The Price of Research
To the Editor:
Just got to read Alexandra Jacobs’ review of my book The Price of Privilege [“Our Gilded Youth in Crisis! Ennui and Grade-Grubbing,” Aug. 14]. It was very well written, and the Lego metaphor made me laugh. But in fairness, Ms. Jacobs left out the most important part of the book, and that is the fact that it is research-based. Walking away from the review, one has the notion that I’m a “warm and genuinely concerned person” who uses too much psych terminology and has a tendency towards “poesy.” Whether that’s accurate or not (well, I certainly do think I’m a nice person), it says nothing about the facts I’ve presented.
If this book were just about my experience or even the county of Marin, in my opinion, it would be narrow at best, self-indulgent at worst. But Ms. Jacobs neglected to mention that this book is really the outcome of many years of research, much of it by one of the most respected researchers in the country.
It would seem to me, stylistic issues aside, that the significant difference between Alexandra Robbins’ The Overachievers, also reviewed, and my own is that one is about several kids and the other is about thousands. I would suggest there is a world of difference in the conclusions one can draw from these two samples.
Al, Is That You?
To the Editor:
Steve Kornacki is so on the money with Joe Lieberman [“Lieberman’s Precarious Fate Makes D.C. Democrats Sweat,” Aug. 14]. And the visual of the acceptance speech of Ned Lamont with Al Sharpton in the background will not go unnoticed.
Short Hills, N.J.
Fringe Cancer Treatments Go Unresearched
To the Editor:
I just read Ron Rosenbaum’s article about Starchild Abraham Cherrix [“Starchild Abraham: His Trip to Tijuana for Chemo-Refusal,” The Edgy Enthusiast, Aug. 7]. It is a good discussion of the ethics involved, which are complex. I’d like to encourage you to err on the side of libertarian instincts in this matter. I have been a nurse since 1985 and accompanied my father, a medical researcher, to Mexico for cancer care. That was his well-researched choice.
Having just studied the phenomenon of the Tijuana clinics myself for my thesis topic in graduate school, I felt moved to respond to Mr. Rosenbaum’s assessment of the science behind the treatments offered there as “bogus.” Interestingly enough, some treatments, such as photopheresis, that are just now becoming available in the U.S., were available in Mexico first. Others are being studied here but are not widely available, such as insulin-potentiation therapy and low-dose chemotherapy. Some treatments, such as Hoxsey’s formula, have not been formally studied for economic reasons.
Hoxsey refused to allow his formula to be patented because his father, who used it before him, told him he must always make it available to people who could not pay as well as people who could. (Read Kenny Ausubel’s When Healing Becomes a Crime.) The A.M.A. spent a lot of effort and time in court to shut Hoxsey down, but it always turned out that he had healed some relative of a key player in the court battle.
Ralph Moss has an excellent assessment of the current status of cancer-treatment centers in Tijuana. It is really worth reading and is available on his Web site. (I have no affiliation with him.)
And Mr. Rosenbaum is very right to say that these treatments, such as Hoxsey, are not well researched. The problem is that there is not enough research done on treatments that are not patentable. The price for F.D.A. approval is so high that only big pharmaceutical companies can afford to navigate it, and even for them it is necessary to have a large, sustained market at the other end of the process in order to be considered profitable. This rules out any de-escalation in health-care prices, as well as completely ignoring a huge wealth of potentially health-enhancing, currently existing technologies. It’s a lose-lose situation.
The finance of health care is a huge and growing issue. There is no such thing as a “free market” in health care, and this is a problem for those of us who are less than appreciative of efforts by the government to protect us from ourselves. Not only is the science of medicine poorly understood by the layperson, cutting-edge science is also not well incorporated by the medical community, who struggle to keep up within their own fields and are burdened by a byzantine reimbursement system. And the economics of health care are positively Machiavellian in nature.
It is a very difficult subject to tackle within the context of guiding the judgment of someone on the cusp of adulthood. I appreciate Mr. Rosenbaum’s discussion of it. Thank you!
Alicia Bright, M.S.N., R.N.
San Rafael, Calif.