Hemophilia is a bleeding disorder, passed on from mothers, which affects the blood’s ability to clot. The World Hemophilia Federation estimates that about 10,000 Filipinos have hemophilia, with about 1 million suffering from Von Willebrand disease and other bleeding disorders. As we celebrate the Hemophilia Awareness Month this April, here are five facts on hemophilia gathered from a study entitled "Hemorrhagic diseases in Filipino children” published in The Philippine Journal of Pediatrics.

  1. There are two common types of hemophilia

Hemophilia A is the most common type of hemophilia that occurs in about 1 in 5000 males caused by missing or defective factor VIII. Hemophilia B is a less common type of hemophilia that occurs in about 1 in 25000 male births caused by missing or defective factor IX. Having a defective factor means that the body of person has no means to repair itself when there is damage in the blood vessel or injured tissue that will lead to excessive bleeding and internal hemorrhaging.

  1. Uncontrolled bleeding occurs

A more serious concern for people suffering from hemophilia is spontaneous bleeding; any leak can cause severe bleeding and the body will not heal itself. Bleeding into different organs can be life threatening because when it occurs to a vital organ, it can cause permanent damage beyond repair.

  1. It affects children

Hemophilia B Leyden is an extremely rare form of Hemophilia B that causes young children to bleed excessively throughout childhood but when they reach puberty, very little bleeding occurs afterward.

  1. Women can get affected too

Hemophilia is a recessive x-linked trait which affects approximately 1 in 4500 males, but there are cases in which the mutation can cause the same disease issue to the carrier [mothers].

  1. No cure available yet

Medical scientists haven’t found a cure yet for this condition. The only treatment available for hemophilia is replacement therapy wherein, concentrates of clotting factor VIII (for hemophilia A) and IX (for hemophilia B) are slowly dripped or injected into a vein. This helps in replacing the defective clotting factor of the blood. Out of the 10000 Filipinos that suffer from hemophilia, 3 out of every 4 people lack the resources required for proper treatments.

This research is one of the many studies on hemophilia uploaded in the Health Research and Development Information Network (HERDIN), an online database of PCHRD that enables online publishing, exchanging, and dissemination of quality health information in the Philippines. It is the only health research repository for published researches in the county.

In the spirit of raising awareness on Hemophilia Month, PCHRD invites universities, colleges, laboratories, and medical and research institutions to upload their published and unpublished researches to HERDIN to expand the reach of their study and foster collaboration to find research-based solutions to healthcare problems such as hemophilia.

For more information, you can visit HERDIN’s website at http://www.herdin.ph/

 

Philippine Council for Health Research and Development (PCHRD) Executive Director, Dr. Jaime C. Montoya led the presentation of the accomplishments in health research and development at the 3rd National Research and Development Conference (NRDC) last 20 April 2018 at the Philippine International Convention Center (PICC).

Scientists and researchers of the country came together at the annual conference to present projects on five sector components: (1) basic research, (2) agriculture, aquatic, and natural resources, (3) health, (4) industry, energy, and emerging technology, and (5) disaster risk reduction and climate change adaptation.

Underlining the Council’s support in every stage in health research, Dr. Montoya discussed the Council’s accomplishments of the previous year and the exciting developments to look forward to this 2018.

The health sector had a notable lineup of four speakers starting with Dr. Mario V. Capanzana of the Food and Nutrition Research Institute who talked about the Malnutrition Reduction Program.

Dr. Raul V. Destura of UP Manila and the Philippine Genome Center presented the “Lab-in-a-Mug Project: How Dengue brought us together,” and highlighted the development and the process behind the affordable, accurate, and rapid test kit for accurate detection of dengue infection—Biotek-MTM Dengue aqua kit. Biotek-MTM recently received a gold medal at the Salon International des Inventions de Genève.

The “Axis Knee System: Confidence in Every Step” by Dr. Ilustre I. Guloy of the Orthopaedic International Inc. and Asian Hospital and Medical Center discussed the cost-efficient, simple, and revolutionary knee replacement system that is now commercially available for individuals suffering from severe osteoarthritis.

Dr. Evangeline C. Amor discussed one of the projects under the Tuklas Lunas Program: Discovery and Development of Health Products: Terrestrial Herbals and Drug Candidates, a collaborative research program among institutions across the country. Supplements and medicine for disease such as diabetes, inflammation and pain, hypertension and high cholesterol, gout, and microbial infection could be made available through the discoveries of the projects.

DOST Secretary Fortunato T. de la Peña also recognized the recipients of the first Niche Centers in the Regions for R&D (NICER) Program and Collaborative Research and Development to Leverage Philippine Economy (CRADLE) Program.

Among the grantees are the health researches monitored by the Council, namely: Center for Innovations for Cost Effective Disaster Risk Reduction and Management in Health (DRRM-H) outcomes in NCR and the Philippines by Dr. Carlos Primero Gundran of University of the Philippines Manila (NICER); PCOPEIA: Predictive Chromatography of Organic Plant Extracts with Intelligent Agents by Dr. Dranreb Earl Juanico of Technological Institute of the Philippines and Dr. Isagani Padolina of Pascual Pharma Corp (CRADLE); and M of Hypocholesterolemic Natural Products from Pineapple by Dr. Jonel Saludes of University of San Agustin.

The conference showcased updates on the Harmonized National R&D Agenda (HRNDA 2017-2022). The NRDC is an annual gathering to consult and gather inputs of government agencies, private R&D institutions, the academe, industry, and other concerned agencies for research and development plans and programs.

In Zumarraga town in Samar, an Inter-island Health Referral System - Strengthening through one facility, one health service boat project was adopted to address access barriers to women in need of facility-based deliveries. Dr. Katerina Nono-Abiertas, founder of the One Health Service boat, explains that the set-up enables patients to access health centers by having boats ferry them to maternity units.

