By David Brafman (from a stem cell clinic infomercial event).
With the vast amount of information about stem cells available to the general public, many misconceptions exist regarding stem cells and their potential applications. Paul and other prominent stem cell scientists have done an excellent job of educating the public about the facts regarding stem cells and their potential applications. Nonetheless, over the past several years there has been a proliferation of so-called stem cell ‘clinics’, which promise patients miraculous therapies often for currently incurable diseases and disorders. This is particularly true in Arizona, where some have seized upon unproven stem cell applications and are selling false hopes to the public, especially the large elderly population.
A quick Google search will reveal the extent to which these clinics have spread throughout the Phoenix area. With names such as the ‘Stem Cell Rejuvenation Center’ and ‘Arizona Stem Cell Center’, the pitch of these ‘clinics’ is all the same—They have some proprietary or cutting-edge method of isolating stem cells from a patient’s body and injecting them back into that same patient to treat or even cure any imaginable disease. It’s just that simple!
Like many, I have been shocked by the existence of these clinics and disgusted by the way they are taking advantage of desperate patients. Recently, I attended an informational seminar (more of an infomercial) of one of these local clinics, the Lung Institute (http://lunginstitute.com/). This experience had a profound effect on me and Paul has been kind enough to allow me to share it here. The goal of this post is not to debunk the claims made by this particular stem cell clinic (which is easy to do) but rather share my thoughts on how as scientists we can get involved to stem (no pun intended) the misinformation and false hope peddled by such practices.
I was able to register for the clinic online. Thankfully, I registered early (an hour before the start of the seminar) because according to the registration portal ‘Space is limited – Only 30 seats available.’ The seminar was held in a nice, recently built medical facility in a location in the Phoenix area that was near a retirement community. I had only expected a few other people to be in attendance but was surprised when I had arrived that it was standing room only. By my count, there were over 40 people in attendance and most, if not all, the people in attendance were elderly, many of them had supplemental oxygen, and by my guess suffering from some sort of lung disease. It would seem that these patients were subject to direct advertising methods—or worse—were referred to the clinic by their own physicians. Being there with all these patients also brought home for me in a very direct way just how many people are suffering and looking for hope. I am sensitive to their situations and wish them the best.
The seminar began with the head of the clinic, Dr. Burton Feinerman, providing an overview of the treatment process. He did not go into specifics but stated that his clinic offered three treatment plans for suffers of lung disease (see attached informational pamphlet). All three options are similar in that ‘stem cells’ are isolated from the patient’s blood, adipose tissue, or bone marrow and delivered back to the body through the use of an IV and/or nebulizer. I will not go into all of the claims that Dr. Feinerman made but some of the more outrageous statements he made were as follows:
- In a typical ‘treatment’, 200-500 million stem cells are isolated from the patient. These cells are injected intravenously back into the patient, in which they home with 100% frequency back to the lung. Once these cells arrive at the lung, they differentiate into mature, functional pulmonary tissue.
- These therapies can be used to treat non-pulmonary disease such as ALS, PD, diabetes, etc. Throughout the presentation Dr. Feinerman was careful not to use the word “cure” but instead used words such as “treat” and “help”.
- The “majority” of patients see some beneficial effects from treatment. When later asked by an audience member what percentage of patients see improvement, Dr. Feinerman stated that the percentage of patients that see improvement is around “70%”.
As any reader of this blog with some basic knowledge about stem cell biology would know that these claims are quite dubious. For example, making the claim that stem cells injected to the blood would somehow find their way back to damaged lung tissue and then repair damaged tissue would be similar to me claiming that I could fix your broken iPhone by just injecting some metal into it. It’s just that simple!
I encourage the readers to view other articles about similar dubious claims that Dr. Feinerman has made in the past:
After Dr. Feinerman’s presentation, several patient coordinators shared ‘success’ stories with the audience. Each story had a similar narrative in that a patient suffering from a lung disease came to the clinic because they were out of treatment options. After receiving treatments, the patient’s status improved. In a short period of time, they were able to perform activities that they were previously unable to perform. If it works these patients, it will surely work for you!
Finally, Elise Myers, the head patient coordinator (and former Bachelor contestant—Celebrity endorsement!), shared the next steps patients needed to take in order to sign up for the treatment. At the end of her presentation, she stated that the next round of treatments were going to begin in May. Unfortunately, they were almost fully booked. However, if patients signed up that day they would receive a $2000 discount (as an aside the treatments offered by the Lung Institute have been reported to be in excess of $10,000). Act now to take advantage of this special opportunity!
After Ms. Myers’ presentation, Dr. Feinerman took questions from the audience. The majority of the audience members’ questions where about their particular condition and if the treatments offered by the clinic would be effective in their particular cases. Dr. Feinerman’s response was always an unequivocal “yes”.
