People being scammed in Kararchi in the name of Stem Cell Therapy

[sparklingway]

Depending on desperation

A company claims to have broken new grounds in stem cell therapy, but the truth seems far from it​

By Kamila Hyat

Even today conmen sell exotic "cures" to people suffering all kinds of ailments. Most of us are familiar with such quackery.

But in the rapidly changing world of the 21st century, medical fraud has assumed bigger dimensions -- capitalising on the promise offered by therapies of the future such as stem cells. While today, stem cells are accepted treatment for a few conditions, "clinics" cropping up around the world bank on the desperation of those suffering incurable disease. Such clinics exist in India, China, Mexico and elsewhere. The trail to some may lead from Karachi.

"I contacted the people offering stem cell therapy at a private hospital in Karachi, about two or three years ago, to seek treatment for my daughter who has thalassamia. I met Mr. Tariq Mumtaz, the representative of Dr. Ilham Saleh Abuljadayel. He was a persuasive talker, but I was not comfortable with the meeting. The price quoted was Rs. 3 to 4 lakhs per session. I needed proof, so I asked for contacts. They did give me two or three numbers for patients, but none of the people I spoke to were even literate. I think they didn't know what the company was doing with their kids," Zaini Suhail told TNS. Afterwards she dropped the matter believing it was a scam.

The story of "stem cell therapy" in Karachi is complex. It begins with former president Pervez Musharraf. In July 2005, Musharraf, then head of state, inaugurated a joint study by Pakistani and Saudi researchers on a therapy termed "retrodifferentiation." The technology had been developed by a UK-based company, Tristem, [http://www.tristemcorp.com/index.htm] owned by Saudi-born biologist Dr. Ilham Saleh Abuljadayel and her husband, Ghazi Dhoot. Dr. Abuljadayel said she had, in the early 1990s, discovered a technique that would convert adult blood cells into stem cells that could give rise to brain cells, heart cells or other kinds of cells. Conventional stem cell technology harvests stem cells from the body and carefully nurtures them in the laboratory to coax them to grow. The swift conversion of ordinary white blood cells into stem cells was a novel claim.

Dr. Farhat Moazzam, Chairperson, Centre for Biomedical Ethics and Culture (CBEC) at the Sindh Institute of Urology and Technology (SIUT) told TNS "Stem cell research, including retrodifferentiation, where adult cells are reverted to an immature state continues. Various studies are on, but it is not yet an approved therapy for use on patients."

The technology, and a mobile machine that carries out the conversion process according to Tristem, were both patented. In late 2004, Dr. Ilham was permitted to conduct research on a plastic anaemia by the Indian Medical Research Council. According to Indian doctors quoted at the time, none of the four patients treated did well. The company was asked to leave India shortly afterwards due to ethical violations -- and re-located itself in Pakistan.

Approval for research was granted by the Pakistan Medical Research Council (PMRC), which reviews proposals for research and clinical studies and monitors progress. Tristem began work with a local partner, a private, commercial company, Healthcare Solutions International (HIS), owned by Tariq Mumtaz -- who has described himself to clients as a banker or businessman. He has no known medical expertise. Ads were placed in newspapers, offering hospitals the "RetroStem" machine to "treat thalassaemia and other diseases". Concerns were raised about the ethics of treating patients with an unproven technique. Soon afterwards, Tristem and Dr.Ilham pulled out of Pakistan.

Dr. Aamir Jafarey, from CBEC told TNS "Research explores questions while therapy aims at providing a cure. In the case of HSI, it was ambiguous. Also, there were reports the patients who were a part of this experimental treatment were paying. Were the patients even told this was experimental?"

"I only took part in the research for pediatric thalassemia around 2005. It was an experimental treatment. It showed great hope but since it was not carried out to its logical conclusion the final result could not be known," Dr. Shakil Rizvi, a paedritician associated with the research in its early days, told TNS.

Dr. Huma Qureshi, Executive Director of the PMRC, told TNS the approval given for Tristem's work was justified. "Tristem's research was going very well. But because of internal rivalries they pulled out of the country. Other doctors and also the media began criticising them, so they asked why they should work in this environment."

"The question is did the PMRC look into the Indian fiasco. And if doctors and researchers insist the treatment is beneficial, why isn't it open to testing?" asked Dr. Jafarey.

HSI however carried on treating patients, with the RetroStem machine set up till recently in a room rented at the private Park Lane Hospital in Karachi. A former HSI employee told TNS the machine could be "set up or taken anywhere. We based ourselves at a hospital only because it had an ICU and other facilities." Those who have seen the machine operate say a vial of blood is placed in it, and "retrodifferentiation" takes place.

The Chief Medical Officer of Park Lane Hospital, Dr. Nadeem Ahsan, told TNS "Park Lane had a partnership with HSI. Tariq Mumtaz was the focal person and saw potential clients himself. HSI was using our set-up but the treatment was offered by their people, including some doctors. They left some six to eight months ago and are misleading people by placing our address on their website."

