The growth of the internet over the last fifteen years has changed the way we do research, communicate with others and entertain ourselves. For people living with HIV, the net offers opportunities too, but it’s wise to be cautious – not all the information you find on the net can be trusted: it can be out of date, misguided or just downright false.
In the December 2004 edition of Backgrounder, we outlined some simple strategies for establishing whether information found online is trustworthy. You can find that article on the NAPWA website, but here’s some of the key points again:
- Use your common sense, and don’t get fooled by slick-looking websites with bogus information.
- Look for sites with claims backed up by real evidence – scientifically conducted clinical trials – and be sceptical of anecdotal ‘evidence’, personal stories and wild claims.
- Information should be clearly dated and the author’s details given.
- Clinical trial data published in a respected, peer-reviewed journal is trustworthy, especially if it’s fairly recent. Unpublished data, obscure publications and publication dates years in the past should be questioned.
- Be suspicious of wildly inflated and hyped language – things like conspiracy theories, bagging the pharmaceutical industry or claims of magical cures.
- If you’re unsure whether a source is trustworthy, ask your treatments officer, doctor or PLWHA organisation what they make of it.
OK, what are some good websites where you’ll find reliable, trustworthy information?
First stops
A good place to start is the NAPWA website. As well as an archive of articles from PL, the NAPWA website has fact sheets from the AIDS Treatment Project Australia, educational resources produced by NAPWA and AFAO, information about NAPWA’s work and a comprehensive links page. Another useful feature on the NAPWA site is a search facility which allows you to do a Google search restricted to NAPWA-recommended web sites.
The AFAO web site is another site with heaps of Australian-focused information including educational resources for people living with HIV.
State and Territory AIDS Councils and PLWHA groups have a wide range of information on their sites, and the PLWHA websites have listings of events and support groups for their state. If you haven’t made contact with your local PLWHA group, having a look round their website gives you a good idea of the services on offer. Queensland Positive People even has an online discussion forum where you can chat with other positive people anonymously. Links to these organisations can be found here.
Positive heterosexuals will want to check the websites for Straight Arrows in Victoria and Positive Heterosexuals in NSW (currently offline). Positive Women Victoria also has a comprehensive site.
Treatments info
Apart from the NAPWA site, there aren’t a lot of Australian-based websites dealing with HIV treatments in-depth. The Australasian Society for HIV Medicine (ASHM) has a good selection of fact sheets in a manual called Positive Information for Patients. This resource covers a diverse range of subjects but is only updated occasionally.
Fortunately, there are several overseas websites which have built up a strong reputation in this area. Not all of the information will be relevant, particularly where individual drugs have been approved overseas but not in Australia, however these sites provide a wealth of information which is carefully researched and reliable.
Perhaps the best known is Aidsmap, an award-winning UK-based site which is updated almost every day with the latest treatments news. As well as an encyclopaedic coverage of anti-HIV drugs, this site has useful fact sheets about topics such as adherence, resistance, pregnancy and childbirth and lots more. Information on this site is graded according by knowledge level, from ‘beginner’ to ‘expert’ and all the information is referenced and regularly reviewed.
Other useful treatments websites include the US-based Project Inform, the handy reference site www.aidsmeds.com, with fact sheets on the range of HIV treatments, and HIV Insite.
Positive stories
The web is rich with personal content, and positive people are reasonably well represented. Reading other’s personal stories can be a therapy all by itself, as it helps reinforce the truth that we’re not alone as positive people. Of course, with all anecdotal information, including blogs and reader-contributed sites, it’s you should bear in mind that any medical information needs to be verified via a reputable source before it can be relied on.
The Body is a popular US-based site with lots of information about HIV treatments as well as lifestyle info, much of it drawn from HIV-related publications in the US and elsewhere. But the Body also has an online gallery of HIV-focused artwork and a popular ‘ask the experts’ forum, as well as bulletin boards covering a wide range of topics. Much of the content is US-centric, and some of it borders on the peculiar, but this extensive site is well worth a visit.
An Australian based site at www.hivaids.webcentral.com.au has lots of personal stories by people living with and affected by HIV/AIDS from Australia and around the world. The stories cover areas such as getting tested, dealing with a diagnosis, disclosing your HIV status and women living with HIV/AIDS.
The explosion of blogs over the last few years has meant that there are quite a few positive bloggers on the net. As is the case for non-HIV-focused blogs, these tend to come and go and the quality of the content is pretty variable. A Google search for ‘HIV blog’ or ‘poz blog’ will turn up lots of possibilities.
A couple of bloggers worth checking out, at least as a starting point for explorations (most have links to other HIV-related blogs) are Canadian Brian Finch, New Yorker Tommy Rico singer-songwriter Steve Schalchlin ‘I Deal with It’ and ‘Too Busy Living Life to be Sick’. Some of these sites include material that may not be suitable for all readers and/or may not be suitable for viewing at work, so take care.
Another option is to join an online discussion group. OzPoz is an Australian email-based group for gay men who are HIV-positive; it’s been going for more than ten years and it’s an easy way to get in touch with other Australian positive guys, anonymously if you prefer. OzPoz also hosts a NAPWA-auspiced group run by and for HIV-positive women (women@napwa) – details on how to join are on the website.
Note: NAPWA and Positive Living don’t endorse any external websites, and while the sites listed in this article are recommended, you should still be careful in appraising any information you find.
