Public health stakeholders have urged the government to sustain the implementation of the Rare Disease law based on its objectives and provide as well as increase regular funding in succeeding years.
“There is an evident disproportion in the availability of treatment and resources, and this inequality is being aggravated by the Covid-19 pandemic,” said Professor Victor Andres Manhit, president of Stratbase ADR Institute, 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.”
“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,” Manhit said.
The law, passed in 2016, seeks to address the needs of persons with rare diseases to increase their chance of survival.
Funding challenges
In the Senate, Senator Juan Edgardo Angara, chair of the Senate committee on finance, acknowledged that the program would encounter challenges in terms of funding as the country is still grappling with the Covid-19 pandemic. He added the appropriation is insufficient to provide treatment and fund research on rare new diseases.
Nevertheless, Angara assured the legislature is committed to support the cause. He noted, however, that the private sector could be tapped as a partner and provide incentives 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 (Universal Health Care) 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, all representatives of stakeholder groups, stressed the whole-of-society in tackling health issues.
Dr. Carmencita D. Padilla, Chancellor of University of the Philippines–Manila and Founding Chairman of the Philippine Society of Orphan Diseases (PSOD), said that they were aiming for 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 a whole of society approach is needed.
Dr. Razel Nikka M. 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.
However, Dr. Eva Maria C. Cutiongco-dela Paz, Executive Director of the National Institutes of Health, said their main challenge is determining which rare diseases should be included in the initial rare disease list that will be covered by the law.
“For our part, the support of the Pharmaceutical and Healthcare Association of the Philippines [PHAP] 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,” said Daisy Cembrano, PHAP’s Director for Healthcare Policy.
Durhane Wong-Rieger, Ph.D., representative of the Asia Pacific Alliance of Rare Disease Organizations, acknowledged the Philippines is not alone in this problem as the huge disparity across the globe even in well-developed countries.
Cynthia Magdaraog, President of PSOD, said while their patients have enjoyed an international compassionate access program, she emphasized this is not sustainable. She added this is a challenge as medicines for rare diseases are beyond the means of most people.
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