Patients in Cyprus suffering from rare diseases are dying because they cannot access free medicine, representatives of patient groups said on Monday.
Speaking during a press conference to mark Rare Diseases Day, reps explained how several of the vital drugs prescribed to patients are either not available or, even they are, are so costly that people often travel to the north where drugs are cheaper to buy them.
This applies for instance to patients suffering from Myasthenia Gravis, a disease characterised by muscle weakness, said the representative for a patients’ support group, Anna Zanettou.
She said that in late 2014, one drug that sufferers depended on was removed from state hospital pharmacies. The reason given was that the drug was ‘off label’ which means the drug was not listed as being specifically for Myasthenia Gravis patients.
Zanettou, however, insists the real reason was the cost as the drug had previously been available for treating the disease at state pharmacies for years.
She added that even the alternative drug provided is off label too, and it is not even medically acceptable to 10 of the 30 patients who used it which means they need the original drug.
“This costs €333 from private pharmacies for 20 days thus a patient needs €666 every month. It’s difficult to find the money because when a Gravis patient is also retired – because we retire early – how can we find this money?” she said.
“Other patients are forced – and I’m sorry to say – to go to the occupied areas and purchase the same drug with the same ingredients for €180. It’s shameful.”
Last month alone, three patients died, she said, adding that some sufferers have been forced to borrow money from loan sharks to get their hands on enough cash to purchase the necessary drugs.
Rare diseases found in Cyprus include congenital heart defects, genetic neurological diseases, myopathies, metabolic syndromes, skeletal malformations, and rare diseases in the thalassaemia sector. At least 60,000 people in Cyprus suffer from some type of rare disease.
Government approval for drugs was a long ordeal and they were often not approved, said head of the association of affected persons and friends, Marios Kouloumas.
“This problem has existed for years,” he said.
Zanettou described how one patient’s doctors had requested a drug from the pharmaceutical services.
“They have not received an answer yet. Our patient has passed away and the doctor still hasn’t got a response.”
Health Minister George Pamborides, who attended the press conference and is set to meet with Kouloumas’ association on Thursday, said he could make no excuses in response.
“Solutions need to be found and they will, I reassure you,” he said.
He explained that Cyprus was such a small market and therefore of little interest to large producers. This meant the state had little bargaining power with the pharmaceutical industry which could charge huge sums of money for patented products.
“Soon we will take the initiative to attract other small EU member states and attempt to create a single body which will give us the coveted bargaining power so we can stand up to the big guys and get better prices,” he said.
Referring to the National Health Scheme, Pamborides said it would undoubtedly protect patients from “catastrophic health spending”.
Zanettou warned of ‘dynamic measures’ if problems were not solved, pointing out there was a case at the Supreme Court of a patient who was seeking to obtain their drug via a court order.
Kouloumas expressed his hope that reports saying €6.4 million would be approved from the finance ministry for therapies necessary for some of their patients were true.
The Myasthenia Gravis Association Cyprus is organising a free informative conference on March 5 at the Institute of Neurology at 10am.