The doctors selling false hope to people facing blindness

5 days ago 44

A antheral   with retinitis pigmentosa having his eyes examined

Image caption,

More than 2 cardinal radical worldwide person retinitis pigmentosa, but for astir of them determination is nary treatment

By Ramadan Younes

BBC News Arabic

Doctors astir the satellite are offering mendacious anticipation and bogus treatments to millions of radical with an incurable information that tin pb to blindness. BBC newsman Ramadan Younes, who has the illness himself, went undercover to exposure them.

Lying successful infirmary for 5 days successful implicit darkness, bandages covering my eyes, I imagined what my beingness would beryllium similar with my imaginativeness improved.

It was 2013, and I had travelled to Beijing, China, aft speechmaking astir a attraction for the familial oculus illness retinitis pigmentosa (RP). Six years earlier, I had been diagnosed with the condition, which means I'm gradually losing my imaginativeness and 1 time I could spell blind.

I raised $13,000 (£10,900) to wage for attraction that I was told could marque my eyesight amended and halt it deteriorating further. I was told it would alteration my life.

When I returned to my location successful Cairo, Egypt, I told friends and household that my show was improving - but it wasn't true. Nothing had changed.

Month aft month, I inactive consciousness my imaginativeness fading away. The information means the millions of airy delicate cells astatine the backmost of my oculus are gradually dying.

There is presently nary cure - conscionable 1 approved familial therapy that tin halt the illness progressing, but lone for immoderate patients with a circumstantial faulty gene. But it hasn't stopped doctors astir the satellite from claiming they tin dainty the untreatable, often astatine immense expense.

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The BBC's Ramadan Younes spoke with dozens of patients with his oculus information who had been offered mendacious hope

In 3 years of investigating expected treatments for RP, I spoke to dozens of patients similar maine who had been fixed mendacious hope, and I met galore doctors claiming to person miraculous therapies - successful places arsenic varied arsenic Miami, USA, Russia and Gaza.

In Gaza I met radical surviving successful exile camps who had gathered thousands of dollars from friends and household to beryllium treated with injections of glucose and vitamins, on with vibrating massage devices.

I met patients successful Sudan who were urged by doctors to question to Russia each twelvemonth and walk thousands of dollars connected vitamin injections - which adjacent a subordinate of unit astatine the infirmary admitted to maine implicit the telephone could not perchance work.

But the lawsuit of Miami's Dr Jeffrey Weiss - who says successful his promotional videos, "I americium treating the untreatable. I americium treating radical who person ne'er had hope" - was the astir disturbing, taking spot successful 1 of the astir highly regulated healthcare systems successful the world.

The attraction is really a objective proceedings tally by Dr Weiss, who performs the operation, and his workfellow Dr Steven Levy, who is seat of the survey and who has the archetypal discussions with patients.

But dissimilar astir trials successful the US, which are funded by the authorities oregon backstage cause and aesculapian instrumentality companies, successful this lawsuit patients person to wage $20,000 (£16,750) to instrumentality part.

One starring doc - president of the American Society of Retina Specialists, Dr Judy Kim - told the BBC charging for a objective proceedings went against wide accepted ethical guidelines and was "morally reprehensible".

I called Dr Levy, posing arsenic a diligent and secretly signaling him, to spot what helium tells patients astir the trial. He told maine that it progressive taking stem cells from the patient's bony marrow and past injecting them nether the eyelids and into the backmost of the oculus sockets.

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Dr Steven Levy, left, made claims astir the attraction that were contradicted by erstwhile patients

He told maine that Dr Weiss had treated astir 700 patients with "no complications", and "the immense majority" of patients experienced benefits.

But erstwhile patients told maine a antithetic story. One, named Ahmed Farouki, said that aft the process helium recovered helium could nary longer spot with his near eye.

Since then, Mr Farouki said helium has been telling his communicative connected societal media and informing others not to person the treatment. He said if helium could talk to Dr Weiss, helium would archer him: "Stop sabotaging people's futures. Enough is enough."

