October 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, a 21-year old  in the United States was 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 his 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.

Off to the Philippines

It’s Monday in the Philippines and I have landed. I’m visiting for 12 days, to a country that is the single largest recipient of our humanitarian donations of factor. Although we have had contact with the Philippines for years, and have provided aid, I have never visited. This trip will give me an in depth tour of the situation that Filipinos with hemophilia live in. Most are poor, many are crippled. There is not enough factor for everyone, reducing the Filipinos to beggars sometimes. Life can be very hard for them. Several of the teens and young men we have tried to help have died this year.

We provide sponsorship for about 20 children and young men with hemophilia through Save One Life, our sponsorship program. I am hoping to meet most of them, and perhaps enroll some more.

See all the photos of the trip here.

Our guide through this eye-opening trip is Father Don Kill, a Columban priest who is also a shrewd organizer and compassionate humanitarian. We met years ago when Father Don discovered a teen living on the streets who couldn’t walk. In taking the boy to his mission for teens, he discovered the youth had hemophilia. Father Don has since been on a new mission: to find as many boys as possible undiagnosed with hemophilia, and get them the care they need. We are happy to support his efforts when possible.

This trip will take me into clinics in four cities; hemophilia treatment centers; to meetings with the press; meetings with the patients and the patient group, HAPLOS; and best of all, in the very homes of the poor, so we can document their lives and hopefully find help for them when I return to the US. Please check in again in a few days when I hope to have more of our journey posted!

Infuse Less, Play More

I spent this weekend in Newport, Rhode Island to attend the Bayer Multidisciplinary Board meeting. This is a group of representatives from the community (from home care, NHF chapters, manager care, pharma, HTCs, consumers) who get together twice a year and brainstorm, share and offer opinions to the marketing team at Bayer HealthCare. Most manufacturers have these, and even some home care companies. These forums are a great way to learn what is happening in the community in an informal lieu, with intelligent and proactive individuals.

Now some of what we discussed is confidential, but the most exciting news is not confidential. It’s about the clinical studies for the longer lasting factor VIII product. The study is moving into phase II, with 250 patients from many countries participating. Patients are treated with a factor product each week in this study, but the study is double-blinded, which means that neither the physician nor the patient knows whether they are getting regular factor or the longer acting factor. This is the largest clinical study in hemophilia history, I believe. Results are promising: some day I believe we will have a factor product that can be infused once a week, but keep factor levels high the entire week, eliminating the need for three time a week infusions.

Bad News: Tomy McNulty, chief clinical officer of Novologix, a consulting firm, updated us on the payer side of the reimbursement crisis. He affirmed what we announced back in 2004: the system of reimbursement for hemophilia products has changed permanently; home care will continue to consolidate; hemophilia consumers will no longer have complete choice of product, physician or provider. Of the three, provider choice is of the least concern to the payer. In other words, you’ll use payer-designated home care X and like it. We’ve already seen two home care companies go out of business: who next?

Good news: Bayer unveiled for us a new website called “Living Beyond Hemophilia,” for teens and young patients with hemophilia to help them through their transition to adulthood. It’s an excellent site, with a career assessment form, thought provoking questions and answers) about how to prepare for a first job interview, how to prepare for college, and even internships that may be of interest. Having a 21-year-old still in college an struggling to live on his own, this is the kind of site he can go to again and again to get tips on being prepared for what life brings. Check it out http://www.livingbeyondhemophilia.com/

Great Book I Just Read: The Picture of Dorian Gray, by Oscar Wilde
I am ashamed to say I never read anything by Wilde other than his pithy quotations. (His last words on his death bed are rumored to be: “Either these curtains go, or I go.”) This is the only book he ever wrote, and it is masterpiece. Considered one of the last books of the Gothic horror age, it is also a scathing summation of upper crust British society, which in the 1800s is obsessed with appearances–the appearance of being wealthy, beautiful, talented. The book asks, and answers: What does a life of pure hedonism and egoism do to the soul?

Dorian Gray is by all accounts a stunningly handsome man, from a wealthy family, and yet innocent at heart. Noting his handsome face, an artist creates his portrait, a chillingly accurate representation. With constant adoration of it and of Dorian himself from the adult men, Dorian eventually wishes that he always look like his youthful appearance in the portrait, and never age. In a Faustian bargain, the wish is granted. Dorian remains eternally youthful, while the portrait ages, and not just ages, but mirrors the deterioration of his soul as Dorian embraces a life of extreme and callous hedonism. Just like every person with a dark secret, he hides his portrait from all eyes. But this secret eats away at his humanity. Without any physical or visible consequences of his wretched lifestyle, he continues to sample every vice there is, earning the condemnation of his friends and of society, who yet still envy him his eternal beauty! Eventually, his lifestyle impacts others deeply (there’s a murder, suicide, etc), and finally causes him to ponder what he has become. No matter how much he hides his wanton lifestyle and feelings, the portrait reflects greed, suffering, hatred, extreme consumption, lack of purpose, narcissism, and amorality. The portrait holds an iron grip on his soul. Wilde is an interesting writer: while the dialogue appears to ramble at times, and there is a lot of overt melodrama, Wilde is, after all, a playwright. It’s Wilde’s command of the English language that is pure joy: razor sharp, line after line; I found myself ingesting his richly nourishing ideas, strategically placed words and flowing prose. Four stars!

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