The National Rare Disease Week (Feb 22-28) and the International Rare Disease Day (Feb 29) has come and
gone but the fight to raise awareness and uplift our friends and family afflicted with rare and orphan disorder still continues.
But what exactly is Rare Disease and how can we show our support for the Rare Disease community? According to the World Health Organization (WHO), rare diseases or orphan disorders are a “life-threatening or chronically debilitating diseases, which are of such low prevalence that special combined efforts are needed to address them.” \In the Philippines, a disease is considered rare when it affects one patient in every 20,000 people in the country until a final definition is formalized by the Technical Working Group of the Department of Health (DOH).
Meanwhile, the Philippine Society for Orphan Disorders, Inc. (PSOD) notes that there are over 7,000 rare diseases identified globally and are typically genetic in origin. As such, rare diseases typically affect children who are oftentimes at risk of a delayed diagnosis or even a misdiagnosis due to a poor understanding of their condition.
Furthermore, the DOH stresses that patients afflicted with rare diseases often have their quality of life reduced and are dependent on other people to attend to their basic needs. They also need lifelong medical care which may range from medications and multidisciplinary therapies to alleviate the symptoms and effects of the disease.
Moreover, PSOD holds a registry of 319 individuals with rare diseases representing 63 rare disorders but due to the rarity of their condition, Filipino patients are burdened with a lack of existing network of support to aid them. Medical assistance is elusive under the conditions of the country’s health priority, and raising awareness for people affected by rare disease still looms.
Hence, the challenge of funding and sustained financial support is also an unfortunate reality for many of our loved ones with Rare Disease. But the cost of treatment should not be directed towards monetary value but to the value for health and drastic improvement in the quality of life that the treatment, support, and management can provide to the Rare Disease community at large.
Thanks to the love and support from our friends in the private and public sector, the Republic Act 10747 or Rare Diseases Act was signed into law in March 2016. The law aims to improve rare disease patients’ access to comprehensive medical care; and among other things, identify interventions, and design research studies on rare diseases; and promote public awareness on rare diseases, among others.
Under this law, the patients are also considered as persons with disabilities (PWDs) and are entitled to the corresponding benefits and privileges such as priority programs and discounts. The Philippine Health Insurance Corp. (PhilHealth) is also mandated to provide benefit packages for patients,and incentives for donations intended for research on rare diseases.
But this is just a start. We still have a long way to go until all the provisions of RA 10747 are fulfilled. With this, we invite everyone to join hands with the Rare Disease community and show their love and care for the Rare. If you wish to show your support or make a donation for the Rare Disease community, you may visit the PSOD website at http://psod.org.ph or Facebook on https://www.facebook.com/psod.org.ph for more information.