Autistic Children: Victims of Unapproved Centers
By Mussab Al-Shawabkeh and Hanan Khandajki
Amman, March 26, 2015
(Ammannet) – “Your son is autistic.” These were the words uttered by the doctor to the parents of Ezzedine, 2.. The news hit the parents hard, leaving them in a state of shock for nearly seven months. After a visit to OxyCare clinic in Tla’a al-Aly, West of Amman, there was more hope for the family of Ezzedine.
Ayman Momani, the person in charge at the clinic, told both parents that the suggested course of treatment will be easy but costly. “I can find the money. The most important thing is that he gets treated and becomes (normal) like his brother,” replied the father.
The Hyperbaric Oxygen Therapy, he said, would last for three months. It would include 40 sessions of compressed Oxygen to capitalize on several biomedical techniques to treat children with Autism on ground the problem is a biomedical disorder caused by a combination of lowered immune response, external toxins from vaccines and consumption of certain foods in line with the so-called DAN (Defeat Autism Now) Protocol.
The various stages of Hyperbaric medicine were completed at a cost of JD 10,000 ($14,000). But Ezzedine was not cured. His condition did not improve. This forced his father to consult several doctors, all of whom confirmed that Hyperbaric Oxygen Treatment – effectively giving high concentrations of oxygen at increased atmospheric pressure, is not medically approved, in Jordan and in many Western countries, including the USA.
Ezzedine’s father is not the only one who has been exposed to a scam orchestrated by such clinics. Hazem al-Majali, the father of Amal, an autistic child, went through the same disappointment after being told that her condition would improve. Both investigative reporters documented the cases of 10 autistic children who had used Oxygen therapy with no results. None of them were cured or showed any signs of improvement.
These reporters focused their investigation on four such clinics providing the Oxygen treatment for autistic children in Amman without any licensing as this treatment is not approved by Jordan’s Food and Drugs Administration (JFDA). These clinics capitalize on the contradicting roles of eporters focused their onsult same headlne wthree concerned authorities that should be supervising and issuing licenses to such clinics: the Ministry of Health, the JFDA and the Association of Jordanian Medical Doctors. The three have denied any responsibility in supervising these clinics, which charge between JD 4,000 – 10, 000 (US$ 5,600 – 14,000) for 40 sessions of Oxygen therapy.
The Ministry of Health is in charge of licensing these medical centers and clinics as per protocol no 74/2014. But it has not issued any license to any clinic for treatment of autistic children with Oxygen therapy, according to the findings of both reporters. These clinics are operating and competing to lure the parents of approximately 9,000 autistic children in Jordan.
This figure excludes parents of Arab autistic children who visit Jordan in search of Oxygen treatment after being lured by Internet ads and TV programs hosting the owners of these clinics. Over the course of this nine-month investigation, both reporters interviewed the parents of 10 autistic children who had received such treatment at Oxygen clinics.
All these parents reported lack of progress in the condition of their children. Half of the cases said their children underwent 80 sessions of Oxygen therapy. The cost of a single session ranges between JD 80–140 ($115 to $ 200.) According to Dr. Asem Balaawi, director, Jordan Center for Oxygen Therapy Treatment, the (actual) cost of a 60 minute session is JD 15 (US$ 20) while the machine itself costs JD 70.000 (US$ 100.000).
He founded the first such center in Jordan in 2004. Adeeb Akroush, a retired employee, said he had paid JD 10,000 (US$ 14,000) in treatment costs, hoping to cure his autistic grandson, William, at OxyCare Clinic. “All the cases I saw at the clinic paid a lot of money, their children had undergone the recommended sessions, but the Oxygen therapy did not make any difference.
These people are “traders”, he said, referring to owners/managers of these clinics. ”We cling to any thread of hope. Unfortunately, there are no results!” Abdel Hamid’s mother was speechless. She had sold all her gold in order to treat her autistic son with “Compressed Oxygen Therapy” hoping he would be cured. Her hopes evaporated with the final oxygen therapy session.
