- Ramadan Younes
- BBC News Arabic
More than two million people worldwide have retinitis pigmentosa, but for most of them there is no cure
Doctors around the world provide false hopes and false cures to millions of people suffering from a terminal disease that can lead to complete loss of vision. BBC correspondent Ramadan Younes, who personally suffers from the disease, conducted a secret investigation to expose these doctors.
I lay in the hospital for five days in complete darkness, my eyes covered with bandages, imagining what my life would be like if I regained my lost sight.
In 2013, I traveled to Beijing, China, after reading about a treatment for retinitis pigmentosa, a genetic eye disease. Six years earlier, I had been diagnosed with this condition and I knew I might lose my sight completely one day.
I raised $13,000 to pay for a treatment that I was told would improve my vision and change my life.
When I returned home to Cairo, Egypt, I told my friends and family that my vision was improving – I was so desperate I wanted to believe the treatment had worked.
But it wasn’t.
Month after month went by and I still felt my vision deteriorating. The condition I suffer from is the slow death of millions of light-sensitive cells in my retina.
There is currently only one treatment, Luxturna gene therapy, which has been approved since 2017, but it works for a very small percentage of patients who have a specific genetic mutation.
BBC correspondent Ramadan Younis has met hundreds of patients with eye problems who have been offered false hope.
Retinitis pigmentosa is more common in Arab countries, prompting clinics around the world to target Arabic-speaking patients, claiming that it can treat the untreated, often at an exorbitant cost.
Starting in Gaza and later in East Jerusalem, the doctor treats patients with a procedure he calls “neural stimulation”.
I spoke with seven patients who paid more than $2,000 for this treatment, which includes injections of vitamins and glucose, and two vibrators placed around the eyes and in the nose.
None of them reported seeing any benefit from the treatment.
But the doctor told me that he had treated about 70 people, 60 percent of whom felt an improvement in their night vision, and 40 percent in their day vision.
“If you stimulate the nerve from the outside, you can activate the blood flow inside the eye, and that means you can maintain the supply of glucose and oxygen to these dormant cells and reactivate them again,” he said.
“We think outside the box,” he added.
Professor Robert McLaren, an expert in retinitis pigmentosa at Oxford University, called this claim a “false hypothesis”. He said: “Increased blood flow may practically lead to increased damage, because increased oxygen can cause damage to cells that are already diseased.”
The doctor who treats patients with “nervous stimulation” said that research that includes outlines for his treatment is awaiting peer review, adding that the majority of his patients have witnessed a change in their lives.
He continues to stress that his treatment can reverse the course of the disease.
In Russia, I’ve heard of hospitals selling treatment to Arab patients with retinitis pigmentosa for years. The largest of these was the Fyodorov Eye Hospital in Moscow.
Most of her work is respected around the world, but she is associated with a company called Rottreatment, which spreads among patients in the Arab world claims to improve the eyesight of people with retinitis pigmentosa.
Mohamed Abdel Moneim, 26, who sought treatment eight years ago, says his eyesight was good during the day and he could watch TV and use his phone, but his night vision deteriorated.
He paid more than $2,000 for vitamin injections around his eyes, as well as pills to take when he returned home to Tuti Island, near Khartoum.
The treatment had no effect, but he was asked to return to the hospital after a year, where he repeated the treatment four times, each time spending thousands of dollars, but his eyesight was deteriorating all the time.
“I lost most of my sight,” he said. “Now I can only see light and shapes. I’m starting to lose the ability to see light as well.”
I heard of an office across from the Russian Embassy in Khartoum called “Fyodorov Service Centre”, which actively promotes Fyodorov hospital treatment and provides travel facilities for patients.
So I went pretending to be a patient who wanted to get treatment to hear what they said to the patients. There I spoke on the phone to a doctor in Russia named Mohamed Awad, who told me that none of the patients had any side effects.
He said, “All patients (who receive treatment) feel better. The treatment is not a one-time treatment. Patients have to continue treatment every year and they will preserve their eyesight.”
After my conversation with Dr. Mohamed Awad, I received a letter from Fyodorov Hospital, apparently confirming his affiliation with the institution. But when I called the hospital, it was clear that not all hospital staff believed in the treatment.
One of the workers told me, “There is no point in these syringes. You can even find them in Sudan or Egypt.”
I asked him about the chances of my vision stabilizing and he said, “There is no chance, not even 1 percent. Your disease is genetic and congenital and there is no cure for it.”
When confronted with the BBC’s findings of the deteriorating vision of patients treated in Russia, Dr. Awad objected and accused the BBC of fabricating stories to discredit the hospital.
Neither Fyodorov Hospital nor the Rotrechtmant responded to the BBC.
But a treatment offered to patients in Dubai and America was the most disturbing thing I’ve come across.
The treatment is actually a clinical trial that Dr. Levy is running, and his colleague, Dr. Weiss, is conducting. But it is very strange that the experiment cost you $ 20,000.
There are strict rules in the US about the costs of participating in trials, which are only allowed in very rare cases or for very expensive drugs.
I called Dr. Levy claiming that I wanted to undergo their treatment, and secretly recorded the call to find out how to persuade patients to participate in this trial. He told me it involves taking stem cells from a patient’s bone marrow and injecting them under the eyelids at the bottom of the eye sockets.
Dr. Stephen Levy has made claims about the treatment that previous patients contradict
He told me that Dr. Weiss had treated “about 700” patients “without complications” and that the “vast majority” of patients benefited from the treatment.
But former patients tell me a different story. Ahmed Al-Farouqi, who has been living in Florida since he came from Jordan as a child, collected $20,000 from his relatives to pay for his treatment.
However, he described his condition after the treatment, saying: “When I opened my eyes, I found that I could no longer see in my left eye.”
“They just want the money and they don’t care what happens to your eyes,” he added.
Other patients said they also experienced complications after receiving the treatment.
I found it hard to believe a doctor could operate in such a public way without some credibility to his claims.
So, I showed the recordings of my conversation with Mr. Levy to several professors of ophthalmology.
Dr. Byron Lamm of the Biscom Eye Institute in Miami called Mr. Levy’s claims “truly insane” and said he did not believe there was “any scientific validity” to his hypothesis.
Professor Robert McClaren, from the University of Oxford, said: “This is not a valid clinical trial. It is a very concerning treatment and there is potential for it to harm patients and it should be discontinued.”
After I revealed to Mr. Levy that I was a journalist investigating this treatment and asked to see Dr. Wes, he wrote to me and called me a fraud.
“Your selfish desire to obtain a small flash of fame by harming our study remains unbounded,” he said.
He added, “You are a disgrace to your family and to the millions of people in the world who suffer from eye diseases that have no cure.”
Neither Dr Levy nor Dr Wess responded to the BBC’s questions about this trial.