Rare disease is defined as a disease suffered by less than 2000 people. The low incidence of these diseases cause lack of awareness among the public and stakeholders. Indonesia is one of the most populated country in the world, with its population exceeding 250 million people, thus the number of patient with rare disease is relatively higher than other countries.
In order to commemorate World’s Rare Disease Day on February 28th, FMUI and RSCM through Human Genetic Research Center cluster IMERI and Center of Rare Disease Treatment RSCM conduct a focus group discussion (FGD) titled “Never Ending Struggle to Provide Orphan Foods and Orphan Drugs for All Indonesian Rare Diseases Patients”.
This FGD was held on February 25th 2019 in RSCM, to find solutions for many problems faced by patients with rare diseases.
The discussion was attended by Dean of FMUI Prof. Dr. dr. Ari Fahrial Syam, SpPD-KGEH, MMB, Operational Director of RSCM dr. Surahman Hakim, SpOG(K), Head of Human Genetic Research Center Cluster IMERI FMUI Dr. dr. Damayanti Rusli Sjarif, SpA(K), representatives from Directorate General of Disease Control and Prevention Indonesian Ministry of Health, Directorate General of Pharmacy and Health Equipment Indonesian Ministry of Health, Directorate General of Health Referral Indonesian Ministry of health, Directorate General of Social Rehabilitation Indonesian Social Ministry, Directorate General of Pharmacy Service Indonesian Ministry of Health, and the head of Indonesia MPS and Rare Disease Foundation.
To commence the event, Dean of FMUI gave an opening speech, in which he said that rare disease is a serious problem, but it is still neglected. And collaboration between sectors is needed to treat rare diseases.
“FMUI through Human Genetic Research Center IMERI FMUI performed genetic tests for rare diseases, since there is no other lab which provides similar tests. This test is not merely a diagnostic tool, but can become a screening tool for rare diseases” Prof. Ari said “on the other hand, successful diagnosis of rare disease lead to early treatment of the disease. Even though sometimes the treatment includes a continuous supplementation of special made milk”
RSCM’s Operational Director dr. Surahman hakim, SpOG(K), said in his opening speech that rare disease is growing in number every day and is a serious problem we have to face together. There are still a lot of problems in the treatment of rare disease, one of the biggest problem is expensive cost needed.
“Diagnosis and treatment of rare disease is very expensive” said Dr. dr. Damayanti Rusli Sjarif, SpA(K), the head of Human Genetic Research Center IMERI FMU. She also stated that the number of patients with rare disease in Indonesia is very high. Therefore, cross sectoral support from the government to facilitate the diagnosis and treatment through Healthcare and Social Security Agency (BPJS).
This focus group discussion can be a source of information and solutions regarding rare disease in Indonesia. successful in diagnosis and treatment can greatly improve patient’s quality of life. Therefore, support from many parties are needed.
(Public Relations FMUI)