Monday, 16 February 2015

Thoughts On Stem Cell Research & Treatments

Many will have read about the story earlier this month of a young woman with cystic fibrosis, Roisin Kelleher, who travelled to the Dominican Republic in order to undergo a controversial stem cell procedure. Here, our Chief Executive, Ed Owen, reflects on the difficult issues the case raises and why the Trust cannot recommend others pursue the same course:

There’s been much interest and debate on the use of stem cells as a potential transformational therapy for cystic fibrosis in the wake of publicity around Roisin Kelleher’s story.

Roisin is 20 years old and lives in Kent. She is dependent on oxygen, has been recently diagnosed with pulmonary hypertension and has been told by her clinical team that a lung transplant is probably the only way to prolong her life. Her mum Anntoinette told me when I spoke to her this week, “our lives caved in” at the news and they were desperate to find alternative routes to bring hope for her daughter.

After undertaking a great deal of research on the internet and through other networks, Anntoinette came across the work of a Florida-based physician, Dr Zannos Grekos, who has been promoting a particular stem cell therapy for a range of debilitating conditions, including heart and lung failure. Under his procedure, patients travel to the Dominican Republic where stem cells are introduced into the body intravenously.

Roisin and Anntoinette decided to give it a chance, and raised the funds they needed to travel to the Dominican Republic and undergo the procedure. Roisin is now back home and you can read her personal story on her Facebook page, ‘Breathe Hope for Roisin’.

So what is our view of this particular therapy? It is the question we have been asked by many, including some in the same situation as Roisin who, inevitably, are asking themselves whether they too should seek to undergo this procedure as a way to bring hope of future life.

In answering this question it is important to start by saying that all of us understand the desperation felt by the Kellehers. Theirs is a heartfelt story experienced by many other families touched by cystic fibrosis – and all of us wish Roisin well over the next few weeks and months. Like every other member of the wider cystic fibrosis community, they deserve and should receive full support and love from us all.

But the Cystic Fibrosis Trust does not recommend that others follow their example because it is a procedure that has not undergone the minimum essential procedures to guarantee patient safety. Indeed, the very reason it is carried out in the Dominican Republic is because it is not authorized by the US regulators, the FDA.

I have been in contact with a number of cystic fibrosis experts in the UK and in the US over the last few days, and none believes that this procedure has any scientific or clinical basis. It should also be pointed out that, in 2013, the Florida Board of Medicine removed the medical license of Dr Grekos for committing medical malpractice in performing an “unproven” stem cell therapy on a patient who later died. The board's vote was unanimous and without discussion, although I understand he may be appealing this decision.

I admire Anntoinette’s spirit and deep love for her daughter.  She accepts their decision was a “leap of faith”, and is also keen to point out that Roisin continues to take her existing treatments and is still going through a transplant assessment here in the UK.  She also understands the position the Trust takes on this issue.

And what we all very much agree on is the need for more research into the use of stem cells in cystic fibrosis.

For all the professional scepticism about Dr Grekos’ procedure, there is a great deal of enthusiasm within scientific and clinical circles for the longer-term potential offered by stem cell research. The Cystic Fibrosis Foundation in the US is looking to invest heavily in this field  and we, too, are exploring some innovative areas of work in this area which we hope to announce soon.

This is not work that is going to bring potential clinical therapies soon, and we are some way from even early stage clinical trials. But it is a genuinely exciting area as part of our mission to beat cystic fibrosis for good, and we will not stop until we get there.

In the meantime, our hearts go out to Roisin at this time, and to all those families facing the daily battle to ensure their loved ones remain with them. You are, quite simply, our inspiration in the fight against this cruel condition.

We are continuing to look into this issue, as we do with all developments in cystic fibrosis care and research. Please do keep an eye out on the Trust’s
Facebook, Twitter and website, as well as this blog for updates.


  1. Great post, Ed - caring and humane, but also rigorous in protecting the best interests of what can be a vulnerable patient population. I think the Trust's position on this matter is spot on. Good luck to Roisin too.

