WORTH A SHOT PRODUCER: LAURIE CLARKE REPORTER: MIKE McROBERTS Mike Intro: Five months ago Alison Scarff was told she would die. She was diagnosed with Motor Neurone Disease, a terrible wasting illness for which there is no cure. Or at least that's what Alison thought. But there may be, just may be, new hope for New Zealand's three hundred or so Motor Neurone sufferers, thanks to a radical new treatment pioneered in Puerto Rico. It's so radical and so new, doctors here won't touch it. Not, they say, until it's been proven. But that hasn't stopped Alison. She says she faced a simple choice; she could accept her fate, or she could give it a shot. ALISON SCARFF: It’s a slow process but I’m getting there. MIKE (V/O): Putting on her makeup is one of the few things Alison Scarff can still do for herself. It takes a long time. Husband Simon watches, and helps when she lets him. ALISON: Oh no, look I’m shaking too much now. It's 'cause i think I’m going to stab my... SIMON SCARFF: Do you want me to hold your hand? ALISON SCARFF: No they want to see me try and do this. MIKE (V/O): Alison has Motor Neurone Disease. Motor neurones carry messages from the brain to the muscles telling them to function. MND destroys the motor neurones leaving the muscles to eventually waste away, usually attacking the limbs first. It can take two years, it can take three years, but ultimately MND is a death sentence. ALISON: What is so devastating about Motor Neurone Disease is that there's no cure, there's no treatment. There's nothing. MIKE (V/O): There's no documented evidence of anyone ever surviving the disease, so far. But no-one counted on the determination of Alison Scarff. ALISON: There's always hope. There's always hope. I don’t want to be treated like a statistic. I don't want to be seen as a lost cause, I don't want to feel hopeless. MIKE (V/O): These photos of Alison were taken just six months ago. ALISON: I was active... SIMON: A live-wire, full of energy... JAY GOULD: Their level of energy bubbles over and it's infectious... ALISON: I was enjoying life. I thoroughly enjoyed my job. SIMON: Bull terrier mentality, once she got hold of something very passionate about it. JAY GOULD: You're swept up in the amount of enthusiasm that they bring to the task at hand and I think that would fairly describe Alison. MIKE (V/O): Jay Gould was just one of numerous clients won over by Alison's enthusiasm. She and husband Simon ran a business setting up computer software packages to improve the operation of companies. Alison stopped working in January. She and Simon are originally from Zimbabwe. They moved to Christchurch in 1989 with daughters Emma and Amy. Last year they took a lease on this rural property in Prebbleton. Daughter Amy shares Alison's love of riding and they wanted a place where they could keep horses. It was around then Alison first noticed things weren't right. ALISON: I went out there to get on the horse when we'd just bought it and couldn't pull myself up into the saddle. MIKE (V/O): And Alison found other things were also becoming more difficult. Simon was having to do more and more. ALISON: Hanging clothes up on the clothes line, normal everyday things, pulling clothes out of a washing machine, just all became very difficult to do. MIKE (V/O): In May last year Alison's GP sent her to a rheumatologist who suggested she may have Fibromyalgia. But when Alison checked on the internet her symptoms didn't match Fibromyalgia. She was referred to a neurologist - he tested for Fibromyalgia. Alison felt the specialists weren't really listening to her. It would be the start of a frustrating time for her and Simon. SIMON: It was just tests after tests and we seemed to be constantly battling the whole system, trying to get something out of them. MIKE (V/O): Her condition worsened, painful leg cramps in the night, twitching muscles, and she was losing weight. ALISON: Every day I was getting more and more symptoms that were telling me that there was something seriously wrong. MIKE (V/O): Alison was admitted to Christchurch hospital. She was first seen by an English registrar. ALISON: And she said to me immediately, she said, I think we should investigate MND. MIKE (V/O): MND, Motor Neurone Disease. But Alison believes it wasn't followed up by the specialists. Six days of testing came up with nothing conclusive. She was sent home. ALISON: My GP was told with a letter that goes to the GP afterwards, that they didn't seem to think I had a neurological condition at all. MIKE (V/O): But Alison wasn't convinced. ALISON: Again I went to the internet and had a look up MND because this word had been mentioned at the hospital, and although I didn't have all the symptoms that were there, I started to notice that a lot of the things that I was experiencing, were definitely symptoms of Motor Neurone Disease. MIKE (V/O): Diagnosing MND is a slow process of elimination, tests followed by more tests, slowly ruling out all other possibilities. But Alison wanted the tests. She was desperate to know. And her specialist was making little progress. In a letter to Alison's GP he said: “I think that Motor Neurone Disease has been more than adequately excluded.” And in the same letter... “She finds it difficult to intellectualise that the symptoms don't have a specific cause such as Motor Neurone Disease or multiple sclerosis. I tried to reassure her