In late 1987, the Swedish group performed the same kind of transplants on two human patients with Parkinson’s disease. The
substantia nigra
cells that they transplanted came from human foetal tissue obtained during abortions. Because the aborted foetuses were extremely immature – just seven weeks old and an inch or so in length – and because they were broken apart during the abortion procedure, it took a great deal of skill for the researchers to identify and dissect out the
substantia nigra
while leaving other unwanted tissues behind. But they accomplished this task successfully. They then drilled small holes in their patients’ skulls, passed long hollow needles down through the cerebral cortex into the underlying striatum, and then pumped the foetal cells through the needles into the striatum. The patients recovered satisfactorily from the surgery, and the researchers observed them over the following weeks and months to see whether the transplants had any effect.
In fact, the patients did seem to improve. Although Bjorklund’s group didn’t publicise their research immediately, word spread through the neuroscience community. So Iacono heard about the Swedish experiments, and he suggested to Truex that a foetal transplant might benefit him, too.
Truex agreed; in fact, he leapt at the idea. Kay may have been a bit more cautious, but she went along with Max’s wishes. ‘I was in favour because it was what he wanted,’ she said. And, though an observant Catholic, she had no moral qualms about the use of foetal tissue. ‘I didn’t have a religious problem with it, because I knew that the tissue was going to be thrown away – it wasn’t as if people were aborting children for this purpose.’
The next question was where and how Truex was to get the transplant. Iacono first contacted the Swedish group, hoping that they would accept Truex as a patient. They turned him down, however, because they preferred Swedish patients who they could monitor for long periods after the transplant. Then Iacono found out that a group at Yale University was gearing up to perform similar transplants and was looking for volunteers. But, as it turned out, the Yale group also wanted people who lived locally. A group in England also turned Truex down. Iacono was stymied.
Then, in November 1988, the first American foetal transplant was performed by a team led by neuroscientist Curt Freed of the University of Colorado. Freed had researched the technique for years, first in rats (like the Swedes) and then in monkeys. This research was funded by federal grants, but when he began the human work Freed had to turn to private funds because the Reagan administration, concerned about the abortion issue, had banned the use of federal grants to support transplantations involving human foetal tissue.
For the first transplant, Freed selected a volunteer by the name of Don Nelson, a 51-year-old Denver man who had been suffering from Parkinson’s disease for 19 years. As with Max Truex, Nelson was deteriorating fast and he was desperate to try some new therapy. Freed obtained foetal tissue from an abortion clinic in the Denver area, dissected out the
substantia nigra
and (with the collaboration of a neurosurgeon) injected the foetal cells into the striatum on one side of Nelson’s brain.
If the Swedes were publicity-shy almost to the point of secretiveness, Freed was the very opposite: he held a news conference to announce the transplant just two days after the operation, long before he could know whether Nelson would experience any benefit from the procedure. Part of the reason for his haste may have been that the Yale group was about to do their first transplant – it actually took place just a few weeks later. In the world of medical research, priority is a significant issue.
Iacono did not contact Freed to see if he would accept Truex as a volunteer. Although I don’t know the exact reason, the fact is that Freed and Iacono didn’t get along. ‘I have no respect for Curt Freed,’ Iacono told me. ‘The results he’s got have been so poor that no one should be continuing that work.’ And he described some of Freed’s more recent experiments, in which he did mock surgery on some patients to establish a placebo control group, as ‘asinine and unethical.’ When I talked with Freed in 2000 – we were collaborating on a book about Parkinson’s disease – he was equally blunt about Iacono. He described Iacono as ‘one of the most, shall we say, provocative neurosurgeons who has not been censured by the academy of neurosurgery but whom everyone has said should be censured.’ Of course, this was after he learned about what happened to Max Truex; it’s possible that he was better disposed toward Iacono back in 1988.
In any event, Iacono said that he made great efforts to find a place where Truex could get a foetal transplant. ‘I tried all my friends all over the world – Sweden, Britain, Japan. I tried and tried. And eventually, after two or three years of following Max, I realised I had to do it myself.’
Do the transplant himself? Iacono was a neurosurgeon, certainly, so he had a general expertise in brain surgery. He also had a particular interest in Parkinson’s disease. But the handful of foetal transplants that had been done up to that time were performed by large research teams at major medical centres. The teams included basic neuroscientists, immunologists, and neurologists as well as neurosurgeons, supported by large amounts of money from public or private sources. The researchers had years of practice doing the transplants in laboratory animals before they ventured to touch a human being. They had studied every variable that might affect the success of the procedure, such as the right age of the foetus that would supply the tissue, the proper technology for dissecting, handling, storing, and administering the cells, and the right kind of drugs to give the patients to prevent the transplanted tissue from being rejected. The researchers performed brain scans, using advanced technology, to measure dopamine function in the brains of their volunteers before and after the transplants. And they carried out rigorous neurological testing of their volunteers for months before and after the transplants, so that any benefit or harm of the transplants could be assessed. All of this was overseen by university committees composed of doctors, administrators, and ethicists, whose role was to ensure that the volunteers were not exposed to undue risk, and that they were fully aware of those risks that could not be avoided. How was Iacono to replicate all of this, virtually by himself, and without any funds to support the project?
Iacono was based at a major medical centre – the University of Arizona Health Sciences Center in Tucson – but he would not have been allowed to do the transplant there, for two reasons. First, the operation was outside his recognised area of expertise. (‘I just don’t do stuff like that,’ was how he put it.) Second, there was a general ban on medical research using human foetal tissue at the University of Arizona – a state school in a very conservative state.
