Continuation of responsive health services for patients with rare diseases

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OLGA KONONENKO-UNSPLASH

Rare diseases are a group of disorders that individually affect a few patients. These diseases are often considered chronic, progressive, degenerative and life-threatening. Often, they are referred to as “orphan diseases” due to the neglect of the medical community.

Patients living with rare diseases (PLWRD) are constantly faced with several challenges, the most prevalent of which is the requirement for lifelong medical care.

Imagine living in a similar situation. We may not be able to fathom the quality of life of these patients. Consider the lives of their families, plagued with signiIfdo not bear the social and economic burdens as they struggle to make ends meet for their loved ones.

The beginning of this year brought some relief and hope to PLWRDs, their caregivers and families when funding worth 104.9 million pesos was included in the General Appropriation Act of 2022, specIfprimarily for the implementation of the Rare Disease Act or Republic Act 10747.

Adopted in 2016, this law aims to improve access for PLWRDs or patients suspected of having a rare disease to comprehensive medical care. This includes access to available medications and other health technologies that will treat them or help them cope with their condition.

August 15th, the Stratbase ADR Institute, in partnership with the Philippine Society for Orphan Disorders (PSOD) and UHCWatch, hosted a hybrid public discussion (THD) entitled “The State of Rare Disease Law: Continuing Implementation and the Delivery of Responsive Health Services to the Affected Population.”

The THD, which is in fact a continuation of a first discussion held last January, brought together different stakeholders from the academic world, government agencies, civil society/patient organizations and the private sector. He presented milestones and updates, ongoing challenges and a possible way forward that will support the progressive implementation of the law.

Professor Dindo Manhit, President of Stratbase ADR Institute, mentioned in his opening remarks: “Continued support and advocacy is necessary to maintain a responsive health system and adequate resources are essential to continuously meet the needs of the public, including patients living with rare diseases”. diseases.”

Dr. Carmencita Padilla, chancellor of the University of the Philippines in Manila and founding president of the PSOD, said that “this is not a societal commitment. It is a commitment of the world to ensure that it is inclusive, that all patients will be able to benefitIft politics.

According to Dr Razel Nikka Hao, Director IV of the Ministry of Health’s Bureau of Disease Prevention and Control, “a recently Iffive-year strategic plan for the integrated management of [rare disease] illness…is rooted in the five guiding principles of access, integrated comprehensive care, evidence-based policy, inclusive communication and strengthened collaboration.

“A total of 159 rare diseases were included in the initial list that was submitted to the Ministry of Health,” noted Dr. Eva Maria C. Cutiongco-dela Paz, executive director of the UP-National Institutes of Health. “In addition, a checklist helped decide which rare diseases are the most important to include in the list that will be covered by law.”

Dr. Durhane Wong-Reiger of Asia PaciIfc Alliance of Rare Disease Organizations, which joined the discussion virtually from Canada, said “addressing the health of the most vulnerable is necessary for an inclusive society”. PLWRDs are counted among the most vulnerable and marginalized populations.

“Only 5% of rare diseases have an approved orphan drug,” said Daisy Cembrano of the Pharmaceutical and Health Association of the Philippines. She reiterated the pharmaceutical industry’s commitment to advocating for policy reforms based on four principles, namely, 1.) rare diseases as a public health priority, 2.) empowerment of patients and their communities, 3.) promoting continued research and development, and, 4.) ensuring sustainable patient access to diagnosis and care.

Senator Sonny Angara in his message asserted that “funding is a challenge, but I hope the legislature can provide more, as well as the national expenditure program provided by the executive.” He expressed his gratitude to the private sector for their help and encouraged people to partner with the government to help make progress against rare diseases.

The senator also assured the public of continued support and motivated them to continue the dialogue to maintain attention on rare diseases.

Among those who also shared their ideas at the event were Chris Muñoz from the Philippine Alliance of Patient Organizations, Cynthia Magdaraog from PSOD and Dr. Lizette Kristine Lopez from the Council for Health Technology Assessment.

As the person who was responsible for moderating the said event, I would like to extend my sincere thanks to the PLWRDs who personally attended the event. Indeed, you are an inspiration to all patients. I hope that one day we will no longer use the term “orphan disorders” to describe your diseases, because all of them will have a corresponding treatment.

Alvin Manalansan is a health and nutrition researcher at the Stratbase ADR Institute and co-organizer of UHC Watch.

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