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Tuesday, October 14, 2008

Help sought for 1M Filipino hemophiliacs

This is a story that ran in the Philippine Daily Inquirer on October 13, 2008.

Help sought for 1M Filipino hemophiliacs
By Dona Pazzibugan
Philippine Daily Inquirer
First Posted 23:01:00 10/13/2008

MANILA, Philippines—Seven years ago at age 20, Angelo Cuevas altogether stopped going to school and shut himself from life in their house in Pateros.

He suffers from hemophilia, a rare but debilitating bleeding disorder usually among men that causes painful internal bleeding, severe joint damage, disability and even death when not treated.

Cuevas was diagnosed when he was two, "and since then life has been hard, financially hard."

Treatment consists of intravenous infusions of a medicine called antihemophilic clotting factor, to stop blood-clotting. It is also very expensive.

In Cuevas' case, the cost runs up to P15,000 a day since he needed to be infused with at least six vials of the life-saving factor each day. A vial costs P2,500 each.

Just a few years younger than Cuevas, 21-year old Tommy Kelley in the United States has been diagnosed with hemophilia when he was a baby.

"If you look at my son today, you'll never know anything was wrong with him. He has a completely normal life because he has access to medicine," said Tommy's mother Laureen Kelley.

The difference in their quality of life is the availability and affordability of the antihemophilic clotting factor, one of the most expensive medicines in the world, according to Kelley.

Kelley founded Project SHARE eight years ago after she saw the condition of hemophilia victims in poor countries which she said "shocked" her.

"I can't imagine a country where the drug is not available. In the US we have so much medicine," said Kelley, who is visiting the country.

Cuevas is among the nearly one million Filipinos who suffer from bleeding disorders. Most suffer and die without knowing that their condition is treatable.

Project SHARE estimates that 6,000 to 8,000 Filipinos suffer from hemophilia, but only 1,000 have been diagnosed, leaving most to suffer in unbearable pain.

The more common bleeding disorder known as von Willebrand's disease (after a Finnish scientist who did the research on the missing blood protein) afflicts an estimated 900,000 Filipinos, both men and women.

But only 28 have been diagnosed since the country's hospitals do not have the diagnostic capability.

Andrea Trinidad Echavez's 10-year-old daughter Star has been suffering from profuse nose bleeding since she was three weeks old. She was finally diagnosed with von Willebrand disease when she was seven.

The medicines for hemophilia and von Willebrand disease, which have to be immediately injected when bleeding starts, are not locally available.

Through the Internet, Cuevas was able to contact Project SHARE, which distributes the medicine to developing countries free of charge.

"In the US we were throwing it away if the product expires, if the company changed their product, if they got their product in the wrong size. So we began to capture all the products that nobody wanted," Kelley said.

Project SHARE's country coordinator, Fr. Don Killy, who is based in Ozamiz City, helped defray the cost for Cuevas' right hip operation, which was done in Cebu. The operation cost about P500,000.

When he returned home, Cuevas introduced Killy to other hemophilia patients he earlier met.

Rey Sarmenta, father to 18-year old John Francis who is a hemophiliac, said donations reaching the country through Project SHARE and the World Federation of Hemophilia, have been dwindling because there were less "surplus" medicines available.

"We are finding it hard to get donations," said Sarmenta, former president of the Hemophiliac Association of the Philippines for Love and Service (Haplos). "There is less excess medicine available because richer nations are buying for their people," he said.

He said countries used to buy the medicines at need, but lately they have been stocking up. There are an estimated 400,000 hemophilia cases worldwide, of which 75 per cent are in developing countries.

The US is home to about four per cent of diagnosed hemophiliac cases, but they consume about 30 per cent of medicines produced.

Eduardo Lacanlale, 55, a hemophiliac who now heads Haplos said they have long been lobbying before Congress to provide funds to make antihemophiliac clotting factor and other medicine for von Willebrand disease available.

"Hopefully the government can help us," he said.

Kelley said they have been prioritizing giving medicines to the most urgent cases.

"Our goal in coming to the Philippines is really to try to find better ways to give them medicines. But the long-term goal is to have the ability to produce your own medicines. If Honduras which is a very poor country in the western hemisphere can buy factor, the Philippines can buy factor. It's just a matter of lobbying," she said.

2 comments :

brendon said...

Hi Folks, glad to have found your article. I have two relatives who live in Guyana (South America) who are hemophiliacs (only know cases in the country) and hve no access whatso ever to medicine. I try to help from here in the United States, but it is super expensive. Is there any help out there that I can turn to.
Brendon (laviebelle@hotmail.com)

Laurie Kelley said...

Hi Brendan, we actually already know your cousins and have helped them in the past. We will reach to them again. Thanks! Laurie

 
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