Autistic children are experiments in medical clinics violating regulations

-  Families of patients incur thousands of Jordanian dinars for a non certified treatment

-  80 sessions of Hyperbaric Oxygen (HBOT) with no results

-   Ministry of Health, Jordan Medical Association and Food and Drug Administration silent

"Your son has autism," the words of the doctor came down like a thunderbolt on the father of two year old Izzeddine. Seven months went by, and the family is still under shock and depression not knowing what to do.

But hope returned, after they visited OXY Care clinic, located in Tlaa Al-Ali / West Amman.   They were told not to be afraid and that Izzeddine’s case can be treated easily with necessary procedures, but that the treatment is costly.  The family got hold of this assurance like a drowning man clutching a straw.

The father did not pay attention to what the manager of the clinic, Ayman al-Momani, said about the cost of the treatment. Despite the lack of money the father said: "Money can be provided, but the most important thing is that Izzeddine be treated to become normal like his brothers”.

The treatment went on for nearly three months, during which the child underwent 40 sessions of (HBOT) in addition to detoxification of heavy metals, vitamins metabolism, organic acids metabolism, and diet, according to a system called "DAN protocol."

The treatment period with its different stages, which cost around JD 10,000 ($14,000), ended and Izzedine did not recover nor improve.

 

 

Izzedine’s father sought a second opinion from other pediatricians, to be surprised that this treatment is not scientifically proven.  He was not the only one who got caught into these clinics’ trap.  Hazem al-Majali experienced the bitterness of disappointment concerning his daughter’s healing: "Anyone who has an autistic child feels optimistic toward any treatment, but optimism turned into frustration, and there was no improvement,” he said.

 

The team of this investigation documented ten cases that have resorted to (HBOT) clinics for their autistic children’s treatment, but none of them recovered or improved.

This investigation discovered that four medical clinics are violating their licenses by treating autistic children using (HBOT), which is not approved by Jordan’s Food and Drug Administration.

These clinics take advantage of the conflicts of powers between the three authorities: Ministry of Health, Food and Drug Administration and Medical Association, which play a major role in issuing and supervising the licenses. The investigation also found that these associations evade responsibility of their supervising and guiding role. Their weak supervision role over the clinics, that promote therapy for autistic children by means that are not certified medically nor scientifically for the cost of JD 4,000 to 10,000 ($5600-14,000) per one cycle of therapeutic sessions which include 40 (HBOT) sessions, have been documented.

According to a written reply from the Ministry of Health, the Ministry, being the authority that issues licenses for human medicine centers and clinics according to Regulation No. (74), for the year 2014, did not license any clinic or center using (HBOT) treatment for autism.

However, these clinics’ open doors compete to hunt out parents of almost nine thousand autistic children in Jordan, in addition to other Arab children, through advertising via Internet, and interviewing the owners of these clinics on TV.

 

 “The misfortunes of some people are advantages to others” 

 

Nine months passed by during which the team of this investigation met 10 cases concerning parents who treated their autistic children in the private (HBOT) clinics.  During the interviews they said that this treatment is futile and useless.

Half of the interviewed cases had their children undergo 80 (HBOT) sessions and more, paying JD80 to 140 per session ($115-200).

The cost of a one-hour session can reach up to JD15 ($ 20) which is the price of the Hyperbaric Oxygen, while the price of the device is about JD70,000 ($100,000), according to Dr. Asem Balawi, director of the Jordanian Hyperbaric Oxygen Therapy Center.

 

The family of Adib Akroush, a retiree from the private sector, paid around JD10,000 ($14 000) hoping that his grandson, William, will be healed from autism at OXY Care clinic. He said that "All cases that I’ve seen at the center paid a lot of money and finished all described sessions with no benefit from the oxygen therapy."  "These clinics are not more than dealers/merchants and we as parents hold on to hope that our child may recover from autism, but unfortunately it was useless."

The mother of the child Abdelhamid said "God our provider is sufficient" after what happened. When she sold her jewels so that her son will be treated, she was full of hope that he will be healed from autism." But hopes evaporated after the last session.

Samir Abdullah is under a burden of debt, being worn out due to the high cost of the treatment; nevertheless his son did not recover from autism after 40 (HBOT) sessions.

The team of this investigation did not find any certified rate for (HBOT) therapy in the medical fees list published in the Official Gazette under number (4912) issued on 16/6/2008.

At the same time, they did not see any price list in a noticeable place in the four clinics that use (HBOT) therapy for autism, namely: (OXY Care, Total Wellness, Autism Medical Center and Jordanian Center for (HBOT) therapy).

Jordan Medical Association is the authority responsible of supervising these clinics to display a pricing list, otherwise it is considered a violation with the provisions of doctors’ wages; and the instructions issued in accordance with it is considered a disciplinary offense as mentioned in the Association law, and in the regulations issued according to Article 8 of the Medical wages system.

