Leukaemia drug for boy costs $150,000

Joel with his doctor, Associate Professor Allen Yeoh from the National University Cancer Institute.
Joel with his doctor, Associate Professor Allen Yeoh from the National University Cancer Institute.PHOTO: AZMI ATHNI

School organises fund-raiser for student who suffers relapse for 4th time

When Ms Marianne Lam heard in April that her son Joel's leukaemia had relapsed for a fourth time despite five years of non-stop chemotherapy, she was worried he might give up.

However, her son's outlook was more positive. He even burst out laughing. "He said, 'Mum, why... I have so many people that love me."

Among them are his schoolmates and teachers, who rallied around him to keep his spirits up - and even helped to raise money for his treatment.

Joel Lim, 18, was diagnosed with leukaemia at age seven and has spent most of his life undergoing treatment, including chemotherapy, radiotherapy and taking daily drug cocktails.

His poor health meant he almost missed sitting his Primary School Leaving Examination (PSLE) in 2011. At the time, his parents had lost their jobs and spent $80,000 on medical bills.

COUNTING HIS BLESSINGS

Of course I wish I could be well again. But I will take things slowly. I have a home, a school, a family. Many others don't. I should just be glad with what I have.

JOEL LIM, whose positive attitude has inspired others, including his principal.

He clung to hopes of passing his PSLE and continued his tuition. After a bone marrow transplant, Joel slowly recovered and was able to get into Anglo-Chinese School (Barker).

His condition remained relatively stable until he recently contracted shingles. It disrupted his chemotherapy and doctors found that leukaemia had returned in his brain.

Yet Ms Lam, 52, who runs a handbag and shoe cleaning shop, said Joel does not complain and tells his family not to worry.

"I don't dwell on my condition... I'm just happy I can go to school and have friends," said Joel.

His positive spirit has inspired others, including his school principal, Mr Peter Tan. He wrote to the parents of students, appealing for help in defraying Joel's treatment costs.

Mr Tan, who has known Joel since Primary 1, said: "I knew (the family) would not ask for help. Hearing how costly (treatment) is, I sought their permission to share (the news) with the school."

  • Pill is one of the costliest cancer drugs

  • The drug Blinatumomab, or Blincyto as it is more widely known, may destroy cancer cells but it also soaks up a patient's finances.

    When it was released in 2014, Blincyto cost US$178,000 (S$246,000) for a standard course of treatment.

    It is used to treat a rare form of acute lymphoblastic leukaemia, a cancer causing the bone marrow to make too many white blood cells. It is meant for patients whose cancer returned or did not respond after previous treatment. In tests, 32 per cent of patients treated with it saw their symptoms go into total remission for over six months.

    Developed by Amgen, Blincyto is among the more expensive cancer treatments.

    Keytruda, a skin cancer drug, costs about US$150,000 a year.

    Some claim that US companies are taking advantage of laws there that force insurers to include expensive drugs in their policies.

    Amgen said the price reflected the "significant... value of the product to patients and the healthcare system".

One course of a new drug called Blinatumomab - said to be the most appropriate for Joel's condition - costs $150,000.

Ms Lam did not think of the cost initially, only whether the drug would help her son. Mr Tan's appeal was shared online and the family has received cheques, prayers and encouragement. "It's not about the amount donated but the heart behind it - even an SMS makes a big difference," she said.

Schoolmates have been helpful, waiting for Joel to reach school so that they can carry his bag, and giving him piggyback rides when he is tired. The students are organising a fund-raiser, called "Turn Things Around For Joel", which will include food and drink sales and a charity car wash on May 27 and 29.

"I didn't know so many people were willing to support me," said Joel. "I feel so loved."

His mother agreed: "We didn't ask for all this. We're very overwhelmed, still trying to take it in."

Described as diligent and considerate, Joel tries to lead a normal life. "I'm happy I can even go to school and have friends," he said.

He plays table tennis and even participated in his school's recent cross-country run in a wheelchair.

But since his relapse in April, he has been forced to stay at home. His goals are to finish his O levels and study in a polytechnic.

"I will take things slowly," he said. "I have a home, a school, a family. Many others don't. I should just be glad with what I have."

Ms Lam's hopes for him are simple: "Grow up. Pay back what you have received, for a little kindness goes a long way."

A version of this article appeared in the print edition of The Sunday Times on May 22, 2016, with the headline 'Leukaemia drug for boy costs $150,000'. Print Edition | Subscribe