December 1st, 2009
1. Get educated – then share the knowledge
There are many ways to learn about sexual health and wellbeing. You can bring yourself up to speed with information about HIV/AIDS here (contains links to quizzes, resources, forums and advice sheets). Or you can test your knowledge with Avert’s Quizzes (on sex, pregnancy, HIV/AIDS, contraception). Teen site Scarleteen includes loads of frank and helpful information, as does Go Ask Alice!, Kinsey Confidential and Cory Silverberg at About.com’s Sexuality section.
You can also make use of Planned Parenthood’s toolkits and resources, while All About My Vagina explains how anyone can become a sex educator (with links to resource materials).
2. Bust those myths!
Despite education and advice, many people are still confused about HIV and AIDS. You might want to check out some mythbusting courtesy of About.com; questions, answers and papers about areas of confusion about AIDS from The Body while New Scientist lists the top 5 myths about HIV.
3. Don’t just focus on sex
HIV can be transmitted through sexual contact, but it is also passed on from mother to baby through breast milk, through blood transfusion (if infected blood is transfused – this is less common nowadays), by sharing needles, needlestick injury, or unsterilized/unhygienic needles or other sharps used routinely in healthcare. Further information on transmission can be found here. The problem with messaging around sex is we tend to focus on confusing or mixed messages, or advice that’s difficult to put into practice (for example asking people to be faithful in countries with massive gender inequalities). Instructing people they must abstain without discussing the contexts for why abstinence may happen, considering delay messages or thinking about when abstinence is not possible or wanted does not empower communities. It certainly does not protect those who are subject to sexual abuse and rape. Equally dangerous is instructing against condom use. Or telling people not to have sex, to be faithful or always use a condom without giving them any life skills to put these choices into action. Simplistic approaches that assume all people need is instructions to have HIV tests or simply ‘use a condom’ without addressing their wider social, economic, healthcare or personal needs is unhelpful and frequently counterproductive. Discussing sex only in the context of intercourse (vaginal or anal) leaves out wider contexts around relationships, desire, and coercion. We need to focus on clear messaging around sexual transmission of HIV (with actionable solutions and life skills offered), but not forget there are other means of getting the virus. This is of particular concern given a recent study from Swaziland that suggests 1:5 babies are infected with HIV through dirty needles or other clinical equipment.
4. Challenge and tackle inequalities
HIV is more prevalent in countries or communities where there are high levels of gender inequality, restricted access to healthcare, poverty, discrimination over sexuality (including transsexuality), and high levels of illiteracy. Challenging transphobia, homophobia, gender inequality, and discrimination against male, female and trans sex workers can help – for example in the views you hear from other people (particularly those working in health and social care or law enforcement), biased media coverage, or discriminatory practices expressed by organisations. You can also support campaigns that address poverty and literacy along with wider access to healthcare. You might even decide to become an activist – here’s an example toolkit for just this purpose.
5. Volunteer and/or fundraise
There are many ways of getting involved in tackling HIV, inequalities and poverty. You might want to volunteer on a sexual health helpline, or help out at an HIV/reproductive health clinic – on reception, as a health advisor/advocate, or interpreter (either using signing or different languages). Or you could always donate toys or magazines to clinics.
Unwanted clothing, shoes, blankets, toys can be donated to charities supporting those affected by HIV (particularly orphanages worldwide and clinics supporting the homeless, refugees or those fleeing domestic abuse).
You could give of your time locally – for example seeing if your local health or educational authority needs any support (which may include administrative duties that free up healthcare providers to see patients). You might want to prepare nutritious meals for people living with HIV, or if you’re currently breastfeeding you may want to donate some of your milk to feed babies whose mothers are HIV positive. Not all mothers have the option of donated milk or formula, more information for them can be found here.
Spare cash? Well, the recession’s still on, but as the saying goes ‘every little helps’. Financial donations can be made nationally and internationally. If you do wish to donate I’m always happy to recommend trustworthy charities and healthcare providers working to treat and prevent HIV (and other health issues). The Terrence Higgins Trust are always worth supporting, or you might want to help the Jabulani Foundation whose innovative approach to healthcare was recently reported in The Lancet (sadly not open access).
You can save your pennies in a jar, or raise money through car boot or jumble sales, or even sell stuff on ebay and put your profits to a good cause.
