Fake treatment for Duchenne turns into a police affair


                                           *Conceição Lemes

During the last six years, Peter Law increased substantially his bank account thanks to Brazil. But the Brazilian golden mine is closed. Myoblast transfer (MTT), the treatment that this Chinese physiologist living in the USA offers for Duchenne muscular dystrophy, is now prohibited in Brazil. The aim of this resolution, just published by the Brazilian Federal Council of Medicine, is to prevent that patients affected by this still incurable genetic disorder are deceived by false promises of cure, as  was happening since 1996. At the beginning, this occurred in the Cell Therapy Research Foundation, in Memphis, Tennessee. Afterwards, in São Paulo, the largest Brazilian State, where Peter Law was associated with the physicians Wagner Fiori, Euclydes Marques and Márcio Peres Ribeiro.

Since August 1998, at least 20 patients from different parts of the world, including USA and Spain, came to Brazil to be submitted to the MTT instead of going to Memphis. It is impossible to know how many Brazilian children were transplanted. But at least nine of them had their treatment covered by the Brazilian Health Department at a cost of U$ 150,000 per child, that is, a total U$1,350 million dollars. It is a truthful crime against Brazilian public health, where most affected children cannot even afford to buy a wheelchair.

“Since the Brazilian families are poor, the only way to recover this money will be through a lawsuit to be carried out by the American Justice,” says Francis Lilian Torrecillas Silveira, Santa Catarina’s State attorney. The Medical Council from São Paulo State has just commenced a lawsuit against the Brazilian doctors involved. “If condemned, the penalty may range from a warning to the loss of their medical license,” evaluates Gabriel Oselka, professor of Bio-Ethics from the Medical Faculty of the University of São Paulo. The ethical violations include: recommendation of an unproven treatment method, giving false hope to patients and their parents, and the payment for what is still an experimental trial. “This is a big fraud, a police affair,” condemns the Brazilian attorney Torrecillas Silveira.


How the fraud was unmasked

The scheme involving Peter Law and his Brazilian connection was revealed  in the site  No Mínimo under the title Physicians turn a disease into a criminal affair, published on July 13.

In order to unmask the fraud in Brazil, the journalist who signs this article pretended to be the godmother of a  boy affected by Duchenne dystrophy, aged 7, who she named Bruno Almeida Silveira.  Without identifying herself as reporter and using the name Maria Monteiro, she scheduled an appointment, on August 2000, with Wagner Fiori, one of the Brazilian physicians involved in the scheme. He and his partners, Dr. Euclydes Marques and Dr. Márcio Peres Ribeiro, have an elegant clinic in S. Paulo called Genesys Research Institute, that is affiliated to Cell Therapy Research Foundation.

 “The transplant of 50 billion myoblasts improves muscular strength and the quality of life of Duchenne patients. One was even able to walk again. It is worth trying MTT in your godson,” recommended Dr. Wagner Fiori to the godmother. After charging R$ 196,00 for the consultation (at that time about U$ 100 dollars; see the document 1), he gave her the phone number and the email address of Peter Law, whose site celltherapy.com emphasizes: more than 230 transplants have been performed with more than 75% success ratio.

“The MTT is experimental, and the results are very good,” guaranteed Tunja Jackson , director of the Cell Therapy Foundation, in Memphis to the godmother. The vice-president of the Institution, Tena Goodwin, reinforced: “All patients transplanted have either seen great improvement and/or a considerable decrease in muscle degeneration. Dr. Law believes that Bruno will have these benefits. The alternative is to do nothing, which is worse (see the document 2). Peter K. Law himself dispelled any doubts about the competency of the Brazilian team (see document 3): “If it would make Bruno’s mother feel better, either myself or another staff member could attend the transplant in Brazil.”  

 Bruno’s MTT was tentatively scheduled several times. The first on December 10, 2001, in São Paulo. The last  in April 24, 2002 (see  document 3). The initial price was U$ 150.000 dollars, but after a long negotiation with the godmother the final price was set at U$ 134.000 dollars. This amount had to be deposited until March 24, in the bank account of Cell Transplants Asia Limited that belongs to Peter Law. Bank: Hong Kong Bank, in Hong Kong, Asia. Bank number: 004. Account number: 485-232367 (see document  4).

Some important aspects during the negotiations between the supposed godmother and Law’s organization, which lasted 20 months, included 56 e-mails and several telephone calls were:

1.        Bruno, the fictitious patient, would be 7 when the negotiation started,

and 9 at the its end, in April 2002.

2.        Bruno was never asked to be examined by the Brazilian doctors nor in

 Memphis in order to check if his diagnosis was correct.

3.         Nobody ever asked how his disease was progressing. All the time, the

only concern of Law’s team was the MTT’s payment.

4. Bruno was even released of the required visit to Memphis, where he should be examined in order to know if he was eligible or not for MTT. When the doctors were informed that the family had already gotten the money they scheduled the procedure.

 5. Peter Law set up the date of MTT even before receiving any medical report or results of blood tests. The only report sent to Law was written by Bruno’s godmother.


