Eddie Braun is three years old and suffers from a severe form of epilepsy that causes hundreds of seizures a day. In order to treat these seizures, the boy needs medical cannabis.
However, according to Eddie’s mother, Ilmarie, the U.K. government has denied her son the right to use medical marijuana.
Ilmarie said that the expert panel the government has commissioned to grant license applications merely pays lip service to families like them who have seriously ill children.
How cannabis oil has helped Eddie
According to Ilmarie and her husband, Alex, cannabis oil has significantly reduced Eddie’s seizures. From around 500 seizures a day, the boy only as up to 120 after using the oil. They bought cannabis oil over the counter.
The problem is that the effect of the cannabis product that they are currently using has plateaued, so they want to try another product with higher potency. They want to prevent further brain damage in Eddie before it is already too late.
Ilmarie said that Eddie is unable to talk, walk, or sit up by himself. He stands to suffer more brain damage if he couldn’t get his epilepsy or his seizures under control.
“We are desperate to give Eddie a fighting chance,” she said.
Restrictive licensing process
Home Secretary Sajiv Javid had promised that the country’s medical cannabis law will be changed by autumn so that specialist clinicians can legally prescribe cannabis-derived medical products for special circumstances. The Home Office had set up an expert panel in June to review patients’ cases.
This move followed the public outcry surrounding the case of 13-year-old Billy Caldwell, a severe epilepsy patient whose supply of medical cannabis oil from Canada was confiscated by authorities at Heathrow Airport. Following the confiscation of his medication, the boy started to have more intense seizures, leading to his hospitalization.
The Brauns are among the parents who have applied for medical cannabis license in behald of their sick children.
So far, only Billy, six-year-old Alfie Dingley, and seven-year-old Sophia Gibson have been allowed to use medical cannabis with prescription. Like Billy, Alfie and Sophia also suffer from severe epilepsy and multiple seizures.
Ilmarie said that she feels “fobbed off” as she was told to just try another low-strength cannabis product.
She recounted that in order to have their application granted, they needed to show that they have already tried other medications that could help Eddie. And they have.
Ilmarie said that the panel then advised that they try Epidiolex, a cannabis-derived medication for certain kinds of epilepsy. However, she pointed out that Eddie had been using a similar product for over a year now and while it has helped lessen his seizures, it is not helping him any further.
Ilmarie also stated that another issue for applicant-families is being able to get the support from doctors. All applications need the patients’ doctors to back them. However, Ilmarie contended that many doctors are afraid to take on the clinical liability.
According to her, they had written to Eddie’s neurologist, but he has not responded.
It seems like the panel is not interpreting the rules in the way that they were meant to be interpreted, she added.