to Toowoomba was really useful for me. Being isolated from the HIV community was really good for me. I made HIV as small a part of my life as possible – leaving me with lots of time for other things, like a job I loved and developing friendships not based on my HIV status.

I learned that HIV negative people make great friends, providing HIV-free spaces in my life and some wonderful insights.

I have a sense of time in my life that I didn’t have before. I’m renovating my house – sanding, painting, gapping and doing all sorts of things that have nothing to do with HIV. I didn’t realise what a difference homeownership would make; it’s amazing what having my own space feels like.

Living in Brisbane is good too. Life on a low income is a lot easier; the pace of life is slower – which suits me.

I have a great doctor who I can trust – I’ve been seeing him for most of nine years. Because I trust him, I don’t have to put lots of energy into keeping up to speed on treatments – which means more space in my life for fun.

I’ve been getting some strange results lately, but I’ve found that I just don’t need to put energy into worrying about them. My doctor worries, why should I have to?

From being very anti-treatments I have shifted significantly – after all I’m still alive to complain about them! I want to keep on living and I’m prepared even to go back on treatments that I’ve had worse side effects from if they’ll keep me going until something better comes along. I’m planning on being here for the cure. I don’t know how I would cope if I didn’t have that mindset.

I was very hesitant to get involved with the HIV sector when I became unwell. Somehow, through accessing services, I got sucked back in to the vortex.

What I’ve found is a place where I can utilise my full range of skills, where I receive positive feedback, where I get a sense of purpose and achievement, and – most importantly – where I can phone in sick easily. Since I’ve been involved with QPP I’ve stopped taking anti-depressants (this might also be due to running into people who say ‘I thought you were dead’.)

I approach life now without a sense that I have to do it all in a hurry. It doesn’t matter if a project takes a couple of years to complete; I’ll likely be around to finish it off.

I guess I’ve developed a fairly pragmatic approach to life. If it’s not HIV, then something else will be causing a drama, guaranteed. I think that finding myself still alive eight years past my use-by date gives me a sense of happiness that helps me to deal with all of life’s dramas.

I am living with my albatross. This is how I feel about life with HIV. The challenge for anyone with HIV is to learn how to live with his or her own albatross. I accept the negatives and keep focussed on the positives in order to make friends with my albatross.

Gabe McCarthy is the Statewide Convenor of Queensland Positive People.

Watching the paint on the walls fade

Mark Tietjen

I first tested positive in 1986, when I was living my native New Zealand, was at a crossroads in my life and had decided to travel the world again as I had in my early twenties.

The HIV antibody test had been around for about a year and the general feeling at that time was that it was not a good idea to be tested as the only benefit was that you would learn that you were going to die. There was no treatment, no monitoring and safe sex was not quite universal at that stage – there was still some debate about transmission, and we felt that in New Zealand we had some advantage in being behind the rest of the world.

Even so, in those days we chose our sexual partners a lot on how healthy they looked; I remember that one rule of thumb was to go for the slightly plumper look, because we used to say that ‘a fat queen was a healthy queen’.

My best friend and flatmate was David, a GP. He suggested that as I was thinking of travelling, maybe I should consider an HIV test. He wrote me the referral and said it was entirely up to me – no concept of pre- or post-test counselling! Away I went and had the test.

When I told him, he said, “you’re brave – I wouldn’t have.”

I was not surprised by the result, after all I was a sexually active gay man – still am – and had travelled a lot in the late seventies and early eighties. I proceeded to tell my close friends and was very surprised when one of the first people I told, a lawyer, was shocked that I was telling him and advised me to keep it to myself.

My good friend Dr David waited a few years until he started to become unwell before he confirmed that he was positive. He died in December 1990.

For me the most significant effect of being positive was to totally drop any quest for career development or advancement. This has caused me many moments of reflection, particularly when interacting with friends and contemporaries moving on with their lives, developing their careers, and often becoming quite wealthy as well.

What was the point when you basically had a death sentence hanging over your head? In my early years at the Bobby Goldsmith Foundation, I would often see clients, particularly those with failing health, and wonder how long before I would have to stop work, go on the pension, and experience severe illness? Would I be able to euthenase as so many did then?

I never have those thoughts now. But I still hold back on career advancement, staying where it’s safe, always with the thought in the back of my head of avoiding the stress of change. Some that is probably my character, but it is definitely influenced by HIV.

