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April 17 was World Hemophilia Day, and the month of April has been declared by Presidential Proclamation 1478 series 2008, as National Hemophilia Awareness Month.

But not too many people know what hemophilia is. I didn’t know either.

Hemophilia, we were told at last week’s Bulong Pulungan sa Sofitel, is a rare, in-born, life-long congenital bleeding disorder due to a defective or deficient clotting factor, which prevents an affected individual from forming a strong and stable blood clot. People with hemophilia do not bleed any faster than normal, but they can bleed for a longer time. By some chromosomal quirk, males are affected, and mothers – but don’t blame them – are the carriers. Not all children are hemophilic, but again, some are chosen by natural occurrence.

Its most common symptoms are bleeding inside joints and muscles, bleeding in the nose and digestive tract, and prolonged bleeding after surgical procedures such as tooth extraction or circumcision. Many times, bleeding can happen spontaneously, without previous trauma or injury. Lack of proper care and treatment can lead to deformities and in severe cases, death.

It is estimated that 1 in 10,000 people may be born with hemophilia, and in the Philippines, only about 1,500 have been identified The actual prevalence rate of the disorder in the Philippines is therefore only 1 in about 68,000 persons.

In countries which are more advanced economically and in their hemophilia care, the actual number of affected persons is still very small compared to their population: in the US, only 1 in 18,000, and Malaysia, has only 1 in 23,000. The world average is only 1 in 36,000.

There is no cure for hemophilia, but there are treatment procedures to ease the pain and help the afflicted. The Philippine government is not so keen on giving financial support to hemophilia programs. Dr. Flerida Hernandez of Hemophilia Philippines (HAPLOS Community) Foundation, along with the Philippine Society of Hematology and Blood Transfusion and the Philippine Society of Pediatric Hematology have submitted to PhilHealth since March 2017 a proposal for a Hemophilia Treatment Package, but no word from PhilHealth has been received. Dr. Hernandez’s three brothers have hemophilia.

“The life-long and severe complications of hemophilia are very much preventable with proper medical attention. However, most of our patients continue to suffer as they are unable to afford the exorbitant cost of treatment such as factor concentrates, cryopreciate, fresh frozen plasma, cryosuerate, and other necessary therapeutic,” said Maria Lourdes Formalejo, president of HAPLOS, which was organized 25 years ago. Her own son has hemophilia. HAPLOS recently launched a National Hemophilia Awareness and Advocacy Program (HANAP).

HAPLOS and its chapters have survived through donations from private organizations and individuals, and mostly the World Federation of Hemophilia. 

Patients live seemingly normal lives except when the need for treatment comes. A living model of hemophilic survivor, John Francis Sarmenta, 25, looked good and healthy, has finished college, and is now working for a master’s degree. His father, Raynaldo R. Sarmenta, HAPLOS chairman, looked on proudly as his son talked about living with the lifelong affliction. 

Want to help HAPLOS? Call +632 2398518, CP 09178-HAPLOS (0917-842 7567 or 0933-8671419. Its website: www.hemophiliaphilippines.org and email: [email protected]

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Ursula Gertrud von der Leyen, the first woman Minister of Defense of Germany since 2013, was in Naic, Cavite recently to attend the 29th anniversary of Christian Mission Service Philippines. Then she was guest preacher at the 85th founding anniversary of UCCP-Cosmopolitan Church in Manila.

A physician by profession, Dr. Leyen previously served as Federal Minister of Labour and Social Affairs and Federal Minister of Senior Citizens, Women and Youth. She is the only minister who has served continuously in Angela Merkel’s  Cabinet since she took office in 2005.

In 2013, she concluded an agreement with the Philippine government that is aimed at helping Filipino health care professionals to gain employment in Germany on the same terms and conditions as their German counterparts.

This column shares excerpts from her message at UCCP-Cosmopolitan Church.

“I would like to base my sermon on the following scripture reading: Mark 10:13–16. ‘And they were bringing children to him that he might touch them, and the disciples rebuked them. But when Jesus saw it, he was indignant and said to them, ‘Let the children come to me; do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.’ And he took them in his arms and blessed them, laying his hands on them.’

“Before Jesus turns to the children, he reproaches his disciples for wanting to keep the children from him. For Jesus, this is about the children, but it is also about more than that. It is about social order as he envisions it. And it is about the very real consequences of his standing up for the children, the small ones, the powerless ones. His indignation is more than compassion for the children, more than affection for the ‘little sweethearts’. Jesus demands that the children be permitted to come to him and not be hindered.

“We are living in an ever changing world. War, climate change, terrorism, poverty, globalization are challenging us. We must find answers to this. I think the answer lies in doing what suits the children best. That is defending democratic principles – peace, justice, rule of law, freedom and universal human rights. I know throughout human history, there have been those who think that some are superior by virtue of race or faith or ethnicity. This is not so in the eyes of God. He looks at us as His children. Each single one is in His view precious, beloved and unique. Therefore through all our history, the flame of human rights and freedom never died, that all men are created equal and endowed by our Lord with certain universal rights. 

“It is the children who brought us together here today at Cosmopolitan Church. It is the children who have given us this present of friendship and who have built the bridge between my family and the Children’s Village in Naic. It is the children who have given us the privilege to meet Pastor Keith Quebral and Ate Dinah Macaranas. When I visited the CMSP Children’s Village in Naic for the first time in 2013, it warmed my heart. I was deeply moved by the confidence and joy with which the girls and boys in this Village face the future despite their deprivation, and by how much this was reflected in their families in the Village. I could feel the Christian’s confidence that we are all safe in His hands. For many months, my daughters Donata and Gracia lived and worked in the Children’s Village. And every day they could feel this sense of security that the children have there, and that the children always know: Someone has faith in me, someone supports me –no matter what will happen; the Christian community will protect you, your faith will carry you.

“This was and still is the great merit of the Village community in Naic, it is the Bread of Life given to the children – joyful affection, mindfulness, direction, and – education! This is precisely what makes this work so valuable and so successful. And therefore I am here today as your sister in faith but also as a staunch supporter and sincere friend of the CMSP.”

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Email: [email protected]