“Our policymakers should honor the commitments promised by the Rare Disease Law.”
Universal Health Care, as described in the Department of Health (DOH) website, is the “provision to every Filipino of the highest possible quality of health care that is accessible, efficient, equitably distributed, adequately funded, fairly financed, and appropriately used by an informed and empowered public,” or simply, making healthcare services available and accessible for all Filipinos. As mandated in the Universal Health Care Act, the government is duty bound to ensure that all Filipino shall receive affordable and quality health benefits.
Most of us have, at best, a general awareness of the life threatening illnesses that have caused the death of loved ones and acquaintances. According to 2019 data from Statista, “one of the leading causes of death in the Philippines was ischaemic heart disease impacting approximately 97.48 thousand people. The other four leading causes of death were malignant neoplasms (Cancer), cerebrovascular disease, pneumonia, and diabetes mellitus.”
However, there is much less awareness of equally tragic rare diseases (RDs) that according to the University of the Philippines-National Institutes of Health (UP-NIH), strikes 1 in every 20,000 Filipinos or approximately 6,500 patients most of which are in the economically challenged sector of our society.
In last week’s virtual roundtable discussions hosted by the Stratbase ADR Institute (ADRi) in partnership with Universal Health Care Watch (UHC Watch) and the Philippine Society of Orphan Disorders themed “No One Should be Left Behind Amid the Continuing Pandemic – Facilitating the Implementation of the Rare Disease Law for 2022”, government implementors and stakeholders discussed ways to overcome the challenges that have delayed the full implementation of the Rare Disease Act (RA 10747) which had been passed way back in 2016. It took six years for advocates to finally see an allocation of P104.9 million in this year’s General Appropriations Act.
Dr. Carmencita D. Padilla, Chancellor of the University of the Philippines Manila, described rare diseases as chronic, progressive, degenerative, life threatening, and debilitating not just for the quality of life of RD patients but also for their families. She pointed out that RD patients are not even in the registry and stressed that diagnosis early in life may give RD patients a chance to live good lives and proceed to have their own families in the future.
Dr. Padilla clarified that they are not creating a new network; they just want to be included in the existing framework of the Department of Health as the law rightly establishes DOH as the lead and provides a platform for the collaboration among government, non-government agencies, and organizations.
Dir. Eva Maria C. Cutiongco-dela Paz, Executive Director, UP-National Institutes of Health (UP-NIH), discussed their roles such as assisting in the diagnosis of rare diseases through various confirmatory test thru the Institute of Human Genetics. If the test is not available in the country, they facilitate testing through their linkages abroad.
Dr. Lizette Kristine Lopez, Chair of the Subcommittee on Drugs Health Technology Assessment (HTA) Council said that just getting diseases diagnosed greatly impacts a household’s finances without even considering the treatment which is already very expensive.
Though the government’s objective is to reduce out-of-pocket expenses, Dr. Lopez said that there are legal obstacles for the HTA council particularly for rare diseases where the required clinical trials, systematic reviews, and meta-analysis are not available, because they are rare diseases. She adds that as they are mandated to assess health technologies related to rare diseases on the affordability and the viability and the cost effectiveness, these are generally very expensive and are another obstacle in getting approval.
Stratbase ADRi President Prof. Dindo Manhit stated that due to the low prevalence and the widely dispersed distribution of patients with rare diseases, there is an evident disproportion in the availability of treatments and resources.
“We see that various stakeholders can proactively collaborate in the decision-making process so that through this whole-of-society approach the country’s health systems could achieve better health outcomes with a greater sense of accountability in healthcare delivery,” Prof. Manhit said.
UHC Watch Co-convenor Alvin Manalansan for his part said, “Access to quality, safe and effective healthcare and treatment should be available for all, regardless of age, sex, status and/or condition.”
“We propose that the funding of the Rare Diseases Law will be sustained in the succeeding years with a specific line item in the GAA and higher allocations to expand the coverage of more types of diseases so that more RD patients will have access to needed health services,” Manalansan said.
The global health crisis we are now struggling to recover from is a hard lesson for all humanity of the primacy of health as an existential requisite. Our policymakers should honor the commitments promised by the Rare Disease Law by assuring that there are appropriate and sustained resources for implementation.