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Hemopheliacs call on state to resume aid.

Byline: Dalila Mahdawi

Summary: At 20 years old, Nadim Hamdan should be in the prime of life, but he is instead forced to spend most days tiptoeing carefully around at home. Hamdan is a hemophiliac and has to avoid activities that most take for granted - even a game of soccer or an enthusiastic slap on the back could prove life-threatening.

BEIRUT: At 20 years old, Nadim Hamdan should be in the prime of life, but he is instead forced to spend most days tiptoeing carefully around at home. Hamdan is a hemophiliac and has to avoid activities that most take for granted - even a game of soccer or an enthusiastic slap on the back could prove life-threatening.

As for going to university, that has become a rare and cherished treat. But with affordable and consistent treatment, Hamdan could enjoy a more fulfilling life.

That message was reiterated on Thursday as the Lebanese Association for Hemophilia (LAH) marked the 20th anniversary of World Hemophilia Day with an awareness raising conference. The day, observed annually on April 17, was created by The World Federation of Hemophilia, which works to improve the lives of people with hemophilia and related bleeding disorders.

"On World Hemophilia Day we want to spread the message that comprehensive care is necessary for people with bleeding disorders in order for them to live healthy and productive lives," LAH President Solange Sakr said at the conference at Beirut's Movenpick Hotel.

Hemophilia is a rare hereditary bleeding disorder mostly found in men whose bodies cannot produce protein needed for blood clotting, causing them to bleed longer than most. Hemophiliacs are particularly vulnerable to internal bleeding occurring in the joints or muscles.

But patients can live normal lives if they receive medication and treatment early enough, Sakr said. "Unfortunately, even access to drug therapy, a vital and basic need for hemophilia patients, is now threatened by governmental budget cuts and we have recently lost patients due to lack of treatment," she added, calling for a moment of silence to honor four young men who died this year.

The association is the only one of its kind in the country, and is unable to provide sufficient treatment to Lebanon's hemophiliac community of around 500 people.

Nor should it be expected to. Until July 2008, hemophiliacs received medicine from the Public Health Ministry. No official statement has been made on why the funds have dried up, placing financial strain on families of hemophiliacs.

Around half of Lebanon's hemophiliac or other bleeding disorder patients are under the age of 18 and "yet more than 60 percent already suffer from severe motor disability due to lack of disease education and limited access to treatment," LAH said in a press release.

The anguish suffered by hemophiliacs was plain to see at the conference, where a number of mothers stood up to vent their anger at the ministry's general manager, Dr. Walid Ammar. One mother who couldn't afford treatment for her young son burst into tears and ordered him to stand up before Ammar.

Ammar seemed not to notice, however, as he was engaged in conversation with the doctor sitting next to him. "We are with you, not against you," he insisted after refocusing his attention, though he didn't explain the halt in funding.

His evasiveness was not lost on the audience. "You saw how he showed no sense of responsibility, he just ran out quickly" after speaking, said Nadim's brother, Hassan.

"I want to know who is assuming responsibility for the deaths of hemophiliacs," said Fatima Shamdeen, the mother of a young patient. "If the government cannot take on responsibility, it should resign."

When asked how she paid for the medicine, which costs $500 a dose, Shamdeen shook her head sadly. "We depend on the association [LAH] sometimes or friends who can lend us money. Sometimes you just don't do anything and you just stay at home," she said. "If you buy it today, you can't afford to buy it tomorrow."

But sporadic treatment simply isn't an option for hemophiliacs. "The message is the more and the earlier you treat a patient, the fewer problems they will have later in life," pediatric hematologist Dr. Claudia Khiyat told The Daily Star. "If you don't start treating hemophiliac from a young age, you will end up in a wheelchair like him," she said, pointing to a young man suffering from hemophilia so severely that even the smallest movement triggers bleeding.

Nadim recently suffered a thigh injury but hasn't taken blood clotting medicine for seven months. "He's suffering a lot," said Hassan. "Let us feel as though there is a government who cares about it," he implored. I wish there was a minister with a hemophiliac son so he would know what we are going through."

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Publication:The Daily Star (Beirut, Lebanon)
Date:Apr 17, 2009
Words:812
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