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Performing on stage, going to college, and surfing are things Andrew Scott never thought he could do.
But since taking Emicizumab, a cutting-edge preventive treatment for people with severe hemophilia, he can now live what he calls “a relatively normal life.”
“I thought it was too weird to cure it,” said the 20-year-old. “I was in a really defenseless place.”
“Now I can function and generate income.”
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On December 1, up to 15 other New Zealanders with severe hemophilia will also be able to access the drug, which government drug purchasing agency Pharmac says will improve both their quality of life and life expectancy.
Scott was diagnosed with hemophilia A when he was born. It is an inherited blood disorder that increases bleeding and usually affects men.
He spent most of his youth in and out of the hospital with bleeding episodes and even took the NCEA exams at the hospital. You have frequently used a wheelchair.
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Andrew Scott has such severe hemophilia that he never thought he could go to college.
His illness was unpredictable and made it difficult for him to socialize. The plans often included ensuring that a family member was on standby in case something went wrong.
“Even when he wasn’t bleeding, his knees were very weak.”
Scott was able to obtain Emicizumab through Pharmac as a special case in 2018, when his hemophilia increased and he was having two to three bleeds per week.
Hemophiliacs are at risk of permanent damage from joint bleeding or death from severe internal bleeding.
But the drug reduces the frequency of bleeding episodes and hospital visits, improving people’s quality of life, said Pharmac Deputy Medical Director Dr. Pete Murray.
The drug would cost patients $ 600,000 a year without Pharmac funding, he said.
Pharmac already funds drugs for hemophilia, including two long-acting treatments.
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Andrew Scott can now fulfill his dream of performing on stage.
Scott now works part-time in retail while studying for a Bachelor of Arts at the University of Auckland, majoring in English and theater.
He participated in his first theater show in September, something he thought was an “unworkable dream.”
He’s also capable of surfing – what his father taught him as a child, but hadn’t been able to do in several years.
Expect to be a teacher.