The company's website Healthcare Solutions International: Home Page, offers the "retrodifferentiation therapy" for a host of diseases. Costs range from US$6,900 to US$18,000 and claim to treat conditions including diabetes, congestive heart failure, Parkinson's disease, ALS (Amyotrophic Lateral Sclerosis) and Spinal Cord Injury. Remarkable successes are claimed on the website in the cases of all patients treated. Whether intentionally or not the impression given is that "retrodifferentiation" offers a cure. The HSI website states they are offering therapy "to treat several previously untreatable indications." Patients, who lack knowledge, with some coming in from far-flung areas, are most likely to hope for a cure.

"There is currently no known cure for Parkinson's, Motor Neuron Disease or Multiple Sclerosis, though treatment is available. Finding a cure would amount to a major medical breakthrough with huge benefits for many," neurologist Dr. Nadir Ali Syed told TNS.

A prominent Karachi-based businessman, 69, who requested his name not be used, told TNS "I was left paralysed after a stroke some ten years ago. In 2005 I got in touch with Dr. Ilham. I was told I was good candidate for the retrodifferential treatment but by the time things started moving, Dr Ilham had left.

In 2007, I was contacted by Dr Ilham's people again for treatment, this time at Park Lane Hospital. However, I did not press for it after a doctor on her team told me that it might not work. With each infusion costing Rs 12 lakhs, and at least six sittings before I saw any results, I decided I would rather save my money."

Other desperate patients have sunk into debt to finance "treatment."

Speaking to TNS from London, Dr. Ilham Saleh Abuljadayel said "We are no longer in Pakistan, because of the political turmoil and personal reasons." Tristem in London gives its correspondence address as 571 Finchley Road. According to investigations by TNS, there is no visible sign indicating the presence of the company and no other details on its website as to where the company which states it is engaged in major scientific research may be physically located. The address could be a collection point for mail.

"Stem cell transplantation is indicated in a number of disorders. Common indications are aplastic anemia, thalassaemia major, lymphomas, acute leukemia, chronic myeloid leukemia and multiple myeloma," Dr Salman Adil, consultant haemotologist and bone marrow transplant surgeon at the Aga Khan University Hospital in Karachi told TNS.

"Stem cell therapy offers a lot of hope but how is it justified to cash in on it? HSI was asking for money for this experimental treatment which has not been proven and remains a mystery. It takes years for research to show results. How can Dr Ilham and company say their study was successful? How is it that the research that was subsequently published only focuses on thalassaemia while HSI was claiming to treat everything under the sun?" Dr Jafarey said.

The story has since grown more mysterious. It appears that while HSI is still based in Karachi, it has moved out of Park Lane and treated its last patient there some eight months ago. Its Chief Executive Officer, Tariq Mumtaz, is believed to be currently located in Saudi Arabia and not available for comment. There are indications patients are treated in Saudi Arabia and Jordan.

Dr Ilham told TNS, "We are working on retrodifferentiation. Of course it was a success. We are no longer in research but applying it clinically to various fields not just haemotology and have seen very positive results in neurology, in diseases like Parkinsons, Motor Neuron Disease, Multiple Sclerosis etc." When contacted at her London number to seek treatment for a Multiple Sclerosis patient, she said "It's not a problem. We have treated many people with MS." She proposed Jordan or Saudi Arabia as venues for treatment. She said she would send the details through email but this did not happen.

With the HSI website still mentioned on multiple global sites for patients suffering a variety of incurable illnesses, it seems certain queries are received at the Karachi office. It is unclear what role is then played by the company, which in February this year renewed its membership of the Karachi Chamber of Commerce and Industry.

"Tariq Mumtaz was the financial backer for the project. Dr. Ilham had the know-how but not the money. HSI was the local partner for Tristem," Dr Huma Qureshi confirmed. Other sources say Mumtaz and HSI held a franchise to use the Tristem technology.

The Tristem website continues to give a link to HSI, with a disclaimer distancing itself from third parties engaged in "human studies."

TNS spoke to a man identifying himself as "Javed" at the HSI Karachi number. A small, run-down office, registered as the Tariq Mumtaz Health Centre, is located at the address given for HSI at 82-C, 11th Commercial Street, 3rd Floor, Defense Authority Phase II Ext., Karachi. Files fill much of the space. When TNS visited the premises, Javed said they no longer offered stem cell therapy, suggested contacting Dr Ilham and said "Why should we tell you what we do now."

Over the phone, Javed told TNS "We are no longer conducting treatment in Pakistan. We are now doing so outside the country, as it is very expensive in Pakistan. He declined to provide details. Persons who contacted HSI in the past reported being asked for Rs 3,000 merely to see Mumtaz.

TNS knows of patients treated in Jordan, with Dr. Ilham -- not it must be noted a physician -- overseeing files and patients going across from Egypt and other countries for treatment.

Ahmed Nadeem Akbar, registrar of the Pakistan Medical and Dental Council said that under a 1962 law titled, "Misuse of allopathic medicine" provincial governments were empowered to check medical fraud. In practice this does not happen. He also said the problem was "there is no law to register or regulate anyone setting up a private clinic or other such concern and offering treatment."

--- Additional reporting by Sumaira Jajja (Karachi) and Abdullah Iqbal (London)