Hidden unsuccessfulness

Bruno’s case was built with only one aim: to evaluate how far Peter Law and his Brazilian branch would go. Unfortunately, the reality is much more cruel. These Brazilian children were dreaming of playing soccer, running again or even walking after MTT. Three of them were transplanted in Memphis, USA and the others in São Paulo, Brazil. According to their parents this is their current condition: 

* T.M., 20-yr-old -- Has lost all legs movement: when he tries to move them, they fall as two strips of cloth; must be assisted in order to turn in bed. Prior to the transplant, could flex his inferior members. After the treatment, he experienced a sharp decline in his ability to move them.

* J.B.G.C., 16-yr-old -- Must be spoon-fed due to inability to raise his arms. Still draws and plays video-game: types everything using two chopsticks. His mother claims: “It is too much suffering for nothing.”

 * A.G, 17-yr-old -- Was hospitalized in April 2002, and died in July following a cardiac-respiratory arrest.

* L.T.F.M, 16-yr-old -- Unable to walk; needs help to seat on the toilet. Is still capable of using the computer.

* M.G.S., 13-yr-old -- Has already lost the ability to move his arms and legs. Before being submitted to the treatment (being 9 years old at the time) he was able to walk. Right after the treatment, he stopped walking, never again recovering this ability.

* A.C., 17-yr-old -- Unable to move his legs or raise up his arms; has respiratory difficulties. According to his father, José Tadeu Cruz, the U$ 150,000 that the Brazilian government paid for the MTT and the additional U$ 20,000 spent by the family for travelling and hotel were a waste. “My son cannot move anymore and has severe respiratory problems. I would rather go to a witch than repeat this treatment,” claims Mr. Cruz.

In short, none of the Brazilian children showed any improvement or change in the natural course of the disease, and in the case of  M.G.S. it is possible that the MTT has even accelerated the disease progression. These boys  represent the evidence  which proves the unsuccessfulness of this treatment. Pat Furlong, head of the Parent´s Project in United States who followed several Duchenne boys submitted to MTT including her two sons already deceased, confirms: “ Nothing has changed in the life of these children. The ones who could not walk, or could not feed themselves independently continued not walking or unable to eat without assistance.”


Shattered hopes

“Unfortunately, myoblast transplant has not proven to have any therapeutic effect for Duchenne or other forms of muscular dystrophies,” warns Mayana Zatz, president of the Brazilian Muscular Dystrophy Association. Besides, it is not true that nothing can be done. It is known that the combination of proper physiotherapy, administration of corticoids (in many cases) and assisted ventilation – the bipap -- improves significantly not only the quality of life but also the life expectancy in many years.

Scientists from all over the world agree. Among them known researchers such as Terence Partdrige and Victor Dubowitz, from United Kingdom, and the Brazilian neurologists Alan Gabbai, Acary Bulle de Oliveira, Lineu Werneck and Umbertina Reed. “In addition to the immunological rejection, there was no improvement in muscular strength nor a halt in the muscular degeneration process,” claims Professor George Karpati, leader of the Montreal Neurology Institute, in Canada. “The procedure is inefficient in any hands. Dr. Elizabeth McNally, from Chicago University, emphasizes: “Recommending MTT for Duchenne is fostering  false hope to patients and parents.”


The “brain” is in the USA

In the mid 1990’s, renowned groups of researchers had already proven that the myoblast transplant was not effective. Despite these results, Peter Law, former member of the medical establishment, continued his “researches” in his private foundation, with the approval of the Food and Drug Administration. Nevertheless, in 2000, the FDA, after conducting an investigation, disqualified Law and his researches due to their serious flaws and violations.

When forbidden to perform transplants in the USA, he decided to strengthen his Brazilian connection. Nevertheless, Law, the brain of the organization, remained in the United States. The production of myoblasts, obtained apparently from the muscles of healthy American boys, also takes place in US. “We only carry out the transplant (in Brazil), which involves 750 injections,” explained Dr. Fiori to the fictitious godmother. “The government must pay for the transplant. Many children have already won in court the right for the treatment. Bruno’s parents can follow suit.”

This has been possible due to a breach in Brazil’s Constitution, which provides the payment abroad for treatments unavailable in Brazil in the case of severe diseases. This was guaranteed in at least nine cases. But there is evidence that the Brazilian branch has profited more than 3 million dollars to Peter Law’s organization, since more than 20 transplants took place just in São Paulo, according to Tena Goodwin, Cell Therapy’s treasurer (see document 2). After all:

1. Some wealthy Brazilian families financed their children’s treatment.

2. Sick children, from other nations, were submitted to the transplant in Brazil. This can be illustrated in the site davidmayuri.com, where a young American boy is currently trying to collect funds to be submitted to MTT (see document 5).

3.  Other diagnosis were also included. In May, 2002, the Brazilian Supreme Court of Justice declared that the government should pay for the treatment of L.T.M, 20 yrs-old, affected by limb-girdle muscular dystrophy.


