MANILA, PHILIPPINES – They may be rare – few and far between – but they attack the most vulnerable segment of the population. And so the government is morally compelled to search, repel, or stop them on their tracks.
Thus, a lady lawmaker filed a bill seeking to mandate the University of the Philippines National Institutes of Health to conduct research on pediatric rare diseases.
Bulacan Rep. Linabelle Ruth Villarica said House Bill 5106 seeks to update the medical field of pediatrics through the conduct of research on rare diseases and breathe life into the constitutional provision mandating the State to promote the right to health of the young population.
Villarica, chairman of the House committee on women and gender equality, noted that the country’s health institutions are currently left to their own devices in the area of research.
They are also focused on preventing and curing more common diseases, she added.
“With our varied lifestyles, the occurrence of rare diseases afflicting our children is not a farfetched reality. For the guidance of our pediatricians, the other allied medical practitioners and health workers tasked in the physical care and nurturing of our children, an extensive study on rare diseases must be supported,” Villarica said.
Under the bill, the UP-NIH is to conduct researches on pediatric rare diseases or conditions, including genetic disorders like spinal muscular atrophy and Duchenne muscular dystrophy and birth defects, including Down Syndrome and Fragile X.
The UP-NIH would also conduct studies on one or more multisite clinical trials of therapies for the prevention, diagnosis or treatment of one or more pediatric rare diseases or conditions.
In consultation with the UP-NIH, the Department of Health is to identify the pediatric rare diseases and conditions to be covered by the proposed act.
The DoH would then establish a registry of all pediatric rare diseases and conditions, to be subject to the guidelines issued by the UP-NIH to protect the privacy of patients afflicted with rare diseases.
Within one year from the completion of the research, the UP-NIH would be required to submit its findings to the DoH and the appropriate committees of the Senate and the House of Representatives.
The amount necessary for the initial implementation of the proposed act is to be charged against the existing appropriation of the DoH.
Henceforth, the required budget would be included in the budget of the DoH in the succeeding General Appropriations Act.
– DFF, Medical Observer