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Healthy Skepticism International News

July 2009

Advanced Cell Therapeutics

Late one bitter East Tennessee winter night I googled “stem cells and macular degeneration.” The Advanced Cell Therapeutics (ACT) link appeared and I mouse clicked their website. Macular degeneration was among the many conditions this progressive-sounding company claimed they treated, which included multiple sclerosis, cancer, diabetes, etc. I felt a warm rush of hope.

I emailed ACT, immediately received an information packet, and called them. I spoke with Ms. Nicole Jibrail, and later Dr. Jacques Rodriguez, who told me he was a generalist physician trained in South Africa. They assured me they could help me. When I again voiced skepticism that stem cell treatment could help retinal scarring many years old, Dr. Catherine Orridge reassured me there would only be a problem if the entire retina was scarred, that since I had peripheral vision it would work.

I wanted to believe what they told me. When I was 20 years old, inserting my contact lenses one morning, I noticed a sparkling cloud in my right eye, covered my left eye, and knew something was wrong. My family ophthalmologist told me I had a problem in the back of my eyes and referred me to an ophthalmologist who was new to Knoxville. He diagnosed chorioretinitis, bilateral and central. Not only was my right eye affected, but there were perimacular lesions in the left. He prescribed oral prednisone and there was immediate improvement but not complete resolution of the right eye scotoma (blind spot) because of residual scarring. Extensive diagnostic studies were positive for a 3+ histoplasmosis skin test, presumed to be the systemic cause of my problem. Histoplasmosis is best known as a lung condition similar to tuberculosis, but is also believed to cause retinal lesions. The histoplasma capsulatum is in the soil in Tennessee. Several years later, my condition was renamed histoplasmic ocular syndrome. Now it is known as wet macular degeneration. When I was diagnosed in 1963, macular degeneration was uncommon, but now it is prevalent. Almost everyone knows people who have the condition. About 10% of cases are the wet form, the remaining 90% dry macular degeneration, which is age related.

My ophthalmologist advised me to stop smoking, get enough sleep, and avoid stress because the left 20/20 eye was at risk. Over the years, it occasionally flared up but resolved with short term steroid treatment. A consulting ophthalmologist once told me I was “Sittin’ on a powder keg.” At age 39, I noticed visual changes when the ophthalmologist who had followed me for years was on vacation. I went to a Knoxville eye clinic which had my angiograms, but the doctor who saw me misread the films and missed retinal changes. By the time I was treated, it was too late. The left eye changed from 20/20- to 20/400 after a hemorrhage from the choroid into the retina left irreversible damage. The powder keg had exploded.

For a year, I struggled without a will to live. Without central vision I can not see what I look at. The center of my visible world (and my soul) was blown away. After a year of grief and despair, I readjusted. But I never stopped hoping for a cure, that somewhere in the world there would be a breakthrough. Then I would have back the dignity of independence, read a book like everyone else, recognize people I know, travel independently, read menus, play cards, see performers on stage, and all the things I could do before my vision was impaired. Maybe this was the miracle I had dreamed about for years, a dormant dream that will not die as long as I live.

When I told Ms. Jibrail if it worked I would spread the news all over the world. She asked, incredulously, “You mean you think this won’t work?” The ACT staff members were as convincing as their website was impressive . It had several international treatment locations, medical staff, a research library, case histories, press releases, and a toll-free contact number for United States citizens. Dr. Jacques Rodriguez, a South African trained physician, a generalist, was very encouraging. My heart pounded. They told me they were concerned with regenerative medicine and their physician CEO Dr. Trossel, was a live cell specialist.

The next issue was cost. Their fee was $30,000 U.S. dollars, an incredible sum to me. I could not afford that, so they offered financial subsidy. I submitted a request and they agreed to treat me for $15,000. I had more than that in a savings account. Gosh, if I could see, I would go back to work and earn money again.

I answered a long questionnaire and faxed it to ACT headquarters in Zurich, Switzerland. Several days later, they asked me to re-fax it because they had lost my file. I thought how unprofessional they were to be so disorganized, but then they had so many patients.

I agonized, rationalized, then wired $15,000 US dollars to Advanced Cell Therapeutics headquarters in Zurich. As soon as they received the money, they emailed me pages of disclaimers, legalities to protect their company from liability, that required my signature before stem cell treatment.

I was offered an appointment in Tijuana, Mexico, on March 15, which I declined, not wanting to go to Tijuana for medical treatment because of horror stories I had heard about medical practices in Mexico from my aunt who was an emergency nurse at a free standing clinic in Arizona. Ms. Jibrail and Ms. Jackie Bray then scheduled me for their new clinic in Cork, Ireland. I was excited because I had never been to Ireland and was told it would be very pleasant in March. The clinic was located just across the walkway from Carrigaline Court, a lovely hotel with all amenities and special rates for ACT patients.

