DOH, UP-NIH to search for patients with rare diseases
With only 319 patients recorded to be suffering from rare diseases, the Department of Health (DOH) and the University of the Philippines’ National Institute of Health ( UP- NIH) have partnered to track down the undocumented ones.
The tie- up is meant to create a system for identification, management and registration of persons with rare diseases, including an effective referral system, to provide them with better access to support, treatment and information, Health Secretary Paulyn Ubial said.
A technical group will also identify the needed drugs, products and services of this group to ultimately incorporate them in the medical assistance or Philippine Health Insurance Corp. benefits provided to the public, Ubial added.
The partnership will also develop the expertise of health professionals in terms of diagnosing, treating and managing patients with rare diseases.
“Special consideration will be given, such as provision of benefits similar to those given to persons with disabilities. These are only some of the government’s undertakings to ensure that patients suffering from rare diseases are prioritized and given access to adequate health care and assistance,” she said in a press conference at last Wednesday’s first Philippine Symposium on Rare Diseases.
As of January 2017, there were only 316 patients with rare diseases in the registry of the Philippine Society for Orphan Disorders Inc. (PSOD). They account for 63 rare disorders.
Anyone with rare diseases could be registered in the hospitals of the DOH across the country, Ubial said.
“We want a clear picture of the situation now so that we can come up with programs that will adequately serve their needs,” she added.
The lack of awareness and understanding of these diseases makes these children at risk for serious consequences, according to PSOD founding chair and UP-Manila chancellor Carmencita Padilla.
Breakable
One of the patients is 12-year-old Van Ryan Malud who was born with osteogenesis imperfecta, a condition that stopped his growth and made his bones brittle.
He could break his neck if he sneezes hard. Carrying or holding him with force could also cause him fractures.
But despite his condition, his family has tried to give him a normal life. He is now in Grade 7 and looking forward to earning a college degree.
The boy was born weighing 8.9 pounds, but he stopped growing and his bones started to deform when he was one and a half month-old.