The reporters did not find a fixed cost for Hyperbaric Oxygen Therapy on lists that set medical treatment costs at the four clinics. At the same time, there was no display of the price list for Oxygen therapy at the four centers/clinics that treat autism in Jordan.
These are: “OxyCare”, “Total Wellness Clinic”, “The Autism Medical Centre” and “Jordan Centre for Oxygen Therapy Treatment”. The Association of Jordanian Medical Doctors is the body responsible for supervising clinics and making sure their price lists are available.
Failing to declare the cost charged for any given treatment in public is considered illegal as per article no. 8; regulating medical costs. The JFDA has not approved the Oxygen treatment for autistic children as this treatment remains ineffective, as per their written replies to a set of questions sent by both reporters. Dr. Hayel Obeidat, Director of JFDA says: “the use of compressed Oxygen in the treatment of autism is a new fad which is not approved by the Institute.
There is no treatment for autism, to date.” He believes that “people who treat patients using these therapies are only after making profit. They are using people in need.
This contradicts social morality in Jordan.” In April 2014, Dr. Obeidat’s institute issued a statement warning against “false and misleading assumptions regarding the treatment of autism.” Among these assumptions were: Compressed Oxygen Therapy, the process of ridding the body of heavy metals and uric acids.
The statement also said that “these procedures do not cure autism, not to mention the danger they pose on the health of the patient. They are neither useful nor safe.”
The Ministry of Health issues licenses to medical centers and clinics as per licensing protocol no. 74/2014” Article (4-A): The committee takes the following tasks/responsibilities which are recommended to the minister (of health) in order to issue the appropriate decision in this matter:
1. Reviewing application forms of medical centers and clinics.
2. Supervising the locations of the centers and clinics to make sure they follow set conditions.
3. Checking regularly on these centers and clinics to make sure they abide by the conditions and regulations identified. All of the above procedures are being used at “OxyCare” and “Total Wellness” clinics in Amman.
Dr. Saleh al-Ajlouni, director of the pediatric unit at Princess Rania al-Abdullah Hospital (military-run hospital) says: “treating autism, using Compressed Oxygen Therapy, has not been proven scientifically. There are a number of research papers denying that Oxygen therapy could cure autism patients. That’s why, it cannot be used.” The ministry of health did not issue licenses to any clinics or centers that use Compressed Oxygen Therapy- as per their written reply to both reporters.
In 2011, the ministry set up a committee representing the private medical sector, the army-run Royal Medical Services, the Jordanian Association of Medical Doctors as well as university hospitals. The committee was to study the possibility of treating autism using Compressed Oxygen.
According to Dr. Samir al-Faoury, the committee concluded that:” Compressed Oxygen does not cure autism. It recommended that no licenses are to be issued to any centers that treat autism by means of Compressed Oxygen Therapy.” Both reporters documented how six of the 10 autistic children have been treated using Compressed Oxygen Therapy at “OxyCare” clinic. During private interviews with the families of those children, many complained that there was no improvement in the condition of their children. They also confirmed that Mr. Ayman Momani is the supervisor in charge of the clinic.
The reporters arranged for a videotaped interview with Mr. Momani in order to get his reaction to complaints raised by the cases they talked to. However, he refused to comply, giving the excuse that he did not like the points they wanted to raise with him on camera in the presence of clients.
– The reporters: Mr. Ayman, please answer our questions- why are you hiding from our cameras?
– The secretary: Get out of here!
– The reporters: Anyone here to answer our questions?
– GP, Dr. Sitan al-Qasrawi: Head of the Centre, Mr. Ayman Momani
– The reporters: Is your clinic licensed by the JFDA to treat autism, using Compressed Oxygen Therapy? – Dr. Sitan: Yes, it is licensed. If you don’t believe me, go check that out yourself at the ministry.
I’m not going to beg you to believe me.
– The reporters: Is the clinic licensed by the Ministry of Health to use Compressed Oxygen?
