I was also surprised about the one comment where the person said they were never told that the treatment was an experiment. The desperately ill are easy prey. If there was a miracle cure out there, the world would have heard about it. How could the person not realize this some might say. They would be astounded that someone would just hand over $50,000 and think that the treatment was not experimental and that it had proven efficacy. The real problem however is that desperately ill people or those with desperately ill children do not think clearly at all times. They have to become more savvy. I feel badly that they were duped and I thank you for bringing this clinic to the attention of anyone reading this forum.
That being said, if something sounds too good to be true, if you think you have hit upon the miracle you were looking for based on a sales talk with someone from a clinic, then check that clinic off your list and move on with your search. Reputable clinics have you sign an informed consent. They do not make promises nor claim there is a cure.
Here in the U.S., we need to continue to fight for the right to use our own stem cells in clinically relevant treatments. If stem cell treatment and other alternative treatment is the practice of medicine as it should be, then we are given protection from unscrupulous doctors. We have the opportunity to sue them. Doctors also must be licensed to practice medicine in the state where a patient is treated. Instead the FDA and the research community insists they are "protecting" us by regulating our own stem cells as drugs, which means years of waiting. This forces patients to look offshore for treatments and this can result in exactly what happened at this clinic in China. There are some good offshore clinics, don't get me wrong, but there really is no recourse for patients legally as far as I know.
Thank you for the information.
Progenacell is currently my first choice. Can you share what kind of complaints you received about them.
Thank you! This forum is so valuable, and a great service to the community!
Someone named Doug Herich joined this forum last May and said he was Director of Patient Services for ProGenaCell. He made a few posts on this forum stating he was here to educate all of us. When I explained the rules to him that we do not allow the promotion of services from sales reps, doctors or anyone selling something without the approval of either Jeannine or me, he began e-mailing me privately with some pretty nasty e-mails directed at what he indicated was my ignorance if xeno transplantation. He claimed his son had kidney disease and had benefited greatly from treatment and that he was not selling anything.
Here is part of an e-mail he sent me:
"I look forward to establishing and building a long term relationship with you, your partner Jeannine and your growing membership base. We strive to keep the public at large informed of the latest advancements and treatments that we make available to Americans and patients located around the globe. Safety, efficacy and staying within the legal guidelines established by the FDA and other government agencies are of foremost concern. Everything we offer to our patients is 100% legal and the protocol we employ is tried and true which means we are far beyond the "research" stage and have been in the "application" stage for well over 30 years. Our own Dr. Ulrich Friedrichson opened his treatment clinic located in southern Germany way back in 1976 and his reputation today is nothing short of iconic. He currently treats more than 240 patients every day of the week, has both Phd and MD designations with emphasis in oncology and auto immune related dis-ease. We also have other highly respected MD's on our team that are willing and able to field questions from your members."
If this doctor treats 240 patients every day of the week, that is 1680 patients weekly which equates to 87600 patients a year. Wow, that's a lot of patients being treated.
When I told him I was going to check with the FDA as far as the legality of the treatment, he sent another e-mail stating it wasn't the FDA he had meant, but U.S. Customs that allowed the product to be brought into the U.S.
"If you are going to check on the legality of patients bringing their own stem cell medicine in from our sister clinic in Germany (after the initial 5 day treatment, they are given product to administer for the next 20 days), it's actually not the FDA that regulates the legal entry of our stem cell product into the USA....it is the U.S. Customs office (under DHS) right here in Los Angeles (LAX) and I have a name and phone number of the regional director for your convenience should you wish to verify this with him. His name is Andrew Seaborn Ph: 310-594-0836 and I would suggest you ask HIM if frozen stem cell product are considered "live cells" by his department. The average person understands that live cells do not stay alive when they are cryopreserved....nothing can live at temperatures of -50C which is the temp that our product is flash frozen. "
He did not heed the warning about promotional posting so we eventually had to ban him from the forum. He kept up for awhile with the personal e-mails, but eventually I heard no more from him until he started the same thing on another blog with a PhD friend of mine.
A few months ago I heard from a forum member who was none too happy about his encounter with this company. Doug Herich is apparently no longer with the company although I can't verify it or know for sure if he was a real person even, but this member was not happy and felt he had been duped and pressured. I did post a notice about it, however, the owner of the company contacted the executive director of ICMS and said he would sue us if I didn't remove the post. I do not fold under such threats, however, in this instance the member making the complaint was scared and unwilling to post about the experience or allow me to post the e-mail correspondence that was made. At that point, I did remove the warning post because the information I received from the forum member should have, in all fairness, been posted by that member I felt. At this point, I would recommend that patients interested in this type of treatment contact the FDA or a major research facility. We have no interest in xeno transplantation discussion here.
The internet seems to be scrubbed free of Doug as far as his ProGenaCell connection as are some links he sent me. He also said he was starting his own blog that would outdo this forum. I have no clue what happened to him or his blog.
The sheer volume of patients that Herich said had been treated and the number of years this has occurred (according to him) would make this clinic one of the largest in the world. Why would any patient want to keep that a secret? The internet should be full of information about these patients and their successful treatments they got at ProGenaCell. Unfortunately, I have been challenged by not being able to find any testimonials, published papers, etc.
This came up in a search for Doug Herich. Another patient unable to find any information. Where are all those thousands of patients? I am hoping that the company itself will start making them accessible.
Thank you so much Barbara!
My contact's name is Greg Di Rienzo <firstname.lastname@example.org>
He seems like a pretty level headed guy, but is a salesman type. He talks fast, and wants to dominate a conversation.
I asked for some contacts with patients who had conditions similar to mine, and he said I could contact the three people whose stories he had included in one of his earlier emails. When I asked for their emails, he was afraid of HIPPA, and would not do so.
One part of their treatment is to send the patient home with frozen stem cells to be injected at intervals after the initial treatment. Do you know if this sounds legitamate? I did some research, and it seems there is a very detailed procedure required to successfully un-thaw stem cells. Have you heard of this kind of treatment before?
Thank you very much!
Yes, Greg is the one who contacted ICMS. Mike, I can only say that if a patient wants to share an experience with you, HIPPA would make no difference. Greg would need their permission however to give you their contact information. I'm sure if they had successful treatment, they would be enthusiastic about letting someone else who was suffering know about it. At least I hope they would. And with a pool of tens of thousands of patients like Doug wrote about, I would ask if a few could be rounded up that would agree to speak to you. We have not had one person on this forum who got treatment at ProGenaCell. I hope Greg will ask some of them to provide testimonials.
We all want to feel better, but in our quest to do so, we sometimes don't ask ourselves the right questions. If you were buying a product that didn't involve something as emotional as your health, would you feel comfortable listening to a sales pitch from someone who dominated the conversation? Would you be okay with being told that due to the company's policies that the sales rep could not give you any technical reviews or let you talk to other customers about the product? Would you be willing to pay a lot for the product not knowing if it did what the sales rep told you or even if it was safe to use? These are things we should all consider when contacting any clinic in my opinion.
It's also a good idea to check on the credentials of who is involved in the company as well as checking out where the company is incorporated. In this case, the company is incorporated in Nevada. I only bring this up because I had a bad experience myself. If a patient should need recourse, how easy would it be to take legal action? If treatment is done outside the U.S. that further complicates matters.
It truly is hard to keep emotions out of making a decision when it comes to our health. I have been guilty myself of only hearing what I wanted to hear. It was a very expensive lesson for me and one that I do not care to repeat. Good luck in whatever you decide. Please keep us posted.