Brisbane mum dies undergoing stem cell therapy in Russia
Supporters of a Brisbane mother-of-two who died while undergoing a controversial stem cell treatment in Russia say it did not cause her death, nor have others been discouraged from seeking it.
Kellie van Meurs suffered from a rare neurological disorder called stiff person syndrome, which causes progressive rigidity of the body and chronic pain.
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.
“I do know that Rosemary [Ms van Meurs' aunt and carer in Moscow] felt she received the best possible care, especially from Dr Fedorenko,” he said.
“Given her level of constant pain and overlapping auto-neuronal problems I still don't think we had a better 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.”
Ms Cruise said her friend had also been diagnosed with chronic inflammatory demyelinating polyneuropathy, in which immune cells attack the nerves in the body, during pre-HSCT testing in Moscow.
“Kellie was very upset her Australian doctors had missed this,” she said.
“SPS damages the muscles of the diaphragm, heart and lungs. While HSCT does place the body under some pressure from the chemo, it is possible that Kellie's heart attack could have happened at home anyway.”
Two days before her death, Ms van Meurs wrote on her Facebook page about her progress.
“Things are going a little tough at the moment and I'm having to have blood transfusions and platelet infusions but the care I am getting is top notch and I couldn't feel more blessed and appreciative,” she wrote.
“And I do derive strength from all my loved ones at home - you always manage to put a smile on my dial."
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.”
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 info@msaustralia.org.au.
The Piragov Centre in Moscow has paid for Ms van Meurs’ body to be flown back to Brisbane, and a funeral will be held on July 31.
Ms Cruise is running a fund-raising drive for her friend’s family to pay for funeral costs and other expenses.