– Dr. Sitan: I’m telling you, it is. Go to the Ministry of Health. The clinic is licensed to treat autism, using Compressed Oxygen. –
– The reporters: Can we see the license?
– Dr. Sitan: I’m telling you, it is licensed.
– The reporters: As a GP, are you allowed to use Compressed Oxygen to treat autistic children? –
Sitan: Yes, I am.
– The reporters: Can you prove that? –
Dr. Sitan: Please get this guy out (pointing at the cameraman). And you (reporter) go out with him as well. Go to the Ministry of Health and check for yourselves.
4;Article # 5 no. 74/2014: Procedures regulating licenses for clinics and medical centers: A) A Clinic or medical center submits their application forms to the committee as per the procedures assigned by the ministry, attaching the following documents:
1. A copy of the medical license issued by the ministry
2. A written approval from the Jordanian Medical Association of Doctors
3. A contract of ownership of/or rental of the centre
4. A plan for the interior space of the center/clinic
5. A registered trade mark B) The applicant must be a doctor. The percentage of medical staff ownership should not be less than 51% of the total number. Mr. Momani is a pharmacist and is registered at the Association of Jordanian Pharmacists. The clinic is registered in his father’s name: Dr. Abdel Hafeez Momani, a pediatrician.
His clinic is located at Cinema Street in Irbid, Jordan’s second largest city, according to registration papers at the Jordania Association of Medical Doctors. Our investigation has proved that Mr. Ayman Momani, the person in charge of the clinic, is not a registered at the Jordanian Association of Medical Doctors. Before hanging up the phone, Dr. Abdel Hafeez Momani told the reporters: “the clinic is registered in my name.
I appointed a doctor. There is an admin person you could consult with” he said, referring to his son, Mr. Ayman Momani. To confirm the above information, the reporters sent a registered letter to “OxyCare” clinic, on January 5th 2015, and asked to be provided with a copy of the registered license allowing the clinic to use Compressed Oxygen Therapy for the treatment of autistic children. They also asked for the certificates/ documents allowing practitioners to work at the clinic and for the name of the person on the license.
However, they have yet to receive a reply. At “Total Wellness Clinic” for autism treatment in Shmeisani – a suburb of Amman – we documented the treatment of two children, who did not benefit from Compressed Oxygen Therapy, according to their families. Dr. Mohammad Momani confirms that those children did not respond to the Oxygen treatment. He gave his reasons for that saying that the treatment over 40 sessions is not enough.
They may need 80, 120 or 200 sessions of Compressed Oxygen Therapy. Dr. Momani, who trained at the American society “Beat Autism Now”, said that he keeps administering the Oxygen therapy until positive results are achieved. We don’t know the maximum number of sessions necessary for the patient to respond to the treatment. There is no test to indicate the number of sessions required.
We have to experiment to identify when the child will benefit”. What Dr. Momani did not state was voiced by the technician at the same clinic. “This treatment has not been proven to cure autism as there is no guarantee that it’s a reliable course of treatment.
It is not a 100% treatment per se.” Dr. Momani could not provide us with an official license allowing him to treat autism using Oxygen therapy at his clinic. “I don’t need a license to administer Oxygen. We are doctors who safeguard the lives of children. Do you think I won’t be able to use a machine that administers Oxygen, safely? Both reporters accompanied the mother of three-year-old Amer as she took him for treatment at the Jordan Centre for Compressed Oxygen Therapy at the private Israa’ Hospital.
She was given a report indicating that her son suffers from autism symptoms and that he needs 20 sessions of Compressed Oxygen Therapy in order to be cured. Each session is between 60 – 90 minutes long.
This would cost JD140 (US$ 200.) The center provided Amer’s mother with a report at a fee of JD10. She had hoped that she would be exempt of treatment costs if she were to submit the report to the Royal Court as she cannot afford to pay for the treatment of her son.
