Public health stakeholders urge gov’t to sustain Rare Disease Act

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MANILA, Philippines —  Aiming to ensure its envisioned implementation and consistent funding, public health stakeholders called on the government to sustain the Rare Disease Act of the Philippines.

In a recent statement, Stratbase ADR Institute President Professor Victorio Andres Manhit cited the evident inadequacy in the implementation of the law.

“There is an evident disproportion in the availability of treatment and resources, and this inequality is being aggravated by the COVID-19 pandemic,” Manhit said.

Following the Congress’ budget allocation, Manhit stressed that it is time for stakeholders to address the concerns in its implementation.

“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 added.

Several representatives of stakeholder groups including Dr. Razel Nikka Hao, Dr. Eva Maria Cutiongco-dela Paz, Ms. Daisy Sembrano, Durhane Wong-Rieger Ph.D., Ms. Cynthia Magdaraog, and Dr. Carmencita Padilla also aired they insights on the importance of the law.

“We are trying to be as inclusive as possible despite some of the limitations in the law,” Padilla said.

Furthermore, Padilla emphasized that a whole of society approach is needed in addressing the concerns.

On the other hand, Senator Sonny Angara, Chair of the Senate Committee for Finance, recognized the challenges in funding due to the pandemic.

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

Despite this, the senator has reiterated the commitment of the legislative body in supporting the cause, mentioning that the private sector should be encouraged – incentivized – and should partner with the government in making progress to fight against rare diseases.

The Rare Disease Act was passed in 2016 as a means to address the needs of persons with rare diseases and to increase their rate of survival. — Christian Paul Dela Cruz, Inquirer.net trainee

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