A disabled campaigner and reality TV star has issued a stark warning to disabled people considering travelling abroad for unproven stem cell “treatments” and “cures”.
Sophie Morgan was one of three young disabled people who appeared in a BBC2 Horizon documentary this week about developments in stem cell therapies for those with impairments such as spinal cord injuries, heart conditions and amputated limbs.
But the programme also looked at some of the private clinics in countries such as India and China that advertise “cures” on the internet and often make wild, unfounded claims for stem cell therapies.
Morgan, who has appeared in the BBC reality shows Britain’s Missing Top Model and Beyond Boundaries and now heads the campaigning charity Imperfect, had approached the BBC about the idea of researching such therapies.
But she said she was unprepared for what she discovered during filming.
She learned of disabled people who visited China for unproven “cures” and returned with pneumonia or pressure sores.
One US specialist in spinal cord injuries told Horizon that he knew of disabled people who had spent $50,000 on “completely unethical”, “snake oil” treatments, and how the clinics involved refused to conduct trials into their supposed miracle cures.
Morgan says: “It is a dangerous game to play and it is a risk that we need to be more informed about. The problem is that there is not that much information out there.
“I know there are a lot of people going out to find cures and treatment but they need to know the risks and dangers.”
As someone who was not born disabled but acquired a spinal injury, her life now is about celebrating disability and diversity, she says, but there is still a part of her that “would love to go back to the way I was”.
“For spinally-injured people it is a very difficult world to adapt to and if there was a cure I think most people would go back to the way they were.”
The programme suggested that genuine, successful treatments for spinal cord injuries may not be many years away.
Morgan says she was encouraged by what she discovered about current stem cell research, and she now understands the need for properly regulated trials.
“It is a waiting game and we have to remain patient,” she says, “but there is hope around the corner.”
27 October 2009
UN debate will be reminder of true inclusive education