Next I had laboratory studies to do, all kinds of blood tests, including AIDS, HIV, hepatitis, etc.

I bought my airline ticket, made hotel reservations, and prepared for the March 22 appointment. Then, a week before my departure, I received an email from Ms. Jackie Bray that the appointment in Cork, Ireland, had been canceled. She assured me the company would reimburse me for my plane ticket and hotel reservations. I was rescheduled for May 16, 2006, at the Preventive Medicine Clinic in Rotterdam. Believing ACT would reimburse the money I had spent, I made other plane and hotel reservations and revived my enthusiasm.

I finally departed Knoxville, Tennessee, on May14, 2006, two days before my scheduled appointment. They wanted their patients to arrive a day early so they would not be stressed at the time of treatment since stem cell therapy worked better when one was relaxed. I spent the first night in Amsterdam at the Holiday Inn Crowne Plaza Hotel, then took the train to Rotterdam the next day. On the morning of May 16, 2006, I woke up with my heart racing, breathless, thinking could this be the day this miracle they promised would change my life. I ate a light breakfast and caught the train to downtown. The PMC was close to the train station. After lunch, I started searching for the clinic, asking directions from one person after another since I have difficulty reading street signs. Finally, I went into a clothing store in the vicinity and asked the clerk. She nodded her head saying “It’s there, in that bank building,” then lowered her eyes and turned away. There was something in her demeanor that alarmed me. I saw her reluctance, as though she regretted sending someone there. I went ahead to the building and entered the door with the enormous PMC lettering. I walked up one flight of stairs into a modest office. It reminded me of a branch library in my old South Knoxville community. It was furnished with what looked like surplus school furniture. In the middle of the waiting room was a formica top table surrounded with straight back chairs. I had been told that I would be evaluated by the ACT medical team consisting of four physicians , to include Dr. Orridge, Dr. Dunphy, Dr. Aynan, and Dr. Robert Trossel. I announced myself to the receptionist. Then a man who appeared to be a physician, although not wearing a lab coat, came into the room.

I asked “Are you Dr. Trossel?”

“No, I’m Dr. Aynan. The nurse will draw some blood for a sedimentation rate.” The purpose was to determine whether I had an active infection, I was told. Then I was ushered into his small office where he asked me a few questions, reviewing the information I had sent which included records from any physicians I had seen recently. He listened to my chest and my pulses with a stethoscope and declared “You are healthy”, which meant I could be treated with stem cells.

When I went back into the waiting room and sat down at the table, a middle-age lady was sitting at the table across from me. We chatted about health care problems. She told me her insurance benefits had been cut and she had to pay half of her charges at the PMC. She came there for chiropractic treatment and that it was essentially a chiropractic clinic. She said they had done wonders for her condition. That was encouraging. Then a lovely blond lady came up the stairs followed by her husband bringing a young man I assumed was their son in a wheelchair. A young woman, who must have been their daughter, accompanied them. They showed deference and respect to Dr. Aynan, and I could tell by their attitude they trusted and believed he would help their son.

Then Dr. Aynan informed me my sed rate was normal. He brought a small vial into the treatment room and injected the contents in both of my temples and the back of my neck just above the hairline on both sides. He said the injections in my temples were “to activate the eyes.” I was then ushered into a modest room furnished with what looked like old school desks with formica tops for a one-hour waiting period. I moved to sit beside the third patient I saw there on that day. She was a woman in her 30s or 40s from Liverpool who was accompanied by her husband. She took a tabloid clipping from her purse and gave it to me. It was a moving story about a man in his 50s who received stem cell treatment forbidden in England and got up from his wheelchair in a few hours. His wife and neighbors had all pitched in to help him raise money for his treatment, having bake sales, yard sales, etc. I also noted after I returned home that the top story of the ACT press releases on their website was about a man named Vernon, an MS patient treated in Ireland, who got up from his wheelchair in two hours. This struck me as odd since my appointment in Ireland was canceled after the Irish government would not allow an ACT clinic to be opened there. I am reasonably sure there was never an ACT stem cell treatment in Ireland, which leads me to believe ACT press releases are questionable, to say the least.

As I waited, Dr. Aynan came in to talk to the young man’s family. He told them how he would inject in the lower back and the base of the skull. He was solemn and professional in his delivery and they listened in awe. Their son was a handsome boy, very tall, his youth obvious by his smooth, full face in spite of a pencil-thin rigid body. He did not appear able to get out of the wheelchair or stand alone. Neither could he speak. But he smiled and beamed with hope, believing this treatment would help him. I wondered if Dr. Aynan had declared him healthy and able to take the treatment.