Donating materials can also help – old computers, digital cameras, access to educational materials are always welcome in resource poor communities. Offering to help with fundraising (including creating advertising, designing and maintaining websites) is also welcome. Here’s an example of what one charity needs. Search on the web to find more you could contribute to.
Maybe you’re not able to contribute cash but have other skills you might share? Gardening, cooking, sewing/needlework, knitting or craft can be applied to help those affected by HIV/AIDS, raise funds, teach new skills, or generally raise awareness. Knitted items (hats, booties and baby clothing) are always welcomed by orphanages – although don’t forget clothing for toddlers and older kids (particularly shoes, kids do get through a lot of shoes!). You can donate your children’s unwanted items, with the added opportunity of raising their awareness about HIV.
Maybe you’re a drama buff, artist, musician or film maker – in which case those talents can be used to help people find new ways to share messages around HIV/AIDS, safer sex, communication skills, and desire.
If you’re good with words or numbers then why not volunteer to help people who might be struggling with HIV alongside other disadvantages related to literacy/numeracy. Help may well be appreciated with filling in forms, applying for benefits, balancing budgets, or following medical advice.
6. Target problematic practices
There are well meaning campaigns that promote abstinence only as a response to HIV. While it is appropriate to recommend delaying sex until someone is ready (and has sorted contraception/condom use), many abstinence campaigns focus on simply telling people not to have sex – with no additional information about relationships, pleasure, confidence, or negotiating skills. In particular suggesting adults abstain from sex until marriage without any additional sex education, and recommending this approach in countries/communities with major gender inequalities, does little to reduce the spread of HIV. For a balanced view about abstinence based educational approaches see Avert’s review, plus this systematic review from the Cochrane Collaboration indicating abstinence only approaches are not effective. Speak out against those who promote HIV programmes that are only focused on abstinence because it doesn’t reduce the prevalence of HIV.
Linked to some abstinence campaigns is anti-condom propaganda, promoted by some faith based organisations, governments and NGOs. This includes misinformation such as ‘condoms don’t work’, which is untrue. Of course no barrier method is 100% effective, if used correctly then condoms are 80-97% effective in preventing HIV transmission. Other claims include condoms usually break – again untrue if used correctly (in such cases condoms are 98% effective). Or that there are minute holes in condoms that the HIV virus is small enough to pass through. This is false. Condoms are a barrier method and the HIV virus cannot pass through latex or polyurethane condoms. More information about condoms and how to use them can be found courtesy of Planned Parenthood.
Here’s how to use the male condom
And the female condom
Use this awareness of what condoms do and how they are an effective method of preventing HIV transmission, and support educational campaigns that not only distribute condoms but also give people the life skills to know how to use them correctly and negotiate using them with a partner.
Remember, though, that just repeating ‘always use a condom’ mantra, handing out condoms or expecting people just to use condoms without addressing their individual needs is unlikely to be effective. Indeed where people are facing stigma, inequalities and violence handing them condoms and expecting them to use them is deeply disempowering. If you are working as an activist, educator, healthcare provider or are a client using sexual health services speak out against simplistic approaches that promote condom use or HIV testing in an uncritical way.
Unfortunately sexual health – particularly around HIV/AIDS – is often based on good ideas from well intentioned people, but not necessarily practices based on the latest evidence. To find out what’s going on you can use PubMed and Google Scholar to search for research papers, or organisations like MedFash or BASSH. The amazing Magnus Hirschfeld Archive (a multi language resouce) has lots of free tools to help improve your sexual health knowledge – including an online course about understanding STIs. Toolkits to help are also available via the WHO. If you work in education or healthcare ensure your staff are supported to learn about effective ways of promoting clear messages around HIV prevention or how to manage if you are HIV positive. Ask for additional training if you are a staff member or volunteer in this field and ensure you’re obtaining (and attending) continued professional development (and not just for the per diems or certificates – you need to show clear outcomes in your practice and benefits for your clients).
Added to this is the problem of staff who are working in the field of HIV/AIDS but may lack basic training, be unsupported or require more intensive supervision – particularly around reflecting on current evidence and how that might underpin their practice. Without this we see staff giving advice that goes outside their area, not referring to medical specialists when they should, or being highly negative/judgemental. You can do your bit, wherever you are in the world, by campaigning for open access to journals and free or low cost training and support for healthcare practitioners on how to find, appraise, synthesise and apply evidence. All of us who work in health research, activists, clients and academics can and should be pushing for high quality research that does not reinvent the wheel, drain or divert resources from healthcare provision, and can demonstrate practical results that build capacity and sustain communities. Which I appreciate is often difficult to do – that very fact should shame us into trying far harder to achieve it.
