This morning my local paper The Sacramento Bee ran a full-page, super splashy ad for the local stem cell clinic, Nervana.
Remarkably the ad says, “As Seen in The Sacramento Bee”, referring to an article by reporter Claudia Buck that ran in the past in the SacBee Insight section that raised many concerns and questions about Nervana. I may have missed it, but it seems like it has been months since the last Nervana ad in the Bee.
What is going on here? It seems like there are few answers still and more questions now.
I’ve written before about how Nervana has had a number of big full-page ads in the Bee. Nervana markets non-FDA approved stem cell offerings for neuropathy and other conditions for which in my opinion as a stem cell scientist there is no solid scientific basis for safety or efficacy.
This new ad takes the cake in this series of ads from the company as it has “Stem Cells” in huge blue font across the top and a very large “Neuropathy” below that in red font. In addition to that dash of splash and the odd mention of the clinic having been discussed in the Sac Bee before, importantly the ad makes medical claims that I see as unproven.
For instance, to my knowledge there is no concrete evidence such as published peer-reviewed articles backing up the ad’s claim of essentially a cure by “getting rid” of neuropathy symptoms. It does qualify that I guess with “may be possible”, but I’m not sure that conditional will sink in for patients. It also makes other medical claims that the treatment is “safe and effective”. Is it objectively known for sure to be those things? Could they have rigorous unpublished data that they’ve run by the FDA that serves as a foundation for what they are doing medically?
Finally the ad has a coupon and says, “over 1,000 patients already served”. If indeed they’ve already done experimental stem cell transplants into that many patients at a cost of say roughly $5,000 each then that is $5 million in money taken from patients. Is that serving the community? Is the SacBee an enabler of guiding patients toward potentially risky, unproven, and expensive medical offerings? Is the FDA still basically sitting out regulating stem cell clinics? What about state regulators in California? Who knows?
I’m going to reach out to Nervana itself again too to try to get more clarity on this situation and their perspectives. The company website still lists Dr. Tushar Goradia as the leader so I’ll try to reach him.
I’ll say my mom and brother pushed for me to have this done in a different SW state. I didn’t want it but within a day of the doctor calling my mom saw hope, I didn’t. They charged far more than $5,000. It was $20,000+ with half put down immediately and the rest due once you got there but you had to ay if not cancelled in a certain number of days. In my situation, it was only two days after the day of the ohone call that the whole amount was due whether I had it or not. My mom, brother and sil flew out with me. I needed two seats on the airplane to lay down the whole way with my legs on four pillows on my mom’s lap. I was crying for 3 straight weeks not wanting to do this. The night before my mom and brother finally said I didn’t have to, but I felt compelled knowing mom was going to lose all that retirement money.
The day of the surgery, the doctor only saw me before the surgery, though we had never met, to say he saw my m9m and brother. I was so upset the anesthesiologist gave me stuff to relax. Evidently, though I have no memory of talking with the doctor doing the stem cell surgery, I talked to hm under the drugs given to me. I know this because he came out and told my mom and brother that he was one minute within not doing the procedure because had made it clear I did not want it done. In my opinion, it makes the doctor just plain greedy, because if he cancelled the surgery, I believe he would have had to returned my mom’s money.
At least, I am not any worse, but I am not any better either. It is now 7 months and I still can’t sit or stand for more than a minute and I can only walk a couple blocks in 20 minutes twice a week. The rest of the time, I am on ultra high dose opioids, due to genetic condition, that just allows me to lay down with legs on 5 pillows for 6-8 hours a day on the sofa. The rest of the day/ night is in bed on my side with a U-shaped pillow. Not much quality of life. I say if you have had a lot of back surgeries and are all ready as bad as I am, don’t even try this, save your money!!! Others I know who were as bad or worse going in ended up far worse off after the injections. Only peole with no surgery to just a simple back surgery seemed to have found some improvement from a group I was in for a while. This not only didn’t help but changed my belief in doctors. He clearly knew I was against the surgery as on the phone the doctor said it was FDA approved. But two days later, when all the money was due, I found a FAQ page on the website and it said it was not FDA approved. I called the FDA and they would not tell me if they were FDA approved or not. The office manager said the trial was FDA approved but stem cells can’t be FDA approved. How is a lay person supposed to make heads or tales out of this. And why won’t the FDA confirm or deny if a certain doctor is indeed FDAapproved. That would have changed my mom’s mind. She feels very guilty now for pushing me into this.
Sorry for such a long post.