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Some thoughts about stem cell tourism

Stem cell tourism is a very very tough question. As part of medical tourism it should be a good thing, but problem here is that most of the so-called “stem cell treatments” abroad are illegal or unproven and will cost you something around $20 000 USD.

There are different opinions from experts and patients about this controversial tourism. The seekers basically say “if traditional medicine can not help us and we can not get experimental stem cell treatment here, why shouldn’t we go? We have nothing to lose and we are willing to pay for our last hope!” Experts (aka “stem cell community”) say “It’s unproven, it could be the waste of money and even harmful [1].” Seems like both sides sound reasonable.

What is missing? Information. Widely available reliable free information. This information should come from the experts, using all available media and of course through the internet. What do millions of desperate patients searching for information daily see in the internet? Advertisement of clinics, selling hope. What can community (stem cell researchers and physicians) offer them? Almost nothing!

Citation from the article: Offshore stem cell treatments [2]:

The scientific and medical community could protect patients and its own reputation by providing unbiased public information on the state of the science and creditable medical research.

The one thing we have got in the last year is International Society of Stem Cell Research [3] (ISSCR) Guidelines for the Clinical Translation of Stem Cell Research [4] (pdf) and Patient Handbook on Stem Cell Therapies [5] (pdf). That’s all. But it’s very hard for patients to find this information. Even using YouTube channel [6] ISSCR doesn’t actively promote it. How many physicians who were asked by their patients considered stem cell treatment abroad, actually read those Guidelines and Handbook?

Let’s look at closer to Patient’s Handbook. One citation:

What should I look for if I am considering a stem cell therapy?

You need to be sure that there is good scientific evidence that the treatment is safe and effective, and that your rights as a patient are being respected. To begin, ask for evidence that:
• Preclinical studies (see question 5) have been published, and reviewed and repeated by other experts in the field.
• The providers have approval from an independent committee such as an Institutional Review Board (IRB) or Ethics Review Board (ERB) to make sure the risks are as low as possible and are worth any potential benefits, and that your rights are being protected.
• The providers have approval from a national or regional regulatory agency, such as the Food and Drug Administration (FDA) or the European Medicines Agency (EMEA) for the safe conduct of clinical trials or medical use of a product for this disease.

For most parts of the book you can see “ask your doctor”. But what does the doctor really know?

On the other hand, how can patients trust regulatory bodies or physicians affiliated with company if both of them could have conflict of interest and be corrupt?

one public comment [7] that i like:

I think the sadest aspect of this story is that we don’t know who to believe. No one can be trusted anymore: pharmaceutical companies, government bodies both top of the list of pathological liers…

So, scientific community doesn’t profit from “offshore clinics” (they against it) , but medical establishment could benefit from it.

Despite the efforts of well-meaning parties, this is not a mess that is likely to sort itself out. It seems certain that rules issued by the scientific community will continue to be ignored by many unregulated clinics, and a downside of self-regulation is the potential for conflicts of interest within the scientific and medical communities. (In fact, soon after ISSCR announced plans to draft clinical guidelines, a loose for-profit consortium of clinics announced their own standards of excellence [8], which fall far short of those within the established scientific community).

I think the problem of all that mess between scientific, medical communities, patients and companies (business) is informational gap.

ISSCR and its current president Irving Weissman [9] were advised and finally came up with an idea to create an online database, collected data about all “stem cell commercial clinics” around the world. It was proposed a while ago by experts, but where we are now with this web-site? Why is it taking so long to make it? There were a few tables published already in peer-review journals [10], just pick them up and put them online!

2 days ago I got a email from ISSCR promoting a new web-site Friends of ISSCR [11]:

In 2010, your donation will help fund key initiatives such as:
Unproven Stem Cell Therapies – development of a Web-based resource for patients, advocacy groups, clinicians and associations in evaluating claims of benefit from unproven stem cell therapies…

In 2010? This is my New Year wish!

Well, the community would like to speak, but who will do this? And when? If it depends on our money – go guys, go and donate! We need this database so badly.

So, whom should we blame that the problem persists and is even worsening? I’d like to say that a significant part of this fault should be put on the stem cell community. I’ll tell you why I think so below. Also I’d like to propose what should be done to minimize risks and solve many problems in this tough stem cell tourism question in my opinion.

For stem cell community:
1. Create online database of so-called “offshore stem cell clinics” ASAP! Make it free, searchable, with possibility of discussion and commenting, because it should be a community web-site.
2. Widely and aggressively advertise ISSCR Guidelines, Patient Handbook and other related documents by other regulatory bodies using all available channels and social media web-sites. Desperately looking patients should see it easily everywhere on the web – YouTube, Twitter, Facebook…
3. Create a community project (blog), collecting all “bad cases of unproven stem cell therapies”, something like stemcellcomplications.info or celltherapydoesnotwork.info. It will help physicians and patients make a hard decision about a particular clinic.
4. Physicians who ever had experience in sending their patients abroad for unproven stem cell treatment should create a network online and exchange information, experience and opinions about particular clinics. It will save lives and money.
5. All publication in peer-reviewed journals touching this problem should be freely available. If authors need to pay for open access they should do it or the publisher should do it.
For example there are a bunch of great publication on the subject – Selling the Stem Cell Dream [12] or Trading on hope [13]. Great articles, but why aren’t they in open access?
6. Create database of cell therapy clinical trials, which are currently going on around the world. We know that only half of them or even fewer are registered in existent databases such as www.clinicaltrials.gov [14]
7. Create easy-to-use online manual in plain English for patients “How to get enrolled in cell therapy clinical trials” with indication of all available trials around the world.

So far none of the 7 items from my wishlist are done, but I have a hope – at least one should come up in 2010.

For patients:
1. Educate yourself, spend time to find and read reliable information. There is some, not easy to find but there is. Get independent opinion of experts.
2. Create a community network, exchanging your positive or negative experiencies with stem cell treatment abroad. Something like: http://www.patientslikeme.com/ [15] or CareCure [16] it will be a huge help for future seekers.

What is your thoughts about stem cell tourism?