More than 4,000 patients with rheumatological diseases do not have access to medication from their main therapy, announced Boryana Boteva – president of the Organization of patients with rheumatological diseases.
“Patients with rheumatoid arthritis, lupus and several other diagnoses that are used for its treatment do not have access to this medication. Until last year, such a medication was registered in Bulgaria, but the manufacturing company withdrew it from the European market.
Since then, there is no alternative and patients have started to buy drugs from Turkey, Greece and other countries. However, in the context of the Covid-19 pandemic, hydroxychloroquine has also begun to be used to treat coronavirus. In the ensuing panic, the drug was bought up by perfectly healthy people to use in case they became infected.
On the other hand, states that have this drug only sell it to their health-insured citizens with electronic prescriptions, and our patients no longer have access. From a third country, the borders are also closed. The medications that our patients had stocked up on are now running low or have run out. At the moment, people exchange the medicine with each other, but they are in a panic how they will continue their therapy”, Boryana Boteva explained the absurd situation.
According to the Health Insurance Fund, 3,900 patients with lupus are treated with hydroxychloroquine, as well as some patients with rheumatoid arthritis and several more rare diagnoses. So there are more than 4,000 people without treatment.
In the current crisis, the patient organization sends letters to all institutions, even to the president and prime minister of the republic. The answer from the Ministry of Health is that it is possible for the medicine to be delivered in accordance with Ordinance No. 10 for unregistered medicines.
Boryana Boteva
Medicine can be ordered from hospitals and patients can receive it from medical facilities. For this purpose, the hospital must have a committee of a pharmacist, a lawyer and a specialist doctor to prepare protocols for each specific patient and send them for approval to the Medicines Executive Agency (EMA). If it approves the protocol, the IAL finds a merchant to deliver the drug to the respective hospital.
So far, none of the hospitals have provided the drug to rheumatology patients. Some hospitals have ordered hydroxychloroquine, but only for coronavirus patients. “The paradox is that the medication is used off-label for some patients, but is unavailable to the patients for whom it is specifically intended.
Two groups of patients are contrasted. One cannot be more important than the other. Both groups of patients are important and should be treated. Let them treat those infected with Covid-19, but they should also think about the more than 4,000 rheumatological patients who are in a panic because they are left without treatment”, Boryana Boteva added.
The organization of patients with rheumatic diseases launched a campaign on social networks #we_have_the_right_to_treatment. Patients share collages every day with the same hashtag, the message of which is “We are people like everyone else, we have the right to treatment and we want the institutions to provide us with this treatment”.
A petition has also been launched to the institutions at the link
Mara KALCHEVA