Last month was the eleventh anniversary of when I started working for BGF, which makes me a bit of a dinosaur in the sector today. I’m a relic of ‘the middle years’ of the epidemic, when many people were employed on their abilities, interest and concern for the HIV/AIDS sector; appropriate qualifications were not necessarily a pre-requisite for a job. After all, it was quite a new area to work in and no one quite knew what qualifications were required for many jobs.

When I first started at BGF, we had two staff members: myself and an administrator. We now have 27 staff plus a host of volunteers.

BGF, like many HIV-specific services, was built on a model of providing high levels of support for a short period of time, for people with a terminal illness. The end point has changed now and BGF, like many organisations, is grappling with ways to continue to provide support at appropriate levels without disenfranchising those clients who have become accustomed to high levels of support.

BGF has about 1800 active clients and last year we provided direct financial assistance to nearly 1000 people across NSW. We probably have more direct contact with PLWHAs than any other organisation. We have tried to respond to the changing needs of our clients within the limited resources available. Historically the ‘limited resource’ was simply the amount of time I had to deal with everything. Now we offer a range of programs: welfare support, financial counselling, employment and occupational support, and supported housing.

Many core issues for clients have remained largely unchanged. The main one is boredom, or lack of meaningful occupation. Once a client was linked into social security, housing, BGF and other support agencies, they would often be left to their own devices. They would be on the pension or sickness allowance, have somewhere to live and be receiving various forms of assistance, but they would be sitting at home staring at the walls, gradually going crazy.

Unable to go out and entertain themselves for lack of money, they would gradually withdraw. They’d stop socialising with friends, who in turn would stop inviting them out, and they’d become more and more isolated.

This situation is, if anything, worse today, particularly with people living longer and all the uncertainties associated with that. Many are simply exhausted from living in poverty, isolation, and uncertainty.

This is often exacerbated by people living in such an environment for too long, disenfranchised, and with what could be regarded as an unhealthy reliance on support services. Addictions and mental health problems often add further complexities to people’s lives.

People like this are referred to as ‘clients with complex needs’. They tend to dominate discussion in the sector at the moment to the point where people who are doing reasonably well or have lower levels of need may be sidelined.

There is a lot of pressure on clients to experience improving health and maybe go back to work. This may be achievable for some but for many it is not so simple.

Years ago, people who had a range of complex needs would slowly become unwell. As they did, they generally didn’t have the energy to continue being difficult to support. You would often see the change in attitudes and behaviour, and as this process occurred, most became easier to support.

Today that decline, and often welcome respite for support workers – and for the clients themselves – has been replaced by having to think about the future, with all the uncertainty that involves, and the exhaustion of living long-term with HIV, peer pressure, and living in poverty from week to week to week.

To add to this we now have to deal with significant changes in government thinking. The federal welfare reforms have started. The NSW Department of Housing is restructuring and planning significant changes to the Special Assistance [rent] Subsidy, which was established as a short-term housing solution for people with advanced HIV who were not expected to rely on it for long.

We have to find ways to help people to get some meaning back in their lives – for some this may mean returning to work; for others it will be finding something else to prevent them sitting at home watching the paint on the walls fade.

In this climate BGF is experiencing unprecedented levels of demand while at the same time having to work within significant budgetary constraints, all of which leads to further disenchantment and anxiety amongst clients and added pressure on support workers.

Mark Tietjen is Client Services Manager for the Bobby Goldsmith Foundation which provides direct financial support and other services to people living with HIV/AIDS in NSW.

Adapted from presentations given at ‘Surviving and Thriving: Living Well with HIV/AIDS’, a joint ACON/NAPWA roundtable held in Sydney on 23 April. Unedited versions of these and other papers presented to the meeting will be published on the NAPWA website, www.napwa.org.au

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Illness: a journal of personal experience

Reviewed by Sean Slavin

In her polemic essay Illness as Metaphor, Susan Sontag began an argument ‘against interpretation’ of illness. On the first page she says, “My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking.”

What Sontag was trying to get away from, at a time when she herself was fighting cancer, was the tendency to draw moral conclusions about diseases and the people who have them. She followed up several years later with another essay, AIDS and its Metaphors. By then she acknowledged that “of course, one cannot think without metaphors. But that does not mean there are some metaphors we might well abstain from or try to retire.”

She had in mind, amongst other things, the idea that disease is a punishment.

Sontag has been much criticised for both essays. In perhaps the most withering attack DA Miller, in his essay Sontag’s Urbanity, accused her of homophobia! Sontag’s essays are polemical and therefore likely to raise ire; they are intended to do so. Beneath the irritating surface, however, there is a serious argument worth reflecting on.