Treatment not certified

 

Jordan’s Food and Drug Administration did not approve the (HBOT) therapy for autism, according to a written reply sent to the team of the investigation.

According to Hayel Obeidat, Director General of Jordan’s Food and Drug Administration, “the use of (HBOT) therapy for autism is a new heresy, not approved by the Food and Drug Administration, and there is no medical drug that treats autism up until now."

Obeidat believes that "this therapy is used by people who are looking for a quick profit, taking advantage of people's need, and this is contrary to the ethics of  Jordanian society."

US Food and Drug Administration (FDA), the most famous in the world of medicine, confirmed that treating Autism by (HBOT) has not been proven clinically, and is ineffective.

The same administration issued in April 2014 a statement entitled: "Beware of false and misleading claims for the treatment of autism." It comprised the following:  (HBOT), Detoxification of heavy metals operations, Organic acids metabolism, Vitamins metabolism, Fatty acids and Diet. It concluded that "these procedures are not a cure for autism; they are ineffective and unsafe and carry health risks."

All these procedures are used at OXY Care and Total Wellness clinics in Amman.

Dr. Saleh Ajlouni, Chief of Pediatric Department at Queen Rania Pediatric Hospital said that “we do not use (HBOT) therapy for treating autism because it is not scientifically proven, and many researches refuse it.”

 

Unlicensed Clinics

 

According to its written reply, the Jordanian Ministry of Health did not license any center or clinic which uses (HBOT) therapy for autism treatment.

In 2011 the Ministry of Health formed a committee representing private medical sector, Royal Medical Services, Medical Association, university hospitals in addition to the Ministry of Health, in order to study the possibility of treating Autism by (HBOT) therapy.

Dr. Samir Al-Faouri, director of pediatrics specialty at the Health Ministry, said "the committee concluded that the (HBOT) therapy is futile and useless for the treatment of autism, and recommended not to license any center using this technology for autism treatment."

 

Collective Violations

 

The team of this investigation documented six cases out of ten who were treated by (HBOT) at OXY Care clinic. During individual recorded interviews, families complained that their children did not recover. The supervisor in charge at the clinic, Ayman al-Momani, personally supervises the treatment.

We arranged a video interview with Al-Momani to see his response to all the issues we documented. But he managed to get away of it under the pretense that he did not like the topics we wanted answers to.

The team of this investigation decided to discuss the questions publicly, in front of the clinic staff and in front of the camera:

-        Team:  Dr. Ayman, answer our question about why are you avoiding the media?

-        Secretary:  You are dismissed

-        Team:  Who can answer our questions here?

-        Sattan Qasrawi (General Practitioner - GP): The Head of the Center, (he meant Ayman Al-Momani.)

-        Team:  Is the clinic licensed by Jordan’s Food and Drug Administration to treat autism with (HBOT) therapy?

-        Sattan: "Yes it is licensed, if you’re not sure, go to the Food and Drug Administration, I will not kiss your hands and beg you to believe me."

-        Team:  Is the clinic licensed by the Ministry of Health to treat autism by (HBOT) therapy?

-        Team:  Is the clinic licensed by the Food and Drug Administration to treat autism by (HBOT) therapy?

-        Sattan: "I’m telling you to go to the Ministry of Health. The clinic is licensed to treat autism with (HBOT) therapy."

-        Team:  Can I see the license?

-        Sattan: "I’m telling you it is licensed."

-        Team:  Is it permissible for you as a GP to treat autistic children with (HBOT) therapy?

-        Sattan: "Yes it is."

-        Team:  Do you have proof of that?

-        Sattan: "Please have this man leave (He meant the photographer) or you both get out.  Go to the Ministry of Health, please."

 

Pharmacist practicing medicine

 

Through investigation we discovered that Ayman al-Momani, the manager at the clinic, is not a registered doctor at the Medical Association.  But he is a registered pharmacist with the Pharmaceutical Professional Association and the clinic is registered under his father’s name, Doctor Abdul Hafeez Momani, who is a pediatrician working at a clinic located in cinema street, in Irbid, according to the Medical Association’s records.

Doctor Abdul Hafeez answered the team’s phone call; he said "the clinic is registered under my name, and I have appointed a doctor, there as a manager, you can go to and ask him” - He meant his son Ayman Al-Momani.

To confirm that this information is correct the team sent a letter via express mail to OXY Care clinic on January 5th, 2015, in which the team requested a copy of the license allowing them to use (HBOT) therapy for autism treatment, and also a copy of their professional license. They requested the name of the licensee as well. But we did not receive any answer until the date of the publication of this investigation.

