Yesterday, a person identifying himself as Doctor Andy Rosenfarb, a New Jersey acupuncturist, wrote a long and thoughtful comment on “Acupuncture and Retinitis Pigmentosa: Don’t Get Stuck,”a post I wrote here a number of months ago. Also, my first article for 21st Floor, “The Incurable Gonz Blinko,” discusses acupuncture and introduces a couple whom I called Sid and Nancy who asked my advice on acupuncture for RP and Sid, in his real personae, have enrolled in a clinical trial at Johns Hopkins Wilmer Eye Institute in Baltimore testing the efficacy of acupuncture for RP. In this article, I will comment on the item that Doctor Andy Rosenfarb sent but readers should take a look at actual post he made to hear what he has to say in context.
First and fore mostly, I will state that no one wants an effective treatment for RP more than I do and I would be ecstatic if, indeed, it turns out to come from acupuncture. Unfortunately, there remains no published data that suggests that acupuncture helps in any way.
Before addressing Dr. Rosenfarb’s comments, let’s take a look at what can be found about him online. THe web site found about Rosenfarb lists a number of letters after his name. THese, “ND L. AC. C. A.” have little meaning in the world of scientific or medical scholarship.Doctor Rosenfarb’s CV on his web site explains all of his education in acupuncture and naturopathic medicine. Canyon College, registered as a proprietary (for profit) college in Idaho, has no actual accreditation but their web site says they were applying for such. “Doctor” may, therefore, may not be the appropriate title for Andy Rosenfarb.
From Doctor Rosenfarb’s comment and those made to me by Sid, Nancy and others who have mentioned him to me, he seems like a tremendously sincere individual who honestly believes that acupuncture can help treat and slow or even stop the progress of retinitis pigmentosa in some patients. I do not believe that Doctor Rosenfarb is a fraud, snake oil salesman or other intentionally unethical practitioner. As we will see further in this article, Doctor Rosenfarb seems like an uncommon acupuncturist as he is working with very real scientists to document the efficacy he claims in his patients. Based upon Doctor Rosenfarb’s comments on my article, though, I feel that he makes some questionable assumptions which I will try to illustrate below.
Doctor Rosenfarb starts by saying:
“There is no “cure” for RP, so lets be clear about that. Rather, we use acupuncture as a management strategy as an attempt to recover some lost vision and slow and/or arrest progressive vision loss associated with RP. The objective is long-term stabilization and vision preservation.”
And, with this statement, he takes a big step in the direction of credibility in my eyes as, searching on Google for “acupuncture cure retinitis pigmentosa” finds about 340,000 results so, while Doctor Rosenfarb may not claim to have a cure, a lot of his peers may be less careful with the language they use in describing themselves.
About his history in the field Doctor Rosenfarb writes:
“I have treated hundreds of cases of RP and unfortunately not everyone get great results and other do not respond at all. The majority do respond very well, including young children, teenagers, and young adults. Kids are not really invested in the outcome and haven’t even learned to be upset about their condition. This makes for a difficult argument for placebo. When results are measurable, it falls into the realm of science.”
As Doctor Rosenfarb has never published results in a manner that they can be reviewed by impartial scientists, the way that real science works, I can’t comment on how his outcomes were measured or if others doing the research have seen similar effects in their patients. Testimonials are nice but are not considered evidence by any mainstream scientists.
Regarding the kids who show promising results, I wonder if they are also taking large doses of vitamin A. I wrote an article on supplements and retinitis pigmentosa that showed that a leading RP researcher at Massachusetts Eye and Ear had published very convincing results regarding slowing the degradation of the retina caused by RP which sounds like the same sort of results that Doctor Rosenfarb is seeing. If, in fact, his RP patients are doing the vitamin A doses as well, his findings may have nothing to do with the acupuncture at all.
On research, Doctor Rosenfarb starts:
“We do need research not only to support our findings and appease the medical community, but to improve upon our treatment strategies.”
