Author Topic: Health dept to develop system to help patients with rare disorders  (Read 659 times)

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Health dept to develop system to help patients with rare disorders
By Leilani S. Junio

MANILA, Feb. 23 (PNA) -- Health Secretary Dr. Paulyn Ubial has announced that her department, together with the UP National Institutes of Health (NIH), will develop a system that would enable them to identify, register and manage persons with rare diseases.

They will also create an effective referral system to provide patients with rare disorders better access to the information, treatment and support they need, Ubial said during the launch of the 1st Philippine Rare Disease Symposium held at the Century Park Hotel in Manila Wednesday.

She further said that the department intends to develop the expertise of health professionals in the country in diagnosing rare diseases, and with the UP NIH, it will employ telemedicine and e-health in screening patients suffering from rare diseases in the absence of experts in remote areas.

If necessary, the department could work with the Philippine General Hospital (PGH) and other specialty hospitals in sending specialists to these remote areas, so patients need not come to Manila to receive the care they need, she added.

The plan entails developing the capabilities of regional hospitals to detect rare diseases, upgrading laboratories, and improving rehabilitation facilities that should come with speech and physical therapists.

The Philippine Society for Orphan Disorder (PSOD) has identified some 319 patients with 63 rare disorders as of last January. These diseases include Adrenoleukodystrophy, X-linked Bruton’s Agammaglobulinemia, Blue Rubber Bleb Nevus Syndrome, CHARGE Syndrome, Congenital Central Hypoventilation Syndrome, Fabry Disease, Fanconi Anemia, Galactosemia, Gaucher Disesase, Glutartic Aciduria, Holt-Oram Syndrome, Lowe Syndrome, Maple Syrup Urine Disease, Mucolipidosis, Phenylketonuria, Pompe Disease, Rett Syndrome, Spinal Muscular Atrophy, and Wiskott Aldrich Syndrome.

PSOD chairperson, Dr. Carmencita Padilla, said this is just the tip of the iceberg and there may be more cases that have not been detected, which the health department and the UP NIH hope to identify over a span of 10 to 20 years.

"With the enhancement of the system that we have now, we will be able to identify (more cases) so we can treat them early," she said.

The World Health Organization (WHO) defines a rare disease as an often-debilitating disease or condition with a prevalence of 0.65 percent to 1 percent. In the Philippines, a disease is considered rare if it affects one in every 20,000 individuals or less.

Those afflicted with rare diseases or orphan disorders suffer from social abandonment due to the lack of a support network to aid them.

The nature of rare diseases is hardly known as well due to lack of enough information on the disorders.

Meanwhile, during the symposium, Ubial assured that drugs and medical supplies needed by patients with rare diseases will be provided through Department of Health hospitals.

The symposium was held in observance of the 8th National Rare Disease Week on Feb. 22-28, which carries the theme, "With Research, Possibilities are Limitless”. Across the world, Rare Disease Day is observed on the last day of February each year to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives.

Nearly a year ago, the Philippines enacted the Rare Disease Act of 2016 (Republic Act 10747), which seeks to "improve the access of persons, diagnosed to have rare disease, or persons highly suspected of having a rare disease, to comprehensive medical care and to timely health information to help them cope with their condition”.

The law also states that patients with rare disorders could avail of a basic benefit package from PhilHealth and medical assistance as provided in the Sin Tax Reform Act of 2012. (PNA)
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