• House OKs Rare Diseases Act

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     The House of Representatives has approved on third and final reading a measure promulgating a comprehensive policy on needs of persons afflicted with rare disorders.

    Rep. Eufranio C. Eriguel (2nd District, La Union), chairman of the House Committee on Health, said House Bill 5973 will ensure that every patient diagnosed to have a rare disease will be provided access to timely health information and adequate medical care, including drugs and other healthcare products, to alleviate their health conditions.
    Eriguel said the bill will also guarantee the development of medical protocols with which to alleviate, if not cure, the conditions associated with rare diseases, including drugs, through research and development studies and by facilitating the importation or manufacture of affordable orphan drugs or orphan products.
    Rep. Sol Aragones (3rd District, Laguna), principal author of the bill, said knowledge is the first step towards any kind of cure.
    “While we focus our attention on the prevention and cure of the more common diseases, we must not be totally blind to the rare diseases and conditions suffered by many of our countrymen. Most vulnerable to these rare afflictions 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,” Aragones said.
    Rep. Rosemarie “Baby” Arenas (3rd District, Pangasinan), another author the measure, said the bill will help provide patients with rare diseases and their families better access to adequate medical care, health information, and health care products needed to their condition.
    One of the key provisions of the measure, to be known as the “Rare Diseases Act,” is to provide reliable information on rare diseases to be used for policy-making by the establishment of a National Rare Disease Registry.
    The bill requires health practitioners who attend to patients with rare diseases to provide substantial information regarding the significance of diagnosis and management of rare diseases to them and their families. This is to ensure that the afflicted person with rare disease is referred to a regional Newborn Screening Continuity Clinic (NSCC) identified by the Department of Health (DOH) as referral clinics, and to report cases of rare diseases to the National Institute of Health (NIH) for inclusion of data in the Rare Disease Registry.
    The measure designates persons afflicted with rare diseases as persons with disabilities and shall enjoy the same rights as mandated under Republic Act 9442, otherwise known as the “Magna Carta for Disabled Persons.”
    It mandates the DOH to create the Rare Disease Technical Working Group (RDTW) that is tasked to identify rare diseases, orphan drugs and products upon the recommendation of NIH and RDTW.
    Also, the bill provides regulatory and fiscal incentives on donations, researches and studies on orphan drugs and products. It exempts all donations intended for researches, maintenance of Rare Disease Registry, or for the purchase of orphan drugs and products from all tariff and duties.
    Further, the measure delineates the role of government agencies involved in the implementation of this Act. PNA

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