Pangasinan 'rare disease sufferers,' other patients in PH to benefit on new health law

MANILA, Philippines - Two years ago, the alleged 'mysterious disease' in Pangasinan province went viral online. Authorities then clarified that patients are suffering from rare diseases leprosy and severe case of psoriasis to dispute original report from ABS-CBN.

Pangasinan 'rare disease sufferers,' other patients in PH to benefit on new health law

Reporter Jasmin Romero described the two patients from Santa Barbara and Villasis as having “decaying” (naaagnas) skin due to a “mysterious disease” (misteryosong sakit).

The Department of Health (DOH) local official said that the case is called necrotizing fasciitis, a serious bacterial infection that spreads rapidly and destroys the body’s soft tissue.

In 2014, the Dermatological Society North Luzon Chapter said it will help the 2 patients with severe skin disease given their status in l

The incident became a wake up call for the government to push for the passage of a bill that will mandate the government to assist persons with rare disease by increasing their access to medical treatment and drugs.

On Wednesday, March 9, Teofisto "TG" Guingona III, Senate chairman of the Committee on Health and Demography announced that Sen. Pia Cayetano's the health bill, which mandates PhilHealth to cover the treatment of rare diseases, has finally been signed into law.

Republic Act 10747, otherwise known as the Rare Diseases Act of the Philippines, was signed by Pres. Benigno S. Aquino III early March. The new law seeks to "improve the access of patients diagnosed to have a rare disease, or patient highly suspected of having a rare disease, to comprehensive medical care and to timely health information to help them cope with their condition."

Guingona co-sponsored the Rare Diseases Act legislated by Sen. Pia Cayetano, who serves as vice chair of Guingona's health committee. "To patients afflicted with rare diseases, the law ends the days of going through it alone," Guingona said. "It puts into place a permanent and sustainable mechanism by which government could care for the health of everyone with rare or orphan disorders."

The Philippine Society of Orphan Disorders informs that, apart from those whose ailment is undetected or kept in secret, rare diseases afflict one out of 20,000 people. Children comprise as much as 75 percent of those with rare diseases.

Guingona said that unlike patients with conventional ailments, those afflicted with rare diseases often need treatment and care for the rest of their lives. Accordingly, RA 10747stipulates that those suffering from a rare disease will be considered as Persons with Disabilities (PWDs) and shall enjoy the same benefits mandated by RA 7277, as amended, or the Magna Carta for Disabled Persons.

In addition, the new law mandates that orphan drugs and products for the sole use of patients with rare diseases, as certified by the FDA will be exempted from all taxes and customs duties.

"I thank the President and Sen. Pia Cayetano for giving the sick a fighting chance and once again demonstrating the administration's policy of inclusivity," said Guingona.

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