Hyped up hope: Shady stem cell clinics take advantage of desperate patients

Patients with diabetes or Parkinson’s disease can be cured with stem cells at a clinic in China. Multiple sclerosis, stroke and cerebral palsy are treated at a stem cell clinic in Mexico, and in Thailand, the deadly disease ALS can be cured with stem cells… at least according to advertising from these and other clinics around the world. Desperate individuals travel there in what has been called ‘stem cell tourism’ or ‘stem cell pilgrimages’.

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Ethnologist Susanne Lundin. Photo: Mikael Risedal

The first of the two terms is best suited to travellers with relatively mild diseases – those who want to fix their bad knee or ageing skin using stem cells. The second better suits the more serious cases. These patients suffer from life-threatening diseases, and, like pilgrims at the holy shrine in Lourdes, are desperately grasping at every hope of a cure.

Professor of Ethnology Susanne Lundin prefers to use the neutral term ‘stem cell travel’. She has previously conducted research on egg donation and organ donation, which have given rise to a major international trade in a legal grey area.

The stem cell trips are different from travel for egg and organ donation in that they do not usually involve poor people giving away parts of their body. Those who risk exploitation in the stem cell business are rather the patients themselves, who may be lured with false promises of a cure. However, the research questions on the interplay between culture, economics and modern biomedicine are the same.

“What is the effect of the media’s and popular culture’s images of scientific development? To what extent are people responsible for their own health – does their responsibility include travel to other continents for treatment? What are the implications for the health service and for our values when body parts and cells are transformed into commercial goods? These are some of the questions we want to study”, says Susanne Lundin.

One of her research projects in the field has the telling title “Health, Hope, Bioeconomy”. The word ‘hype’ could also have been included, as the hype surrounding stem cell research has been huge. It is not just unscrupulous clinics that exaggerate the hopes for the area – researchers, politicians and journalists have also enthused about this promising new field for at least a decade. Hopes are also fuelled on blogs and chat sites where patients exchange tips and experiences.

However, serious doctors and researchers cannot give a lot of hope in the near future, at least not for treatment of diseases such as Parkinson’s and MS. Instead, they are forced to explain to desperate patients that stem cell treatment is currently still at the trial stage, and there are few scientifically tested applications.

Deniz Kirik is a Professor of Neuroscience at LU and one of Susanne Lundin’s research partners. He is also someone who often talks to patients and their relatives.

“Almost every week I get a phone call from someone who is grasping at straws”, he says.

Once, Deniz Kirik received a call from the mother of a child who was in a coma following a drowning accident. She could hardly speak for crying, but wanted to ask what he thought of a certain stem cell clinic in Germany. Another time it was the son of a man who was losing his sight, who wanted to hear the Lund researcher’s view of an Indian clinic that claimed it could cure blindness.

“I work as a researcher as well as being a doctor, and I am often at a loss to answer their questions. Yet neither can I dismiss these desperate people by quickly hanging up”, says Deniz Kirik.

The problem as he sees it is that the genuine research in the field progresses very slowly. People’s expectations have raced ahead, which leads to disproportionate hopes.

Neuroscience researcher Olle Lindvall has met patients seeking help throughout his research career, not only in the context of stem cells:

“Once I met a man who had travelled all the way to Lund and sought me out at work. ‘Can I get a transplant?’ he asked. That was transplanted nerve cells, not stem cells, but the disparity between hope and reality was the same.”

Many patients write rather than ringing or visiting. Then it is easier for the researchers to control their own emotions, but the responses still have to be as well-reasoned as possible.

“For the patient, my reply might be the most important letter he or she ever receives. I therefore try to answer with respect, even if the message is that what they hope for is impossible”, says Olle Lindvall.

He has worked with American Professor of Bioethics Insoo Hyun to try and develop international regulations on stem cell treatment. However, it is difficult because of the strong interests in the area.

One group of stakeholders are the patients from over 60 countries who travel abroad for treatment. Another is the clinics, who often work together so that what is illegal in one country is carried out by a partner in another country. A third is governments, who often encourage an activity that brings in money and strengthens the country’s biomedical profile. In the research community and industry, there are also those who see the semi-legal treatments as a good way to bypass normal, expensive clinical trials.

It could therefore, as Insoo Hyun has summarised the matter, “get much worse before it gets better”. The closer the research comes to practical applications, the more insufficiently tested methods will be offered, before researchers find out what really works.

Ingela Björck