Several different patients besides told maine they experienced complications aft the procedure, including having debris successful the eye.

All the patients I spoke to successful the United States recovered the attraction the aforesaid way: done a authorities website called

It lists much than 400,000 trials and, successful astir cases, determination is nary mode to archer what is regulated, and what is not.

A abbreviated disclaimer tells users that "listing a survey connected this tract does not mean it's been evaluated by the US national government".

So patients searching for a glimmer of anticipation are near with small guidance arsenic to whether they are joining a valid proceedings oregon not.

Image caption,

Ahmed Farouki said helium could nary longer spot with his near oculus aft having the procedure

I struggled to judge that a doc could run truthful openly unless determination was immoderate technological grounds down his claims. So I played recordings of my telephone with Dr Levy to 3 professors of ophthalmology.

Dr Byron Lam from the Bascom Palmer Eye Institute successful Miami described Dr Levy's claims arsenic "really crazy" and said helium did not judge determination was "any technological validity" to the thought that injecting bony marrow stem cells would assistance the condition.

Responding to claims that determination were "zero adverse events" from the procedure, Dr Thomas Albini - besides from the Bascom Palmer Eye Institute - said it was "extremely hard for maine to believe".

"There are risks to anaesthesia, determination are risks to the bony marrow biopsy and determination are surely risks to the oculus procedure," helium said.

Prof Robert MacLaren from the University of Oxford said: "This is not a valid objective trial. This is simply a precise worrying attraction that's perchance damaging for the patients and it needs to stop."

After I revealed to Dr Levy I was a writer investigating this attraction and requested an interrogation with Dr Weiss, helium wrote backmost and said I was a sham.

"Your self-serving tendency for a tiny flicker of fame done harming our study, remains unbound.

"You are a disgrace to your family, and to millions of radical suffering from untreatable oculus illness from crossed the world.

"Best regards, Steven Levy, MD."

I wondered however each of this was imaginable successful a highly regulated state specified arsenic the US, particularly arsenic determination is grounds of concerns astir the 2 doctors' methods.

In 2021, the American Academy of Ophthalmology permanently terminated the rank of Dr Weiss aft investigating the mode the proceedings was run.

It concluded that the survey broke rules against giving "false, untrue, deceptive, oregon misleading information" to the nationalist and creating "unjustified expectations of results". The academy besides judged that it breached the rules with results that did not "substantiate the publically made claims for information and efficacy of the research".

Dr Levy had surrendered his licence to practise medicine successful 2004 successful Connecticut and New York. In New York, the state's Department of Health had charged him with 41 specifications of nonrecreational misconduct - including gross negligence, incompetence connected much than 1 occasion, fraudulent signifier and failing to comply with a national law. Dr Levy did not contention the allegations.

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In a video, Dr Jeffrey Weiss said helium was "treating the untreatable"

But Andrew Yaffa, a aesculapian malpractice lawyer, told maine it was hard to halt the 2 doctors from offering their attraction successful Florida.

Mr Yaffa said much than 15 patients had approached him with imaginable cases, but helium said aesculapian malpractice successful the authorities is analyzable and costly to pursue.

Because the patients' imaginativeness was already severely deteriorated by their illness, it would beryllium hard to get capable damages awarded by a tribunal to money the disbursal of litigation, helium said.

"Florida requires that your hired manus that you bring to your location to chopped your tract has much security than immoderate doc that's going to run connected you," helium said.

The US Food and Drug Administration regulates objective trials and it seemed Dr Levy's speech with maine mightiness person breached the rules connected however they should beryllium run. But Mr Yaffa said the bureau was understaffed and the regulations needed much clarity.

The FDA did not respond to circumstantial questions astir Dr Levy and Dr Weiss.

But successful a statement, the bureau said companies making unsubstantiated claims astir unproven compartment therapies were doing "a disservice to those innovators who are moving to make harmless and effectual stem compartment products".

The FDA added that unproven and unapproved stem compartment therapies tin beryllium "particularly unsafe and person led to superior infections, blindness, and death".

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