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Lawyer’s quest on a bicycle to raise dystonia awareness

(Conclusion, continued from yesterday)

Six months after recovering from dystonia, a rare neurodegenerative disorder that affects muscular movement, lawyer JP Anthony Cuñada launched an advocacy to help end the misery of his fellow patients, particularly in his home province of Panay.

According to Cuñada, his drive is one way of helping scientists, geneticists, microbiologists, and specialists by collecting the data that they need in their research.

“Everyone is doing their part in finding the cure for dystonia. And they are very patient and enduring to find the cure. I can’t do that intellectual distance. But this I can,” Cuñada said on what inspired him to continue biking despite his condition.

“That’s why, on the other level I want them to know that, hey guys, there is also someone here like you who is determined or perhaps desperate to find the cure,” he added.

“When the going gets tough in the laboratory, I want them to know that there is also someone here, although not in your field, but in another field, who is willing to go this distance to find the cure for dystonia,” Cuñada said in his message to the medical staff at The Sunshine Care Foundation and other specialists across the globe, while fighting back his tears.

Cuñada urged Secretary of Health Dr. Francisco Duque to respond to his Dec. 13, 2017 letter, where he inquired on what Republic Act 10747 or the Rare Diseases Act of the Philippines can do to people with XDP, especially those who have not undergone Deep Brain Stimulation like him.

RA 10747 orders the DoH to establish the Rare Diseases Technical Working Group, composed of a pool of experts on rare diseases from the National Institute of Health and other agencies. A rare disease or orphan disease “is any health condition resulting from genetic defects that rarely affect the general population.”

This working group is tasked with identifying rare diseases, orphan drugs, and orphan products.

“Has the RDTWG been convened by DoH? May I have the list of the names of these designated pool of experts? May I also have the list of disorders or diseases determined by the RDTWG as rare, as well as the list of orphan drugs, and orphan products?” Cuñada wrote Duque.

“Also, what policies have been formulated by RDTWG to regulate the approval and certification of orphan drugs and orphan products? When is their regular meeting? May I look into significant Minutes that will help enlighten patients like me,” he asked in his letter, which remains unanswered.

“Upon studying the Rare Disease Act, there might not be a need for a separate law on XDP [X-linked dystonia-parkinsonism]. RA 10747 is so broad it covers all rare diseases including dystonia. But the RDTWG must do its job,” the lawyer said.

“I would like to know if dystonia is listed by the RDTWG as one of the rare diseases in the Philippines. Because if it did, then, we dystonia patients can avail of these benefits enumerated in Sections 21 and 22, Article VII of the law,” he added.

“I searched the internet and the DoH website about any information about the RDTWG, yet I could not find any,” Cuñada said.

Signed into law by then-President Benigno Aquino III on March 3, 2016, RA 10747 “will help provide patients with rare diseases and their families better access to adequate medical care, health information, and healthcare products needed to treat their condition.”

A person with rare diseases can avail basic benefit package from the Philippine Health Insurance Corp. (Philhealth), 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.

Cuñada urged DoH to convene RDTWG before he will file charges against the agency.

It is provided in the Anti-Red Tape Act that you must respond to a letter within three days, the lawyer said.

Cuñada, who has been in the legal profession for the past 10 years, also asked President Rodrigo Duterte to intercede for them with the DoH and act on his concerns.

Topics: dystonia , JP Anthony Cuñada , Francisco Duque , Rare Diseases Act of the Philippines , Department of Health
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