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Friday, March 29, 2024

Persons with rare diseases get perks

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A lawmaker  on Tuesday lauded the enactment into law of  his proposal to promulgate a comprehensive policy in addressing the needs of persons with rare diseases.

Parañaque City Rep. Gus Tambunting  said the law signed by President Benigno Aquino III on March 3, 2016 will help provide patients with rare diseases and their families better access to adequate medical care, health information, and health care products needed to treat their condition.

“We laud the President for enacting into law our proposal. Although rare diseases inflict a small number of individuals, treatment is usually life term and costly, making it beyond the reach of most Filipino patients,” said Tambunting.

Tambunting, a vice chair of the House committee on trade and industry, explained that a rare disease, otherwise called “orphan disease” is any health condition resulting from genetic defects that rarely affect the general population.

“There are 6,000 to 8,000 rare diseases, majority of which are genetic in origin and manifest at birth or early in childhood. Rare diseases are often chronic, progressive, degenerative, and life threatening. The quality of life of patients is often compromised by the lack or loss of autonomy, high level of pain and suffering for the patients and their family,” said Tambunting.    

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The law refers to rare disease as disorders such as inherited metabolic disorders and other diseases with similar rare occurrence as recognized by the Department of Health upon recommendation of the National Institutes of Health but excluding catastrophic (i.e., life threatening, seriously debilitating, or serious and chronic) forms of more frequently occurring diseases.

Under the measure, the DoH, in coordination with the NIH, shall create a Rare Disease Registry. It shall endeavor to comply with set global standards, if applicable. All patients diagnosed with rare disease shall be included in this registry.

Patients highly suspected of, or diagnosed with, rare disease will be referred to a newborn screening continuity clinic identified by the DoH as referral centers for treatment of rare diseases under the National Comprehensive Newborn Screening System. For patients from remote areas, the Telegenetics Referral System will be utilized.

The Department of Social Welfare and Development shall provide assistance to persons with rare disease to ensure that their social welfare and benefits provided under Republic Act No. 7277, as amended, are granted.

Meanwhile, the Department of Labor and Employment shall adopt programs that promote the availability of opportunities for work and employment of able-persons with rare disease.

A person with rare disease may avail of the basic benefit package from the Philippine Health Insurance Corporation, which shall be provided in accordance with its guidelines; and medical assistance as provided in Section 8 of Republic Act No. 10351 or the Sin Tax Reform Act of 2012.

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