Institutionalize gov’t support for rare disease patients—advocacy groups


Advocacy groups have recently called on for the institutionalization of the government's support for rare disease (RD) patients through annual allocations in the General Appropriations Act and “progressive execution of assistance and treatment programs.”

During an online event last Jan. 27, stakeholders and experts also discussed how to address the six-year delay in the implementation and funding requirements of the Rare Disease Law amid the COVID-19 pandemic.

The event, organized Stratbase ADR Institute (ADRi) in partnership with UHC Watch and Philippine Society for Orphan Disorders, seeks to support RD patients by putting them in the annual allocations in the General Appropriations Act and progressive execution of assistance and treatment programs.

Professor Dindo Manhit, president of Stratbase ADRi, said: “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.”

Meanwhile, Universal Health Care Watch (UHC Watch) Alvin Manalansan noted that continuous 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 reiterated.

Experts’ Opinions

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, sUniversity of the Philippines-Manila Chancellor Dr. Carmencita Padilla pointed out.

She noted that to be able to help them, a rare disease registry is needed to be established.

“We also have to help the medical population, the doctors and nurses, and all the health professionals with what is needed to help the patients. No single agency can make this happen,” she said.

According to University of the Philippines – National Institutes of Health (UP-NIH) Executive Dir. Eva Maria C. Cutiongco-dela Paz, “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.”

She said a multi-sectoral strategic plan on the integrated rare disease management program for 2022-2026 is currently being developed wherein the priority list of RDs will be provided based on consultations with medical societies.

For her part, Dr. Cherylle Gavino, OIC Director III of the DOH’s Technical Integration, Disease Prevention and Control Bureau, said such plan will be the basis or reference of the Bureau in investing and providing funds for the next five years.

Over the past two years most resources were reallocated to the COVID-19 pandemic response, thus it is worth looking at some innovative financing models implemented by other countries for the treatment of RDs, said Daisy Cembrano, Director for Healthcare Policy of the Pharmaceutical and Healthcare Association of the Philippines.

RD in PH

Per the data of UP-NIH, about 6,500 patients or one in every 20,000 Filipinos are afflicted with RD and most of them belong to the lower socio-economic group that rely on heavy support from the government or external stakeholders.

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.

Some examples of such diseases are Pompe Disease, Gaucher Disease, Maple Syrup Urine Disease, Fabry Disease and many more.

To help address the needs of persons with rare disease 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.

But, it was only this year (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.