UPDATES
Quezon City, Philippines | April 2024
WHD 2024
Philippines
This year's theme, "Equitable Access for All – Recognizing All Bleeding Disorders," was highlighted in the presentations by Hemophilia Advocates-Philippines’ medical advisors, legislators and advocates.
Equitable Access for all
Hemophilia Advocates-Philippines together with Filinvest Malls, Philippine Children’s Medical Center and Philippine General Hospital, celebrated World Hemophilia Day last April 13 at Festival Mall, Alabang, bringing together more than 250 persons with hemophilia, their families and advocates, from across Philippines. Thousands of mall-goers also witnessed the 5-hour event held at the main activity center.
The event, dedicated to raising awareness about hemophilia and other bleeding disorders, aimed to shed light on various aspects of the condition, from its management in the age of the internet to the challenges faced by individuals with hemophilia as they age.
HAP president Andrea Trinidad took the opportunity to appeal to legislators to pass the bill that seeks to institutionalize standards of care for the treatment of persons with bleeding disorders.
“Until now, there is no institutionalized support for the hemophilia community. Treatment for hemophilia is very expensive. We are dependent on humanitarian donations from abroad, which is not sustainable,” Trinidad said.
SESSION 1
Hemophilia in the age of internet
In the first session, Dr. Michelle Rodriguez, a Hematology-Oncology Consultant at the Asian Hospital and the Philippine Children’s Medical Center, delved into the impact of the internet on managing Hemophilia.
With the growing practice of teleconsulting and the rich online resources, individuals with hemophilia now have greater access to information and support. However, challenges such as misinformation and online scams were also highlighted, emphasizing the need for reliable online platforms and patient education.
The Hemophilia Advocates Philippines-Youth Group, together with their families and supporters, proudly come together to show unity with the community. Acknowledging their duty to raise awareness about bleeding disorders, they realize their crucial role as advocates, not just as individuals dealing with the condition.
SESSION 2
AGING BEYOND HEMOPHILIA
Dr. Ma Angelina Mirasol, head of the Adult Hematology Department of the Philippine General Hospital addressed the unique challenges faced by individuals with hemophilia as they age.
As life expectancy increases for those with the condition, managing aging-related health issues alongside hemophilia becomes crucial as complications may affect the quality of life.
Panel Discussion
HAP’s medical advisor Dr. Marilou Abiera; together with Dr. Michelle Rodriguez, Hematology-Oncology Consultant of Asian Hospital and Philippine Children’s Medical Center; Mrs. Boots Magsuci, mother of 3 sons with hemophilia; and, Peter Paul Carreon, a teacher and youth leader with Hemophilia A. Among the topics discussed were how to cope with bullying and the challenge of raising children with rare bleeding disorders, the dilemma still faced by many members to this day. Practical strategies for maintaining quality of life and addressing the evolving healthcare needs of aging individuals with Hemophilia were also discussed by the panelists.
Around 250 patients, families, partners, and advocates gathered at the Filinvest Festival Malls-Alabang to participate in the celebration and awareness campaign. The event was also witnessed by thousands of mall-goers.
HAP BEYOND HEMOPHILIA
Hemophilia Advocates-Philippines President Andrea Trinidad shared some of the patient organization’s accomplishments since it was established. Aside from providing life-saving medicines, totaling over 33.44 million IU (worth over PhP 1.8 billion), HAP has endeavored to empower its members and their families through patient education programs, scholarship opportunities and livelihood assistance.
HAP continues to positively impact the lives of individuals affected by hemophilia today with the future in mind through lobbying, advocacy, education, and community-building initiatives.
LEGISLATIVE UPDATE ON THE BLEEDING DISORDERS STANDARDS OF CARE ACT
The office of CIBAC Representative Brother Eddie Villanueva, author of House Bill 5780 or the Bleeding Disorders Standards of Care Act, provided attendees with updates of the proposed law.
Atty. Jeng Jose, Chief Legislative Staff of Rep. Villanueva, shared the legislator’s commitment to work on the passage of the law.
If enacted, all government regional hospitals will be equipped with globally accepted Hemophilia Treatment Centers where persons with hemophilia and other bleeding disorders will be provided with treatment and care. Attendees were encouraged to actively participate in advocacy efforts to support the passage of the act.
advocacy and partnership
HAP marks the birth of a new collaboration with The University of The Philippines Red Cross Youth (UPRC).
A Memorandum of Agreement has been signed to formalize this partnership, aiming to enhance our advocacy within the student community of one of the largest and most prestigious universities in the Philippines.
A Fun Run called BLOODLINE is scheduled to kick off on June 30th, with HAP as the beneficiary of the funds raised.
Additionally, we furthered the reach of our advocacy by leveraging social media influencers to share information about hemophilia and bleeding disorders.
capacity building
Patients with bleeding disorders attending the event were offered free infusions of blood-clotting factor concentrates. Doctors and nurses volunteered to infuse attendees and provided guidance on self-infusion to HAP members, particularly for those transitioning into adulthood.
