A website for five affiliated , hails a 鈥渂reakthrough鈥� for Parkinson鈥檚 disease:聽鈥淪tem Cells Replace Damaged Nerves, Reverse Symptoms.鈥�
For those of you whose lives 鈥斅爋r whose loved ones鈥� lives 鈥斅爃ave been upended by chronic or incurable conditions such as Parkinson鈥檚, that鈥檚 just the kind of breakthrough you鈥檝e been waiting for.
But today, I鈥檓 going to pass along some advice about these and other for-profit stem cell treatments that you probably don鈥檛 want to hear:聽鈥淪teer clear of them. They鈥檙e probably taking advantage of you and it鈥檚 probably unproven,鈥� says Lawrence Goldstein, director of the at聽UC San Diego Health.
Stem cell science is a relatively new field. Stem cells hold for medicine because of their ability to develop into different types of cells in the body, and to repair and renew tissue.
But so far, the only stem cell treatments approved for wide use in the U.S. involve stem cell transplants from bone marrow or blood for patients with certain cancers and other disorders, says Sidney Golub, director of the Sue and Bill Gross at the University of California, Irvine.
Meanwhile, dozens of experimental stem cell treatments are being tested across the country in clinical trials on human subjects.
鈥淭here are some really exciting developments showing great promise, but they are unproven at present,鈥� Golub says.
If most stem cell therapies are unproven, how is it that 聽offer costly stem cell treatments for both cosmetic and medical purposes, ranging from spinal cord injuries to ?
California has 113 of these clinics, more than any other state, according to stem cell researchers of the University of Minnesota and of the University of California, Davis. Florida comes in second with 71, followed by Texas with 37.
Many of these clinics say they use stem cells derived from patients鈥� own fat and, for related reasons, argue that their treatments are exempt from the U.S. Food and Drug Administration鈥檚 rigorous approval process.
Their websites show heart-wrenching from patients who have undergone treatments and believe they have benefitted. The treatments can cost $15,000, $25,000 or more, and generally aren鈥檛 covered by health insurance.
If you鈥檙e swayed by the testimonials, if you鈥檝e tried every other treatment, and even if you have the money to burn, you should still steer clear, according to nearly every expert I consulted.
鈥淚f somebody is telling you something that鈥檚 too good to be true, it鈥檚 too good to be true,鈥� Golub says.
In addition to spending thousands of dollars on a therapy that may not help, you could experience undesirable medical side effects, they warn.
鈥淭he risk is far greater than the potential benefit,鈥� says Mary Bass, director of public policy at , a patient advocacy group that supports stem cell research for chronic diseases and injuries.
鈥淭here are really no shortcuts in the scientific discovery process. Shortcuts come at grave cost to patients鈥� health, now or down the line,鈥� Bass says.
The FDA, too, says in a statement for consumers that it is that patients may be 鈥渧ulnerable to unscrupulous providers of stem cell treatments that are illegal and potentially harmful.鈥�
Kevin McCormack, director of patient advocate outreach for the (CIRM), the state鈥檚 stem cell agency, acknowledges that patients don鈥檛 want to hear this kind of advice.
鈥淭hey鈥檝e often explored every other option and don鈥檛 have anything left,鈥� McCormack says.
But there may be something you can do, he says: Search for a scientifically sound clinical trial that is testing a stem cell therapy for your condition.
One trustworthy place to look, McCormack says, is the 聽鈥� three clinics in Southern California specializing in stem cell clinical trials that are funded by CIRM. They have more than for conditions ranging from HIV to ovarian cancer, he says.
鈥淚f there鈥檚 something at one of those clinics, you know it鈥檚 legitimate and as safe as can be,鈥� McCormack says.
To find other stem cell clinical trials, start with the government-run database.
But be cautious. Some for-profit stem cell clinics post on that site, and patients who want to participate in their 鈥渟tudies鈥� for the cost of the treatment.
If you identify a trial that might fit your situation, do some digging, says Cathy Danielson, based in Oregon.
鈥淪tart asking questions, start posting on online forums,鈥� she says. 鈥淎sk who funded it. Follow the money.鈥�
Goldstein urges patients to look for trials that are conducted by academic medical centers or non-profit medical institutions, and to ask study sponsors if they have received FDA approval for their trials.
鈥淧atients will recognize legitimate clinical trials because, in general, they won鈥檛 be charged for the cost of the treatment,鈥� he says.
Finally, if you find a trial, there鈥檚 no guarantee you鈥檒l receive the experimental stem cell treatment. That鈥檚 because in most trials, some participants 鈥斅燾hosen randomly 鈥斅爓ill receive either a placebo or the current standard of care, while others will get the experimental treatment.
In other words, there are obstacles to obtaining stem cell therapy at this point.
鈥淏ut things are hopeful,鈥� Bass says.
鈥淲e鈥檙e really on the verge of . The hard part is remembering to have the patience and understanding about the scientific discovery process.鈥�
This story was produced by , which publishes , an editorially independent service of the .