In September 2006, Charlene DeMarco, a former doctor of osteopathy, and Elizabeth Lerner were convicted of 11 federal charges of trying to cheat people with ALS and their families.
The two had claimed they could treat ALS patients with stem cell therapy, going so far as to say DeMarco had received approval from the U.S. Food and Drug Administration (FDA).
Lerner and DeMarco’s scheme brought in tens of thousands of dollars from people with ALS hoping to benefit from a treatment they never did receive.
DeMarco was sentenced to 57 months in prison and Lerner to 33 months. They also were ordered to pay more than $82,000 in criminal fines and restitution to victims.
A serious problem
The sorts of claims made by DeMarco and Lerner are not new.
One day it’s stem cells in China; the next, chelation in South Carolina. It might be detoxification or a strict antioxidant regimen prescribed on the Internet, or South American herbal supplements. These treatments may be touted as “the answer” that will “drastically slow disease progression,” or sometimes even as “the cure.”
Safety and efficacy questions aside, the only guarantee when it comes to such claims is that there’s likely someone behind them who stands to make a healthy profit at the expense of families coping with ALS.
The dangers inherent in some of these “treatments” aren’t limited to loss of income. The possibility exists that they may exacerbate ALS symptoms; hasten the progression of the disease; interact negatively with other prescribed medications; or cause health problems such as liver or kidney failure.
Even if they cause no adverse effects, if they fail to slow or stop ALS as advertised, they may become the source of stress, disappointment and dashed hopes.
Learn to spot a scam
In the year since her ALS diagnosis, Sharon Caruthers of Mentone, Calif., has heard about a fair number of products and procedures she describes as “scams.”
One of the first clues, she says, is the inability to get straight answers about the product or service.
“All the talk from scammers kind of reminds me of people who say they talk to dead people,” she says. “Don’t you think if they really were talking to a ghost they’d just give you their name, not ‘I think I get a feeling for a name with a J, maybe Jim or John’?”
If the treatment in question were real, she says, reputable doctors would be “shouting it from the rooftops.”
Other signs of a scam include:
- claims backed by testimony from individuals, not scientific evidence;
- no rigorous, controlled trials;
- the treatment has not been published in a peer-reviewed scientific journal;
- the treatment is only available from the source that’s offering it;
- attempts to contact the person advertising the treatment are ignored; and
- product Web sites are forever “under construction,” forcing interested parties to make contact by phone.
|Sharon Caruthers says the discovery of a legitimate therapy for ALS will be publicized by reputable physicians, not marketed by an unknown individual or group through an obscure Web site.
“There have been dozens of compounds that have been in large clinical trials for ALS that have all failed,” says neurologist Katalin Scherer, who directs the MDA/ALS Center at UPH Hospital in Tucson, Ariz.
“So someone’s claims that what they’re selling will cure ALS or prolong survival are highly unlikely to be true.”
Wanting to believe
People with ALS always are potentially vulnerable to misinformation on therapeutics, says John McCarty, director of therapeutic investigations at the ALS Therapy Development Institute (ALS TDI) in Cambridge, Mass.
“There seems to be a time, associated with coming to grips with the diagnosis and the implications, where many folks simply can’t believe that at least some of these various claims aren’t true,” he says. “After all, most of us are inclined to assume the best of people and intentions, and are used to believing what we read.”
McCarty notes that problems sometimes arise when people with ALS seek out research publications, perhaps for the first time in their lives, and try to make sense of them.
This “may set up folks for frustration and exposure to quack therapists,” he says.
Also complicating matters is the very nature of the claims themselves.
“Many of the unlikely-to-benefit therapies have a kernel of real, possible science at the core — or at least something that was considered as possible by scientists at some point,” McCarty explains. “Thus, many of these quack therapies are like pearls — attractive in that a clinic, for example, can build lustrous promises over a grain of rough science. But the proven clinical effectiveness is simply not there.”
The right to try something
With the exception of riluzole (the only FDA-approved drug for ALS, which provides modest benefits for some with the disease), people with ALS “have no options,” Caruthers says, adding that it makes sense that they “should be able to try something” as opposed to simply dying.
|Katalin Scherer recommends that anyone who chooses to try an unproven therapeutic should talk to their doctor about it.
Scherer acknowledges that this sentiment is often at the heart of an individual’s decision to try unproven therapeutics.
“They want to know, ‘If I’m going to die anyway, why can’t I try this, that or the other?’”
Scherer reminds her patients that, although death may come earlier because of ALS, “there’s no guarantee and no predicting for them or for any of us.”
She emphasizes that ethical and moral obligations don’t permit physicians to encourage patients’ use of untested therapeutics. Importantly, she notes, some compounds which have been effective in animal trials have not worked in humans — and a handful actually have proved harmful to humans.
“The first oath we take when we become physicians is ‘Do no harm,’” she says. “If someone has an incurable disease, it doesn’t give us license to try whatever we want in hopes of making it better, because ultimately it could be harmful.”
McCarty suggests that patients consider “whether to embark on a particular unproven therapeutic route, or how one can best contribute to the research efforts and thus ensure this is the last generation of patients with the untenable situation of facing a fatal disease with no obvious therapeutic options.”
Information and misinformation
When it comes to avoiding scams, the main thing to remember is, the more information, the better. Good information often can be distinguished from bad by assessing the quality and reliability of the source.
“If you Google things [do an Internet search], be wary of where the search results come from,” Scherer advises. Start research at Web sites of bona fide authorities, such as MDA, the National Institutes of Health and the FDA. These often yield references to other credible sites.
Caruthers also advises talking with long-term survivors of ALS who are familiar with the ways of scam artists. “Old-timers” can be contacted online at sites such as:
Tell your doctor
Scherer recommends that those who’ve decided to try an unproven therapy talk to their physician about it.
Although some might be skeptical about revealing such information to their doctors, she says, “In my experience, we’re very open to these discussions. In order to maximize our patients’ safety, we need to know if there’s any potential for hazardous interaction with the prescribed medications they’re taking.”
Sharing their experiences with others in the ALS community is important as well.
McCarty hopes that those who try unproven therapeutic routes “communicate as objectively as possible on the experience. We know as researchers and clinicians that the chance for most of these interventions to help in slowing ALS is essentially null; thus, it’s crucial that those who take that risk communicate their experience.”
“Share,” he urges, “so that others can learn.”
If you find you’ve fallen for a scam, the first thing you should do is let your physician know about any suspect products, supplements or drugs you’ve tried. Report consumer fraud to the following:
You also may want to spread the word, in person, by phone, e-mail or Internet chat groups/forums, so as to help others with ALS avoid falling for the same scam.