IMPACT STORIES
HAP is committed to enhancing the quality of life of individuals with hemophilia and other bleeding disorders beyond medical assistance. By collaborating with other organizations that offer micro-enterprise grants, scholarship and training programs like Save One Life and Virtualahan, HAP members have found livelihood and work opportunities and are able to support themselves from home.
Here are a few remarkable stories.
Jerico Canlas
Virtualahan Scholar
Angelo Cuevas
Virtualahan Scholar
At the age of two, Joe Angelo Cuevas was diagnosed with Hemophilia A. Now 43, he shared the obstacles he faced because of this bleeding disorder. Coping with deformities that led him to rely on crutches, he fought against depression. Seeking a supportive environment, he found HAP's Facebook page, which eventually introduced him to Virtualahan. Reflecting on his experience, Angelo expressed, "The 6-week intensive digital skills training I participated in was transformative. I came to realize that there are numerous opportunities despite my limitations." Angelo has since been earning regular income as a virtual assistant.
Jane Agoncillo
Virtualahan Scholar
Jane Agoncillo, diagnosed with moderate hemophilia A, faced even greater challenges when her two sons were diagnosed with severe hemophilia A. Despite these difficulties, Jane was determined to overcome their financial struggles and applied for a micro-enterprise grant from Save One Life. She opened a sari-sari store that became their family’s main source of income during the pandemic. She also took online skills training provided by Virtualahan and eventually managed to secure a full-time position that further increased their household income. Last year, their family savings enabled them to invest in a condo unit that is now rented out and has become another income stream. Through their persistence and the unwavering support of HAP, Jane's family overcame financial challenges and now enjoys financial freedom and a more comfortable life.
Emily San Juan from the province of Nueva Ecija availed of P5,000 livelihood assistance from their local HAP chapter. She used it as seed money to start a sari-sari store which eventually grew and enabled her to buy a fridge and renovate their home. Aside from becoming the main source of income for their family, the sari-sari store enabled Emily to buy a new cellphone for her son who needed it for his online schooling.
Emily San Juan
HAP NE Livelihood Assistance Recipient
Renowned Australian opera singer Peter Harbinson held a mini-concert pro bono to support the hemophilia community. His exceptional performance brought joy to the attendees and captivated the passerby at the mall.
PERFORMANCES
The celebration also featured song and dance performances by some of HAP Youth’s members. Renowned Australian Opera Singer Peter Harbinson delighted the attendees and mall-goers with his majestic voice, a pro bono performance given as a gift to the hemophilia community.
FUNDRAISING MERCH
The event also allowed HAP to display fundraising advocate merchandise in forms of hoodies, sweatshirts and tote bags in hopes of encouraging people to become advocates by wearing our merchandise.
Taochan Agoncillo, a HAP Youth Member, uplifted the audience by performing Michael Bublé’s “To Love Somebody,” adding a touch of joy to the atmosphere.
5I.VE - A group of students from Pampanga province performed a dance at the event, where one of the members has hemophilia.
Clyde Justin Garcia, a HAP Youth Member, dedicated The Carpenters’ song “I Won’t Last A Day Without You” to parents and guardians who tirelessly care for individuals with hemophilia.
A big shoutout to some of Hemophilia Advocates-Philippines co-founders for organizing World Hemophilia Day 2024 celebration (from left to right): Mayette Charvet, Andrea Trinidad, Ric Felipe, Boots Magsuci and Denise Lagayan.
conclusion
The World Hemophilia Day 20204 celebration at Festival Mall-Alabang served as a beacon of hope and unity for the Hemophilia community in the Philippines. Through insightful discussions in improving quality of life and updates on legislative efforts, attendees gained valuable knowledge and inspiration to continue their journey towards better Hemophilia care and advocacy.
As we reflect on the success of this event, we are reminded of the importance of raising awareness, fostering community support, and advocating for policies that improve the lives of individuals affected by Hemophilia. Together, we can make a difference and pave the way for equitable access to treatment in the future for all.
Hemophilia Advocates-Philippines would like to thank the following for their contribution to the success of this year’s World Hemophilia Day celebration.
PARTNERS: Ms. Laurie Kelley, Save One Life, Project SHARE, Philippine Children’s Medical Center, Philippine General Hospital, Virtualahan and the University of the Philippines Red Cross Youth.
SPONSORS: Filinvest Malls, Festival Mall Alabang (VENUE), Jollibee (FOOD) Inquirer.net, Be An Inquirer, Cebu News Daily Digital, Pop!, Preen.ph and BLCK Marketing Inc. (MEDIA)
DONORS: Mr. Jon Freeman of Stonecrest Financial and MedLink Marketing Inc.
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