I get lots of e-mails and private messages asking me what clinics I think are good clinics. Everyone really has at their disposal information to do this research themselves. The internet has made it possible to access everything from scientific publications to a person's personal experience blog.
In my enthusiasm, I have sometimes not confronted warning signs that I should have. I hope this list will help others. Most people who visit this forum are ill or know someone who is and therefore are vulnerable to taking risks and paying out a lot of money for unproven therapies. It's time to demand more from companies and doctors who are offering stem cell treatment. I am truly disappointed in the lack of evidence that is coming our way to show us that these treatments are of some value. There is only a handful of companies that are accessible to us that are participating in the ICMS accreditation program (that makes their work transparent and that's a good thing for patients) or are FDA compliant and doing their own studies under Investigational Review Boards or other agencies that may act the same in offshore locations. Patients need to ask why. Are the outcomes so far short of the promises they make, that they don't want us to know? Are they not wanting the burden of the extra cost it takes to track patients pre and post treatment? Is it simply all about the money? If they can recruit large numbers of us by simply hiring a few good salesmen or making great promises on a website, are they thinking, why go the extra mile?
I suggest making a list of questions up in advance that you want to ask when you contact a company or doctor about stem cell treatment. When contacting several, ask the same questions so you can compare apples to apples.
I found several online sites that offered suggestions and I have added some of my own as well. If anyone has other suggestions, please feel free to add to these. Pick and choose from the list below when doing your research. These questions are merely suggestions.
Also, don't forget other resources that you can check. In the U.S. for instance, you can contact the FDA to ask about any complaints or describe the therapy being offered and ask if it is compliant with FDA regulations. You can also contact the Better Business Bureau and state medical boards to check on the doctor's credentials. When researching on the internet, don't just type in the doctor's name and the clinic name. Get creative when digging. Look for scams, license suspensions, names of others involved in the clinic besides the doctor(s). Offshore clinics present a more difficult task to research and that is why I suggest using the ICMS offshore guidelines. ICMS is a reliable source. They can also be used to verify U.S. clinics to see if they are in the accreditation program.
1) Is the clinic treating multiple diseases? If so, are they all treated the same way?
2) How long has the clinic been in business? Who owns it? If it is a U.S. company, are you able to verify the information with the Secretary of State in the state that it is incorporated in?
3) How many patients have been treated with your condition and over what time period (years, months)?
4) Does the website make claims and use words such as: not risky, technology that no one else has, high success rates, decades of research, published data, FDA approved, revolutionary, first of its kind, cure? If so, how are these claims backed up?
5) How do they handle emergencies? Is the treatment done in a clinic or a hospital?
6) How well trained is the doctor(s)? How long has he been treating patients using the stem cell therapy that you are inquiring about? What are his/her credentials? Is there just one doctor or are there specialists as well? Are all the doctors medical doctors?
7) Is the staff well trained? How long have they worked with the doctor/clinic?
8) What are the pre treatment requirements? Are they covered in the cost of the treatment quote? What are the post treatment requirements? Does the company have a plan to follow up with patients who have been treated? If so, how long will this follow up be? What do they do with any data they collect? Can you have access to it?
9) Does the clinic participate in ICMS or any other professional organizations?
10) Can you speak with a doctor prior to committing to the treatment? Is this at no charge? Is he available after hours for emergencies?
11) What is the source of the stem cells? If treatment is not done with your own stem cells, is there a certificate of purity you can have access to? If applicable, has the donor's blood been tested for infectious diseases?
12) How is the treatment done? Is there a protocol that is followed? Can you have access to the protocol pre treatment? Is the method spelled out in the Informed Consent? Is an Informed Consent given to you prior to treatment and not handed to you when you walk in the clinic and may feel stressed and pressured to hurry and sign it?
13) Does the cost seem excessive as compared to other clinics? Does it seem too low as compared to other clinics? If you have to have multiple treatments, can you afford to? Is there any discount for additional treatments and can you get this in writing? Are there additional costs not spelled out in the agreement (required testing, supplements, etc.)?
14) If you are injured, can you be compensated? Are you asked to sign all of your rights away pre treatment? Are you required to sign a Confidentiality Agreement? Would this exclude you from discussing your treatment with your own doctor or an attorney if needed?
15) Does the doctor work under an Investigational Review Board (IRB) or an Ethics Review Board (ERB)? If yes, is there proof of this?
16) Has there been any published evidence that this type of stem cell therapy works for your condition? If so, where can it be found? Is the published work done on animals or humans or both? If there is no independent published information backed by medical or scientific evidence, how is the doctor/company backing their claims of efficacy?
17) How many others have been treated at the clinic with the same condition you have? Can you speak with several of them? If you are the first or one of only a few, are you willing to take that risk? Would you subject your child to that risk?
18) What is the refund policy?
19) Can a patient visit the clinic prior to treatment?
20) How do they count the stem cells? How do you know you are receiving millions or billions? Do they manipulate them or store them before they are infused? If so how and where?
21) Is the time taken to explain to you in language you can understand how the procedure works and what the benefits of treatment might be for you or are you simply subjected to scientific and medical jargon that is difficult to understand?
22) If the company uses testimonials, how long after treatment was the testimonial given? So many are highly charged and enthused after treatment. I have had some tell me within a few days how much better they were feeling. Some eagerly agree to testimonials within a few weeks of treatment only to find that the improvements have not lasted several months down the road.
