Health experts seek funding, implementation of rare disease law

MANILA, Philippines — Public health stakeholders have called for funding and implementation of the Rare Disease Law passed in 2016.

They said the funding and implementation of the law would ensure access to medical care and treatment for Filipinos with rare diseases.

Professor Victor Andres Manhit, president of the Stratbase-Albert del Rosario Institute, said the legislation has yet to be fully implemented as envisioned.

“There is an evident disproportion in the availability of treatment and resources, and this inequality is being aggravated by the COVID-19 pandemic,” said Manhit during a recent hybrid town hall discussion sponsored by the think tank called “The State of the Rare Disease Law: Continuing Implementation and the Delivery of Responsive Health Services to the Affected Population.”

“Now that Congress has earmarked P104.9 million for this after six long years, it is time all stakeholders work to address the deeply complex issue of inequality through good governance, political reforms, social investments and multi-sector efforts,” he added.

The law seeks to address the needs of persons with rare diseases to increase their rate of survival.

Sen. Juan Edgardo Angara, chair of the Senate committee on finance, acknowledged the funding challenges given the pandemic.

He noted that the appropriation is hardly enough for providing treatment and funding research into new rare diseases.

He, however, reiterated the legislature’s commitment to support the cause, saying that the private sector should be encouraged and incentivized to partner with the government in making progress in the fight against rare diseases.

Alvin Manalansan, health care and education convenor of CitizenWatch Philippines and co-convenor of UHC Watch, emphasized that every Filipino has the right to health and that no one should be left behind in the delivery of timely, responsive and sustainable health services.

Dr. Carmencita Padilla, chancellor of the University of the Philippines-Manila and founding chairman of the Philippine Society of Orphan Diseases, said they want people with rare diseases to be covered by universal health care.

“We are trying to be as inclusive as possible despite some of the limitations in the law,” she said, adding that the whole of society approach is needed.

Dr. Razel Nikka Hao, director of Disease Prevention and Control Bureau of the Department of Health, said their vision is to ensure the best health outcomes for Filipinos with rare diseases through integrated management of patients’ conditions.

Dr. Eva Maria Cutiongco-dela Paz, executive director of the National Institutes of Health, said their main challenge is to determine which rare diseases should be included in the initial rare disease list to be covered by the law.

Daisy Cembrano, director for Healthcare Policy of the Pharmaceutical and Healthcare Association of the Philippines, said their support for policy reform hinges on four basic principles: seeing rare diseases as a public health priority, empowering patients and their communities, promoting continued research and development and ensuring sustainable patient access to diagnosis and care.

Durhane Wong-Rieger, Ph.D., representative of the Asia Pacific Alliance of Rare Disease Organizations, acknowledged the huge disparity across the globe even in well-developed countries, and disparity across the region in terms of access to diagnostic services.

PSOD president Cynthia Magdaraog said while their patients have enjoyed an international compassionate access program, they could not rely on this for a long time.