The Official Publication of Volunteer Youth Leaders for Health - Philippines

Tuesday, November 10, 2015

Rare Disease bill moves closer to passage

The House of Representatives 
Health Promotion and Advocacy Update

There are already a number of rare disease bills filed in the Senate and House of Representatives since the 14th Congress, and now, the Rare Disease Bill moves closer to passage within the 16th Congress with its approval in the House of Representatives last August 24, 2015.

The Rare Disease bill ensures that persons with rare diseases will receive necessary medical information, healthcare, as well as rights and benefits as Persons with Disabilities (PWDs). It will also integrate the care and management of patients with rare disease to the current public healthcare system, and contribute on achieving Universal Healthcare.

Rare diseases are life-long, progressive, degenerative, life-threatening and disabling conditions. At present, a disease is considered rare if it affects 1 in 20,000 individuals or less, as defined by the Institute of Human Genetics (IHG)-NIH, UP Manila. It is estimated that around 6,000 to 10,000 individuals, mostly children, in the Philippines are afflicted with rare diseases. 

Among the rare diseases mentioned in the bill are Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phenylketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome and Lubag. Some rare diseases are detected through newborn screening (NBS) – both basic (6-test panel) and expanded NBS.

The version of the Rare Disease bill in the House is a consolidation of nine house bills and it was authored and supported by principal author Diosdado Arroyo (2nd District, Camarines Sur) and 30 other legislators. House Bill 5973, otherwise known as the “Rare Diseases Act”, mandates the formation of the Rare Disease Technical Working Group (RDTWG) under the Department of Health (DOH), the lead agency in implementing the measure. Among the tasks of DOH-RDTWG is the identification of rare diseases, designating orphan drugs and products corresponding to a type of rare disease, as well as formulate policies on its regulation.


The bill also mandates the establishment of a National Rare Disease Registry – a health information system that contains data on the types of rare diseases, persons affected with the disease, and available orphan drugs and products. Data from the registry will also be vital for policymaking. 

The bill also requires the referral of rare disease patients to a Regional Newborn Screening Continuity Clinc (NSCC) so that ample medical information and counseling will be provided to rare disease patients and their families. 

Also included in the bill are provisions on the continuing education and training of health personnel; public education and information campaigns on rare disorders; development of medical protocols and drugs through research and development; funding for treatment and medication of rare disease patients; tax exemptions; facilitation of the entry of imported orphan drugs and products; and safeguards on the rights and benefits of rare disease patients as PWDs. Aside from the DOH, other government agencies that were identified and tasked under the bill include the Philippine Council for Health Research and Development (PCHRD)-DOST, Food and Drugs Administration (FDA), Philippine Health Insurance Corporation (PhilHealth), National Institutes of Health (NIH), Department of Social Welfare and Development (DSWD) and Department of Labor and Employment (DOLE). 

On the other hand, the movement of the bill’s Senate version also showed great strides. Last October 7, Senator Pia Cayetano and Teofisto Guingona III of the Senate Committee on Health and Demography filed Senate Committee Report 286 which consolidates the five rare disease bills in the Senate into one bill, Senate Bill 2990. Four other committees were involved in the crafting of the bill namely the committee on social justice, welfare, and social development; ways and means; youth and finance.

A day after the resumption of the Senate's session (November 4), the Senate Committee Report was presented to the Senate through Senator Pia Cayetano's sponsorship speech on SB 2990 - The Rare Disease Act of the Philippines. 

As she asked for the swift passage of the bill, Sen. Pia Cayetano said that "on a policy level, this (SB2990) is a health bill which aims to reduce child mortality and reduce poverty. However, for the Filipinos who are directly affected by this condition, this measure will relieve some of the economic burden of managing rare diseases. More importantly, they can hope for a better quality of life for the ones they love".



Senator Pia S. Cayetano poses for a photo with her guests at the Senate gallery before delivering her speech on SBN 2990...

VYLH-Philippines prepared a video of the sponsorship speech excerpted from the Senate video coverage of the session. The transcript of speech was uploaded in her website (senatorpiacayetano.com). 





NAST sponsors Science Legislative Forum

A few days after approval of the Rare Disease bill in the House, the National Academy of Science and Technology - Department of Science and Technology (NAST-DOST) hosted a Science Legislative Forum (SLF) on Rare Diseases at the Philippine International Convention Center (PICC) last September 2, 2015. The forum aims to review the global scenario of rare disease; assess the Philippine situation and discuss challenges in the care of rare disease patients; orient various stakeholders on the proposed Rare Disease Act; and discuss the role of concerned government agencies. 

Participants of the NAST-DOST SLF on Rare Disease (Photo: NAST-DOST).
During the forum, NAST Academician and SLF focal person Dr. Carmencita Padilla renewed her call for the passage of the Rare Disease Act. This is after the Roundtable Discussion on Rare Disease organized by NAST on October 2014. In relation to the importance of the bill’s passage, Dr. Padilla noted that “Even if we are just talking about one, ten, twenty, thirty or a hundred versus a hundred million, they sill deserve a right to life”. Dr. Padilla also expressed her hope that the bill will be passed within the 16th Congress. 

Talking on the local and global setting, Dr. Mary Ann Abacan of the Institute of Human Genetics-NIH, UP Manila noted the challenges to the rare disease community such as the missed or delayed diagnosis of patients which often results to irreversible damages; the limited availability and high cost of treatment; and the social and emotional burden on patients and their families.

Dr. Anthony Calibo, Supervising Health Program Officer of the Family Health Office-DOH, discussed the integration of care of patients with rare diseases in the public health care system. He noted the action of DOH including the implementation of RA9288, the services available in NSCCs and the increasing attention to the “Kalusugan Pangkalahatan” or Universal Healthcare campaign.

At the end of the SLF, the participants raised their hands in support of the Rare Disease Bill. The SLF was attended by doctors, health professionals, scientists, government officials and advocates. (RPascual, with reports from GMANews, NAST-DOST) 


The National Academy of Science and Technology, Philippines (NAST PHL) held the Science Legislative Forum (SLF) on Rare...
Posted by National Academy of Science and Technology (NAST), Philippines on Wednesday, September 30, 2015

Change.org Petition

VYLH-Philippines and the Philippines Society for Orphan Disorders (PSOD) launched an online petition for the urgent deliberation and passage of the Rare Disease Act within the 16th Congress. Both organizations invite the public to visit the Change.org petition (Change.org/RareDiseaseActPetition or bit.do/careforrare).


The easiest way to show your support for Filipinos with rare disorders is just a click away.Support the plight and...
Posted by Volunteer Youth Leaders for Health - Philippines on Thursday, July 24, 2014



UPDATE:
  • The Senate closed the period of interpellation and committee amendments on SB 2990 last December 1. 
  • Senators were given one week for individual amendments.  On December 8, the Senate passed the bill on Second Reading without amendments.
  • Voting 16-0, the Senate approves the proposed Rare Disease Act (SB2990) on third and final reading last December 14, 2015.
  • The House of Representatives adopted the Senate version as an amendment to the House version (HB5973) on December 15, 2015.
  • The consolidated version reached the President's Desk for his signature and approval on February 2016 and it was eventually signed on March 3, 2016. The day is also the first formal observance of World Birth Defects Day in the Philippines.
_________________
VYLH-Philippines was invited to attend NAST-DOST SLF on Rare Disease. Representatives from VYLH-Philippines were present during the event namely NCR-South Luzon Coordinator Rufus Thomas Adducul and Maris Cura. The network extends its deepest gratitude to NAST-DOST for considering VYLH-Philippines as the youth representative to its events related to the rare disorder support advocacy.
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