Some thoughts on patient contact about stem cells

Lately on average patients or patient relatives contact me about stem cells more than once a week. That’s about 50 times a year.

The patients or their parents have questions about stem cells most often. Sometimes they have comments about this blog. Other times they ask for medical advice from me.

Because I am a Ph.D. scientist  I do not ever give medical advice, but I often have fruitful discussions with patients about stem cell science and the realities of stem cell interventions.

The most frequent kind of contact I have is with parents of autistic children. The second most common contact is made with me by patients who themselves have Multiple Sclerosis (MS). Many other diseases come into play as well in these contacts.Stem Cell Patients Questions List

The parents of autistic children are often desperate for some kind of hope and are exploring stem cell therapies. Often they ask me for recommendations for specific clinics or my opinion on “which type of stem cell is best for autism”.

I do not believe that any stem cell treatments by any stem cell clinics currently offer any realistic hope for treatment of autism. So to be ethical I must tell them that, but I try my best to be understanding and supportive at the same. I also tell them about my concerns about safety. I also tell them I have doubts about the clinical trial ongoing for autism with stem cells. Finally, I tell them there is hope for the future for the use of stem cells, but it is still early days for the field.

The same kind of situation holds true for how I discuss things with MS patients. I just do not believe that IV injections of stem cells realistically do anything that has been proven to be good for MS patients. Here again there are safety concerns. Perhaps at some point stem cells will in some form be shown to safely help MS patients, but that is not true today.

I point them towards my top 10 list of questions that they should ask doctors and clinics selling stem cells. See the list in summary form above that can be printed and taken with you to the stem cell clinic.

In both the case of autism and MS (as well as other diseases) I point out that clinical trials are available, but I also stress that clinical trials have risks too. At least, however, an FDA-approved clinical trial usually means patients will be treated with respect, not charge exorbitant fees, and will receive proper follow up by a trained physician.

I also point out to potential stem cell patients that by traveling to other countries they may increase their risk or the risk to their children because regulatory laws are weaker in most places outside the US. In many countries there is no such thing as malpractice law either and many clinics have no contingency plans for what do if something goes wrong such as if patients become septic or have catastrophic autoimmune reactions.

I have thought long and hard as well as gotten outside expert advice about how best to be supportive of patients without giving medical advice. I believe the approach I described above is the best even if it is imperfect and still evolving.

In the end I hope through these overall educational efforts and my being a respectful listener that I help patients and their families overall.

Recruiter-patients: how common & corrupt is this practice at US stem cell clinics?

How do dubious stem cell clinics get patients in the door to make money?

In part they do this via the Internet via the clinics’ own websites.

There are also patient websites, some secret, which may serve ad recruitment tools for specific clinics.

A more general tactic may be the use of so-called “recruiter-patients”.

There is an interesting article from 2011 on this practice in India: Recruiter-patients as ambiguous symbols of health: bionetworking and stem cell therapy in India .

What is a recruiter-patient?

A recruiter-patient is a patient of a specific, for-profit stem cell clinic who is used by the clinic to recruit more patients.

In exchange the recruiter-patient (most often secretly) receives either cash or discounted future treatments for themselves or family members. Apparently, some recruiter-patients recruit for specific clinics, while others push for many clinics.

A similar category of stem cell trickster is the stem cell facilitator, who makes money by directing patients to specific clinics through hype, while not necessarily pretending to be a patient.

The article indicates that this practice is common in India amongst stem cell clinics.

How common is this practice in the US?

Of course it is difficult to know because clinics and recruiter-patients hide what they are doing. Why? It is a form of fraud, potentially something that even could be criminally prosecuted.

However, from talking with stem cell clinic patients who received treatments here in the US, it is clear that the practice does occur in the US.

In India, recruiter-patients work for both adult stem cell and embryonic stem cell clinics.

At other times, it is unclear whether a patient who advocates for a clinic is actually a recruiter-patient or simply a very enthusiastic customer who wants to “spread the word”.

In the article on India, they express serious concerns about this practice:

It is difficult to determine whether such testimonials genuinely portray patients’ experiences of improvement in their medical condition and gratitude towards service providers. But there is no doubt that such testimonials are compelling in nature and content. Stem cell providers, then, exploit the symbolism of “cured patients” to attract new patients. Although it is not clear if “the cured patient” is a grateful patient, or a person paid to act as one, the symbolism of “the cured patient” is crucial to the connection between all involved.”

I think patients have an ethical duty to each other and to potential future patients to not over-sell clinic treatments, especially not in return for secret kickbacks or some other compensation.

Lessons from patients: stem cell clinical trials unlikely option for most patients

This is the first in a new series of posts I’m doing in lessons I’ve learned from the ever-increasing number of patients who contact me directly or are readers of this blog who make great comments.

Today’s post is focused on the lack of availability of and exclusions of the vast majority of patients from clinical trials, an issue that I believe many stem cell researchers are largely unaware of at this time.

The standard advice in the stem cell field is to encourage patients to avoid unlicensed stem cell treatments like the plague and opt instead, if possible, for stem cell clinical trials.

An important question remains: just how realistic are the chances for most patients to get into clinical trials?

The answer is that the average patient has at best low odds of getting into a relevant clinical trial for their disease in general and almost zero chance for many individual diseases.

To be clear, I’m not saying I advocate unlicensed stem cell treatments. I don’t. In fact, I advocate against them because I have not seen evidence they are safe and effective.

However, at the same time, we in the stem cell field need to talk more with patients about the realities they face including (A the rarity of and (B) exclusion of most patients from clinical trials.

One can be excluded from clinical trials for countless reasons ranging from one’s age to one’s other conditions to the way the disease in questions manifests in you.

For example, many patients with various diseases contact me and tell me they have tried unsuccessfully to become participants in clinical trials.

Again I’m not saying this makes it logical to get an unlicensed, non-FDA approved stem cell treatment. I think that in fact such treatments have little chance of benefiting patients and many risks. It is somewhat understandable that the designers of clinical trials want to focus on very narrow populations of patients to limit variability in the outcomes.

But we in the stem cell field need to be aware of realities faced by patients. It is so important for all us in the stem cell field to understand as best as possible the obstacles that patients face.

Patients have a lot to teach us just as we can teach them. One lesson from them for me and probably for you too if you are a scientist is that one, as a patient, cannot simply decide to join a clinical trial for one’s particular disease. Trials may not exist and if they do, few patients can join them.