Caring for Rare

Starting February 22-28, 2017, the Philippines celebrates the 8th National Rare Disease Week together with the global commemoration of the Rare Disease Day on February . 28,2017, highlights the need to intensify the country’s efforts to provide adequate health care and government support to persons afflicted with a Rare Disease otherwise known as orphan disorder.In the Philippines, a disease is considered rare if it affects 1 in every 20,000 individuals or less. Those afflicted with rare disease or orphan disorders suffer from social abandonment due to lack of existing network of support to aid them. The nature of rare disease is hardly known as well due to lack of information; and only few medical professionals in the country are aware of these disorders and how to diagnose and address these conditions.  Medical help is also elusive under the conditions of the country’s health priorities.

The country recently enacted   the Rare Diseases Act of 2016 (Republic Act 10747) which seeks to “improve the access of persons diagnosed to have a 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 mandates the Philippine Health Insurance Corporation (PhilHealth) to provide benefit package; medical assistance as provided in the Sin Tax Reform Act of 2012; fiscal incentives for donations intended for researches on rare diseases, maintenance of the Rare Disease Registry, or for purchase of orphan drugs or orphan products for use solely by persons with rare diseases as certified by FDA. Further, under RA 10747, patients with rare disease will also be considered as persons with disabilities and will be granted benefits and privileges such as priority programs and discounts as mandated by the Magna Carta for Disabled Persons.

DOH Secretary Paulyn Ubial and Dr. Carmencita Padilla with children with rare disease.DOH Secretary Paulyn Ubial and Dr. Carmencita Padilla with children with rare disease.

Mr. Randy Martinez, recounts the challenges of going back and forth to the hospital as her daughter Pauline, seeks treatment for her Gaucher disease. Pauline who is now 11 years old, was noticed to have a small bump on her left torso when she was 6 months old and was later found out after years of  several tests to be Gaucher disease. “Sana magpatuloy pa ang paggamot kay Pauline at marami pang tumulong sa kanya para dire-diretso ang gamutan. Para makapag tapos din siya ng pag-aaral”, Pauline’s father said.

Meanwhile, Secretary of Health Paulyn Ubial stated that the DOH is doing it’s effort to help determine rare disease patients worldwide with the help of Dr. Carmencita Padilla during the press conference last Feb. 23, 2016 a Century Park Hotel Manila.

For now lets continue helping rare disease patients by sharing awareness that the Department of Health (DOH) and other key individuals are willing to help kids and identify what kind of rare disease they have so proper medication could be given.