Here, Doctor Rosenfarb and I agree entirely but I take exception with the term “appease the medical community” as appeasement is not the point at all. In mainstream medicine, the scientists must demonstrate efficacy in peer reviewed publications and go through tremendously rigorous studies before they can claim that a remedy can or cannot do something. I think it is only reasonable to require acupuncture, homeopathy, chiropractic to do the same sort of delivering evidence before a treatment is approved.
Continuing on research and the part of Doctor Rosenfarb’s comment I find most compelling:
“Also, we are currently doing a research project with Johns Hopkins University on the treatment of RP with Acupuncture. “Scientific Research” is on its way.”
I applaud this cooperation and look forward to reading the results. I’ll assume (perhaps dangerously) that the guys at Hopkins will control for vitamin A so as to isolate acupuncture as the cause of any results they find.
“I am truly sorry that you did not get good results with acupuncture, I wish that everyone would. Each case is different and it just doesn’t work for everyone.”
My experience with acupuncture nearly 30 years ago may have been different than what Doctor Rosenfarb’s patients receive today. I do not write about alternative medicine and disability out of anger for the money, time and hope I lost to acupuncture and other non-traditional practices but, rather, to shine a light on the millions of unproven claims on the Internet that seem to be entirely fallacious. As there are no regulatory bodies or requirements that treatments be demonstrated to be efficacious in the alternative medicine world and because of the “wild west” Internet there is a lot of space for those who would victimize people seeking hope.
On existing data, Doctor Rosenfarb writes:
“Research indicates that certain acupuncture points may increase ocular blood flow which may increase the delivery of oxygen, vital nutrients, and enhance cellular detoxification.”
He provides a pointer to an article in “The Internet Journal of Ophthalmology and Visual Science. I’ve never heard of the journal and have no reason to question its scientific rigor but what I couldn’t find was any research that this added blood flow does anything good for people with retinitis pigmentosa. Also, is acupuncture the only method that increases this blood flow that may or may not do anything for RP patients?
Rosenfarb then states:
“We have also seen that specific acupuncture points can cause global excitation of the retinal cells and optic nerve based on visual field perimetry. I would love to be able to measure this some day on a functional MRI if the opportunity presents.”
Well, as Doctor Rosenfarb charges $3000, a sum not covered by any health insurance, for a series of 30 treatments over ten days I suggest he may be able to pool some money with other acupuncturists interested in solid research and publish findings that explain all of the controls, the methodology and techniques so an independent team can then attempt to reproduce the results. I’m highly confident that if acupuncturists can demonstrated the efficacy that Doctor Rosenfarb describes, they will be able to switch to solid gold acupuncture needles from what patients with hope and evidence will spend on their efforts.
Doctor Rosenfarb concludes:
“Please consider that there are many stuck in a hopeless and desperate situation who are loosing their vision fast. Conventional medicine has nothting to offer right now. Stem Cell treatment & Gene therapy are a long way from proving clinical efficaly, and have great risks. Clincal trials abroad so far have failed. If these specific forms of acupuncture can help individuals then why discurage people from at least trying it? One of the best things about acupuncture is that there is virtually no risk. Worst case scenario is that it just doesn’t work. Maybe some disappointment, but no harm done. Most conventional drugs and surgeries come with significant health risks and side effects.”
I will point out that the fact that conventional treatments may not work and have potential side effects may be true but this isn’t a reason to get acupuncture as if one method doesn’t work, it doesn’t make another one work. I would say that, for right now, there is no real evidence that there is anything other than large doses of vitamin A that does anything to help slow or stop the progress of the disease.
“There is no reason NOT to consider acupuncture if you have RP. “Gettin stuck” is better than doing nothing at all. Just make sure that the person doing the treatment has experience and is measuring your progress and honest.”
I do believe that the disappointments from false hope are bad results. I discourage people from spending $3000 on any treatment that has no published findings of efficacy and I believe that this financial damage is significant, especially given that 70% of people with severe to total vision impairment in the US are unemployed. Given all of the evidence (virtually none at all) for acupuncture, I would say that Doctor Rosenfarb might conclude that one should try anything at all that isn’t harmful just to have hope that may be dashed later.