that it is common to be in that situation and in many incidences it is better.” MIKE (V/O): But Alison found it anything but better. She felt she'd become a burden to her family, her body was wasting away and no one could tell her why. ALISON: I’d cry just out of frustration. I’d often go to my GP and just burst into tears and say well we're no closer to this and every day its getting worse, every day its getting more difficult. MIKE (V/O): After months of frustration Alison went to a private specialist, paid for the tests she'd been requesting. Within a couple of weeks she had a diagnosis. It was definitely MND. ALISON: It was devastating. Even though I knew, I felt like I’d been knocked over by a sledgehammer. MIKE (V/O): It had taken eight months for Alison to be diagnosed. DR PARRY: I think she is very lucky to have been diagnosed as quickly as eight months. Most patients I see have been kicked around for longer periods than that. MIKE (V/O): Dr Gareth Parry is an Auckland neurophysiologist, previously working with MND patients in the U.S. His own mother died of the disease. DR PARRY: Many of the symptoms are quite non-specific and therefore because they're non-specific they're often attributed to something else. MIKE: What if I told you that she diagnosed herself off the internet? DR PARRY: Well I think again the internet is a great tool, its a very powerful tool. I would also emphasise that probably for every one patient who correctly diagnoses themselves from information on the internet, there's probably ten or more who mistakenly diagnose themselves off the internet. So, I think it works both ways. MIKE (V/O): For Alison the internet has only worked for her benefit. On March 7 this year there was a posting on a motor neurone web site. ALISON: The heading was ‘A New and Effective Treatment for ALS’, which is MND. MIKE (V/O): The web posting detailed a new form of treatment being performed by a Dr Moreira in Puerto Rico, injecting gamma globulin into the spinal chord. Gamma globulin is a blood product normally administered intravenously to treat auto-immune diseases. One of Dr Moreira's patients had regained the use of his limbs, something previously unheard of with MND. HARRY GOULD: You can see what ALS does to the muscles in the arms. My muscles are pretty much gone, that’s just flab up there. Anyway this is where I spend my day, on the computer. MIKE (V/O): Harry Gould, a former NASA engineer and an American sufferer of MND. It was his internet posting that Alison read. We arranged for his son to film our conversation with him. MIKE: Harry, when did you first discover that you had Motor Neurone Disease? HARRY GOULD: I was first diagnosed in October of 1999. MIKE (V/O): By December last year Harry’s condition was deteriorating. His limbs were weak and he was close to losing his speech. HARRY GOULD: I was starting to go downhill fast. I could see a change almost daily and certainly weekly. MIKE (V/O): Two weeks before Christmas Harry flew to Puerto Rico to receive gamma globulin injections from Dr Moreira. HARRY GOULD: After the first 20 I was pretty certain my body was stabilised. I actually had some positive things happening. For one thing I wouldn't be talking to you with the voice that I have right now. My voice had started to weaken. MIKE (V/O): But Harry didn't want to raise false hope with other MND patients. He waited three months before coming out with his news on the internet. ALISON: Well, it was tremendously exciting. At long last there was something we could, not just me, anybody with MND, could grasp and think well something really positive is happening. MIKE (V/O): One week after seeing Harry’s web posting and armed with information about the treatment Alison went to see her new specialist. ALISON: When I asked him would he treat me, it wasn't quite that simple. He said he would find it difficult to do anything that was unproven and he felt was dangerous. I don’t think I’m asking for anything that's obscure or weird. This is not witch doctor treatment, I’m not asking to be injected with cat pee or anything. MIKE (V/O): Alison's specialist wouldn't discuss her case with 20/20 so we asked Dr Gareth Parry's opinion. DR PARRY: I would not treat a patient. It's come up. I would not treat a patient in this way. MIKE: You've had someone ask you to do it? DR PARRY: Correct. I personally feel that it is not ethical to administer this drug in the manner it's being administered, unless it is under the auspices of a carefully controlled scientific study. MIKE (V/O): The radical element in this procedure is the injecting of gamma globulin into the spinal chord. It's much like an epidural given in pregnancy, the needle inserted between the lower vertebrae. DR PARRY: We don't know whether it’s safe. We're giving a blood product into the spinal fluid, I think there are lots of possible risks of that. MIKE (V/O): Risks like meningitis. ALISON: I’m prepared to take what I believe is a calculated risk and I feel it is crazy for the medical profession to stop me getting a common cold on the way to the cemetery. MND is a fatal disease. I am too young to die. I want to do what I can to, just to continue to live. MIKE (V/O): Alison's specialist in Christchurch wouldn't do it. Nor would anyone else she contacted. So she came to Melbourne. Again it was through the internet, Alison found an Australian MND