Over the past few months , I’ve discussed joining the 21st Floor team to cover issues involving alt-med and major disability. In the past week, two events have caused me to rethink the column. First, a woman in the US found my very obscure and under construction web site and wrote to me saying that her husband was about to spend $3000 for 30 acupuncture treatments that will cure his retinitis pigmentosa, coincidentally the eye disease that caused my blindness. Second, the Burzynski Affair dominated the skeptical blogosphere for a few days and fellow 21st floor writer Keir Liddle started tweeting about trying to find a support group, starting one if necessary, for victims of alt-med scams.
My original intent for this column was strictly to debunk claims of efficacy for alt-med remedies for incurable conditions that lead to major disability. Instead, I will write about bogus claims for otherwise incurable diseases but I will also work to help those seeking any direction and to find fellow travelers in a world of false claims and false hope. –
As a matter of introduction: I have a total vision impairment and have worked in technology for people with disabilities for the past 15 years and have a solid familiarity with the medical sciences regarding “cures” for such.
My own blindness came from retinitis pigmentosa, a genetic disorder with no known cure. Oddly, though, googling, “cure retinitis pigmentosa” comes up with roughly 1.4 million hits. Some of the search results are for excellent research going on around the world; the overwhelming majority, though, are for alt-med solutions to the problem.
When I read the email from a woman who we will call Nancy, I thought of myself about 30 years ago. I was 21 years old, I knew I would go blind, the doctors told me there was no cure so I fell victim to the alt-med propaganda of the day. I will write more about my experiences with such in the future but, for now, I will admit that I spent tens of thousands of dollars on everything from acupuncture to enemas with practitioners who were certain they could save my vision – I have zero usable vision today so I will accept that none of these remedies remediated anything.
Nancy wrote that her husband, who we will call Sid, had found an acupuncture center online (I’ve asked her for a pointer but she hasn’t sent it yet) that, after he inquired, told him that they could “cure retinitis pigmentosa” with a ten day, 30 acupuncture session system for a mere $3000. Sid views the treatments as a great opportunity to save his remaining vision and maybe get back what he has lost; Nancy believes (and I agree) that this will not cure the RP and, after about six months passes, Sid will probably be told that he needs more treatments.
Nancy told me that this is not the first time that Sid has sought alternative cures for his retinitis pigmentosa. Each time, he spends a lot of money, each time he thinks (without clinical confirmation) that the treatments may have helped and, six months after a regimen of some sort of alt-med, he crashes with depression that the cure was, in fact, not working for him.
Among other things about blindness, access technology, alt-med, acupuncture and the facts of the case, I shared with Nancy, “You find yourself in a really tough spot: you can go along with the acupuncture idea and help Sid find some false hope which will feel good for both of you for a while or: you can provide him with the evidence that no one has ever demonstrated acupuncture can work better than a placebo for any malady which will either dash his hopes or cause him a tremendous level of resentment. You surely do not want to find yourselves ten years from now talking about how his vision could have been better if he didn’t ignore the possibilities promised by acupuncture but you also do not want to live with the big bills for the service only to learn that it didn’t do anything at all.”
Herein lies the damage that goes beyond the financial. While $3000 for a series of treatments that have what can be at most described as “a non-zero probability” of efficacy sounds like a lot of money, not trying the treatment means accepting that, in this case, blindness will be inevitable, a notion incredibly difficult to accept without a fight. The stress on Nancy and the rest of Sid’s support group caused just by watching him on the emotional roller coaster of alt-med miracles first promise and later fail to deliver can be exhausting. As I wrote to Nancy, though, if Sid doesn’t go for these treatments, he may, in a decade, turn around and blame her for his blindness as she kept him from trying everything possible even if they are modalities with a low probability of success.
The Burzynski affair further demonstrates the harm of false hope. The family of a little girl with inoperable cancer, along with celebrities and the generosity of strangers raised about £200,000 (~$315,000) for a series of treatments at the Burzynski clinic in Texas. The clinic sells a treatment for which there is no evidence of efficacy and, different from all other centers offering participation in a clinical trial that I could find, they ask patients to pay to join the study. In a long time running this so-called trial, Burzynski has never published any results demonstrating that their treatment works. (You can read a lot more about the Burzynski affair on this site and other skeptics’ blogs.)
The Burzynski clinic advertises on its web site that it can cure a wide variety of unrelated cancers with their unproven treatments. From the little girl in the UK, they cashed a really big check and have provided her with a set of treatments not available in her country and likely less effective than the conventional treatments she could have gotten at home.
So, as Tim Farley would ask, what’s the harm in providing hope? There is none if the hope is real. If either Sid or the little girl’s family could be provided with evidence that even says that the probability of success is very low, they could make an informed decision about their course of care and decide to risk a lot of money on a long shot. Sadly, though, they hear promises without evidence, make poorly informed decisions, create serious emotional stress in their families and friends and, ultimately, need to live or die with the malady that they are trying to correct. The harm cascades well beyond the actual patient and, aside from a short time when the hope feels real, there is no benefit whatsoever.
What I have learned from Nancy is that families are seeking information about alt-med cures and the data necessary to make an informed decision is simply not available to them. Nancy found my web site – it’s barely more than an under construction set of pages that cannot possibly rank highly on any search engine which suggests that there is a great hunger for this information but it is hard to impossible to find.
I am open to believing that some alternative modalities may be effective for some health issues but, to date, I’ve seen scant evidence of such. I will try to read anything sent to me that has been published in peer reviewed research on these topics. In future articles, I will write about different alt-med claims of efficacy for major disabilities. I will start with blindness as that’s the area I know the best but I’m learning about other disabilities pretty quickly. If you would like to help me with research, I’d appreciate links and pointers to unlikely cures for major disabilities as well as any anecdotes you have about using alt-med to cure the incurable. I will also be posting my entire letter to Nancy on my own site (www.hofstader.com) which is disability focussed so, if you’re seeking more details, you can look over there soon.
I agree with Keir that it is not our job to run around telling everyone who will listen that those who choose an alt-med modality are stupid. In fact, I agree that we shouldn’t engage with patients unless they inquire about such treatments. Instead, we should create an online place where patients and their families can find support from others interested in participating. As an individual, I can provide my personal experiences of spending a ton of money on a panoply of alt-med treatments but we need to build a team of volunteers with all sorts of disabilities and all sorts of attempts to find a cure for the incurable. Please join us in this mission.
My real name is Chris Hofstader but I write, tweet and do a number of other things under the name Gonz Blinko. I selected the name as both a tribute to Hunter S. Thompson and as a profession of writing a gonzo existence while blind. You can follow me @gonz_blinko on Twitter and you can write directly to me by using the contact form on http://www.hofstader.com.