  2. Dr Kate Woolf-May February 2015, part 1

    I have lived with CF for over 55 years and have both ΔF508 genes. I was born at a time when life expectancy was only to the mid teens but I have lived to see four of my consultants retire. I am a single parent with a son of nineteen, who has recently started University. In 1997 I completed a PhD and currently conduct research in the area of Clinical and Health Related Exercise with over 20 years experience of randomised controlled trials using human participants. Therefore I consider I have a holistic view of this recent issue regarding stem cell treatment in CF patients. In my opinion I feel it is fair to say that although our understanding of CF has improved, in reality the treatment has not fundamentally changed in the past 50 years. There are of course better ways to achieve greater nutrition, improved lung clearance and enhanced ways of administering antibiotics, which has increased the life span of some CF individuals but essentially there is no realistic intervention that really treats the cause. Over the years I have heard it all. I have listened to what has been said and I can honestly say that at this point in time stem cell treatment is the way forward.
    As a longstanding researcher, I totally understand the need for research based treatments and is why I am in support of this recent petition to push forward for Clinical Trials into stem cell treatment for CF. However, I also know that even clinically trialled treatments and medications cannot prevent side effects or even deaths. Therefore I feel that Ed Owen’s comment with regard to Dr Grekos’s Regenocyte therapy is somewhat over damming. There are several points here which I would like to highlight. Firstly, most of us are aware that this beautiful planet of ours is unfortunately dominated by power and money crazed humans, namely the oil, drug and insurance companies and decisions with regard to fuel sources, treatments and medication are usually based upon money; with these companies being highly influential in governments and regulatory boards. For example, the recent Ebola crisis could have been prevented and a vaccine produced many years ago but the drug companies saw no financial gain at that time. Were the regulatory board speaking up here? Also there is a long history of revolutionary doctors and scientist receiving a hard time by the conventional medical and scientific community for conducting treatments which were considered controversial at that time. Also for the very sick CF patients whose only option is to sit on a heart and lung transplant list this is not always the answer it may seem. Even if the patient manages to get a donor and the procedure is successful this cannot guarantee more than 10 may be 15 years of life and not without many drugs. As a result, other less intrusive treatments and realistic options should be taken seriously. Therefore, putting the whole issue into perspective, Dr Grekos as far as I am aware has treated 25 CF patients and many others with different conditions. Yes, he has incurred the death of one of his patients and has had his US licence taken from him. However, the death of this patient cannot unequivocally be shown to be as a result of the stem cell treatment and if Ed Owen was to produce a rounded picture then he would have also mentioned this patient had other conditions which may have had a contributing factor. In addition, stem cell treatment whilst expensive is only a fraction of the cost of a heart and lung transplant and for many patients, as far as I understand, stem cell treatment has been shown to reduce the amount and/or need for other medications. This in terms of cost benefit is something that should be very welcome to the NHS at this time of austerity but for the drug companies, which are even more powerful in the US, stem cell treatment may not be so welcome potentially offering them less financial gain. Consequently, Dr Grekos’s treatment by the regulatory bodies may not be the indicator of poor practice that one is lead to believe. Continued ...

  3. Dr Kate Woolf-May February 2015, part 2

    As like most of the CF community I have been patiently waiting for gene therapy, which was promised to produce an effective treatment way back in the 1990s and we are still waiting. There is the promise of other drugs they may partially ‘correct’ the defective cell chloride channels that cause CF, but this is only available for certain genotypes and as of yet not currently unavailable for the ΔF508 patients, though in the pipeline. The development of stem cell treatment seems to be the most promising actual treatment that has ever come our way and I feel that the CF trust should highlight this and give hope rather than focusing on damming those doctors and scientists that are making a difference. Therefore I am in full support of the current petition to get Clinical Trials in stem cell treatment for CF patients. I see this from the view of a patient, a parent and science based research. I also feel that if I were currently on a heart and lung transplant list, I would not hesitate to go against the grain and step into the unknown as stem cell therapy may arguably be the best option there is right now.

