Blood brother (2)

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By Liu Zhihua (China Daily) 08:22, August 20, 2013

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Sometimes, when the pain was too intense, Guan would hide in bed and turned on a torch as a distraction.

He felt very lonely, although people were nice. Neighbors would help look after him; children in the community would come to play with him, and public library staff members would bring books to him every month until he turned 18.

In 1999, in a voluntary genetic-scanning program, Guan met and made friends with several people like himself for the first time.

He was so excited that he called them frequently to chat.

Through the conversations, Guan found that they all shared an impression that the society knew little about hemophilia, and even though people wanted to help, they didn't know how to.

Guan was eager to change that. "Hemophiliacs are very miserable," Guan says.

"Ordinary people have no idea how hard life is for us. We are in constant fear for internal bleeding, pain and complications."

Guan decided to organize a support group, and to spread knowledge of hemophilia through the newly emerged Internet.

He spent two days calling hotlines of media, explaining the plight hemophiliacs faced, and begging for news coverage.

Finally, a newspaper in Beijing highlighted the group, and with a large sum of money donated by one enterprise, Guan established a website committed to hemophiliacs.

The website was the first in China to inform ordinary people about hemophilia, and it soon served as a bridge for hemophiliacs nationwide.

People visited the website, wrote their stories in the online forums, shared treatment information, and supported each other.

Many of them called Guan to offer, or to seek, help.

Then Guan realized the biggest problem for hemophiliacs is the costly treatment, which prevented many with the condition from living a better life.

Clotting factors replacement therapy, a treatment that uses clotting factors made in labs to help blood to clot normally and prevent damage to muscle, joints, and organs, was proved safe and efficient, but expensive.

"Most hemophiliacs do not have a job or money, and cannot afford it."

Worse is that China's medical insurance did not cover any hemophilia medicine.

In 2003, Guan studied China's complicated health insurance policy, and organized volunteers to lobby local governments on the issue.

"We petitioned with perseverance, patience and communication skills, not with anger and hostility," Guan says.

Guan also made good use of media exposure to educate the society more about hemophilia, the patients' lives, and their vulnerability.

In 2004, Guangdong's capital Guangzhou became the first city in China to partially cover hemophilia treatment.

In 2006, the city of Tianjin made a similar decision. Today, nearly all of China's first-tier cities have provided such insurance coverage.

Last year, Guan officially registered the group as a nongovernmental organization for the estimated 10,000 hemophiliacs in China, and named it the Hemophilia Home of China.

The organization now has more than 20 branches across China, and works on quite a few projects.

Apart from offering free medicine, financial aid and psychological consulting to patients, his team is urging health authorities to make a health emergency card for hemophilia patients.

"Time is life for hemophilia patients in medical emergence, especially when there is bleeding," Guan says.

With personal information, health condition, and rescue directions, the card will save doctors time deciding how to treat a hemophilia patient in a medical emergency, even when the doctors know little about hemophilia, Guan believes.