Illness: a journal of personal experience is a new journal, published in the past year, with the mission “to give illness a voice by providing a creative space for those who experience illness and those who care for sick loved ones.”

The editorial board are a mixture of clinicians and sociologists. As its name suggests, Illness is not so much a literary foray for its editors and contributors, but an attempt to record, through poetry, stories and visual art, the experience of what Sontag calls ‘the night side of life’.

These experiences are deeply personal and I hesitate to provide any kind of criticism of them as literature, except to say that there are many moments of literary merit. These include a number of poems and longer, reflective pieces of several pages. I hesitate to call these stories, as there is an almost universal lack of interest in narrative. Also, disappointingly, there are no essays.

What seems more interesting is to read this journal as a diary from the ‘night side’. At first glance, it seems an exercise in creating stories and metaphors in a way that Sontag specifically warns against. For her, cancer or AIDS are merely cells or chains of RNA twisting about to form what we call a virus. They are things to be confronted coolly and rationally – with science and fortitude. To imagine cancer is the result of ‘unprocessed anger’ or other obscure neuroses is to invite the pernicious belief put about by the new age that we deserve the illnesses we get.

But it also seems normal (and rational) for anyone diagnosed with a serious illness to ask, ‘why me?’

It also seems normal to fish around in our mixed bags of meaning and belief systems for an explanation. The important point about metaphor is to create it oneself rather than allowing others, be they new-agers or clinicians, to write the stories on our behalf.

In this sense I think the contributors to Illness and Susan Sontag are engaged in remarkably similar practices. Wounded by cancer, Sontag rages and spits and produces an essay of dazzling—if uncomfortable—brilliance. The point of her essay is to rewrite herself, through narrative, into a different way of being. The stories, poems and pictures in Illness are sadder, more haunted by loss, and often ponderous. Many of them work as reflective vignettes but in the end I wanted to be lead somewhere more positive, to be taken away, finally, from the night side.

Subscriptions to Illness, published twice yearly, are $16. www.illnessjournal.com

Sean Slavin is a Sydney-based writer and researcher.

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Complementary therapies • Jim Arachne

Bless you!

Winter is upon us again and with cold weather and grey skies come the usual sniffles and sneezes. An ideal time to look at the kinds of complementary and alternative therapies for dealing with colds and ’flu.

Probably the first thing most people think of at this time of year is vitamin C.

A review of 21 placebo-controlled studies of vitamin C found that it reduced the duration and severity of colds by an average of 23 percent (Scandinavian Journal of Infectious Diseases, 1994; 26(1):1-6). For prevention of colds, long-term doses of more than one gram per day are needed – smaller doses won’t do the trick. Several studies have shown an increasing benefit as the dose is increased, at least up to six grams/ day (Journal of Clinical Epidemiology, Oct 1996; 49(10):1079-84).

There are lots of studies showing no benefit for using vitamin C in the treatment of colds, too. But most of these used low dose vitamin C, as low as 25mg to 50mg/day (Journal of the American College of Nutrition Apr 95; 14(2):116-23).

The most significant side effect of high doses of vitamin C is diarrhoea, which occurs if you take more than you can absorb. People with very poor digestive health usually find they can only tolerate lower doses.

Zinc is likely to be even more effective against common cold viruses than vitamin C. For colds, zinc should come into direct contact with the mucous membranes in the throat and/or nose. This means using zinc lozenges or sprays. Zinc supplements that you swallow won’t shorten a cold.

One double-blind placebo-controlled trial of a zinc spray found that the average time to full recovery was 2.3 days for people using zinc, versus 9.0 days in the placebo group (Ear Nose and Throat Journal, 2000; 79:778–781).

For both zinc and vitamin C, the earlier you start the better the results are likely to be.

Not all zinc products are the same. Zinc mixed with citric acid in a lozenge doesn’t work; however, zinc mixed with glycine does. High amounts of the sweeteners mannitol and sorbitol can also stop zinc from working (J Pharm Sci. Feb 92; 81(2): 128-30).

High amounts of zinc over a prolonged period can have an immune suppressant effect – exactly what you don’t want! I’d suggest only using higher doses until you’re over the cold.

After vitamin C, the American herb Echinacea purpurea is probably the best known natural cold remedy.

A recent double-blind, placebo-controlled trial using the above ground parts of Echinacea purpurea found that it reduced the median time of illness to six days, compared to nine days in the placebo group (Arzneimittelforschung 2001; 51(7):563-8).

Another herb that can reduce recovery time from colds is Andrographis. It has been traditionally used in India and China for conditions like fevers, gastrointestinal and upper respiratory tract infections, herpes and, especially, sore throats.