  4. Let me first pick up on this quote:

    "As a longstanding researcher, I totally understand the need for research based treatments and is why I am in support of this recent petition to push forward for Clinical Trials into stem cell treatment for CF. However, I also know that even clinically trialled treatments and medications cannot prevent side effects or even deaths. Therefore I feel that Ed Owen’s comment with regard to Dr Grekos’s Regenocyte therapy is somewhat over damming."

    This remark misrepresents the purpose and design of gold-standard clinical trials, which are double-blinded, placebo-controlled and heavily regulated. Of course clinical trials often identify side-effects but how on earth does that relate to Ed Owen's critique of Dr Grekos' therapy?

    There is then a strongly-worded but rather directionless rant about "power and money crazed humans". The example Dr Woolf-May gives as illustration of her argument is as follows:

    "For example, the recent Ebola crisis could have been prevented and a vaccine produced many years ago but the drug companies saw no financial gain at that time. Were the regulatory board speaking up here?"

    I'm afraid this remark encapsulates the poverty of Dr Woolf-May's argument.

    Which "regulatory board" does she believe has the power to instruct private companies to invest in specific areas of research?? The FDA or EMA can't simply order private investors to start work on Ebola treatments. That's not remotely within their remit. Such boards are there to investigate the safety and efficacy of candidate drug treatments. Period. If there is pressure to be applied to prioritise rare disease research, that pressure should be governmental and pertain to which research fields are taxpayer funded. I suspect Dr Woolf-May knows all this, but has put aside reason in order to bash "big pharma".

    And yes, while there is indeed a long history of medical advances being made outside mainstream practice, the reason that modern ethical standards have evolved is to protect vulnerable patients from abuses.

    Those abuses include, for instance, being asked to pay tens of thousands of dollars for "miracle cures" that are unlicensed, unproven and possibly unsafe. Contrary to the conspiracy-theory grade argument being put forward here, regulations are there to protect patients not profit-centres. Why do you think so many drugs, developed at huge cost, fail at Phase 2 and 3 of their trials? It's because they were either not safe enough, or didn't work well enough. And "big pharma" has to write-off the cost... because patients come first these days (thank heavens!)

    If stem cell therapy is truly efficacious and safe, its proponents should take it forward for formal evaluation within the regulatory system of the US. Could it possibly be the case that they don't do this because the experts in the field (and with respect to Dr Woolf-May's academic qualifications in sports science, I'm talking about true experts in stem cells) universally dismiss Dr Grekos' claims as quackery?

    Finally, it Dr Woolf-May's right to feel that stem-cells are the most-promising field in CF... but few CF experts would say that the science is anywhere close to supporting that, for the next decade at the very least. Stem cells, if their promise is delivered on, are a long way from the clinic. But small-molecule correctors and potentiators are making a real difference (and are being subjected to proper scrutiny in clinical trials). RNA editing looks promising. GSNOR-inhibitors, novel mucolytics such as Lynovex... all these avenues offer more promise in the next five-ten years, in my view.

    I'm sorry to have had to use such strong terms, but some people are easily swayed by the title "Dr" in front of someone's name. In this instance, I feel it's important to debunk what was written. I sincerely wish Roisin well, she seems like an amazing young woman who has had a hard road.

    1. You say
      "I'm sorry to have had to use such strong terms, but some people are easily swayed by the title "Dr" in front of someone's name."

      Many of us may agree with you here. However, we are also well aware of the potential 'politics' are work here. Having invested so heavily in other areas, the Trust could be considered to have a 'confirmational bias' in favour of their investments.

      You also seem to imply that we are all so stupid that we should instead be 'swayed' by you and pay no heed to people like Dr MK.

      You may consider her remarks "as strongly-worded but rather directionless rant about "power and money crazed humans", but many of us agree
      that with her about the Big Pharma, and that politics/greed/money/egos and research are all actively in play here.

      You 'suspect Dr Woolf-May knows all this, but has put aside reason in order to bash "big pharma". She's not alone in being wary of 'big pharma'.


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