Noy signs law aimed at helping people with rare disease

MANILA, Philippines - President Aquino has signed a law that will help persons with rare disease have better access to comprehensive medical care.

Signed on March 3, the Rare Diseases Act of the Philippines seeks to “improve the access of patients diagnosed to have a rare disease, or patient 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 has defined rare diseases as “disorders such as inherited metabolic disorders and other disease with similar rare occurrence as recognized by the Department of Health (DOH) but excluding catastrophic forms of more frequently occurring diseases.”

Under the law, patients with rare disease will be considered as persons with disabilities, so they will also enjoy privileges like priority programs and discounts.

The law mandates the Department of Social Welfare and Development to grant patients with rare disease the benefits provided by the Magna Carta for Disabled Persons.

The DOH is the lead agency in implementing the Rare Diseases Act. The agency is also tasked to convene a technical working group.

In coordination with the National Institute of Health (NIH), the DOH will create a rare disease registry, which will determine the kinds of rare disease in patients across the country.

The registry will also identify and list patients diagnosed with rare diseases nationwide and the status of their treatment.

The DOH, NIH and the Food and Drug Administration will also identify the drugs and products that will be used to diagnose, prevent or alleviate the symptoms of rare diseases.

The law also directs the Department of Labor and Employment to provide employment opportunities for able-persons with rare diseases.

The Department of the Interior and Local Government and the Department of Education are also directed by the law to ensure opportunity for public service and education for people with rare diseases, and the privileges relevant to these agencies will be given.

Meanwhile, the Department of Science and Technology will provide research avenues for the further study of rare diseases and their treatment.

The technical working group will also create public education and information campaigns on rare disease, people afflicted with these and how these should be treated.

Persons with rare diseases may avail of medical assistance and benefits provided by the Philippine Health Insurance Corporation and by the Sin Tax Reform Act.