(This was documented, secretly, on video.) An official paper from the Ministry of Health indicated that in 2014, the ministry had issued a license for Compressed Oxygen Therapy to be administered at a unit inside the “Specialized Hospital”, under the supervision of an oncologist and specialist in blood vessels, Dr. Asem Balaawi. In 2014, the unit was relocated to Israa’ Hospital, under the name of “Jordan Centre for Compressed Oxygen Therapy”, under the supervision of the same doctor. This centre, as per a written letter from the ministry, is licensed to treat various illnesses. However, autism is not one of them.
Asem al-Balaawi, the manager of the centre, defended the institution saying: “All our paper work is legal when it comes to autism treatment. We do not treat autism as an illness, we try to give the patient a boost of Oxygen hoping that he/she might benefit. The JFDA just cat copies other similar centers as they don’t have their own input.
If the FDA in the US decides that oxygen is beneficial in treating autism cases, then the Jordanian FDA will follow suit.” Dr. Najati al-Solh, head of the Autism Medical Centre, contradicted himself when he tried to justify the use of Compressed Oxygen Therapy: “There are no scientific grounds supporting oxygen therapy in the treatment of autism, yet here at the centre, we administer it correctly.”
He adds “We have had three autism cases where the children showed signs of slight improvement after the Oxygen therapy, according to feedback from the parents. This treatment went side by side with the rehabilitation program they took part in.” While he failed to show us an updated license from JFDA, he said that the Ministry of Health approves of the Compressed Oxygen treatment at his clinic.
He stressed “that he was not doing anything illegal. JFDA is not up to date with the latest scientific research with regards to approving Compressed Oxygen in treating autism”. The Ministry of Health said it has not received any complaints about clinics or medical centers that treat autism using Compressed Oxygen, since 2010. Therefore, no action has been taken against those clinics, the Ministry said in a written reply.
The Ministry has not checked on any of those clinics and private centers since 2010. Their excuse; “The machine that is used to administer compressed Oxygen is used in various medical conditions. JFDA is responsible for supervising and checking on clinics that use it.
The ministry does not check on such machines. Up to 2014, the issuing of such licenses was the responsibility of the Association of Doctors”.
article (3) pertaining to the Public Health law no. (47) 2008 The Ministry of Health is responsible for all health matters in the kingdom, especially with regards to the following matters:
A) Protection of public health by providing preventative, therapeutic medical services, in addition to inspection. B) Regulation and supervision of health services provided by both public and private sectors.
Dr. Hashem Abu Hassan, president of the Jordanian Association of Doctors disagrees: “The Ministry of Health is the one legally responsible for giving permission/license to clinics. The syndicate does not have an executive power to shut down any center or clinic.
We address the Ministry of Health. Then, they do that job.” According to Dr. Abu Hassan, the ministry has not received any requests to close any of the clinics that use Oxygen therapy in treating autism. This confusion led both reporters to request an interview on September 18, 2014, with the Minister of Health, Dr. Ali Hyasat.
His ministry is the main responsible body- as per the law- for protecting public health, at all levels; inspection, prevention and therapeutics.
It is also responsible for regulating health services in both public and private sectors. However, the minister postponed this interview three times. Over a month, both reporters tried to contact him a dozen of times via his office and his private cell number to arrange for an interview, but they only got excuses. Mr. Hatem al-Azraai, the Ministry’s spokesman, and Mr. Qasem al-Rahahleh, director of the licensing section refused to comment on that matter. Both reporters tried to get an interview with the minister on Jan. 22, 2015, as he was going into a meeting at JFDA. He promised on camera to do an interview within a week.
However, this never materialized. While JFDA confirmed that Compressed Oxygen is not approved by them, regarding autism treatment and that the use such therapy is illegal, it insisted that it is not responsible for inspecting the use of Oxygen Therapy by private centers and clinics, as oxygen is not a medicine, according to Dr. Hayel Obeidat, Director of the JFDA.
Dr. Obeidat justified his position, saying that inspection is the responsibility of the Ministry of Health and the Jordanian Association of Medical Doctors. The role of the JFDA is to inspect medicine.
