
Christopher Reeve studied drama at the Juilliard School in New York. He played both on and off Broadway until he hit the big time in the Superman movies. Reeve has also starred in film adaptations of major novels, including The Bostonians. He took up riding after being cast as Count Vronsky in Anna Karenina. Since his injury, he has acted in the TV remake of Rear Window and in a special episode of Smallville, the TV series about Superman’s youth. He has also directed film and TV drama. Reeve has written about his life, recovery and campaigns in Still Me and Nothing is Impossible.
You’ve taken conventional therapy as far asit can go and you’ve made very great improvements…
I began to get motor recovery about fiveyears post injury, and that was without medical intervention. That was only because of exercise. There’s so much conventional wisdom that now appears to be wrong: for example, that whatever recovery you’re going to get from a spinal cord injury will happen inthe first year, or two years atmost.
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Another dogma that turns out to be wrong is that the spinal cord can’t regenerate. One of the reasons in the past that the spinal cord has not been able to regenerate is because, at the moment of injury and in the days just after, the site of the injury is attacked. There are damaged cells and debris all over the place. What scientists in Israel are doing now is treating a spinal cord patient within the first two weeks, by taking macrophages from the patient, multiplying them by the millions, and putting them back, where they act like little Pac-Men and create a clean environment for regeneration.
Would you put yourself forward to try out some of the new therapies?
Yes, I would, but the question is timing. For me, the comfort level would be probably coming in at phase two, when researchers have proved a treatment is safe but they want to know if it works.
So you wouldn’t go as far as the people with AIDS, who ended up besieging the research laboratories to try out therapies at a very early stage…
They’re facing death: I’m not.
No, but you can see something that looks just round the corner and yet it’s going so slowly. It must be galling.
Yes, it is. Here we are, with a technology, the ability to use cells that could become any tissue or cell type in the body, that holds the promise of curing everything from Alzheimer’s to Parkinson’s, leukaemia and cancer to spinal cord injury. Yet we are stalled by an ethical debate which to me is hard to understand.
Do you think we’re afraid of having God-like powers or something like that?
Well, I know that it’s very difficult for the Germans, for example, they’re wary because of the country’s Nazi past. But they are going to allow their scientists to do work on stem cells from fertilised embryos that would otherwise be discarded. They’re not going to allow therapeutic cloning, unfortunately. But many countries, like Britain, see the wisdom of allowing science to police itself. The UK government believes that oversight committees and strict regulations will work. But it doesn’t convince people here. We have to believe we can build protective walls around our own worst practices. I think we have to take responsible risks, given what stem cell research would do for billions of people who are suffering.
You sound like a great believer in science. Did this happen since your injury?
No, I’ve always been a firm believer in science and also in visionaries. Iremember I was nine years old when President Kennedy announced that the US would land a man on the Moon and bring him safely back to Earth by the end of the decade. He said that at a time when there was still no technology to make that possible. But the vision that Kennedy set forth created the reality.
Do you think it works like that?
I do, I definitely do, if you create urgency, if you remind people, remind scientists about their opportunities to change the course of history. Lay people like myself can speak up and say, why not? And not accept no for an answer. Iremember when I addressed a symposium in New Orleans in 2000. There were about 2500 neuroscientists and the majority were pure researchers. I asked if they would stop by on their way home and make a connection between the microscope and human suffering. A lot of them were really quite offended.
Really?
Yes, because they are used to working at their own pace. Their livelihood becomes research: they’re researchers rather than visionaries who want to get the problem solved as soon as possible – which would effectively put them out of business. But I always say to them, when research helps cure one disease, there are 20 more to work on. You’re not going to be out of a job.
Is that the attitude at the research centres run by the Christopher Reeve Paralysis Foundation?
We run it like a business. Before I came on board, the scientists were more in control. They would tell the foundation what to expect or what they might do in the coming year. Since I became chairman in 1996 we’ve shifted over the other way. I’ve said, OK, we’ll give you X dollars, but if you don’t perform you might not get any more. So we’re in the driving seat. At first it was quite an upheaval, because that’s not the way it was done in the past. But particularly with the advent of stem cells and new knowledge, there really is no excuse to delay.
It must be very difficult for your researchers because they can’t do the things they probably want to do.
The problem is that nothing has been banned yet in the US. It’s just not being funded by the federal government – and the way you get things done quickly is by getting federal funding. We give out money through our foundation and we work with pharmaceutical companies.
How much money does your foundation give out?
We’re giving out about $15 million annually for research – and another $4 million for quality of life to help people with day-to-day living. The thing is that we’re funding the best research, but we can’t give them as much money as they need. So that’s why we’re working on this campaign.
So how do you plan to fight back?
To really make progress, we need the backing of the federal government and the National Institutes of 91ɫƬ. The way to change public policy is through education. When the House of Representatives voted to ban both reproductive and therapeutic cloning in 2002, they did so after only about two hours of debate. Since then we got together a group and the president of it is Michael Manganiello, senior vice-president for government affairs at the Christopher Reeve Paralysis Foundation. There’s now an office in Washington, and there is lobbying on the Hill. They’ve spoken to the members of Congress who voted against therapeutic cloning, and they admitted they did not understand the issue. Last summer, I asked a high-ranking member of one committee how a representative could vote about something they don’t fully understand. And he said that most members have a particular area of responsibility, for example, armed services. They serve on specific committees and at any given moment there may be 35 bills pending so they tend to defer to the ranking party member. They let that member take the lead and just vote the party line with little knowledge of what they’re voting on.
That sounds very dangerous.
