MANILA, Philippines – The House of Representatives recently approved on 3rd and final reading a bill that institutionalizes a comprehensive policy on services for patients with rare diseases.

House Bill 5973 seeks to ensure that patients with rare diseases will have access to “timely health information and adequate medical care,” including medicines. It will also establish a National Rare Disease Registry for policymaking.

The bill also guarantees that other medical protocols will be developed through research and development studies in order to “alleviate, if not cure” the condition of the patients.

The World Health Organization defines a rare disease as an often-debilitating disease or condition with a prevalence of 0.65% to 1%.

Data from the United Nations agency showed there are 7,000 known rare diseases in the world, with 50% to 70% affecting children. About 30% of the patients die before they turn 5 years old.

In the Philippines, a disease is considered rare when it affects one patient in every 20,000 population. (READ: A fighting chance for patients with rare diseases)

The House bill defines a rare disease as referring to disorders such as:

• Gaucher Disease
• Maple Syrup Urine Disease
• Pompe Disease
• Galactosemia
• Phenylketonuria
• Methylmalonic Acidemia
• Urea Cycle Defects
• Hurler Syndrome
• Hunter Syndrome
• Prader-Willi Syndrome
• Lubag
• Other diseases classified as such by the Department of Health, upon the recommendation of the National Institutes of Health, but does not include catastrophic forms of more frequently occurring diseases

The bill designates patients with rare diseases as persons with disabilities who can enjoy the same rights and benefits under the Republic Act 9442 or the Magna Carta for Disabled Persons. (READ: FAST FACTS: What persons with disability are entitled to)

Laguna 3rd District Representative Sol Aragones, one of the bill’s co-authors, said the most vulnerable to rare diseases are children.

“In order to establish means to fight these afflictions, we must commission a study that will aid us in making sound policies that can produce lasting solution to our problem,” she said in a statement on Thursday, September 3. 

Role of health workers

The bill enjoins health practitioners to provide their patients “substantial information” about the importance of the diagnosis and management of a rare disorder.

Health workers are also responsible for referring the patient to a regional Newborn Screening Continuity Clinic and reporting the case so it can be included into the registry.

Under the bill, the cost of care for patients will be funded by a portion of the revenues from sin taxes meant for health programs and projects.

PhilHealth, the government’s national health insurance program, will also include treatment and medicines for rare diseases in the health package for catastrophic illnesses.

Meanwhile, at the Senate, a similar bill filed by Senator Juan Edgardo “Sonny” Angara is still pending in the committee on health and demography. He filed it in 2014, amid the hype of the ALS Ice Bucket Challenge. – Rappler.com

Patient in hospital bed image via Shutterstock