Friday, December 10, 2010

Guang Ming Daily: A dying girl's plea to the health minister

A dying girl's plea to the health minister


BUKIT MERTAJAM, Penang: A smart girl scoring 11 A's in SPM, Yang Yanqi passed away last week after a two-year struggle with blood cancer. She penned a letter to health minister Datuk Seri Liow Tiong Lai shortly before she died, expressing her regrets over the deficiency of the country's cord blood and adult stem cell banking system while pleading to the minister to further enhance the country's health deliverance.

The Yang family recently channelled the balance of public donations to a few charitable institutions and schools in a bid to help other needy persons in the society.

Yang, a bright student from Jit Sin High School, had wanted to become a doctor with the hope she could save a lot more people if she happened to recover from her illness. She was earlier offered a PSD scholarship to pursue a medical course in Czech, but was unable to accept it due to her illness.

Two weeks before she died, she wrote a letter to health minister Liow Tiong Lai, expressing her hopes for improved healthcare system in Malaysia. She lamented that the country's cord blood and adult stem cell banking system was dissatisfactory, resulting in difficulty for patients to search for suitable bone marrow.

She said many people missed the best timing for treatment and had to lose their lives due to the absence of compatible bone marrow, many of them young people with supposedly bright future.

Although Yang had missed the opportunities for treatment on a number of occasions, she still believed she would get her chances. Aware of the limited stock of bone marrow locally, she had to source matching bone marrow outside the country.

"On behalf of other patients, I want to express my heartfelt gratitude to the government. If the government would take an additional step ahead, our chances of survival will gain a step further as well."

"Having missed my own chances for treatment, I can understand the despair of not waking up alive tomorrow more than anyone else."

Yang's mother told Guang Ming Daily that she missed her daughter dearly: "I have not met her in my dream after she left, but as her mother, I am really very, very proud of her for her undying fighting spirit and sacrifices she made for other people."

She added that Yanqi had been very strong in facing all the tribulations and had not given up any hope for treatment after learning that she was suffering from blood cancer.

When contacted by Guang Ming Daily the press secretary of health minister Datuk Seri Liow Tiong Lai said due to the heavy workload, the ministry was not sure whether it had received the letter from Yanqi, but will carefully read the letter carried on Guang Ming Daily and respond to it as soon as possible.

"The mechanism for donation and transplantation of bone marrow and other organs has always been around. The system is arranged by the Institute for Medical Research Malaysia and the identities of all donors are kept in strict confidentiality. Patients need to go through the doctors to make arrangements for bone marrow transplant."

Yang's letter to health minister Datuk Seri Liow Tiong Lai:

The most honourable YB Datuk Seri Liow Tiong Lai,
Pardon me for writing this unintended letter to you in Chinese. There are two reasons that have prompted me to pen this letter, with the hope that you will take a little time off your busy schedule to hear the plea of a young girl.

My name is Yang Yanqi, 20, from Simpang Empat, Penang. I am a student from Jit Sin High School. About two and a half years ago (May 2008), I was offered a PSD scholarship to study medicine in Czech Republic. Unfortunately I was later diagnosed to be suffering from acute lymphoblastic leukaemia (ALL), and was undergoing chemotherapy at Penang Hospital for a year.

I suffered a relapse after one year of treatment. The doctors gave me emergency chemotherapy and advised me to go for marrow transplant. There were two requirements though: 1. The condition was at a remission stage; 2. Suitable marrow was available during the remission period and the surgery carried out at once.

We came across a lot of hardships and restrictions on this.

The country's cord blood and adult stem cell banking system is anything but efficient and comprehensive, resulting in great difficulty for patients to look for suitable bone marrow. On the other hand, thanks to the rapid advances in medical technology and equipment, organ transplants have been successfully carried out in the country, benefiting plenty of people. As Malaysians, we are all very proud and thankful.

But when it comes to bone marrow donation and transplantation, many people begin to feel doubtful, and I think this could have something to do with lack of extensive education and government propaganda. When I was searching for matching bone marrow, I expected a lot of people to be willing to donate. Unfortunately I could not get any. I was told that anyone intending to donate his or her marrow would have to go to the IMR headquarters (the only place in Malaysia), and this invariably adds to the difficulty for people looking for compatible bone marrow.

My plea is: the health ministry should pay more attention to this kind of medical facilities which will potentially benefit tens of thousands of people. I have seen for myself many people suffering from blood disorders such as blood cancer, lymphatic cancer, Thalassaemia and septicaemia, as well as others who urgently require bone marrow transplants to survive, lose their lives because of unavailability of suitable bone marrow during the best timing for treatment, many of them bright and brilliant young people with sky-high aspirations and ideals, just because our system does not allow them to match their own marrow. As if that is not enough, the cost of blood tests is too high for ordinary people to afford.

Due to the very limited stock of bone marrow locally, we have to source our marrow outside the country. This is not so much a problem for the Chinese, but the Malays and Indians could encounter a lot of problems searching for the right marrow due to their ethnic backgrounds. This makes it extremely tough for them to look for the right marrow in the world. Perhaps one out of 200,000 there is someone near to him that has the matching marrow, and if the government is willing to offer desperate people like us a more convenient channel by extensively collecting HLA samples across the country and educating the public of such facilities, then we will all be very grateful. So long as the government is willing to take a small step forward, our chances of survival will grow significantly.

I have myself missed the golden timing for marrow transplants, and this is the third time I suffer a relapse. As such, I can understand the despair of not waking up alive tomorrow more than anyone else. I have searched through all information on bone marrow stock worldwide, spent so much time, money, effort and resources but ended up completely disappointed. I will regret it a lot to know that someone standing next to me might just have the perfectly matching marrow for me but unable to go through the test and verification procedures. I hope I can spend my remaining days alive to make a plea for the many fighters still waiting for their chances. Please, let more of us see hope!

I will thank you with all my life if you are willing to take a little time off to read this letter, and would like to seek your kindest pardon if the letter sounds offensive to you in any way. It is my hope that Malaysia will some day be home to some of the world's most developed and sophisticated bone marrow banking systems which will benefit not only Malaysians but many more people all over the world.

As a matter of fact, the extraction of bone marrow is not so much different from blood donation, and anyone can do it while still alive, as we can keep generating new marrow cells and the donors will recover completely within a very short time.

(Translated by DOMINIC LOH/Guang Ming Daily)

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