Yes, well that’s not the way the system was designed. For example, the vote on embryonic stem cell research in Australia last year was a conscience vote. And I must say I’m extremely grateful to them. They took 50 hours over it, and they were told that it was important not to line up behind party leaders.
The result was that Australia has passed a law that allows federal funding of research on stem cells derived from fertilised embryos left over from in vitro clinics – but not the other part of the equation, which is nuclear transfer, or therapeutic cloning, in which a patient’s own DNA is put into an unfertilised egg and the stem cells produced that way will not be rejected by the patient’s immune system.
What does the American public think?
We’re also working on a grass-roots movement because it appears that the Senate will end up in gridlock because neither side has the 60 votes needed to prevent a filibuster. We’re already making quite a lot of progress: the polls show that 68 per cent of the American public support nuclear transfer, or therapeutic cloning, the kind that creates stem cells rather than human beings.
We’re going to the state legislators and getting state laws passed that allow stem cell research. The first success was in California, which passed a law last September allowing scientists there to conduct research on stem cells derived from any source – and that includes therapeutic cloning. They have a state research fund of about $50 or $60 million. And then in November similar legislation was introduced in New Jersey, which also has a very viable pharmaceutical industry as well as top-flight scientists, just like California. Now we’re working on Massachusetts, Ohio, Wisconsin and New York. If we can get the legislation passed by that many states, it would be virtually impossible for the federal government to try to stop it.
So the federal government will be surrounded?
Don’t forget that the elections are coming up in 2004 and the campaigning has already started. Seven Democrats have put their hat in the ring and announced that they are running. And the President knows now that he’s on shaky ground domestically. His approval rating in terms of the economy and domestic policy is down around 46 to 47 per cent, and that’s pretty low. No one would be able to become president without winning New York, California, Massachusetts, and possibly Wisconsin.
In the past, you have set dates for when you hoped to be able to walk. Do you allow yourself to set dates any more?
No, it backfires on me too much. I used to think that hope was the product of science funding, but actually to a large extent it is going to be determined by politics. That makes it very difficult to project timelines. But I’m very grateful to all the researchers in Britain and in other countries, who are going full sheet ahead. They know what the job is, and that is to relieve human suffering.
Against all the odds
At 3.01 pm on 27 May 1995, Christopher Reeve set off over an equestrian cross-country course during an event in Culpepper, Virginia. Minutes later, his horse Buck stopped dead, Reeve’s hands caught in the reins and his body landed on his protective helmet in a near perpendicular position right on the top rail of a jump. He shattered the top two cervical vertebrae,C1 and C2, effectively severing his head from his spinal column, and stopped breathing for three minutes.
Fortunately, on-the-spot treatment saved him from brain damage, and he was given the synthetic steroid methylprednisolene within the critical 8-hour window doctors have to limit the inflammation that follows a spinal lesion. Inflammation does damage by producing free radicals that attack healthy neurons in the spine below the injury site. Nine days later, his head was reattached to his body – an occiput-C2 fusion using bone grafts, soft wire and a titanium ring. He was classified as a vent-dependent quadriplegic, technically a C2 ASIA A – E is normal on the American Spinal Injury Association’s scale. Ninety per cent of ASIA A patients never improve. Medical literature does not report a single instance of someone at grade A improving more than one grade two years after the injury. Reeve is now a C.
Over the years, keeping him in good order has taken up to five hours a day – and cost more than $400,000 per year paid for by medical insurance, personal appearances, writing, directing and acting. His team of physiotherapists and nurses must help him wash and dress, evacuate his bowels, stimulate leg and arm muscles, keep his tracheotomy clean and healthy, monitor the ventilator on which he is still dependent, andstruggle to avoid quadriplegia’s severest complications – skin breakdowns, bone fractures caused by osteoporosis, deep vein thrombosis and acute respiratory distress. Vitamins, minerals and antibiotics can be lifesavers. In 1997 the antibiotic ceftazidime saved Reeve’s left leg from possible amputation.
Under the eye of various doctors and therapists, Reeve took up a tough regime of physical exercise not normally advocated for C2 quadriplegia. In November 2000, he found he could move the left index finger. John McDonald, one of the neuroscientists called in to witness this “miracle”, was so impressed that he ran an MRI to see whether the electrical impulses came from the right part of the motor cortex. They did. McDonald, based at the Washington University School of Medicine in St Louis, encouraged Reeve’s work on a functional electrical stimulation (FES) bike which lets him cycle with one electrode on the gluteal muscle, another over the hamstring group and two on the quadriceps. He cycles for an hour three timesa week. Other muscle groups – the paraspinals, abdominals, wrist extensors, wrist flexors, deltoids, biceps and triceps – are stimulated using intermittent 1 second on, 2 seconds off AC cycles. McDonald also instigated Reeve’s first aquatherapy and was there when, with support, Reeve walkedin water.
In September last year, McDonald published his findings in the Journal of Neurosurgery: Spine (vol 97, p 252). It causeda great stir among neuroscientists andpublic alike because it was the first hardevidence that a substantial recovery ofmotor and sensory function is possible fivetoseven years after a severe spinal cordinjury. Among other gains, Reeve has movement in both hands, he can push his legs straight against a helper when lying flat,and he has recovered up to 66 per cent ofnormal response to light touch. Just as critically, the number of infections has fallen dramatically and by 2000-02 the number of days when he needed antibiotics had dropped 90 per cent compared with 1996-98. And the osteoporosis which could have sabotaged any dream of walking is completely reversed. His bone density is nowwithin the normal range.
McDonald is still working with Reeve…