Have you ever give up hope? Have you ever give fighting for yourself?
I would like to share you a story that may encourage you to keep fighting for yourself and others.
A couple of months ago, Danielle asked for information of the second-line drug options for non Thai CML in Thailand. She said a Cambodia CML patient has resistant to the first line treatment need the second line drug. All I do is put all the information that I know in writing and get more information from the physician and sent back to Danielle. All the possible way for a non Thai patient to access to the treatment in Thailand. That was look like a normal day for me.
A week later, I have got a phone call in the same time that I have received the e-mail that Ka was in Thailand. She travel from Phnom Phen by a small van on the road trip, and it took one whole day to get to Bangkok. Ka told me that she went to another hospital, but doctor cannot apply her to the program since she is not Thai. I told her to come to see Prof. Saengsuree who have a trail on the second line drug and the program was allow for non-Thai citizen. She came back a week later and I met her up at the clinic. After a long waiting and she was in the last on the queue, the Prof told her that trial was just full. Ka was so terrify to hear that. The dream to get the medicine was so near but has been gone. Although the chance to get the medicine was so unclear, The Prof. would like Ka to take all the lab tests, so she could tell Ka medical situation. I was impressed how Ka answering to the Prof. questions that she knew every medicine she takes and what lab test she had taken. She know everything as well as her treating physician.
The Prof. made many phone calls at least to 2 drug companies asked if any program Ka can enter, she has not receive the happy answers. She asked me if any thing she can do to help patient she will do it. I suggested that she can write to MAX Global and then we will try again. Danielle received the e-mail on that night and she help to talk with Novartis. It was look like a zero percent that I would never ever heard anything back. But I was wrong, 2 weeks later the local drug company called me said that they were contacted by their Global to approve Ka case by exceptional – as a Thai. I was jumping and shouting “Yeah, yeah, yeah!!!”, imagine that Ka should feel the same.
The following week, Ka came across the boder fourth trip to receive the medicine, Ka’s mother and brother came along. The moment when the Prof. handle Ka the prescription, everyone in the room were in tear. Ka’s mother came after and was doing her best to express her appreciation to the Prof. in English.
By that time, that MaxSmiles was having a regular monthly, so she decided to extent her stay for the meeting. On the the day, after lunch in the sharing session, Ka was invited to share experience. Ka told us of what are things she have been through from the fisrt diagnosis with CML many years ago. Hearing from her doctor that she has been resistant to the medicine was a bad news to her and the whole family. Do everything and going every where, that what Ka and family were doing. One of her brother need to go to Korea to work in a construction site to get more money for her to go to clinic, the oldest brother and sister contribute most of their income to Ka treatment in Thailand.
Although, Ka sharing was long and need translation, her story was so touching and so encouraging. I was so surprised that never heard from her before. Ka and her family have never lose hope and keep up and fight together, again and again. All MaxSmiles members were nail to the seat and silence, some had tear in their eyes. By the end of meeting, one of MaxSmiles members – Uncle Prathai sharing his experiences of taking the second-line drug that Ka was about to start. Uncle Suresh was keeping her company as he speaks English more than anyone. Ka feel so relax and happy. The other members who could not speak English, asked me to translate their best wishes and encouragements to Ka. Some member of MaxSmiles said, they feel so lucky that they did not have to travel so far or work so hard to get the medicine. They looked up to Ka and cheer her up.
I asked for the permission from Ka and Prof. Saengsuree to share these photos and the story. Just want you to know that never give up on something you have never tried, even if it is impossible. If you fail at least you have tried your best, but if you success then it is so rewarding.
Last update, Ka health has been improving and still travel across the borders for the medicine on every 2 months.
Here, I want to give Big Thanks to Danielle on her hard works in the Global level with the drug company for Ka. Thanks to my team to cover my work while I was working on this individual case. Thanks for MaxSmiles members who are always support to each others.
Again, this old quote of TMF is always comes to my mind when I help a patient from far way countries to access to the medicine.
“Fostering global access to leukemia treatment one patient at a time.”
Thank you very much for reading.
|Ka, her two brothers and me at first met at the hospital.|
|Prof. Saengsuree prescribed her first lot of the medicine.|
|Ka, her brother and mother signing the visitors book at our office.|
|Ka sharing with MaxSmiles.|
|She who have never give up.|
|With a new friend, Uncle Prathai, sharing his experirence on the medicine that she was about to start.|
|With Uncle Suresh, who always welcome our international guests.|
|Always laughters and smiles in MaxSmiles.|