In many cultures there’s a mix of a lack of sex education, often a negative cultural attitude to sex, alongside sexual messages within the mainstream media – often with different messages for women and men (so men are expected to be hypersexual, women less so). So often people are not sure about HIV, what it is, how to prevent transmission, or what to do if you’re positive. Creating educational and awareness campaigns that aim at diverse audiences (teens, parents, LGBT, sex workers) and allow people to discuss any areas of confusion can really help. If you want to assess the effectiveness of an HIV intervention, this free toolkit by eminent researcher Doug Kirby is invaluable.
It’s no surprise that HIV is rising in countries where governments have not taken enough appropriate action against HIV or poverty, or to promote balanced sex education. Where politicians are opposed to/negative about pre-marital sex, homosexuality, drug users, or sex workers and do not invest in healthcare and education, then it’s not surprising their electorate suffer. Lobbying, protesting and drawing attention to how government’s do not tackle HIV effectively is one way forward – as is making the treatment and prevention of HIV an election issue. Make politicians accountable – and expose those who are not willing to tackle HIV. Remember HIV is an issue globally, it is easy to assume it happens to people who’re not like us in terms of where they live, their sexuality, gender and so on. In fact focusing on HIV as something that happens somewhere else, or to other people can mean we avoid tackling real inequalities on our doorstep, patronise those in other communities, or assume we’re not likely to become HIV positive or contract other STIs.
We can all find out our HIV status and practice safer sex.
Many people struggle with accessing services that provide education, prevention advice or treatment for HIV due to access to or availability of services. This may be simply because they cannot afford medications, or the cost of travel to get to clinics. Or it may be that services are available but clinic opening times and directions are unclear – or are not available at the time when you need to go (for example early afternoon or weekend for teenagers, evenings for adults). Alert clinics that aren’t making their availability clear. Offer to distribute leaflets or display adverts showing opening times. And campaign for low cost or free access to healthcare, drugs, education, baby milk (for infants who can’t have breast milk) and condoms. Practical campaigning on affordable healthcare, transport and road links, and joined up healthcare that addresses concurrent conditions is also vital (but again, frequently politically difficult, another alarm bell that we really can and should be doing more).
We’re all fighting to prevent HIV/AIDS but that doesn’t mean you shouldn’t question fundraisers that claim to make a difference. There are those who exploit this area, and even where there are well meaning campaigns they may be more about fashion than fundraising/awareness/empowerment. If you want to make a difference then the Buy Less campaign may be more appropriate
7. Healthcare practitioners and teachers – speak out!
As well as promoting more evidence based practices (see above), tackling colleagues who are judgemental about HIV/AIDS (or related areas – for example prejudiced towards homosexuals, transsexuals, sex workers or drug users), then work towards better training and support for them – and if this fails then complain to management and ensure they are not harming others with their views.
Challenge NGOs and funding bodies promoting that only promote abstinence only/anti condom messaging (see above), or who will only fund HIV programmes that don’t mention safer sex or other sex positive/educational messages. Or who simply push for condom use and testing with no other resources given. Where possible ensure your services do not take this approach and link with colleagues to ensure you offer a balanced service based on the latest evidence. If you are working in a resource poor country you may find making links with established academics/practitioners in other countries can help you access materials you need for your work (please email me if you’d like me to put you in touch with some).
If you are struggling to access drugs, medical supplies, sterile clinical products and syringes, or basic supplies like bedding or clothing, then again you may find making links with colleagues in other countries can help. Western medical students, for example, are often keen to fundraise, volunteer and access/share sterile items.
We’ve already heard about the political barriers to sorting HIV, but if you are experiencing this as a healthcare provider, educator, parent or volunteer then expose it – to local papers, through a blog (which can be anonymous if necessary), or through the HIV research/practitioner community. That might be discussing a school or health authority promoting negative or mixed messages, or denying access to condoms. Or national blocks on sex education, or politicians openly supporting AIDS denialism, being trans/homophobic, or harassing those with HIV.
If you don’t feel able to speak out yourself, then alert people like me and we can try and help you find ways to share your story anonymously.
8. Empower people to protect themselves
As well as becoming a sex educator (see point 1 above), encouraging peer to peer education initiatives can make a real difference to young people, although adult to adult peer support schemes work well too (for example to raise awareness among m/f/t sex workers, or gay men). The 15 and Counting Campaign provides a wide range of resources for setting up sex education activities – and to help people campaign within their communities for better access to HIV/sex education.
