HAPI - C: April 2012

On April 25, 2012, Ms. Ana Mae Villamor and Ms. Rose Garces represented HAPI-C during the Philippine Alliance of Patients' Organizations (PAPO) general assembly in Pasay city, Manila. Also present were Ms. Boots Magsusi and Mrs. Mayette Charvet of HAPLOS-Manila. During the forum, Ms. Villamor raised a question to the PAPO board on what steps the hemophilia organizations should make in order for the term hemophilia to be recognized and constituted in the Philippine law as an inherent bleeding disorder. The goal is to have diagnosed patients be recognized as part of the People with Disabilities (PwD) community in order to avail of their benefits as to compensate for lack of government subsidy for hemophilia treatment and care.

National Hemophilia Day is practiced by many countries around the world on April 17, 2012. HAPI-C moved the celebration on a Sunday, on April 22, 2012.

The celebration started at 8:00AM with a Motorcade wherein HAPI-C, the University of Cebu (UC) Drum & Bugle Core, the Perpetual Succour Hospital Sisters and laboratory staff, and other supporters circling major routes in Cebu city for hemophilia awareness.

HAPI-C volunteers distributed our “What Is Hemophilia” pamphlets to bystanders in the streets and passengers in public vehicles. Members and supporters alike wore red t-shirts in unison to symbolize the presence of our local hemophilia community.

HAPI-C had a special guest for this year’s celebration, Prof. Cresencio Doma, a sociologist from the University of Sto. Tomas (UST) in Manila. (Prof. Doma has previously worked with HAPI-C in 2009 for a Psycho-Social Workshop for young Hemophilia patients, carriers, and parents). This year’s Hemophilia Day was also a psycho-social workshop, a different focus subject in the morning and another in the afternoon.

HAPI-C officer Edwardson Co who had proposed and conceptualized the event was confined at the hospital for dengue at the time being. Fellow HAPI-C volunteers Ana Mae Villamor and Reymart Balderas stood as last-minute substitute speakers.

The first part of the Psycho-Social workshop focused on Peer Pressure on Circumcision among Hemophilia Patients. This is a sensitive topic for hemophilia patients as here in the Philippines it is culturally mandatory for boys to undergo circumcision. This proves to be a dilemma for hemophilia patients. The excessive bleeding after undergoing the procedure requires a lot of money for the hospitalization and also the factor concentrate required. For Filipino males, not having undergone circumcision also puts one under social stigma, particularly for patients with hemophilia and other bleeding disorders.

Opening the workshop, Prof. Doma discussed about the statistics of circumcision rates in the Philippines and other countries around the world, about the cultural and religion-based origins of circumcision, and also about the myths or misconceptions that “strengthen” the importance of circumcision in Filipino folk beliefs. Halfway through the presentation, HAPI-C through proxy speaker Ana Mae Villamor addressed this issue by having a lecture on the medical aspects and budget concerns pertaining to circumcision in hemophilia. HAPI-C volunteer Reymart Balderas also presented a modified calculator for factor computation required for each patient, depending on weight and hemophilia severity.

Afterwards, adult hemophilia patients both intact and circumcised alike shared their points of view regarding this sensitive subject matter. For those circumcised speakers, they shared to the audience how they consumed over 100 bags of cryo-precipitate spent and the weeks they were hospitalized. For the uncircumcised speakers, they shared that the myths are untrue, that they can still get married and have children - though admittedly they do not talk about it to most people from our Filipino culture.

An open forum then followed, with mixed reactions from parents and patients alike. Expectedly some were still not open to the idea of not having their sons undergo the procedure. It was also announced that since it is an elective procedure, the patient and the parents have the right to do so – However, also since it is an elective procedure, patients who suffer inflammation and excessive bleeding after the procedure will also not be granted any help from HAPI-C or any other hemophilia organization.

Lunch break followed.

In the afternoon, the subject focus was for the Non-Hemophiliac Family Members. Prof. Doma opened with focus on the mothers, whom have always been blamed for passing on the hemophilia gene. He reminded the audience how much greater the sacrifice the mother makes in raising children, particularly children with special needs like hemophilia.

To dispel this misconception of the mother as the only carrier of the gene, proxy co-speaker Ana Mae Villamor discussed on the genetics of hemophilia – It stated that even hemophilia patients themselves pass on the gene to their daughters as well; and that hemophilia may also be sporadic, or a result of genetic mutation in the unborn child.

Part of the subject focus was also the Non-Hemophiliac Siblings, who may frequently neglected by the parents and family by always prioritizing the hemophiliac brother. A good number of members shared their family’s struggles in dealing with hemophilia, not only fathers and mothers but hemophilia siblings and their sisters as well.

A lot of tears shed from the speakers and audience members later, the psycho-social workshop proved to be a success. Some families resolved their issues after publicly declaring their sentiments; a lot of the audience members related to them and shared their own stories and advice as well. So far, this has been the most successful psycho-social workshop - This year we had the most participation from the audience of over 200 members who attended.