PATIENTS with rare diseases are being forced to seek medical help in the private sector, reaching deep into their pockets for treatment to avoid long lists in state, the head of the Federation of Rare Diseases, Dr Androula Eleftheriou said on Friday.
During a press conference to launch events to lead up to Rare Disease Day marked on the last day of February each year, Eleftheriou said patients and their families were in a constant struggle to have their particular needs recognised, and for a dignified life.
“Most patients with rare diseases continue to be faced with numerous inequalities and uncoordinated, fragmented and ineffective health services for their condition,” Eleftheriou said. She added that the condition of persons with rare diseases requires a multidisciplinary approach.
Therefore, she said, “all of them are forced to reach deep into their pockets and turn to the private health sector either to avoid the enormous waiting lists of the state, or because only there they can find solutions to at least some of the problems caused by their condition.”
It is only very few groups of people with rare diseases that are ‘lucky’ to have access to specialists with expertise and to more organised and coordinated services, she said. “The majority of patients with are diseases, do not have that ‘luxury’,” she said.
“It is very difficult and truly painful to describe the degree of pain, hardship, … the humiliation thousands of patients with rare disease go through,” she said, but also patients with chronic conditions, both for timely diagnosis, proper monitoring of the course of their condition but also for referral to centres abroad, if and when there is no adequate expertise in Cyprus for their condition.
This is very common in Cyprus, she said.
But patients with rare diseases are now demanding access to quality health services that are suitable for their condition and would like to see the implementation of the National Health Scheme (Gesy).
Without a national health scheme, national records, the autonomy and upgrading of state hospitals Eleftheriou said, “there is no possibility of effectively managing the particularities and varied needs of rare diseases.”
In her address, permanent secretary of the health ministry, Christina Yiannaki, said that the ministry had already taken measures and was constantly seeking new ways of enriching and upgrading services to patients with rare diseases.
She added that, in cases when there is no expertise in Cyprus, the care of the patient was ensured by establishing cooperation with specialised centres abroad.
The Federation of Rare Diseases will meet on February 28, on Rare Disease Day, with President, Nicos Anastasiades, and will submit their suggestions.
A disease or disorder is defined as rare in Europe when it affects fewer than one person in 2,000. There are over 6,000 existing rare diseases. Among the most common problems patients face is lack of scientific knowledge and quality information on their disease that often results in a delay in diagnosis. The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care, often leading to heavy social and financial burdens on patients.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.