Alternatively, you may want to support existing HIV initiatives aimed at teaching skills and raising money for people who are affected by HIV. For example the Positive Beadwork Project.
You could encourage clubs and pubs to provide condoms, or work with HIV charities or health authorities to hand out condoms in social spaces. (Remember it’s not just about dishing out the condoms, it’s also about giving people the chance to ask about safer sex and relationships, pleasure and communication).
Supporting open access organisations like the (wonderful) Hesperian Foundation helps people learn more about their health and HIV – including how to prevent, treat, and live with the virus. Their books are free to those in resource poor communities (the rest of us quite rightly pay). Titles worth sharing are listed below (and many come in languages including Bengali, Chinese, Indonesian, Urdu, French and Spanish).
HIV, Health and Your Community
Helping Health Workers Learn
Where there is no doctor: a village care handbook
Where women have no doctor
Where there is no dentist
9. Question bad science
Sadly there’s a lot of misinformation in the name of HIV/AIDS, and often this comes from science – or people pretending to be scientists. The worst offenders are the AIDS denialists, who not only promote their views across the internet, they’re also active within the media (see this recent report on the inclusion of an AIDS denialist movie at a cultural festival).
It is important to tackle AIDS denialists, and there’s a particularly useful list of resources here about spotting pseudoscience relating to this issue.
Added to this are those who (usually well meaningly) offer alternative treatments to those affected by HIV. There is no evidence that homeopathic remedies ‘cure’ or ‘prevent’ HIV, and those who promote such treatments – particularly when encouraging standard medical treatments for HIV (antiretrovirals) are discontinued – are extremely dangerous. Unfortunately there are some who are not averse to maliciously exploiting this virus and will offer a variety of cures, spells, amulets, or other products with the promise of curing or preventing HIV – but in fact simply a means of parting people with their money. We need to do more to stamp out quackery in this area and educate people to use established treatments and methods of prevention.
One of the major criticisms raised at the HIV/AIDS research community is about ensuring studies are focused, relate to/develop existing findings (rather than replicate them), and have measurable benefits to communities. Critics have argued that research in HIV may build academics careers but do little to enable people in ‘real life’ settings, or the focus on HIV detracts from other equally important issues within healthcare. While some of these accusations are often unfounded, there are questions to be asked about the quality of some studies on HIV/AIDS, and the ethical conduct of researchers. We should question any research on HIV/AIDS that doesn’t appear to have ethical approval, or does have approval but still seems to be putting participants at risk. Two examples of this come from sex workers in Cambodia and a Canadian study taking part on sex workers in Nairobi. If you have concerns about ethical and governance issues in research then you should speak to the ethics committee overseeing the work. Established scientists can help if you need support with this (I can refer you to some if this is an issue for you).
We also need to be wary of research that doesn’t fit with the wider body of evidence (or contradicts it). Particularly in the case of studies that seem to be detracting from general HIV messages, or appear to promote anti-condom messages.
Studies and interventions that do not involve communities, sustain development or empower people are also a major problem. Particularly when they involve resource poor communities, or where literacy is an issue, or where access to wider healthcare and education is limited. More information on how this can have a devastating impact on communities (and how researchers, practitioners, activists and communities can resist this) can be found here.
Those of us working within research in sexual health/HIV need to do more to explain our methods, make evidence more accessible and directly applicable, and link carefully with communities where we’ll be working. It is important to work ethically and transparently, but also nurture community relationships as it is unfortunate that some studies are scuppered not because researchers were unprofessional, but the negative reputation of science resulted in opposition to research. PLRI are a good example of practitioners trying to achieve this.
10. Don’t forget, there are 365 World AIDS Days a year
It’s easy to think about HIV/AIDS on World AIDS Day, but not always so easy to remember it all year round. Hopefully the list of ideas above may give you some pointers for things you can do throughout the year that will make a difference. Setting aside time to regularly engage in an activity (like fundraising, volunteering or community education) means you don’t forget about HIV and you help those affected by it.
If you’ve found these tips helpful then please feel free to circulate widely.
I’ll leave you with a link to the official World AIDS Day site, and this short film from 2010 that reminds us why we cannot stop fighting HIV and supporting those affected
Posters for World AIDS Day 2011 can be downloaded here.Tweet