Boys were used as guinea pigs

“We carry out the procedure here in Brazil just to make the children’s life easier. We are not entitled to any payment. Our participation is solely based on scientific interest,” is the official claim from the three members of  the Brazilian branch.

Unfortunately, they do not have any solidarity.  Besides, they are behaving unlawfully. The Brazilian trio has never submitted any project to the National  Ethical Committee, as required by the Health Ministry. This is a mandatory requirement in any research involving human beings.

The organization also shocks for its cynicism. Tunja Jackson, in one of her emails writes: “We would also like to express our sorrow in knowing that you had to sell your properties in order to pay for your godson’s treatment.”

The truth is  that it is all done for money only. Indeed, Cell Therapy’s plans for Brazil included the establishment of a foundation and the use of myoblasts  for myocardial infarction. “We are interested in the cardiac area due to great number of affected people, 300 thousand Brazilians every year,” states Euclides Marques. “We just got involved in muscular dystrophy, not our area of expertise, to gain some experience and use it for heart therapy.” This means that  Duchenne boys were used as guinea pigs for other purposes.


Deception and omission

Unethical behavior is not rare particularly for incurable diseases.  There is often a great difference between what is told to the families in the doctor’s office and what is publicly announced. That is why Bruno’s godmother also interviewed the involved doctors subsequently as a reporter. The caring Dr.Wagner Fiori of the first consultation gave place to an oblivious doctor during the interview. “Cost? This issue is the American’s responsibility. We do not know and do not care to know how much the treatment costs,” he claimed. When asked if the Brazilian boys paid for the treatment, he replied: “If they were involved in Peter Law’s research probable this treatment was free of cost.”

Ironically, this “naive”  doctor was signing together with his partners the medical reports required by the Brazilian Justice (before depositing the US 150.000 dollars in Peter Law´s account),  where they stated  that MTT was the only available treatment for Duchenne dystrophy. Even worse is that in addition to Federal Judges ,  Peter Law and his Brazilian branch deceived children with Duchenne dystrophy (who believed they would play soccer again) and their suffering  parents. Unfortunately, many families and laymen still do not know that Peter Law:

1. Never showed long terms effects of his research;

2. Refuses to debate and to submit to the scientific community biopsies of his patient’s muscles for studies;

4.     Did not mention in his site nor in published articles that several Duchenne

 boys submitted to MTT have already passed away. “To this date we do not know if the treatment had any influence in the age or on the cause of patients deaths,” worries Prof. Terence A. Partridge, head of the Muscular Cellular Biology group of the Imperial College School of Medicine, in London, England. This uneasiness is grounded, since Peter Law has not reported to the FDA any side effects reported by the patients that received the treatment.

How can one explain the “success” shown in videos and in Cell Therapy’s web site? One explanation is that Mr. Law and his Brazilian partners are  fostering  false hope to patients and their parents, taking advantage of their despair and suffering. It is hard to believe, but deceased children are shown in Law’s videos, as if they were still alive. Another  possibility  is  inadequate diagnosis as already pointed out by FDA. Bruno´s story confirms the inclusion of a patient prior to diagnosis confirmation.


Cruel Intimidation

Instead to prove that these renowned scientists are mistaken, Peter Law tries to silence them with multi-million dollars lawsuits. Even crueler is the expediency to silence parents of boys who have already undergone treatment: the possibility of new research and the promise that the participants of the initial phase would be the first beneficiaries. Thus, due to fear, hope, or shame, they do not always admit they have been deceived. In addition, since the disease progresses gradually, it may take 4 or 5 years for the fraud to be discovered.

A. G., one of the Duchenne boys from São Paulo was submitted to MTT in the US in 1997, when he was then 12 years old. “Doctor Law told me it was an absurd that my son was taking corticoids, and the medication was interrupted”, says his mother Vera Gattai. A. G. experienced the natural progression of the disease: he lost the ability to walk, then  to move his arms and legs. After having had a cardiac- respiratory arrest, he was submitted to a tracheostomy, and was hospitalized between the months of April and June of 2002, due to respiratory problems. In the hospital, he dreamed of getting a bipap (his family spent all their money with the transplant and had no means of acquiring one) and returning home. His first dream, even if only for a few days, came true. Unfortunately, he never lived to see his second wish come true. He died on July 27th at age 17.

It is a felony, since the US$ 1,35 million spent for the transplants only by the States of São Paulo and Santa Catarina (2 Brazilian States) could pay for 270 bipap for Duchenne’s patients. This would be a great opportunity for boys as A. G. to reach their 30’s. Instead of benefiting them, the money only increased Peter Law’s bank account.

Ironically, in the waiting room of the Brazilian partners clinic, one will find an immense bible on one of the secretary’s desk. During the 20 months of the present investigation, the reporter/”godmother” noticed that the bible remained opened in the same Salm: “Glory God that rewards the good men and punishes the sinners.” Maybe the people that sell this fake treatment are waiting for the one and only Divine justice.


* Conceição Lemes  is the Brazilian journalist who pretended to have a godson affected by  DMD and responsible for the report Physicians turn a disease into a criminal affair, published on July 13, by the site No Mínimo. The link of it is: