49th PHILIPPINE ASSOCIATION OF PSYCHOLOGISTS CONVENTION AT WATERFRONT CEBU

The Philippine Association of Psychologists’ 49^th annual convention was held at Waterfront Hotel Cebu. Through HAPLOS-Manila Chairman Mr. Reynaldo Sarmienta, HAPI-C was invited to a presentation on hemophilia in relevance to the field of psychology. The session was entitled “When the Bleeding won’t Stop: The Experience of the World of Hemophilia”

left: HAPI-C volunteers Janssen Alolor and Kristhy Baluran         right: Mary Ann Navasquez and Mrs. Baby Sarmienta

On August 20, 2012, psychology masters students from Ateneo de Manila University presented a study on hemophilia patients and the impact of belonging in a hemophilia organization. The subjects of the study were HAPLOS members from Metro Manila. It proved during the one-time interviews that the subjects were more able to cope up with having hemophilia in the family, particularly those who attend the organization’s activities more often.

Afterwards, Mr. & Mrs. Sarmienta visited the HAPI-C office to have talks about current matters concerning both HAPLOS and HAPI-C, among other matters relevant to hemophilia.

HAPI-C Participates in HAPLOS Hemophilia Day

The Hemophilia Association of the Philippines for Love and Service (HAPLOS-Manila) celebrated Hemophilia Day on April 15, 2012. As planned during the last lobbying meeting in February, representatives from the other hemophilia organizations attended. HAPI-C volunteers Jurich Sungcad and Edwardson Co were sent to Manila for the event. Over 80 HAPLOS members attended.

The event started with a motorcade– a convoy of vehicles, decorated with balloons and tarpaulins that would aware the public of the existence of a Hemophilia Group, passed through some major roads in Manila. This was followed by a stop-over at Philippine General Hospital to confer a certificate of appreciation to a doctor for her unswerving support and advocacy to the group. The motorcade ended at Aqua Sphere located in Malate. 

At Aqua Sphere, a 5-minute slideshow of “HAPLOS through the Years” was presented, made by Jarred Formalejo. HAPLOS Vice-President Mrs. Marrieta Charvet gave a speech while the video was being presented.  It showed a glimpse of how HAPLOS started out and eventually became a foundation, and its purpose of existence and the highlight of the presentation that Hemophiliacs could give and contribute to the betterment of the country.

Afterwards, physiatrist Dr. Bee Giok Tan-Sales gave a lecture on the importance of proper exercise particularly for hemophilia patients. An open forum followed and Edwarsdson Co from HAPI-C inquired about the suitability of yoga for hemophilia patients. Dr. Tan-Sales then affirmed that only some of the yoga positions are suitable for the advanced positions in yoga require rigorous strength and flexibility training, that they may put Hemophiliacs into danger. Later, hematologist Dr. Flerida Hernandez also gave a lecture on hemophilia care.

Dr. Bee Giok Tan-Sales during her lecture on proper exercise for hemophilia patients

 Dr. Flerida Hernandez with Jurich Sungcad (left) and Edwardson Co of HAPI-C

Lunch break followed after the open forum and a friendly chat among the participating people ensued. The venue had a swimming pool, occupied mostly by child patients and their siblings. After lunch, HAPLOS had a special guest performer to sing for the event, the niece of renowned Filipina celebrity Sharon Cuneta. She performed a few numbers and hemophilia day ended afterwards.

(left) with Blood Brothers Aid (BBA) officers ; (right) Paula Cuneta performing for HAPLOS 

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 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.