Initially, they started with one boat that had to cater 25 barangays in Zumarraga. At present, four low-cost, fuel-efficient, and cost effective service boats were added to the fleet after donations came in from other doctors.  

According to the Asian Development Bank, there are 114 maternal deaths per 100,000 live births in the Philippines in 2017.  Through facility and service improvements and promotion of facility-based deliveries, an increase in facility-based births results in fewer women dying at home and better postpartum care. But for geographically isolated and disadvantaged areas (GIDA), reaching the said facilities prove to be a significant hurdle.

Dr. Nono-Abiertas shared that by training health personnel, engaging the mayor and barangay health workers, developing an ordinance, and creating a hotline to contact the center, they were able to develop a system that not only provided access to GIDAs, but they also managed to change the delivery of health services and enhanced the health workers’ motivation.

The innovation is in the financial model which was developed to create sustainability by upgrading and expanding maternal health facilities to become accredited by PhilHealth, which in turn, will enable the facility to receive reimbursements to fund the operation and maintenance of the sea ambulances. Through this set-up, facility-based deliveries rose from 20% to 90%, created employment for men as boat operators, and improved the health workers’ morale and motivation.

Dr. Nono-Abiertas emphasized in her presentation the need to care for health workers, saying “If we really want people-centered health systems, people should not come first, health workers should come first,” and that by ensuring the people working on the ground are cared for, effective patient care will follow.

Lastly, she added the importance of first-hand field experience and empathizing with the community, inviting other researchers and stakeholders to visit the field and find time to work with the communities.

The One Health Boat project is one of the top five models of social innovations in the country recognized by the World Health Organization (WHO) and the Social Innovation in Health Initiative (SIHI). Dr. Nono-Abiertas was invited to be part of the panel discussion on Research on Social Innovations in Health during PCHRD’s 36th anniversary celebration on March 16 at the Philippine International Convention Center.

 

BIOTEK-MTM Dengue Aqua Kit , a Department of Science and Technology – Philippine Council for Health Research and Development (DOST-PCHRD) assisted technology, was one of the gold awardees during the 46th International Exhibition of Inventions Geneva held on 11-15 April 2018 at Palexpo, Geneva.

Engr. Edgar Garcia, Director of Technology Application and Promotion Institute (DOST-TAPI), and Ambassador Evan Garcia, Representative of the Philippines to UN and Other International Organizations in Geneva, accepted the award for the Filipino Inventions and DOST-assisted technologies - Smart Surface and BIOTEK-M during the event.

BIOTEK-M is an affordable and locally developed rapid test kit for accurate detection of dengue infection within an hour. It is part of the “Lab-in-a-Mug Project” where diagnostic kits are integrated in an isothermal unit as small as a “mug” which functions as a diagnostic device similar to a portable laboratory. The local innovation has high sensitivity, high specificity, robust, and is less expensive than current diagnostic tests in the market.

It was created by experts from the Institute of Molecular Biology and Biotechnology, National Institutes of Health, University of the Philippines Manila led by Dr. Raul Destura. BIOTEK-M was developed through funding from DOST, PCHRD, and its commercialization is supported by TAPI.

The development of the technology generated the first spin-off company from the University of the Philippines since 1908, the Manila Healthtek, Inc. The R&D company on health biotechnology focuses on developing and providing affordable diagnostic technologies for communicable and non-communicable diseases.

BIOTEK-M was one of the thousand inventions on display during the international exhibition. Inventions related to health, medicine, environment and safety had the strongest presence during the show. In fact, the Grand Prix is a medical invention from Hong Kong, a multi-segment lens for glasses designed to defocus short-sighted vision which enables myopia to be controlled.

The exhibition is regarded as the world's most important event exclusively dedicated to inventions and a unique marketplace for industry professionals. This year, the annual exhibition attracted 31,050 visitors, 822 exhibitors, and 1000 innovations from more than 40 countries.

WHO Scientist Dr. Bernadette Ramirez gave emphasis on the importance of participatory research in health during her keynote speech at the Philippine Council for Health Research and Development 36th Anniversary last March 16, 2018 at the Philippine International Convention Center, Roxas Boulevard, Manila.

According to Dr. Ramirez, one of the objectives of participatory research in health studies is capacity building. “We actually have one goal which is capacity building for research. Capacity building means strengthening our ties with individuals and communities through involvement when it comes to health research and innovation.”

Dr. Ramirez defined community involvement as a process of engaging with communities to form a dialogue and/or collaboration at the grass roots level. She explained that in health research, including people in the process means providing what the people actually needs instead of delivering research results and research products aimlessly.

Participatory research sees communities as co-producer of knowledge and action. She added that the benefits of including individuals and communities in the dialogue of health research and innovation does not only encourage them to take action and responsibility for their own health but also fosters change in people.

She stated that the problem in the current health research practices is the need of the communities, “Ang mentality kasi natin ay one-size fits all; we forget that in health research, we are actually dealing with people. We need transformative change. We don’t want to be stuck in one size fits all because people come in different shapes and sizes.”

Dr. Ramirez explained that we should move forward from this practice and start banking on personalized healthcare that is more understanding of what is important to the people and community. The on-going evolution and demand for quality healthcare necessitate a parallel need for professional development with guided principle that is rooted in the needs of the people.

She urges everyone to take part in creating and providing a better healthcare to millions of Filipinos. Dr. Ramirez said, “Health research is multi-trans disciplinary; we need to combine our expertise. We have to understand our problems together. Healthcare is a complex problem and a complex problem requires a complete set of system to address that problem.”

In the end, she reiterated and reminded everyone that research on social innovation in health accompanied by community involvement is key in developing better healthcare system and programs.