 

Experiment of 200 Oxygen sessions

 

In the Total Wellness clinic for the treatment of autism, located in Shmeisani / a neighborhood of Amman, the treatment of two children were documented, but they did not benefit from (HBOT) therapy, according to what their parents said to our investigative team.

Dr. Mohammed Al-Momani, the supervisor at the clinic explained why these children did not benefit from this therapy, he said that "these children are resistant to the treatment and one session is not enough, they might need 40 sessions, or maybe 80 or 120 or 200 of (HBOT) sessions."

Momani who was trained at the American organization "Defeat Autism Now"(DAN) said:  "We keep on giving oxygen until the child improves, because we do not know where the upper limit of response is, and there is no test that shows how many sessions they need, only by experiment can  we see the limit where the child starts to respond."

The words that Dr. Momani tried to hide about the truth concerning (HBOT) therapy, the technician at the same clinic revealed: "This treatment is not internationally recognized; because it did not get a minimum percentage of approval it is not considered a 100% remedy for autism."

Momani was unable to show us a license allowing him to use (HBOT) for the treatment of autism in his clinic, saying: "I am not required to have a license for the oxygen use, we as doctors are entrusted with the lives of children by the Hippocratic oath, and since I am entrusted with the lives of children, don’t you entrust me with the oxygen device"?!

 

Center Violating Regulations

 

We accompanied Um Amer and her autistic three year old child to the Jordanian Hyperbaric Oxygen Therapy Center in the Isra’ Hospital. Her son was diagnosed with autism, and he was ordered 20 sessions of (HBOT) therapy to help him recover.  The duration of each session ranges between 60 to 90 minutes, at a cost of JD140 ($200) each session.

For ten dinars, Um Amer got a medical report to submit it to the Royal Court hoping to get financial exemption, because she cannot afford to pay the expenses of the treatment, according to the documentation of our hidden cameras.

Official letters from the Ministry of Health shows that in 2004, the ministry licensed a unit for the treatment of (HBOT) within the Specialty Hospital, under the supervision of Dr. Assem Balawi, Cardiovascular and Thoracic surgeon.  In 2014 this unit has moved to Isra’ Hospital under the name of: “the Jordanian Hyperbaric Oxygen Therapy Center” and under Dr. Assem Balawi supervision.

According to the ministry's written response, this center is licensed to treat various diseases including autism.

In defending the center, Dr. Assem al-Balawi, the director of the center said: "concerning autism treatment, our issues are legal, we do not treat autism as we treat any other disease, we try to give a refreshing stimulus of oxygen to the patient, and if he benefits from it then good for him."

Balawi continues: "the Jordanian Food and Drug Administration is an imitator and not a creative body, if the US Food and Drug Administration decide that therapy is useful to autism then it becomes useful in Jordan

 

Medical Center for Autism

 

The doctor at the Medical Center for Autism, Najati Solh commits a number of contradictions in justifying his use of (HBOT) therapy in the treatment of autism. While he says: "There is no strong scientific research confirming that the oxygen cures autism," he would at the same time acknowledge that he uses it "in a very correct and strictly rationed way for the treatment of autism."

"I asked that (HBOT) therapy be used for only three cases, the children have slightly improved, according to the parents, while continuing the rehabilitation program," Dr.  Solh added.

While he was unable to show us a valid license from the Jordan Food and Drug Association and from the Ministry of Health allowing him to use (HBOT) therapy for autism treatment in his clinic, he confirmed that he "does not violate the law, and that the Jordan Food and Drug Association falls short in conducting scientific researches for getting the approval about the use of the oxygen in autism treatment."

 

Ministry of Health evading its responsibilities

 

The Ministry of Health says that since 2010 and up to-date it has not received complaints about private clinics and centers using (HBOT) therapy with autism. No procedures regarding these clinics during that period were taken, according to the ministry's written response to the investigation’s team.

The ministry, also did not carry out any inspection to these clinics and centers, since 2010, under the pretext that the "(HBOT) device is a medical device for the treatment of many diseases, and the supervision is the responsibility of the Jordan Food and Drug Association. According to the Ministry’s reply, The Ministry does not examine specific medical devices."

In its reply, the Ministry explains that "until 2014 the licenses of the clinics were under the Medical Association responsibility."

Chief of Medical Association, Dr. Hashem Abu Hassan denies it: "The official authority for opening and closing clinics is the responsibility of the Ministry of Health. I do not throw the burden on them, but it is the Ministry who is in charge by law", pointing out that the Association "does not have the executive authority to close any center or clinic. But we send to the Ministry of Health requests related in this regard and the Ministry is the executing party."  The   Ministry of Health has not received any requests from the Medical Association to close any of the clinics and centers using (HBOT) for autism according to Abu Hassan.

These ambiguous responses led us to request an interview with Dr. Ali Hiasat, the Minister of Health. The Ministry is primarily responsible by law for the preservation of public health, in terms of supervision, prevention and therapy. It is also concerned in regulating health services in both public and private sectors and supervising them.

