Public health stakeholders has urged the government to ensure that the Rare Disease Law is vigorously implemented and that funding for this purpose would be increased and consistent.
The think tank Stratbase ADR Institute made the call during a recent hybrid town hall discussion called “The State of the Rare Disease Law: Continuing Implementation and the Delivery of Responsive Health Services to the Affected Population.”
“There is an evident disproportion in the availability of treatment and resources, and this inequality is being aggravated by the COVID-19 pandemic,” said Stratbase president Prof. Victor Andres Manhit.
“Now that Congress has earmarked P104.9 million for this after six long years, it is time all stakeholders worked to address the deeply complex issue of inequality through good governance, political reforms, social investments and multi-sector efforts,” Manhit said.
The law, passed in 2016, seeks to address the needs of persons with rare diseases and increase survival rate.
Sen. Juan Edgardo Angara, chair of the Senate Committee on Finance, acknowledged the funding challenges given the pandemic. He also said the appropriation is hardly enough for providing treatment and funding research into new rare diseases.
Nonetheless, he reiterated the legislature’s commitment to support the cause. He said the private sector should be encouraged – incentivized – to partner with the government in making progress in the fight against rare diseases.
Alvin Manalansan, healthcare 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.”
Other speakers at the forum representing stakeholder groups, weighed in on what they believed were the most important aspects of the law.
Dr. Carmencita D. Padilla, chancellor of University of the Philippines – Manila and Founding chair of the Philippine Society of Orphan Diseases (PSOD), said that they were aiming for people with rare diseases to be covered by universal healthcare.
“We are trying to be as inclusive as possible despite some of the limitations in the law,” she said. She emphasized that a whole of society approach is needed.
Dr. Razel Nikka Hao, director of the Disease Prevention and Control Bureau of the Department of Health, said their vision was to ensure the best health outcomes for Filipinos with rare diseases through integrated management of patients’ conditions.
Dr. Eva Maria C. Cutiongco-dela Paz, executive director of the National Institutes of Health, said their main challenge was determining which rare diseases should be included in the initial rare disease list that will be covered by the Law.
Ms. Daisy Cembrano, director for healthcare policy 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.
Dr. Durhane Wong-Rieger, representative of the Asia Pacific Alliance of Rare Disease Organizations, cited 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. This poses a problem because medicines for rare diseases are very expensive, beyond the means of most people.
