PHILIPPINE ALLIANCE OF PATIENTS' ORGANIZATIONS GENERAL ASSEMBLY 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.

Lobbying Conference Meeting in Manila with HAPLOS and BBA

HAPI-C attended a Conference Meeting together with HAPLOS-Manila and Blood Brothers Aid (BBA).
The meeting was about our concerns in (apparent lack of) hemophilia care in Philippine setting – and to counter that, suggested government and non-government agencies to work with in order to improve hemophilia health care.

   

During the meeting it was also discussed that HAPLOS-Manila is going to have a Youth Summer Camp, and that representatives from the other hemophilia groups are to attend. This proposed event also serves as a Leadership Training activity among the hemophilia youth. Lastly, it was agreed upon that the next Lobbying Conference Meeting is to be in Cebu on May 25 and 26, 2012.

HAPI-C at the 1st Cebu NGO Summit

At the Eduardo Aboitiz Development Studies Center on December 06, 2011, HAPI-C attended the 1st ever general assembly of all the NGO (non-government organizations) from the Cebu province. With Kaabag Sa Subgu as event organizer/coordinator, over 150 representatives from their various foundations, associations, centers, and movements attended.

The first part of the summit was a speech by Sec. Jesse Robredo from the Dept. of Interior and Local Government. As the former mayor of Naga city, he gave a speech about the growth and development a province by urbanization. He also cited the importance of the NGOs' voices in these changes.

Later, Prof. Felisa Etimadi of UP Cebu also gave a speech about her many experiences in working with various NGO's in Cebu. Part of the speech was a lecture on how to work more efficiency as NGOs.

 

 

After the lunch break the NGO's were divided into 3 conference rooms according to each organization's main concerns and interests; Urban and Rural Livability, Sustainable Development, and Human Development.
For the Human Development Interests groups, Edwardson Co from HAPI-C was a speaker for the program and presented about hemophilia in the Philippines and also about HAPI-C.

 

 

An open forum followed.

 

 

HAPI-C was able to establish connections with DYSS A.M. Radio and had offered for guesting in their program on December 11, 2011. An affiliate program also offered local TV broadcasting for hemophilia awareness, scheduled in January 2012.

All the NGOs later returned to the main discussion hall to culminate the entire day's activity.

 

 

HAPI-C attends International Alliance of Patient Organizations (IAPO) convention in Manila

October 13, 2011, our president Mary Ann Navasquez and full-time volunteer/board member Edwardson Co represented HAPI-C for the IAPO convention in Manila.

During the open forum of the convention my son asked the secretary of the Philippine Department of Health. In his question Edwardson asked, "With all these chronic disorders, is there any hope that we hemophilia patients will be noticed? With us being so little, we feel like we are always the last priority." He also gave a brief speech about hemophilia cases here in the Philippines, like children as early as 7 years old already have joint deformities due to untreated chronic bleeding; that most specially in government hospitals doctors do not know how to diagnose and administer proper treatment for hemophilia patients; and that hemophilia patients have poor dental health because most dentists are afraid to treat us even for checkups.

According to the DOH Executive Secretary, there was a "funding for rare disorders" however the program ceased to exist. As a follow-up Edwardson replied that we hemophilia organizations at the moment are more concerned about educating the doctors and health workers here in the Philippines about our disorder. That we may be "rare" but our disorder has chronic symptoms, and we do need treatment from time to time. And there have been numerous time that doctors in hospitals do not know how to treat hemophilia patients properly. Indigenous patients in particular are forced to transfer to expensive private hospitals as many government hospitals and health centers refuse to treat hemophilia patients with bleeding episodes.

 

Mrs. Andrea Echavez also inquired about the safety of locally produced blood products available, in the case of patients with bleeding disorders as there have been hemophilia patients (among others) who have contacted Hepatitis C and other blood-borne viruses due to lack of proper screening in the 1990's and beforehand.

Also present during the event were Mrs. Malou Formalejo (president) and Mr. Rey Sarmienta (chairman) of HAPLOS, a counterpart hemophilia organization in Metro Manila. HAPI-C also got acquainted with Dr. Durhane Wong-Regner, former director of WFH and now working as one of the board members in IAPO.

Other groups present were from different organizations concerning chronic disorders both from the Philippines and others in Southeast Asia.

AWARENESS CAMPAIGN DURING RAMOS CITY DISTRICT DANCE FESTIVAL

During a dance festival at Ramos city district in Cebu city, HAPI-C had a short video presentation on hemophilia. We played this because there were local level politicians present during the event, one of them a congressman. We also gave away our "What Is Hemophilia" pamphlets to the audience.
 After the event we have approached the congressman, however he responded to us that he cannot help us as an organization with medical needs. As a congressman, he can only help individual indigent patients in terms of financial assistance - most specially for hospitalizations and burials. Nonetheless, this was good exposure for hemophilia awareness to the general public, with over 200 people as audience during the event.

MEETING WITH THE CEBU INT'L. LIONS' CLUB

As a local lobbying effort, HAPI-C has a meeting with the Cebu Int'l. Lions Club during their weekly gathering at Baseline restaurant on July 12, 2011. The board members of their organization are some of the doctors and some ofthe senior members of Cebu society's elite.

We had a discussion about what hemophilia is, the statistics of hemophilia in the Philippines, and also about the hemophilia community in Cebu. A 3-minute video presentation on HAPI-C's  activities was also played. During the discussion's end, we approached them for support in our future endeavors. Dr. Rene Obra, the current president of the Cebu Int'l. Lions Club assured that we can count on them when needed.