One of the recent trials that started Western herbalists using this herb was a randomised double-blind study among people who had already developed colds, completed at the University of Chile. For the group using Andrographis (1200 mg/day) improvement was noticed after two days and by four days a “significant decrease in the intensity of all symptoms was observed for the Andrographis group” (Phytomedicine, Oct 99; 6(4):217-23).

Aspirin and paracetamol have never been shown by controlled research to reduce the course of a cold or flu. Recently, researchers at the School of Pharmacy in the University of Maryland, Baltimore, USA have shown that these remedies may actually prolong ’flu symptoms.

After observing 54 volunteers, who developed typical ’flu symptoms when they were deliberately infected with influenza A virus, researchers concluded that “there was a striking correlation between antipyretic therapy [aspirin or paracetamol] and duration of illness . . . analysis suggested that antipyretic therapy prolonged illness in subjects infected with influenza A.” (Pharmacotherapy, Dec 2000; 20(12):1417-22).

Colds and ’flu are an unfortunate reality at this time of year, and even with the best of luck most of us have to suffer through them from time to time, and we have to rely on our immune systems to get over them. Lots of rest, plenty of liquids, and the complementary therapies described above can provide the help your immune system needs to get you back on your feet as quickly as possible.

Jim Arachne is the Complementary Therapy Treatment Officer for the Victorian AIDS Council.

• Should people with HIV/AIDS have a ’flu shot? Read Dr Nick’s response in ‘What’s Your Problem’.

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Treatment briefs

Special access for atazanavir
Bristol-Myers Squibb have announced that atazanavir, a new protease inhibitor which can be taken once daily and which has a reduced tendency to raise cholesterol and triglyceride levels, is now available under the Special Access Scheme. Eligibility for the scheme is limited to people who are unable to construct a viable antiviral regimen with existing drugs. In May, BMS lodged an application for European marketing approval for atazanavir, and plans to seek US approval before the end of this year.

Lipo risk may be linked to race
A Korean study has found that the prevalence of abnormal fat distribution may be significantly lower in Asian patients, suggesting that race may be an important factor in the risk of lipodystrophy. The study, published in the Journal of Infection [2002;44:33-38], examined 99 HIV-positive and 57 HIV-negative patients in Korea, finding only two patients on HAART had signs of lipodystrophy. Although further research is needed, the study authors conclude that lipo appears to be much rarer in Asian patients. — Reuters Health

Go-Cats
The recreational drug methamphetamine dramatically increases the ability of feline immunodeficiency virus (FIV, a virus related to HIV which infects cats) to reproduce in brain cells. If the findings are found to also apply in humans, they may help explain why HIV disease appears to progress more rapidly in drug users. Researchers at the Ohio State University, performing test-tube studies on feline brain cells to determine the means by which FIV causes dementia, discovered that adding meth increased viral reproduction by a factor of ten. The researchers are now doing follow-up studies to determine whether meth causes progression of FIV in cats. — UPI

T-20 production begins . . . at a price
Pharmaceutical companies Roche and Trimeris have officially opened the production plant in Boulder, Colorado, which will produce commercial quantities of T-20 (enfuvirtide), the companies’ experimental fusion inhibitor. The manufacturers have not yet announced a price for T-20, which the company hopes will gain US approval within months. “Clearly we need to make the drug available at a price that justifies the cost of manufacturing it,” Roche’s Dr David Reddy told the Denver Post.

PI link to sexual dysfunction
Researchers in Boston have suggested a link exists between male sexual dysfunction and protease inhibitors. In a study published in the Journal of AIDS (2002; 30: 27-32), researchers examined the electronic medical records of 254 male patients who reported sexual dysfunction between 1993-98. Although many patients had other conditions associated with sexual dysfunction, including depression, high blood pressure, alcoholism and diabetes, the researchers found that even when these factors were allowed for, a statistical link existed between PI use — especially ritonavir — and sexual problems. “The results of this study support previous observations that PIs may interfere with normal sexual function in men,” the researchers conclude.

Manganese blocks HIV
Researchers in the US have discovered that increased amounts of manganese within cells can halt HIV replication. Studying a special strain of yeast, the team discovered that higher than normal levels of manganese dramatically lowered the activity of the enzyme reverse transcriptase. “These results really point to a never-before-proposed way to try to stop HIV in its tracks,” says Johns Hopkins University’s Jef Boeke. Manganese is an essential trace element involved in the breakdown of fats and proteins.

Note: there is no evidence that dietary manganese affects HIV replication.

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