sufferer who had a sympathetic doctor prepared to administer the injections. (TO CAM): We can't show you Alison being treated. While her doctor is prepared to administer the gamma globulin injection he's not prepared to be publicly identified. What we can tell you is the doctor has a reputable and well established practice. He's agreed to treat Alison because he says it's a small risk for what could be a big gain. He says the biggest risk that he faces is the possible backlash from medical authorities here in Australia for performing this unorthodox treatment. (V/O): The doctor is following the procedure performed on Harry Gould and other patients of Dr Moreira, an injection into the base of the spine. Alison's first injection was a difficult one. We caught up with her after the second. (I/V): How did it go? ALISON: Good, good. I hardly felt the anaesthetic and I didn't feel the procedure at all. MIKE: Was it a painful or difficult procedure? ALISON: No it was lot simpler than I thought. Was all over and done with in about 20 minutes. I was expecting to have to lie down for, you know, four hours afterwards. Twenty minutes later you can get up and go, so it's a lot of nervous anxiety for nothing really. MIKE (V/O): Alison and Simon had only the reports from Harry Gould and other patients on the net to go on, but Alison says she can already notice a difference after two injections. She has more energy. ALISON: I’m feeling really good. MIKE: You're excited. ALISON: I am. MIKE: But is it a matter of keeping that excitement in check just in the meantime. ALISON: Well I’m trying not to be over optimistic. I'm trying not to say this is a cure but, honest to tell you I don't feel like a dying woman any more. I just don't. MIKE: Yet no-one has ever survived this disease. ALISON: Until recently. The first patient that received gamma globulin treatment is alive today, eighteen months after starting treatment and he was given five or six months to live. Maybe it's not an incurable disease after all, maybe this is the cure that we've all been waiting for. MIKE (V/O): Six months ago Harry Gould had doubts he'd still be able to walk. The day we rang Harry it was his 63rd birthday. Harry's not prepared to go on the record and call gamma globulin a cure, but he's convinced that without it he'd be worse off. Dr Parry has read over Harry’s reports and those of other internet patients. DR PARRY: What I’m seeing is short term, modest stabilisation and we see that in placebo. Really what we want to know is what are things like in a year from now. If these patients are still stable, boy now we've got something that is very exciting. MIKE (V/O): Doctor Parry is talking about a year from now. But Simon and Alison can barely see past the next month. The expense of flying to Melbourne and receiving injections at three hundred dollars a pop is rapidly draining their finances. Harry Gould faced the same problem with flying to Puerto Rico for injections. Eventually he found a local doctor who was prepared to treat him. Alison wants a Christchurch doctor to administer the injections. (I/V): What will it take for the treatment to be performed here? DR PARRY: I think before the treatment can be performed widely anywhere in the world, it's going to require careful scientific study. MIKE (V/O): That means a huge expensive trial, probably in the U.S., and years of waiting for a result. Alison doesn't have years. Even now she sometimes needs a respirator to breathe at night. If she can't get a doctor to treat her in New Zealand, MND will continue to claim her body. ALISON: If I can just halt the progression now, even if I have to live like this. Let's carry on looking for a cure, but in the meantime if you can give me a life-raft for me to climb onto, I don't mind staying out there in the ocean until I can be rescued by a proper cure, but don't deny me that. Just let me get on that life-raft and let me live. DR PARRY: I think that this may kill some patients. I think it probably will kill some patients. I think that some patients perhaps just as tragically are going to put themselves in the poorhouse by paying for an extremely expensive treatment that may ultimately turn out to be ineffective. Of course if it turns out that it does stabilise or reverse the course of the disease, we'll hail these people as trail blazers and rightly so I might add. They are the ones who have been prepared to put their money where their mouth is, they are the ones that have been prepared to put their bodies on the line and expose themselves to risk. HARRY GOULD: My take for Alison is that we can have many more birthday's like this. This is great. I'm gonna be around to watch my grandkids grow up otherwise I wouldn't have been there. Anyway, good luck Alison. I hope it works for you as well as it does for me. FAMILY MEMBERS: Good luck Alison. Good luck. Good luck Alison. BACK ANNOUNCE: After nine treatments Alison says there are visible signs of an improvement in her condition. She's put on a kilo and a half in weight and feels she has more mobility. She has enough money for another two weeks of treatment after which she'll return home in the hope that a doctor here may administer gamma globulin. Meanwhile, her friends have begun an appeal to raise money for more treatments. They've set up a trust fund under the name ‘Shepherd Ministries Incorporated’. [10/06/2001]