Journal Sentinel: Patients spend thousands on unproven Chinese treatment
For two years, Pamela Hottenstein of Beloit, Wisconsin, held fund-raising car washes, left donation jars in restaurants and stores, and, amazingly, raised $32,300 to try to help her 17-year-old daughter, Cassy (photo)–who is blind, sometimes violent and self-destructive, and can only speak a few words.
According to a heartbreaking story by Mark Johnson in the Milwaukee Journal Sentinel, Hottenstein wired every penny of it to a Chinese company for unproven stem-cell injections she hoped would help Cassy.
Did the injections help? Hottenstein is unsure. “I know this is all we have,” she told Johnson.
The story was the first of a two-part series that ran Sunday and Monday. (The second installment, also dealing with the Chinese stem-cell company, was written by Meg Kissinger.)
The reporters did everything they could to establish whether the treatment had any validity. They interviewed dozens of scientists, some of whom were nearly apoplectic in their condemnation of the way the treatment is being promoted.
Johnson and Kissinger deserve warm praise for this series, which represents the best of what newspapers can do when they devote time and money to a story and put a pair as skilled as Johnson and Kissinger on the job.
It seems unfair to criticize such a thorough and professional piece of work. But I do have one slight reservation.
We’ve read this kind of story before. Desperate people making desperate attempts to help their loved ones. Many of us have written this kind of story more than once, even if (in my case) we’ve done so less thoroughly and convincingly than the Journal Sentinel team.
My question is: Why do people continue to fall for these unproven, and sometimes outright fraudulent, claims? Yes, I know, there is an easy answer. People want to do something, anything, to save a child, a spouse, or a parent. It seems we have trouble accepting that, in some cases, there is nothing that can be done.
Johnson and Kissinger talk about that, but they might have explored it a little more thoroughly.
I know I sound like the worst kind of reviewer: “Your story is great, but why didn’t you write the story I wanted you to write?” So I’ll let it go. This is a fine piece of work, and my slight reservation might have more to do with my own troubled reaction, rather than to anything Johnson and Kissinger did or didn’t do.
Why do people do this? Risk everything for a treatment that almost surely won’t work? Might I do the same in similar circumstances?
Not too many stories get under my skin the way these stories did. Thanks, Johnson and Kissinger, for giving me something to think about. It’s just so sad.
- Paul Raeburn
February 2nd, 2010 at 6:46 pm
With no intent to criticize Paul on this fine post, I’d like to juxtapose two quotes:
“My question is: Why do people continue to fall for these unproven, and sometimes outright fraudulent, claims? Yes, I know, there is an easy answer. People want to do something, anything, to save a child, a spouse, or a parent.”
“For two years, Pamela Hottenstein of Beloit, Wisconsin, held fund-raising car washes, left donation jars in restaurants and stores, and, amazingly, raised $32,300 to try to help her 17-year-old daughter, Cassy…”
So, in this case at least, Pamela Hottenstein didn’t just fall for the claim, she [fill in verb of choice] people in her community of $32,300.
February 3rd, 2010 at 12:24 pm
From Brian Vastag, who had trouble posting:
Brian Vastag (Paul – I tried to post this on the Tracker but had no luck registering.)
Kudos to Mark Johnson and Meg Kissinger for their deep reporting and clear writing on the series. I tackled the stem cell tourism issue in 2008 (http://www.washingtonpost.com/wp-dyn/content/article/2008/08/29/AR2008082902517.html) and thought a lot about a variation on the question you pose. “Why would anyone pay for unproven treatments?” I think a number of factors are at play:
- Stories speak louder than stats. Beike knows this, as do the other online purveyors of stem cells. (The J-S series alludes to this point.) The companies market their wares with anecdotes and testimonials, heart-warming success stories that offer hope after conventional medicine has said, “There’s nothing more we can do here.”
- Many people distrust scientists, physicians, and the whole medical system. Any remedy that positions itself as an alternative – something the mainstream rejects or doesn’t understand or is actively squelching because it would rob profits from drug companies – automatically appeals to people who feel betrayed by modern medicine. A giant alternative remedies industry rests atop this foundation.
- Again and again in my reporting, I heard desperate families tell me that if the chances of success with an unproven therapy were tiny or slim or even vanishingly small, those odds are better than zero. Whereas the odds of dying from ALS are 100%. So why not take a flier on something way out there?