Raise your hands for rare disease

Raise Your Hands for Rare
National Rare Disease Week
Privilege Speech

Senator Pia S. Cayetano
25 February 2015

Mr. President, esteemed colleagues,

Today, I rise on a matter of personal and collective privilege to bring attention to rare diseases or ‘orphan disorders,’ which are health conditions that result from genetic defects that rarely affect the general population. Seventy-five percent (75%) of rare diseases affect children.[1] A few months ago, we had the privilege of having some of these children here in the Senate during the hearing for the Rare Disease Bill, the committee report of which is currently being finalized and will be filed soon.

This week, we celebrate National Rare Disease Week, which culminates in Rare Disease Day on February 28th. 2015 marks the eighth consecutive year of Rare Disease Day, and this year’s theme, “Living with a Rare Disease,” focuses on the daily lives of patients, families, and caregivers who are living with a Rare Disease. This year, it pays tribute to the millions of parents, siblings, relatives, and friends, whose daily lives are affected, and who are living day-by-day, hand-in-hand with rare disease patients.

I know from experience the challenges they face, because I cared for and lost my youngest son due to complications from a rare congenital disease called trisomy 13.

Over 6000 different rare diseases have been identified to date, and this directly affects the daily lives of more than 30 million people in Europe alone. Because rare diseases are often chronic, debilitating, and life-threatening, patients need not only special medical treatment, but also solidarity, support, and care from their loved ones.[2]

These are Vicente, and twins Peter and John Parco, three brothers who are living with Hunter Syndrome. This is a rare genetic disorder that occurs when an enzyme your body needs is either missing or does not work properly. This eventually causes permanent, progressive damage that affects their appearance, mental development, organ function, and physical abilities.[3] These brothers are currently taking a maintenance drug, and they are living fairly normal lives. The twins are now in fourth year high school, while Vicente is in his third year. They each have their own aspirations. Vicente dreams of someday being a cop, John wants to become a cartoonist, and Peter wishes to be an IT specialist.

Other children affected with rare disease do not share the same situation as the Parco brothers, who have been fortunate enough to receive help and support to sustain the maintenance drugs they need. The treatments and drugs for rare disease are not easy to find, and even when they are available, they are often too expensive. Thus, they are usually beyond the means of many patients. This is where the government must step up to help these children and their families. During the budget deliberations for the Department of Health, I raised the need to fund health care and assistance for rare disease patients, and proposed that P100 million be taken from the proceeds of Sin Tax for this purpose.

As part of the events for Rare Disease Week, I, along with the Philippine Society for Orphan Disorders, invite everyone to share in the celebration by joining two awareness campaigns. The first is to “Raise Your Hands for Rare.” Take a photo, selfie, or groupie with your hands raised, and post this on the Facebook site for National Rare Disease Week. Raising your hands for rare diseases means you are adding your voice to the call for better support for Filipinos afflicted with rare diseases.

The second is the Global Genes Project “Wear That You Care” awareness campaign. This is a worldwide campaign that encourages people to wear blue denim ribbons and their favorite pair of jeans on February 28, this year’s World Rare Disease Day, to recognize rare disease and support the millions who are fighting and living with rare and genetic disease.

Mr. President, these are small acts and gestures that we can do to show our solidarity for patients with rare disease, and their families and friends who stay by their side to support and care for them. Through greater awareness and positive action, we can work towards providing not only better health care for them, but also a more understanding and nurturing world for them to live in. And more importantly, support for the committee report that I will soon sponsor will also go a long way to alleviate the plight of these children and their families. Thank you.

End notes:

[1] Padilla, C. “Orientation on Rare Disorders and the Proposed Rare Disease Act of the Philippines” as presented in the Senate Committee Hearing on 26 August 2014.

[2] www.rarediseaseday.org

[3] http://www.mayoclinic.org/diseases-conditions/hunter-syndrome/basics/treatment/con-20026538

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