“We will not overlook our responsibility to inspect the use of medicines in Jordan… I will do my best to coordinate both with the Association and the Ministry of Health to inspect those clinics.” Dr. Abu Hassan, President of the Jordanian Association of Medical Doctors responded saying: “The syndicate has no role regarding medicines- in all its forms.
This is the responsibility of the JFDA. They supervise any medicine that is not registered, expired, or forged.” Law no. 41/2008 of the JFDA- a semi-independent government body – specifies its responsibility in making sure that medicines are safe. It supervises quality control and thus should abide by any laws that govern medicine and pharmacology. Law no. 12/2013 defines “medicine” as “any substance with diagnostic, therapeutic, curative or preventative characteristics that provides treatment for people.”
Dr. Saleh al-Ajlouni, head of the pediatric unit at Queen Rania al-Abdullah Hospital affiliated to the Royal Medical Services called on the JFDA to be strict in its inspection of clinics that use compressed Oxygen in treating autism, as it is neither a scientific nor an appropriate therapy. Dr. Abu Hassan justified the unlawful practices of such clinics on ground that the syndicate cannot follow up or supervise the huge number of clinics. There are approximately 28,000 doctors in the syndicate operating in the private sector alone. And there are almost 4,000 clinics throughout the kingdom.
Dr. Abu Hassan insisted that the “syndicate is not negligent” but that it cannot take action when there is no proof of any illegal practices. There have been no complaints either against any autism clinics that use Oxygen Therapy as a treatment.
Mr. Adeeb Akroush, who spent a fortune on treating his autistic grandchild William, said that he does not contemplate filing a complaint because he believes that no institution could give him his rights. He asked: “Who do I complain to? If I cannot do anything, how can others who are less fortunate than me take any action? Mr. Ziyad Hadadeen, a lawyer specialized in medical cases, advised distressed parents to go to court, the only just and interest-free institution unlike the syndicate which will side with its members.
“The syndicate is the judge and the antagonist at the same time”. Article #10 of the Jordanian Association of Medical Doctors warned that doctors should not behave in a manner that could humiliate the medical profession, especially when it comes to being deceitful, as well as offering any diagnosis or treatment that is not scientifically proven. The syndicate has the right to inspect medical clinics when necessary, according to article # 9 of the syndicate laws.
Doctors who break the syndicate law or do not practice professionally, could subject themselves to questioning by the syndicate. According to the syndicate laws, the punishment ranges between a warning and a ban from practicing the profession all together.
A previous syndicate member, who refused to be named, blamed the council of the Association for siding with its members, in return for personal favors. However, the president of the syndicate has denied this allegation. The syndicate did not respond to the request sent by both reporters on November 18, 2014 to have answers to their nine questions, including explaining the measures taken by the syndicate against clinics that violate medical procedures.
They also asked about the number of inspections conducted on those medical clinics. Due to the lack of professional inspection by the Ministry of Health, the Association of Doctors and the JFDA, the autistic children remain guinea pigs under the thumb of Oxygen therapy traders.
This investigation was completed by the investigative journalism unit at “Radio al-Balad”, Ammannet website with support from ARIJ (Arab Reporters for Investigative Journalism)
**statement of disclosure
In late March 2015 the Jordanian Government announced it would close down five centers using oxygen therapy to treat autistic children as a result of an ARIJ-supported investigation made by Radio al Balad.
The decision to close down the centers was made by the Jordanian Government prior to the publication of the investigation .
This decision by the Government was taken after a visit to the Minister of Social Development by the ARIJ Chairman, who is also the owner of Radio al Balad.
During this meeting the minister was informed about the upcoming investigation and its findings. No changes were made to the investigation as a result of this meeting, and the investigation did lead to the Government closing down the mal-practicing centers to the benefit of the victims of these mal-practices. Nevertheless, the ARIJ board assigned a committee to investigate whether the visit to the Minister was in compliance with ARIJ’s ethical and transparency policies.
The Board concluded that the decision of the chairman was a misjudgment, and the Board has taken steps to implement a stricter code of governance that would prevent similar incidents from happening in the future.