“O diagnosis in a rare disease, but in 22020, 90 more diseases were diagnosed that still did not have rare diseases in Portugal”, revealed La Carreira Pereira, from the General Directorate of Health (DGS) during the BIOMEET ‘Impact ‘Impact Pandemic on People with Rare Disease’, organized by the Portuguese Bioindustry Association (P-BIO), as part of the World Day for Rare Diseases, which is celebrated on 28 February.
In Portugal, it is estimated that between 600,000 and 800,000 people are rare patients, a number that reaches 320 million worldwide, says P-BIO in a statement.
Quoted from a EURORDIS patient, Olga de Saúde da Azevedo, coordinator of the Reference Center for Lysosomal Diseases at Hospital Senhora da Oliveira, in nine diseases, mentioned each patient, mentioned their health problems, six had them in their care in 10 health problems in diagnostic exams, seven in 10 problems were removed and 50% had their procedures interrupted or postponed.
“Early administrator in the great access, that there was a president of the Portuguese Association of health beyond response to Covid-1”, said Alexandre Lou Lourenço Hospitalar. The official referred to drug institutions, more specifically specialized hospitals, which offer solutions for drugs, among the drugs that serve partnerships with community pharmacies, patient organizations or other mechanisms. “The main discussion we must have now is to find new solutions to organize health systems around patients.”
Paulo Gonçalves, Empatia executive of the RD Portugal Union of Rare Diseases Associations Portugal, stressed that many patients ended up being “forgotten” in the context of the fight against the pandemic. In any case, as positive points, the mark of digitization, within organizations for special patients. It was in the midst of a pandemic that RD Portugal was created, which brings together several rare disease associations in Portugal, with more than 30 members. Paulo Gonçalves exemplifies the role of technology, noting that RD Portugal is working with the DGS and SPMS, so that the card of the person with a rare disease is integrated into the others.
For Olga Azevedo, a “great advance that happened was the implementation of home treatment for lysosomal overload diseases” that took place at the referral center of which she is the coordinator. “The cost of implementing home treatment will depend on the structures that each center already has in place to provide this type of response to patients.”
Armando Alcobia, from the pharmacists at Hospital Garcia de Orta, EP., said that “not all the circuit of access to the medicine worked, in terms of holistic treatment to the patient”, but also the delivery of the medicine in proximity and home treatment, which Hospital Garcia de Orta was a pioneer, as well as streamlining administrative processes.
For Carla Pereira, “the introduction of the home as a level of care is currently a priority, but it is necessary to guarantee quality and safety conditions”. “In all follow-up cases of people with rare disease in their dimensions,” she added.
Also Read: The urgent need for an integrated strategy for Rare Diseases