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Tuesday, July 23, 2024

Groups demand gov’t support on rare disease management plan

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Seven years after the passage of a law advancing the interests of persons afflicted with rare diseases, patients, and other stakeholder groups are still clamoring for government support in terms of adequate funding and implementation of the Integrated Rare Diseases Management Program Strategic Plan.

“Persons suffering from rare diseases, sometimes called orphan disorders, need the help of society, and these efforts must be led by the government,” said Alvin Manalansan, co-convenor of Universal Health Watch Philippines. “But why did it take the government years to make the first appropriation for the law in 2022, and why was the budget drastically cut for 2023?”

Manalansan said this and other issues confronting rare-disease patients will be discussed in a dialogue among stakeholders, organized by UHC in partnership with the Philippine Society of Orphan Disorders and the Stratbase ADR Institute.

The dialogue, “Sustaining Gains and Balancing Priorities: Implementation of Rare Disease Act for 2023,” will be held on March 21 (Tuesday) at Seda Residences in Makati. It will also be live-streamed via Zoom.

The event, which will be attended by representatives from the government, patient groups, medical societies, private sector, civil society organizations, as well as of key stakeholders and advocacy groups, will be a venue for key decision makers and stakeholders to discuss the institutionalization of government support to rare disease patients.

Republic Act 10747 or the Rare Disease Act was passed in 2016 to provide Filipino rare disease patients access to comprehensive medical care. Specifically, it seeks to address the needs of patients through early intervention to increase their survival rate.

To this end, the Integrated Rare Diseases Management Program Strategic Plan 2022-2026 was crafted—six full years after the law’s passage.

“People living with a rare disease need equitable access to diagnosis, treatment and care,” said Manalansan. “Rare disease patients are also considered persons with disabilities (PWDs) and are entitled to the corresponding benefits and privileges such as priority programs and

discounts.”

It was only in 2022, however, that the Philippine Congress allocated an amount—P104.9 million – for the purposes of funding the implementation of the Rare Diseases Law. The amount was lodged in the University of the Philippines-National Institutes of Health.

And then, for 2023, the budget was drastically cut to P28.809 million.

“We want to discuss the possible reasons for this drastic cut,” said Manalansan. “Through the dialogue on March 21, stakeholders will also seek clarification on how the strategic plan is being implemented, how the initial allocation was used, and how implementers plan to make do with and augment this year’s budget.”

Ms. Cynthia Magdaraog, President of Philippine Society of Orphan Disorders (PSOD), in a previous statement said that while rare disease patients have enjoyed an international compassionate access program, this is not sustainable.

“This is a challenge as medicines for rare diseases are beyond the means of most people,” she said.

PSOD was established as a patient support group for persons living with a rare disease that is genetic, heritable and of low prevalence in the country. It acts as the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for individuals living with a rare disease, or otherwise known as, orphan disorders.

A global concern

There are over 300 million people worldwide living with a rare disease. There are over 6000 different rare diseases. Are 72% of rare diseases are genetic, and 70% of those genetic rare diseases start in childhood.

The National Rare Disease Week, held every last week of February, aims to raise awareness and public support for people living with rare diseases. The event also culminates with Rare Disease Day, a globally coordinated movement on rare diseases held every last day of February. A day that reminds us of the importance of working together towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Every year, thousands of events are organized in over 100 countries to mark the occasion.

This year, in the Philippines, The De La Salle University-Dasmariñas Master of Sustainable Leadership and Governance students, in partnership with the Philippine Society for Orphan Disorder, Inc., De La Salle Medical and Health Sciences Institute (DLSMHSI), and De La Salle University Medical Center (DLSUMC), hosted the Dare Love Share Exhibit

The Quezon City Government, through the City Health Department, the QC Parks Development and Administration, and the Office of Mayor Joy Belmonte, joined the 2023 #LightUpForRare Campaign by lighting the pylon of the Quezon Memorial Circle on February 28.

Ms. Karen Villanueva, President of the Philippine Alliance of Patient Organizations (PAPO), the umbrella organization of 48 disease-specific patient organizations whose mission is towards patient-centered healthcare, said that PAPO fully supports Rare Disease Week and its advocacy for increased awareness, research, and access to treatments for individuals living with rare diseases.

PAPO is committed to working towards better health outcomes and quality of life for all those affected by rare diseases in the Philippines.

Still, Manalansan said, society’s support for RD patients will be best seen in how they are empowered to deal with their condition amid difficulties.

“Although seven years have already passed, we still have a long way to go until all the provisions of the act are fulfilled,” he said.

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