The government should institutionalize its support for rare disease (RD) patients in the country, a think tank said.
In a forum, Stratbase ADR Institute in partnership with UHC Watch and Philippine Society for Orphan Disorders also said solutions and commitments to address the six-year delay in the implementation and funding requirements of the Rare Disease Law.
The forum urged the need to institutionalize the government’s support to RD patients primarily through annual allocations in the General Appropriations Act and progressive execution of assistance and treatment programs.
“The pressures on the Philippine health system consequent to the ongoing pandemic has caused life-endangering disruptions to non-COVID 19 patients and punctuates the urgency to expand our healthcare coverage with adequate and well-managed resources to respond to the rising medical needs of the public,” Professor Dindo Manhit, president of Stratbase ADRi, said.
Alvin Manalansan, co-convenor of the advocacy group UHC Watch, said the sustained institutionalization of this line item in the national budget is key to obtaining tangible, measurable results.
“We should expand the coverage of the law so that more types of diseases can be covered, and so that more patients will get the chance to access needed services like diagnosis, treatment or maintenance,” he added.
RD are those that are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease, but also from patient-to-patient. Examples of such diseases are Pompe Disease, Gaucher Disease, Maple Syrup Urine Disease, Fabry Disease and many more.
Approximately 6,500 patients or one in every 20,000 Filipinos are afflicted with RD based on previous data from the University of the Philippines – National Institutes of Health (UP-NIH). Most belong to the lower socio-economic group that rely on heavy support from the government or external stakeholders.
To help address the needs of persons with rare diseases through early intervention and increase their rate of survival, the Rare Disease Act of the Philippines (Republic Act No.10747), was approved in March 2016; the Implementing Rules and Regulations was released in November of the following year.
However, it was only in 2022 that an actual budget was allocated in the GAA in the amount of P104.9 million as an item in the UP-NIH budget.
Dr. Carmencita Padilla, Chancellor of the University of the Philippines-Manila, said it is important to diagnose early so that those with rare diseases can still enjoy quality life and even have their own families in the future.
Dir. Eva Maria C. Cutiongco-dela Paz, Executive Director of the UP-NIH, said that “one of the objectives of the Law was to improve the access of patients with RDs to comprehensive medical care (drugs, healthcare products), as well as timely health information”.