clinical trial in Atlanta, Georgia, is proof that informed public debate is the key to medical advance
IF I’m honest, my first reaction to recent reports that the first human embryonic stem cell trial had begun on spinal patients in Atlanta was one of nonchalance.
Not because of its potential significance to those of us with spinal injuries — desperate for any news of progress — but because of the stop-start nature of the trial, plagued as it has been by legislative and regulatory restraints.
Now with confirmation that a phase one safety trial really has begun it seems that medical research again may be on the brink of a fundamental breakthrough. Hope, especially for those with newly acquired spinal injuries, is not unfounded.
In this US trial, the first of its type, patients with new injuries to their vertebrae will receive injections of about two million cells grown to resemble the precursors to spinal cord cells. In laboratory and animal experiments these cells have grown, almost miraculously, into spinal tissue, helping to repair injury.
What this trial may reveal, and whether this therapy proves effective, can have implications for the treatment of numerous conditions previously amenable only to clinical management. And beyond spinal cord and related conditions, work with the versatile cells also may lead to new treatments for conditions as varied as Alzheimer’s, motor neurone disease, diabetes and even blindness.
It might not mean people with spinal cord injury could walk again. But if spinal function is enhanced by as little as 5 per cent or 10 per cent it could enable a person to breathe unaided or regain enough function in their hands to write without the aid of a machine. These are significant enhancements to the quality of daily life.
That’s why it’s instructive to recall the decade-long effort by scientists, the public and advocacy groups to make possible the basic research behind this exciting clinical trial.
Because embryonic stem cells are grown from cells taken from the destruction of five to six-day-old human embryos, human ES cell research was, and remains, highly controversial.
Former US president George W. Bush strictly limited federal funding of human ES cell research, a prohibition lifted by his successor Barack Obama.
In Australia it was only after a fierce debate throughout 2002 that ES cell research was permitted under strict regulation.
At the time prime minister John Howard was unenthusiastic. Then Nationals leader and deputy PM John Anderson was a staunch opponent, and Kevin Andrews, then minister for ageing, argued such research would be treating human beings as a commodity.
Luckily, government backbenchers such as Mal Washer, a doctor, and opposition frontbencher Simon Crean saw the potential to alleviate human suffering through such research and pushed for a conscience vote.
Those were early days. The research was in its infancy. Still, findings demonstrated that the potential for ES cells to turn into any cell type in the body had enormous therapeutic potential.
NSW premier Bob Carr led the national debate on the regulation of ES cell research. Throughout 2002 Carr was a strong advocate for allowing and supporting this research.
Having been briefed by some of Australia’s leading medical researchers, Carr was convinced that even if there was only a small chance this new strand of research could alleviate human suffering, it was incumbent on him to argue the case.
And apart from scientsts, Carr also frequently met me and others with relevant conditions, including the parents of a two-year-old child with a rare spinal cord condition, transverse myelitis.
These efforts received international attention, so much so that American actor and disability advocate Christopher Reeve mentioned the premier’s efforts on US breakfast television.
This led to an invitation to Reeve, who headed his own Paralysis Foundation, to visit Australia to help raise awareness and argue the case for legalisation of ES cell research.
Deciding to make the visit to Australia was no small matter for Reeve, a ventilator-dependent person with quadriplegia.
His disability and the risk of skin breakages from staying in a single position for more than 20 hours, meant the flight would be risky.
But Reeve — a real-world Superman — was determined. He explained why: “The advancement of medical research is more important than the promotion of movies.”
At the Making Connections forum in Darling Harbour in January 2003, Reeve addressed an audience of more than 1000. Those in attendance included people with injuries, carers, researchers and clinicians, all eager to learn more and work together to help achieve progress. At the forum the NSW government announced more than $36 million in additional home care for people with disabilities and the establishment of a spinal cord and related conditions fund, dedicated to cutting-edge medical research.
It’s more than five years since Reeve died and Carr stepped down as premier. But what these two men argued for so publicly is now happening in a distant hospital in Atlanta, Georgia.
Thanks to such efforts there is hope that what many believed impossible a decade ago may become possible. Australian leaders, state and federal, would do well to take note and continue to fund this very important area of medical research.
OPINION: Joanna Knott From: The Australian
Joanna Knott is chairwoman of Spinal Cure Australia and a director of the Spinal Cord Injury Network.