Alan Bergen says he clearly remembers the day he double-clicked his computer's Internet browser, accessed a search engine, and typed in the words 'HIV treatments.' Like so many other HIVers, he was eager to see if any new products might magically eradicate the virus from his body'or curb the side effects of his current antiretroviral regimen.
Within a second the search engine retrieved thousands upon thousands of links to articles, Web sites, and forums. Some of them made Bergen's heart race with excitement, especially the herbal treatment that could'so it claimed'replace his drug cocktail. No more nausea or stomachaches. No more sleepless nights. No more depression.
Three months later Bergen's physician looked over his latest lab report with alarm. His viral load had spiked'significantly. Only after this scare did Bergen tell his physician of his new self-prescribed 'cocktail.'
Bergen is not the only person to make a calamitous or alarming health-related decision based on information found online. 'The Internet can be dangerous because a lot of what is found there is not based in fact,' says Stephen Goldstone, MD, assistant clinical professor of surgery at New York's Mount Sinai Medical Center and cofounder of GayHealth.com, a site that includes extensive information about HIV.
'There are chat rooms with people putting forth their opinions'like if your viral load is low, you cannot give someone HIV,' Goldstone says. 'People can read about symptoms and assume they do not have HIV or some other infection or even conclude they have the worst and end up so afraid that they do not want go to their doctor. You have to realize that just because it is on the Internet does not make it fact.'
The World Wide Web can be surfed with complete anonymity'a blessing for people who feel jittery about asking their doctors sex-related questions. Yet all manner of crackpot and con man'from a man claiming Jesus purged him of HIV to expensive 'alternative' therapies (which are exempt from U.S. Food and Drug Administration approval and regulation) as well as conspiracy theorists alleging HIV is unrelated to AIDS'take advantage of sometimes desperate HIVers.
Conversely, the Internet also brims with helpful, to-the-moment research and information, some garnered from otherwise impossible to obtain firsthand experience. Ultimately, the role the Internet plays, helpful or potentially detrimental, depends on how someone approaches it and uses it. But there is one overriding caveat to always keep in mind: The Web should never be a replacement for discussion with and advice from a regularly seen physician.
'I would never ever expect anyone to make health care decisions based on what they see on GayHealth.com,' Goldstone insists. 'I see it as a supplement and a news source to provide information and answer questions. But it is never, ever supposed to be a substitute for going to a doctor.'
Howard Grossman, MD, is the executive director of the American Academy of HIV Medicine and also a medical adviser for AIDSmeds.com, a site created by and for people with HIV that offers extensive information on treatments. He says the Internet can be a positive tool'but only if one keeps a few basic rules in mind.
First, different Web sites address different audiences. One site can be the equivalent of a medical journal (like Medscape.com, designed as a reference for clinicians), another akin to a pamphlet written in easily digestible layman's terms (amfar.org), and others falling somewhere in between. 'Be careful about more sophisticated science sites if you do not know how to process the info,' Grossman warns. 'The press is terrible about this because they pick up a preliminary study and go crazy with it, and a year later you find the opposite is true. You can make bad errors' if you rush to action on information that is only presented as a suggestion to further studies.
Joseph McGowan, MD, medical director of North Shore University Hospital's Center for AIDS Research and Treatment in Manhasset, N.Y., says cross-referencing information and news with reputable, legitimate sources is another important step. 'You want information you can verify on more than one site,' he says. 'If you see a strong claim you cannot find anywhere else, that is a sign it may not be supported by scientific vigor. Try and cross-reference it. If the claim is reputable, several sites will have news of it, so you know that it is something that has been out for peer review.'
However, even accurate reports can get blown out of proportion. One December 2004 report out of Rutgers University about a potential medical 'cure' spread like wildfire. In reality, the story detailed the discovery and development of a trio of experimental medications that might be less susceptible to the development of drug resistance than existing treatments. 'I think the PR got ahead of itself,' McGowan suggests.
Finally, and most important, since HIV affects each individual differently, therapies that work for Tom may not work for Susie. Even with information that stands up to cross-referencing, one should always discuss news found online with a physician before taking any action. There is no shortage of anecdotes about patients making ill-advised, hasty, and even dangerous decisions because they got wrapped up in what they saw floating around in cyberspace.
'I see people who are on the Internet and stop their medications without really discussing it with their doctors because they read, 'I stopped my meds, and I felt fine,' ' Goldstone says. 'That is really a problem. It can go the other way too. You can read about a new medication'and be doing really well with what you are already on'and go to your doc and say, 'I just read about this; I want this drug,' and it may not be a good idea to switch your meds. That is where you really have to listen to what your doctor has to say.'
McGowan adds, 'It's human nature for people to want an easy answer, but even things that may sound benign'like taking an herb'can have interactions with medications, and that would need to be cleared ahead of time. Some of these treatments have side effects of their own. It could start showing up as abnormal results or a rash, and it would be difficult for a doctor to sort out if he or she does not know what you are taking. And any adjustment at all in these cocktails could be dangerous because it could lead to overdose, viral resistance that could be difficult to manage, and potentially even death.'
Using Online Info Offline
Because HIV-related knowledge is constantly changing and being updated, it can be difficult for physicians to keep up with every development. Therefore, HIV caregivers generally are open to their patients approaching them with information they found on the Net. But there are a few steps to take to easily weave that information into your office visit. First, print out the information so it can be presented in person. Second, bring up your questions and discoveries at the beginning of your doctor or clinic visit so that your caregiver can determine whether your session can accommodate or make time for addressing them right away.
'Doctors are criticized for not doing enough patient education,' says Jeff Kirchner, medical director at the Comprehensive Care Clinic for HIV at Lancaster General in Lancaster, Pa. 'And I think there is so much yet to learn that, philosophically, I keep an open mind. But there is only so much you can cover in a 30-minute clinic visit. Tell me what you have read, what you have heard, and I will tell you whether I think it is garbage or has not been studied.'
Robert L. Reed, a policy associate at the AIDS Foundation of St. Louis and a self-described 'jack of all trades' in the HIV field, frequently brings up online and media discoveries with his HIV doctor. 'Some people had had positive feedback on a drug available for neuropathy,' he recalls. 'So I took it to my doctor and said, 'What about this for me?' My doctor works with me as a team, so he is accustomed to me doing that. And just because we read it as patients does not mean our physician has read it already as well.'