While Dr. Aynan was interviewing me, he said he had had one macular degeneration patient whose macular degeneration was caused by glaucoma. I was stunned by his ignorance. I did not recall ever hearing of a relationship between glaucoma and macular degeneration. Then he casually mentioned the government let them practice in Holland because they “did no harm.” I continue to re-play those remarks in my mind.

Her hour of post treatment observation passed and the woman from the U.K. snapped her left leg brace, pulled herself up triumphantly in her chair, and departed with her husband, after Dr. Aynan’s approval, to their hotel. He admonished his patients not to suffer any injuries, or even bruises, which would draw the stem cells away from their intended purpose to repair the injury.

When my hour was up, I asked where the nearest cocktail lounge was, I wanted a double Margarita. I was told that was a no-no, that I could not have coffee, let alone liquor, for six months. I was to follow a rigid diet. For one week, I could drink only green tea or distilled water. I could eat turkey, chicken, or tofu. The only vegetables allowed were spinach, sweet potatoes, and celery as long as there were no brown spots on it since these had free radicals harmful to stem cells. I could have soy or goat milk and only plums, prunes, grapes, or raisins as fruits. I went back to my hotel and that night drank bottled water, ate baked chicken and unseasoned spinach in the dining room. I stringently followed the stem cell diet protocol for six months, fighting to keep my hope, which was dwindling day by day.

Before I left for Rotterdam, my retina specialist obtained angiogram films of my retina to see if there would be any retinal changes. There were no visual changes that I could detect, although sometimes I would test my vision to the clear blue sky and imagine I saw lighter spots in the dark scotomas that crowded my visual field. But my visual acuity was not improving. I could still not read print without high magnification. Over four months had past when I went back to my retina specialist who found no retinal changes whatsoever.

I made several calls to ACT during this interval to inquire about my reimbursement. I faxed copies of my receipts followed by phone calls. They always said it would be taken care of, but it never was. Then in November I received a call from Dr. Brian Wood who asked me in a cheerful voice, bouncing and enthusiastic, “How do you FEEEEL, How do you FEEEEL? And has anyone talked to you about a booster?” I told him I felt just like I did before I went to the clinic, which was quite well, other than my visual problem, which had not improved in the least.

“Oh, stem cells can work for up to 18 months,” he said. Then I asked him about the reimbursement they had so faithfully promised. He said he would check about it, then sent me an email regarding the money stating they would have a plan of action forthcoming. Almost three years later, no plan of action has come, and I have seen not one penny. ACT is now in Capetown, South Africa, having moved their headquarters from Zurich. I knew I had been defrauded. I felt sick with remorse and guilt and regret the loss of almost $20,000 for which I am now suffering financially. Not one of we three patients treated on May 16, 2006, is mentioned in the ACT case studies. I suppose we never got beyond the “hundreds of cases under study.”

I have searched many sites relevant to Advanced Cell Therapeutics during the past year with harrowing findings. Five months after my visit to the PMC clinic in Rotterdam the Dutch government ordered the clinic to stop performing stem cell treatment there because they could not ensure patients were protected from HIV, hepatitis, Creutzfeld-Jacob disease (a dreadful neurological condition), and malignant tumors. This was the month before Brian Wood called me to promote a booster treatment. Incredible! They have found a way around Irish government restrictions by having patients stay at the Carrigaline Coourt Hotel in Cork to be evaluated, then receive stem cell treatment on a ship in international waters. They manage to have their website at the top when stem cell treatment is googled, often in close proximity to legitimate stem cell research organizations in order to profit from association. Advanced Cell Therapeutics is an unscrupulous, ruthless, fraudulent organization that needs to be stopped before they harm more desperate and trusting people. They have scammed hundreds who believed them and will continue to do so if they are not stopped. I am telling my story in hopes that people will check this company out and realize what they are doing.

Jan Perkins
4959 Island Home Road
Louisville, Tennessee 37777-5422
USA
Telephone +1 865 977-9085
Email .(JavaScript must be enabled to view this email address)

 

 

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...to influence multinational corporations effectively, the efforts of governments will have to be complemented by others, notably the many voluntary organisations that have shown they can effectively represent society’s public-health interests…
A small group known as Healthy Skepticism; formerly the Medical Lobby for Appropriate Marketing) has consistently and insistently drawn the attention of producers to promotional malpractice, calling for (and often securing) correction. These organisations [Healthy Skepticism, Médecins Sans Frontières and Health Action International] are small, but they are capable; they bear malice towards no one, and they are inscrutably honest. If industry is indeed persuaded to face up to its social responsibilities in the coming years it may well be because of these associations and others like them.
- Dukes MN. Accountability of the pharmaceutical industry. Lancet. 2002 Nov 23; 360(9346)1682-4.