The intended interview was postponed three times by the Minister.

We contacted his office, and called his phone dozens of times for more than a month to arrange a new appointment, but the apology was the master of the situation.

The spokesman for the Mass Media Ministry, Hatem Alazroei, and the director of the Professional Permits and Licensing department at the Ministry of Health, Dr. Qasem Al-Rahahleh also apologized and didn’t give any statement in this regard.

All this led us to try to take a response from the Minister before his meeting at the Jordan Food and Drug Association on January 22, 2015 starts, but he promised to conduct an interview within a week. The promise was not fulfilled until the date of the publication of this investigation.

 

Food and Drug Administration: “This is not our responsibility”

 

While the Jordan Food and Drug Association is affirming that it does not support (HBOT) treatment for autism, and that whoever is using it is committing a violation, the Association stated that supervising the use of (HBOT) therapy in clinics and centers is not its responsibility, because oxygen treatment is not a medicine, according to Dr. Hayel Obeidat, Director General of the Jordan Food and Drug Association.

In justifying why the Association does not supervise, Dr. Obeidat said that the regulation over these clinics is the specialty of the Medical Association and the Ministry of Health, stressing that the role of the Association lies in controlling the use of medicines. But he adds: "we will not give up or evade our responsibilities in supervising the use of drugs in Jordan… I promise you that the Association will coordinate with the Medical Association and the Ministry of Health to inspect these clinics."

Chief of Jordan Medical Association, Dr. Hashem Abu Hassan response was that, "the association does not have a role regarding medical drugs and treatments, whatsoever; it is the responsibility of the Jordan Food and Drug Association, including any counterfeit, smuggled, unregistered medicine, or medicines whose validity is expired."

The objectives of the Jordan Food and Drug Association, which is a semi-autonomous government institution under No. 41 for the year 2008, have been identified to ensure drug safety, its effectiveness and quality or any other material prescribed by the drug and pharmacy law.

The Drug and Pharmacy law under No. 12 of the year 2013 defines the word drug as: "any substance or active substances that lead to the diagnosis, or treatment, or cure, or prevention of disease in human being, or which is described as having these advantages."

Dr. Saleh Ajlouni, Chief of Pediatric Department at Queen Rania Pediatric Hospital calls on the Jordan Food and Drug Association to tighten its supervision over the clinics that use (HBOT) as a drug for Autism because it is a non-scientific and incorrect practice.

Association falling short

The Chief of Jordan Medical Association justifies the existence of private clinics violating the regulations, that the association cannot pursue the huge number of clinics. There are about 28,000 doctors registered in the association and about 10,000 doctors in the private sector, and nearly four thousand private clinics across the kingdom.

Abu Hassan stresses that "the Association is not falling short."

According to Dr. Abu Hassan the association cannot make any step due to lack of information or complaints against the use of (HBOT) therapy for autism treatment.

Adib Akroush the grandfather of William the autistic child explains why he didn’t  make any complaint because he doesn’t trust that these concerned institutions were able to regain his right or even do anything.

He was wondering, "Who should I complain to?

Ziad Haddadin, the lawyer who is a specialist in medical issues, advised the victims to resort to "the court because it is the only impartial and fair body, unlike the association, which aims to protect its members."

He continues by saying that "resorting to the court also protects the Association from the suspicions of the person who resorts to court because the Association is the referee and the opponent at the same time in the complaints filed against its members."

The law of the Medical Association prohibits in article 10 that, "doctors should avoid methods that may be harmful to the medical profession specially those things that are in the area of cheating, pretending to discover a way of diagnoses or treatment which has not been proven or confirmed scientifically."

The Association has the right to inspect the doctors’ clinics whenever necessary, in accordance with Article 9 of the Law of the Association.

Every doctor violates the law of the Association or violated his professional duties exposes himself to the Disciplinary Board procedures ranging from warning punishment to full ban from practicing the profession in accordance with the Association law.

Former member of the board of the Association, who requested anonymity, was displeased with the Board and its disciplinary committees by their negative solidarity with the employees of the Association for electoral purposes or personal interests. But Chief of the Association of Doctors denies it.

The Association did not respond to a request for information from the team of this investigation in November 18th, 2014, which consists of nine questions inquiring about the number and nature of Association’s action against the violation of the medical clinics, and the number of inspection visits to medical clinics.

As the Ministry of Health, the Medical Association and the Food and Drug Administration are failing to carry out their inspection duties, Izzeddine and other autistic children will remain mice experiments in the hands of dealers/traders of oxygen.

 

*This investigation is prepared by the investigative unit at Al-Balad radio and Ammannet website with the support and supervision of “ARIJ” the Arab Reporters for Investigative Journalism.