MSOpinion Under-implemented Rare Disease Law We call on our legislators support this important law with enough budget allocation to enable the DOH to address the challenges raised by rare disease stakeholders in the true spirit of Universal Health--
On the other hand, Pharmaceutical industry data estimates that, collectively, there are 400 million people suffering from rare disease and there are 7,000 different rare diseases, which seems not so rare as these figures are even higher than global cancer statistics.
Stratbase ADRi president, Prof. Victor Andres “Dindo” Manhit. in his opening statement pointed out after seven years since the law’s passage, patients and other stakeholder groups are still clamoring for government support in terms of adequate funding and proper implementation of the Integrated Rare Diseases Management Program Strategic Plan.
Pharmaceutical and Healthcare Association of the Philippines Healthcare Policy Director Lourdes Desiree Cembrano raised the need to raise public awareness pointing to low understanding, the limited capacity for detection and management, and the lack of tools for patient navigation and registries. She appealed for an expedited FDA registration pathway and ‘Green lanes’ for Bureau of Customs release.
Dr. Manuel V. Vallesteros, DOH Division Chief of Disease Prevention and Control Bureau-Child, Adolescent and Maternal Health. said they will be developing a life stage-based medium term strategic plan to integrate all existing strategies including the rare disease program. She cited PAPO’s recommendations to have a citizen representative from the patient groups, and representatives from local health workers in the HTA Council. Furthermore, there should be a separate track for HTA process on rare diseases and cancers, and continued education and capacity building to be able to submit topic nomination.
United States Latest News, United States Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
NTA backs inclusion of tobacco in agri smuggling lawMANILA, Philippines — The National Tobacco Administration (NTA) on Saturday expressed support for the inclusion of tobacco in the Anti-Agricultural Smuggling Act of 2016. There are two
Read more »
Pope extends sexual abuse law to include lay leadersPope Francis on Saturday updated rules on dealing with sexual abuse in the Roman Catholic Church, expanding their scope to include lay Catholic leaders and spelling out that both minors and adults can be victims. | Reuters
Read more »
Pope extends sex abuse law to cover lay leadersVATICAN CITY, Holy See -- Pope Francis on Saturday extended a 2019 law to fight sexual abuse in the Church by making lay Catholic leaders responsible for acts committed under their watch in Vatican-approved bodies.
Read more »
UN official urges passage of PH law protecting human rights defendersUnited Nations Special Rapporteur on Human Rights Defenders Mary Lawlor called on the national government to enact into law the bill seeking to protect human rights defenders.
Read more »
Explainer: What you need to know about the SIM card registration lawNow that it is officially a signed measure, how will the SIM registration law impact telecommunication companies and users?
Read more »
7 fratmen facing complaints of homicide, violations of Anti-Hazing Law over Cebu student's deathSeven members of the Tau Gamma Phi fraternity in Cebu City face complaints of homicide and violations of the Anti-Hazing Law over the death of a neophyte during initiation rites last year.
Read more »