People with HIV, even more so than the general population, are quite likely to use what is ‘complimentary’, ‘alternative’ or ‘holistic’ medicine. Project Inform’s Hotline LINK receives a fair number of calls about the safety and utility of such interventions, and I am asked my opinion rather frequently.
Project Inform takes a skeptical, but fairly hands off approach to what I will call alternative medicine. We make the following points 1) little reliable, reproducible evidence exists to back up most types of alternative medicine, 2) the ‘decision to use’ is most often based on anecdote and word of mouth recommendation 3) most interventions are viewed as safe (most often true) and non-corporate (less often true) and 4) tell you doctor everything you are doing.
Personally, I have a bit harsher take on this question. Full disclosure: Back in the 1990s, when I was sick I went to acupuncture regularly, and took heroic handfuls of various herbs and supplements in a kitchen-sink effort to support my flagging immune system. As I recently wrote about, one of my dearest friends is the clinical director at an HIV focused acupuncture clinic. Most of my friends are more likely to take an herbal tincture or homeopathic sugar pill than a course of antibiotics.
While I won’t be as provocative as Penn and Teller recently were and call the lot of it ‘Bullshit,’ I will say that I am quite skeptical about most of it.
I don’t think of medicine in terms of ‘western’ or ‘eastern’ or ‘allopathic’ or ‘holistic’ or ‘traditional’ or whatever. I only see two categories: proven and unproven. I don’t care a wit if a treatment comes from the bark of a tree or the inside of a beaker- what matters to me is proof.
Aren’t I a bit of a hypocrite? Didn’t I use Chinese herbs and moxabustion when I was dangerously sick, and now am trashing it? Well yes and, well yes.
When I was sick, I was willing to try almost anything. There were programs that helped pay for acupuncture and herbs, so I tried it. Some of it helped- especially the herbs. What really improved my health however wasn’t herbs, wasn’t massage, wasn’t yoga, wasn’t prayer, wasn’t tweaking my chi- it was stavudine, lamivudine and indinavir- nasty, harsh and altogether life saving chemicals.
I think there is something to be said for herbs. To this day many of the drugs we take have their origin in plants of various types. It isn’t hard for me to understand how a plant- a complex of biologically active compounds- could have physiologic effects.
But it is folly to assume that nature is more gentle or healing than chemistry. The analgesic properties of willow bark were long known, but its bitterness and propensity to shred people’s stomachs limited its utility. When chemists were able to isolate, synthesize and manufacture acetylsalicylic acid- aka aspirin- the world became a better place.
As for things like healing touch, acupuncture, chakra balancing and so on and so forth, I just don’t see it. Just because I don’t understand it, doesn’t mean it isn’t true of course- but the burden of proof is on the supporters, not the skeptics.
There are some supportive data on acupuncture for example, and more equivocal to negative data. It isn’t proper to cherry pick supportive data and ignore the rest. When pharmaceutical companies do that we yell and scream (rightly). When scientists do it, they ruin their careers. When politicians do it, we call them Karl Rove.
One of the most egregious examples of this in HIV tainted Project Inform and literally scarred me. Back in the pre-HAART days, I attended a talk on DNCB- a photochemical that its supporters claimed stimulated a part of the immune system. You bought these little brown vials of the chemical and rubbed them on your skin.
Project Inform supported research on DNCB. The initial data looked promising- people in the intervention group seemed to be doing better than the control group. Turns out the scientist doing the research took everyone who was getting sicker during the study (non-responders) and called them the control group. Project Inform discovered what was going on and immediately distanced itself from the whole thing. However, DNCB was still being sold for years after that.
The DNCB left its mark on me- literally and figuratively. I still have a faint scar on my arm where I used to rub the stuff on. It helps remind me that my job is to be skeptical- to look at all HIV medical claims, whether they come from Pfizer or Andrew Weil.
On that episode of Bullshit, they talked about this 9 year old girl (forget her name) who holds the record for being the youngest person ever to have a paper published in a peer reviewed medical journal. She did a simple, elegant experiment to test the concept of healing touch. Proponents of this misnamed practice believe that you can help heal someone by moving your hands above a person’s body and manipulating their energy fields. This brilliant pre-teen skeptic got together a group of healing touchers and had them put their hands through a cardboard shield to see if they could feel- without looking- whether her hand was there or not. Surely if they can sense and manipulate a person’s energy field, they should be able to tell if their body is there or not without looking. Pure chance would give them a 50/50 shot- they got it right around 40% of the time- less than pure chance.
Like I said- there is only proven and unproven.