Debate between Prof. Robberecht and Dr. Huang
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Prof. Robberecht started telling that there are actually two things that need to be taken apart:
1. Can we use certain cells from the body to deal with the degeneration of the nervous system? From these cells scientists could learn a lot about the disease, but first these cells needs to be examined on their meqning before conducting experiments.
2. If you then have such cells what can you do with it? The most important that the medical world thoroughly check or a particular therapy really works. This is what the patients and the government should demand.
For example:
- suppose you have a product that you claim "it works" proved with numbers, but ultimately not working. Then you gave other products no chance to prove their effectiveness.
- Conversely, when you’ve a product to which you say "it does not work" because you don’t have sufficient data and afterwards it turns out that it would work then you have thrown away something precious.
Who participated in a treatment study knows how difficult this can be. Therefore the question to Dr. Huang on which criteria to deliver the therapy is based is a very legitimate question. It must be clearly stated in a study who can participate and who doesn’t. When testing medication on 100 patients, you should discuss all 100 and not just the small group where the medication worked. It’s much more important to determine why it didn’t work in the large group. In addition, a group of patients should be monitored to see how they evolve without having taken the drug.
A final point that there should be well-founded conviction. Every time Prof. Robberecht is approached about the therapy of Dr. Huang he has to say he doesn’t know if this can help. On the counter question "what have you in place ?" he remains silence.
In the late eighties there was the TRH treatment (hormone). The patients were injected and fifteen minutes later they packed their wheelchairs and went off. But didn’t help.
Another example: BDNF was injected via a pump into the spinal cord. Some patients felt a shame this research to be done as it worked. However, they did not wonder why. After study this also didn’t worked.
Conclusion: the patient should seek the medical world that everything is thoroughly checked and the results are published. If these results show that something helps the therapy only then available to patients. Before that this can only be available under a controlled study.
Moderator Pol Geerts tells Dr. Huang that he didn’t convinced prof. Robberecht and asks why he doesn’t work with controls as the Western medical world does and then casts his study results.
ALS is a very severe and serious disease. Some patients may live with it for over 20 years, but their condition deteriorated. Up to now there is still no single method that effectively cures the disease. All we have is something that slowed the disease. His method provides after surgery to the patients an improvement in the functioning. Also Dr. Huang wants to apply scientific controls. But he can’t perform experimental operations to check as this is against the law in China. He may be punished by the state.
He notes that when he does nothing, patients worsen month after month. This in contrast with the group that he treated. These patients have a period of stability and some improvement even temporarily. This is still better than doing nothing. But all this is not sufficient for him, and certainly not for the patients.
He tries to develop his method. He’s willing to ascertain whether his therapy may be combined with others to provide the patient an even longer improvement.
Moderator Pol Geerts asks Dr Huang what happened to the 88 patients from the beginning of his speech. Results have been shown from 2 and 4 months after the operation. However, are there also results from longer period after the operation.
Over a longer period he usually has no more data. He can’t continue to monitor everyone for financial reasons. Sometimes he has even written contact with patients. But he admits that this isn’t enough. He also wants to take an EMG and measuring lung capacity after six months.
There is a need on finances to meet all again. China doesn’t have sufficient funds to allow this.
Another concern the moderator had for Dr. Huang was whether temporary improvement the videos shown wasn’t due to some other mechanisms, such as the placebo effect? "
The placebo effect reflects only in the mind. Dr. Huang can’t imagine that a patient would improve his condition by a placebo effect. For he noted that the situation stabilized and sometimes improved. After surgery most improve even for six months and some up to one year. A placebo effect would only lead to stabilize and no improvement. Besides a placebo effect wouldn’t manifest so long, as only in the mind.
The audience was asked how many of the 88 operated patients died during surgery or shortly after. Or rather what is the risk of your treatment Dr. Huang?
During the operation no one died. Some deceased shortly afterwards due to complications such as pneumonia. Despite that among them they observed a clear improvement in their performance.
Worse is the fact that he can’t treat everyone. So last year 20 patients would be treated, but half were already deceased before he could operate.
Although patients improve the questioner from the audience wasn’t convinced with the interventions of Dr. Huang. He finds his registration method is not scientifically based and wonders why he doesn’t appeal to Western researchers.
Dr. Huang wants to co-operate with the Western medical world. But where and using which methods? Everyone in the Western world wants to help the ALS patient, but is subject to strict regulations. In a scientific research results should be monitored and available to everyone. Also patients should be operated on supposedly to make comparisons. And this latter is contrary to Chinese law and with the subjective opinion of Dr. Huang. He thinks you always need to help under any circumstances, especially if you think you’ve a method that might help. He says the patient comes on first place and scientific research on the 2nd place. It’s his duty as a doctor always to make sure that a patient receives treatment.
Prof. Robberecht notes that Dr. Huang has a point here. For example, in the past surgeries been done drilling holes in the skull and part of the patients were injected with sugar, and others with a drug. Neither the patient nor the the treating physician knew what was injected. This was to test the placebo effect against the effective drug. Also Dr. Huang can’t cooperate with the western world because only in China abortions on fetuses older than six months is legal. A possiblilty to cooperate when taken 100 random ALS patients, measuring their features and then have some a surgery in China and some untreated. Both groups will be followed up after one month, three month, six months, nine months and 12 months by an independed person who doesn’t know who received the treatment and who didn’t. But it's hard to return to China again. The journey would take too much effort. We therefore have no ideal situation and we would be criticized, but we would have an indication about the efficiency of the treatment.
From the audience was noted that an ALS patient usually dies from respiratory problems and that it isn’t realistic to say that it’s about a complication.
Dr. Huang said it were not known respiratory problems, but infections in the airways that were the cause of death. He cited that there were other complications but that he’ll continue to look for ways to improve his method. At this moment it’s only a slight improvement for up to 2 years. He’s looking to extend this period of stability. He is convinced to search to solution to eradicates the disease. Patients only benefit, but we're not there yet. In China you can’t perform fake surgeries. This is forbidden by law. So you can’t consider the placebo effect. He also believes that the patient need to give his permission. Wait till after the surgery wouldn’t be fair. Basically, it means that you don’t respect your patient. This goes against human rights. Many countries claim they respect them, but despite they agree with those fake situations. Dr. Huang fully supports the opinion of his government.
At the end of the debate Danny Vyvey testified about his surgery in China. He had his surgery 15 months ago. He’s very pleased with the surgery. Before China, he couldn’t open his left hand, hardly intelligible, and couldn’t walk. Now he can open both hands, could walk eight months alone, and his voice is still better than before China. He speaks slowly, but very understandable. Now walking gets worse and he plans to go back for a 2nd surgery. He can only confirm it worked for him. He also understand not everything has been proven and that people sometimes react reluctant. He thinks it’s good that Western science act protective, but an ALS patient can’t wait for scientific studies and results. As for the placebo effect, he can only say that he got a good push forward and that he’s grateful that the surgery delayed the disease.
A final response came from Prof. Robberecht it remains everyone's job to check what is working or not working before trying out on patients. He admits that regulation the western world more slowly in progress research and results.
