‘Rare disorders without borders’
Living with rare disease is difficult not only for the patients but for their families as well.
In the Philippines, rare disease has yet to be included in the government health agenda. The challenges—which include access to proper and timely diagnosis and treatment/intervention, information, specialists, and healthcare and social services—are magnified several fold for a Filipino parent with a child with rare disease compared to those in the EU, US, Canada, Australia, Taiwan, Japan and South Korea.
Common challenges the families of patients with rare disorders face include lack of access to correct diagnosis and referral, lack of awareness and information, lack of appropriate health care and infrastructure, lack of access to treatment and management, burden of financing treatment and/or proper management is with the family, uncertainty of sustained donor support and that rare disease is catastrophic to most families
National Rare Disease Week to promote greater awareness
Presidential Proclamation No. 1989 declares the last week of February of every year as the “National Rare Disease Week”. The proclamation underlines the role of the State in protecting and promoting the right to health of the people, including the right of persons suffering from rare diseases to have access to timely information and adequate medical care. It also underscores the urgent need to conduct a national information campaign in order to create awareness among health professionals about the nature and management of rare diseases; and instill awareness among the public about rare diseases to generate full support for the special needs of children affected by rare diseases from both private and public sectors.
Here in the Philippines, the Philippine Society for Orphan Disorders, Inc. (PSOD) and the Institute of Human Genetics of the National Institutes of Health, University of the Philippines Manila, in partnership with organizations and individuals who supports the advocacy, have taken the lead in the awareness and policy campaign for rare disorders as well as in undertaking all viable means of generating a more sustainable aid for the care of patients.
2013 theme: ‘Rare Disorders Without Borders’
Eurodis, the Europen alliance of patient organizations for rare disease, takes the lead in mobilizing the international community to conduct local awareness initiatives. In 2012, 63 countries joined the campaign, including the Philippines.
This year’s theme for the World Rare Disease Day and the National Rare Disease Week (NRDW) is RARE DISORDERS WITHOUT BORDERS. According to Eurodis, “Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation. The theme for 2013 reminds us that looking at rare diseases from an international perspective is particularly important, in terms of research, health policy and for the millions of patients and families throughout the world who can break out of their isolation though a vast international network of solidarity.”
Here in the Philippines, the theme is relevant in at least two areas: (1) that many of the Filipinos with rare diseases are struggling not just against the physical limitations but also against the perceptions of the people around them and of the society at large—that because they have debilitating illnesses, they can do nothing and (2) that because they are few in numbers and the cost of caring for them is high, they cannot be a priority in terms government support.
Appeal for the inclusion of rare diseases in the Universal Health Program
On the occasion of the 4th NRDW, PSOD reiterates its appeal to the government for support. Persons born with and afflicted with rare or orphan disorders are a vulnerable and special population. Despite their small population, Filipinos afflicted with rare disease must also be ensured with better access to health through the inclusion in the DOH’s Universal Health Agenda as well as the Philhealth under the catastrophic illness program on the basic premise that ‘nobody is left behind’ and on the basic right to life.
Better access to health services and health coverage will reduce out-of-pocket spending of the family for the medical needs of the patient and perhaps eliminate the catastrophic expenditures that drive a family to poverty—allowing to channel the much needed earnings to their other day-today needs. The parents—the primary caregivers of the patients—can also be more productive. Patients who are diagnosed and treated early enough can live normal lives and be productive as well.
‘Wear That You Care’ campaign
On Feb 22, PSOD is launching the Philippine ‘Wear That You Care’ campaign enjoining the public to wear advocacy ribbons made out of blue denim materials and to wear ‘maong’ pants on Feb 22-28, particularly on the 28th as the World Rare Disease Day. Wearing the ribbon is a show of support for the Filipinos fighting rare diseases and a call for government inclusion of rare diseases in its health programs.
Individuals and organizations are encouraged to take a photo of them wearing the blue denim ribbons and to post the photo on the Wear That You Care For Rare Philippines Facebook page.
The project is an international campaign inspired by the Global Genes Project’s Wear That You Care™ which encourages people to wear Blue Denim Genes Ribbon™
Contact: Cynthia Magdaraog/Karen Panol
Tel No: (02) 661-8935 | Mobile: 0922-8008783