A few weeks ago we noted stem cell highway, a documentary about the growing trend of international stem-cell tourism, and this week it seems we have a tragic real-world example of it. According to the Brisbane Times, Kellie van Meurs, a woman with “Stiff Person Syndrome” (or SPS) undergoing an experimental stem-cell treatment has died in Russia. Stiff Person Syndrome (according to wikipedia, so “your mileage may vary”) “is a rare neurological disorder of unclear etiology characterized by progressive rigidity and stiffness” and is quite rare, affecting only one in a million people.
The article states:
She travelled to Moscow in late June to undergo an autologous haematopoietic stem cell transplant (HSCT) under the care of Dr Denis Fedorenko from the National Pirogov Medical Surgical Centre.
The transplant – more commonly used for multiple sclerosis patients – involves rebooting a patient’s immune system with their own stem cells after high-dose chemotherapy.
Ms van Meurs was Dr Fedorenko’s first SPS patient, and her husband Mark said she died of a heart attack on July 19.
The HSCT procedure is still awaiting approval in Australia and Kellie apparently felt it was her best option:
Ms van Meurs was inspired to make the journey to Russia after seeing the success that Gold Coast woman Kristy Cruise – who suffers from MS – had enjoyed with HSCT.
The two women became close friends after Ms Cruise’s Moscow treatment was profiled in a March episode of 60 Minutes, and had spoken every day since Ms van Meurs went to Russia.
“Kellie personally told me she felt that without HSCT she had little time left … she had tried all other treatments for SPS and they were giving her very little quality of life and they were becoming less and less effective.
“Kellie’s doctor in Brisbane offered to do HSCT for her here but hospital ethics board approval was very slow and Kellie was deteriorating rapidly … she knew she could not wait.”
Despite the death of Ms van Meurs many people, such as her friend Kristy, strongly defend the treatment:
Ms Cruise said that, since her friend’s death, another four Australian patients had arrived in Moscow for treatment, with about 100 booked in over the next two to three years, showing the confidence in the HSCT treatment.
“Until you live in the body of someone with MS or SPS, you can’t fully understand how much of a struggle it can be … HSCT is still the best thing I have ever done for myself and my family and I would do it again,” she said.
“My MS has been completely halted and I no longer require medications or mobility devices.”
However, the head of MS Australia is more cautious:
MS Australia chief executive Debra Cerasa said HSCT was a high-risk treatment still deemed unproven by the international research community.
“MS Australia wants people considering this treatment to understand it, to know what it involves and to most importantly discuss the treatment with their neurologist to determine if they are indeed suitable candidates,” she said.
“Our colleagues at MS Research Australia are also committed to documenting as much as possible about people who have undergone this treatment and their outcomes.”
Ms Cerasa urged people who had experienced HSCT to share their experiences via firstname.lastname@example.org.
Rebooting someone’s immune system with stem cells after high-dose chemotherapy sounds a pretty hardcore procedure. Only time will tell if this is a safe treatment.