At this point I found myself compelled to speak. My original intention of attending this seminar was to just simply observe one of these sessions in person. I had no intention of speaking up or asking questions. However, after observing the questionable claims in person I felt the need to voice my opinion. So, I stated that I was an Assistant Professor in the Department of Bioengineering at Arizona State University who has been performing stem cell-related research for better part of a decade. I commented that from my standpoint the claims that Dr. Feinerman was making about his therapies were dubious and appeared to have no scientific basis. I shared my concern that Dr. Feinerman was selling these patients false hope. Additionally, I encouraged all the patients to research on the internet what other reporters and scientists had to say about the treatments offered by Dr. Feinerman and his clinic. Finally, I encouraged the audience members to perform a simple Google search for ‘Stem Cell Clinics’ to see what other patient experiences have been with clinics similar to the Lung Institute as well as the warnings that the FDA has provided with regards to such clinics.
As I was talking, Ms. Myers’ rushed over and grabbed the microphone from Dr. Feinerman. She told me that “I didn’t know what it was like not to be able to breath”. In addition, unlike FDA-approved clinical trials in which certain patients receive a placebo, that all of their patients receive the “real thing”. I replied that I was not trying to cause a scene or debate them directly but I was simply encouraging all patients in attendance to do their research. Ms. Myer’s replied that the patients have done their research and that many were working with their doctors in coordination with the Lung Institute (that’s a concerning thought—doctors are referring patients to these clinics!). Finally, as I was being escorted out of the presentation, she said “Don’t act like you are the first person to question what we are doing”. Thank goodness!
Obviously, I was not surprised by the reaction I received from the employees of the Lung Institute. However, I was surprised by the reaction of the patients in the audience as the majority echoed Ms. Myers displeasure and were applauding as I was leaving. I certainly was not expecting the audience to give me a standing ovation but this response left me quite disheartened and feeling somewhat hopeless. So, what can we do as scientists or other concerned stakeholders to effectively combat these clinics and ensure that patients are well-informed?
Here are my suggestions:
- Attend an informational seminar offer by a local stem cell ‘clinic’. Most major metropolitan areas have a handful of similar stem cell clinics offering similar therapies as the Lung Institute. As such, many have public informational seminars or webinars. I encourage you to attend one of these seminars or watch one of their webinars. In my experience, attending one of these seminars firsthand is a completely different experience than simply reading about their existence. It will likely not only spark feelings of anger but also give you an experience to share with others. As an aside, I would not necessarily encourage you to speak out because as a former mentor of mine told me “debating members of these clinics is like debating creationists”. However, if you feel compelled to speak, know that if you convince just one person who is considering these therapies to question their legitimacy then speaking out is worth it.
- Educate your colleagues. Amazingly, when I shared my experience with my colleagues (many of whom are stem cell researchers), they were shocked to learn that these clinics exist. In fact, one colleague of mine asked me about a stem cell therapy for baldness that he thought was FDA approved. Misinformation also exists among those with advanced degrees.
- Communicate with patient advocacy groups. One thing I learned from my experience is that many patients considering these therapies have tried all other alternatives and are desperate for any potential therapy. It is understandable that they are looking for hope. So, educating patients about the dangers of these clinics needs to be done in a sensitive manner ideally by individuals that the patients trust. A good way to do this is through patient advocacy groups. For example, a graduate student in my lab who also attended the Lung Institute seminar recently shared his experience with the local chapter of the Cystic Fibrosis Foundation. Surprisingly, there were a few patients that had heard about the Lung Institute and were considering their treatments. Overall, they were grateful that he shared his experience and that he had provided them with information about the dangers of these clinics. Keep in mind that some patients such as some of those at the clinic seminar that I attended may on the other hand get upset with your questioning of the clinics. This may be uncomfortable, but it is important to be respectful of patients and diverse perspectives.
- Share your knowledge and experience with non-scientist friends. You may not know someone who is considering one of these therapies but you will be shocked by how many of your non-scientist friends do.
- Contact your local, state, and federal representatives. I have done this myself and have been frustrated by the lack of response. Nonetheless, it is easy to send your representatives a short, email sharing your concern about these clinics. I have made it a point to send the same email every month. The more people who start doing this, the more likely there is to be a response.
- Contact the FDA. Several of these local clinics have been profiled and questioned by Paul and the national media, yet they continue to exist. Why does the FDA and other regulatory agencies allow these clinics to continue to operate? The issue is complex and Paul has done an excellent job of breaking down the various components. I also agree with Paul that the FDA has dropped the ball with regards to properly regulating these clinics. However, with the proliferation of these clinics, the FDA may simply not know some exist or exactly what they are claiming. Send an email to the FDA at ConsumerInfo@fda.hhs.gov expressing your concerns and share your experiences. Again, the more people voicing their concern, the greater the chance that the FDA will respond.
As scientists or other concerned members of the stem cell community, we have a responsibility beyond research. In the end, I believe eliminating these questionable stem cell clinics will require the involvement of as many scientists as possible as well as other members of the stem cell community. Get involved!
If readers want to discuss my experience or any other related issues, I can be contacted at David.Brafman@asu.edu or readers can leave comments here on this blog post.