Iacono thought that the best way to overcome these difficulties was to do the operation overseas. He first thought of Japan, which he visited from time to time. But his Japanese colleagues were reluctant to get involved. Then, while in Japan, he met a doctor who worked in a cancer hospital in Zhengzhou, the capital of Henan province in China. The doctor suggested Iacono perform the transplant there: tissue from aborted foetuses was readily available, he said, and regulatory control was lax. ‘It’s no muss, no fuss in China,’ as Iacono put it.
Travelling halfway around the world for a surgical operation is not unheard of. Plenty of people fly from faraway places to have a procedure that is not available in their home countries. Still, what Iacono was proposing to do was very different: rather than take Truex to an established centre of excellence where the local doctors were experienced in the transplant procedure, he was planning to take him to what, in many people’s minds, could be considered the ‘back of beyond’, and more specifically to a hospital whose staff had absolutely no experience in this kind of surgery. Iacono was going to have to do almost everything himself, so if he was to succeed, he needed to be fully prepared.
Iacono did in fact prepare himself as best he could. ‘I was learning about immunosuppression, I studied up on the embryology, I read all the papers, and I developed my own technique – I solved millions of problems,’ he said. Still, he did not perform foetal-cell transplantations in animals as the other researchers had done, nor did he go and witness human foetal-cell transplant surgeries at one of the centres that were already doing them.
One problem stood out as the most challenging. The transplantation procedure involved stereotaxic surgery – that is, the use of a calibrated metal frame attached rigidly to the patient’s skull. By mounting the injection needle on the frame at a specified location and angle, it could be driven into the brain a predetermined distance and the surgeon would know that the tip was in the desired target, the striatum. Iacono was familiar with the techniques of stereotaxic surgery, but such surgery couldn’t be carried out at the Zhengzhou hospital – they simply didn’t have the facilities.
Iacono thought up a fairly devious scheme to get around this difficulty. In April of 1989, he operated on Truex at the Veterans Administration hospital in Tucson. The operation was a ‘thalamotomy’ – the destruction of part of a brain region called the thalamus. This is a procedure that is sometimes done to alleviate the tremor of Parkinson’s disease, and in fact Truex’s tremor was lessened, according to Kay. But the thalamotomy wasn’t the main reason for taking Truex into the operating room that day. Rather, it was the ‘cover’ (as Iacono himself put it) for a second procedure that he carried out ‘on the QT’ immediately after the first.
In the second procedure, Iacono inserted three catheters, or plastic tubes, into Truex’s brain, using the stereotaxic equipment that was available at the VA hospital. The tips of two of the tubes were guided into the left and right striatum. Iacono placed the tip of the third catheter in a ventricle – one of the large, fluid-filled cavities inside the brain. It was the left lateral ventricle, which is close to the striatum on that side. This catheter was of a different design than the other two: its back end was connected to a small rubber bladder, or reservoir, that Iacono implanted under Truex’s scalp. Then he sewed up the scalp incision with all three catheters still in place. The idea was that later, in China, he would be able to push the foetal tissue down the tubes and he’d know that it would end up in the striatum or in the ventricle, even without stereotaxic control. The catheters would serve as pre-targeted delivery chutes. What is more, Iacono thought that the inevitable tissue damage caused by the presence of the tubes would actually be beneficial to the transplant: some research suggested that damaged brain tissue releases chemicals called growth factors that encourage cell survival.
Truex recovered uneventfully from these procedures, and a couple of weeks later the two men set out for China. They flew first from Tucson to Los Angeles. This was convenient for Kay, because the family had temporarily moved back from Boston to Manhattan Beach, where they were overseeing some work on their old property there which they planned to sell. Thus, Kay and Gene had the opportunity to come up to the airport and visit Max and Bob during their layover. Max didn’t look like a typical globe-trotting tourist: besides his obvious Parkinsonian symptoms, his head was swathed in bandages to protect the locations where Iacono had drilled through his skull. ‘He was in pretty bad shape,’ said Kay.
At the airport, Iacono and Kay had a frank conversation. This is how Iacono recounted it to me: ‘I told Kay, “You know, I may not be able to bring him back.” And she said, “Bob, you’ve got to try …” And I said, “I may not be able to bring him back – even in a box.” She said, “Bob, please try!” So this wasn’t tiddlywinks. And I’m no Texas chainsaw murderer; I’m a very conservative neurosurgeon, by the way.’
When I asked Kay about this, she at first denied any memory of such a conversation, but later she said, ‘I’m beginning to remember this ‘box’ thing. He probably did say something like that. He is very colourful.’
The journey to Zhengzhou was a nightmare. Starting in Los Angeles, Truex and Iacono first flew to San Francisco, where they took a China Airlines flight bound for Shanghai. But fuel supplies ran low, and the pilot had to make an emergency landing in Japan. After a long delay they finally made it to Shanghai.
From Shanghai, they took a train for Zhengzhou. The 500-mile rail trip took 22 hours, mostly occupied by repeated hold-ups as the steam-powered passenger train was forced to yield the track to higher-priority freight or military trains. And there was no food. Train travel in China was difficult at the best of times, but these times were far from the best: on May 4, about 100,000 students and workers had marched through Beijing to protest at government policies, and this unprecedented event had greatly alarmed the government so the entire country was in a state of tension.
Truex had been in a bad way at the start of the trip, but by the time they arrived at Zhengzhou he was virtually immobile: he could not walk even a few steps. Iacono had to carry him off the train; then he was put on a tricycle and wheeled to a waiting car.
Neither man had ever been to mainland China before, and Iacono was unprepared for the primitive conditions that existed at the Zhengzhou cancer hospital. There was no heat or hot water, for example, and the equipment was rudimentary. The microscopes, which were crucial for the dissection of the foetal tissue, didn’t even have built-in light sources. Like children’s microscopes in the West, they simply had little mirrors that you aimed at a window.