In my enthusiasm, I have sometimes not confronted warning signs that I should have. I hope this list will help others. Most people who visit this forum are ill or know someone who is and therefore are vulnerable to taking risks and paying out a lot of money for unproven therapies. It's time to demand more from companies and doctors who are offering stem cell treatment. I am truly disappointed in the lack of evidence that is coming our way to show us that these treatments are of some value. There is only a handful of companies that are accessible to us that are participating in the ICMS accreditation program (that makes their work transparent and that's a good thing for patients) or are FDA compliant and doing their own studies under Investigational Review Boards or other agencies that may act the same in offshore locations. Patients need to ask why. Are the outcomes so far short of the promises they make, that they don't want us to know? Are they not wanting the burden of the extra cost it takes to track patients pre and post treatment? Is it simply all about the money? If they can recruit large numbers of us by simply hiring a few good salesmen or making great promises on a website, are they thinking, why go the extra mile?
I suggest making a list of questions up in advance that you want to ask when you contact a company or doctor about stem cell treatment. When contacting several, ask the same questions so you can compare apples to apples.
I found several online sites that offered suggestions and I have added some of my own as well. If anyone has other suggestions, please feel free to add to these. Pick and choose from the list below when doing your research. These questions are merely suggestions.
Also, don't forget other resources that you can check. In the U.S. for instance, you can contact the FDA to ask about any complaints or describe the therapy being offered and ask if it is compliant with FDA regulations. You can also contact the Better Business Bureau and state medical boards to check on the doctor's credentials. When researching on the internet, don't just type in the doctor's name and the clinic name. Get creative when digging. Look for scams, license suspensions, names of others involved in the clinic besides the doctor(s). Offshore clinics present a more difficult task to research and that is why I suggest using the ICMS offshore guidelines. ICMS is a reliable source. They can also be used to verify U.S. clinics to see if they are in the accreditation program.
1) Is the clinic treating multiple diseases? If so, are they all treated the same way?
2) How long has the clinic been in business? Who owns it? If it is a U.S. company, are you able to verify the information with the Secretary of State in the state that it is incorporated in?
3) How many patients have been treated with your condition and over what time period (years, months)?
4) Does the website make claims and use words such as: not risky, technology that no one else has, high success rates, decades of research, published data, FDA approved, revolutionary, first of its kind, cure? If so, how are these claims backed up?
5) How do they handle emergencies? Is the treatment done in a clinic or a hospital?
6) How well trained is the doctor(s)? How long has he been treating patients using the stem cell therapy that you are inquiring about? What are his/her credentials? Is there just one doctor or are there specialists as well? Are all the doctors medical doctors?
7) Is the staff well trained? How long have they worked with the doctor/clinic?
8) What are the pre treatment requirements? Are they covered in the cost of the treatment quote? What are the post treatment requirements? Does the company have a plan to follow up with patients who have been treated? If so, how long will this follow up be? What do they do with any data they collect? Can you have access to it?
9) Does the clinic participate in ICMS or any other professional organizations?
10) Can you speak with a doctor prior to committing to the treatment? Is this at no charge? Is he available after hours for emergencies?
11) What is the source of the stem cells? If treatment is not done with your own stem cells, is there a certificate of purity you can have access to? If applicable, has the donor's blood been tested for infectious diseases?
12) How is the treatment done? Is there a protocol that is followed? Can you have access to the protocol pre treatment? Is the method spelled out in the Informed Consent? Is an Informed Consent given to you prior to treatment and not handed to you when you walk in the clinic and may feel stressed and pressured to hurry and sign it?
13) Does the cost seem excessive as compared to other clinics? Does it seem too low as compared to other clinics? If you have to have multiple treatments, can you afford to? Is there any discount for additional treatments and can you get this in writing? Are there additional costs not spelled out in the agreement (required testing, supplements, etc.)?
14) If you are injured, can you be compensated? Are you asked to sign all of your rights away pre treatment? Are you required to sign a Confidentiality Agreement? Would this exclude you from discussing your treatment with your own doctor or an attorney if needed?
15) Does the doctor work under an Investigational Review Board (IRB) or an Ethics Review Board (ERB)? If yes, is there proof of this?
16) Has there been any published evidence that this type of stem cell therapy works for your condition? If so, where can it be found? Is the published work done on animals or humans or both? If there is no independent published information backed by medical or scientific evidence, how is the doctor/company backing their claims of efficacy?
17) How many others have been treated at the clinic with the same condition you have? Can you speak with several of them? If you are the first or one of only a few, are you willing to take that risk? Would you subject your child to that risk?
18) What is the refund policy?
19) Can a patient visit the clinic prior to treatment?
20) How do they count the stem cells? How do you know you are receiving millions or billions? Do they manipulate them or store them before they are infused? If so how and where?
21) Is the time taken to explain to you in language you can understand how the procedure works and what the benefits of treatment might be for you or are you simply subjected to scientific and medical jargon that is difficult to understand?
22) If the company uses testimonials, how long after treatment was the testimonial given? So many are highly charged and enthused after treatment. I have had some tell me within a few days how much better they were feeling. Some eagerly agree to testimonials within a few weeks of treatment only to find that the improvements have not lasted several months down the road.