UP Manila Chancellor calls for a more inclusive Rare Disease Act

 

 

September 9, 2022  — “The path towards achieving the overall mission of the Rare Disease Law is not just a societal commitment. It is a commitment of the world to make sure that it is inclusive; that all patients around the world – 300 million patients with rare diseases – will be able to benefit from this policy."

Thus, stated UP Manila Chancellor and Founding Chair of the Philippine Society of Orphan Disorders (PSOD) Dr. Carmencita Padilla during an August 15 town hall meeting that tackled updates on RA 10747 or  the Rare Disease Act.

A rare disease is a health condition resulting from genetic defects. Rare diseases are also termed ‘orphan diseases’ as these afflict only a small number of people but are often considered chronic, progressive, degenerative, and life-threatening. In the Philippines, the maple syrup urine disease and the Hunter syndrome are the most commonly seen conditions. 

Patients with rare diseases will also be considered 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.

The law seeks to create and maintain a Rare Disease Registry that will contain data on rare diseases in the Philippines, patients afflicted with rare diseases, and orphan drugs and products. 

In light of this, as well as the process of the selection of the initial set of rare diseases that will be covered by the law, UP Manila National Institutes of Health Executive Director Dr. Eva Maria C. Cutiongco-dela Paz reported that a total of 159 rare diseases made it into the initial list submitted to the Department of Health.

 

Children living with rare diseases give a message of hope through their interpretation of "Fight Song"

 

 

A health system responsive to rare diseases

In the same meeting, Stratbase ADR Institute President Prof. Victor Anders Manhit emphasized the need to continue the discussion to further facilitate the progressive implementation of the Rare Diseases Law. He called for “more inputs to sustain the support that will deliver health services, expand healthcare coverage, and respond to the challenges of rare disease patients.”

Dr. Razel Nikka M. Hao, Director of Disease Prevention and Control Bureau of the Department of Health provided updates on the five-year strategic plan and the rare disease technical working group. Dr. Hao believes we are in an opportune time with the global world and the Philippines moving towards UHC and COVID-19 being relatively under control. 

“We can relive again the visions that we wanted to start with as we implemented the Universal Health Care Act and also all of the disease acts that were approved in the parallel.” 

Under RA 10747, the Philippine Health Insurance Corporation (PhilHealth) is mandated to include the cost of treatment of rare diseases in the benefits package, and to direct provisions from the sin taxes collection to cover the cost of care for patients with rare diseases.

 

 

 

The law also provides regulatory and fiscal incentives to support research and development studies on rare diseases and to facilitate the manufacture and importation of affordable orphan drugs and products.

Senator Sonny Angara expressed his gratitude to the partners in the private sector for helping make progress in this advocacy, especially with the challenges of funding and implementation brought by the pandemic. He assured the public of the continued support of the legislature in helping people suffering from rare diseases.

Other speakers were Ms. Daisy Cembrano of the Pharmaceutical and Healthcare Association of the Philippines and Dr. Durhane Wong-Rieger of the Canadian Organization for Rare Disorders who joined virtually. 

Anne Marie D. Alto | Published in Manila Healthscape Issue No. 42 (August 2022)