CULTURE + SOCIETY
Fighting For The Air To Breathe
Sometimes you’ve got to break the rules where they don’t make sense
Rachel has a rare disease. Mucopolysaccharidosis (MPS). More specifically, Mucopolysaccharidosis Type 4. By medical definition, MPS is a rare disease in which the body is missing an important enzyme needed to break down long chains of sugar molecules. MPS Type 4 has two forms (MPS IVA and MPS IVB). The former, a severe form with rapid progression and the latter, a slowly progressing form. Rachel has MPS IVB.
In layman terms, and the only terms you need to know, Rachel has a rare disease that requires MYR1.6 million per annum in order to survive. That’s $359,510.24. Each week, on Wednesday she has to travel to a local government hospital in Kuala Lumpur to get her treatment. She takes a Grab (local Uber) to the hospital, sits in a chair, and like chemo, is intravenously administered from 10am — 3pm. This weekly treatment costs around RM12,000 ($2,696) which is 3 vials worth.
Post treatment, Rachel then takes a 30-min Grab ride to the Ministry of Health in Putrajaya (Malaysia’s Washington DC) from the hospital, and waits outside the Minister’s office in the bid to spring on him and his team, and lobby her mission — to pressure the health ministry to encourage pharmaceutical companies to compete and produce the enzyme. This will not only help to reduce costs it will also enable more MPS patients access for treatment. The office closes at 5.30pm. Luck or no luck seeing the minister, Rachel will then take a Grab and head home in a 40-min ride and rest like a vegetable. It’s been a long day after all.
Rachel’s been doing this for years. And she will continue to do so until she no longer can.
I know this because I accompanied Rachel for a full day on a Wednesday, and I got a dose of what it feels like to be her. Almost. For a dose of adventure, I brought five journalism students with me as part of their assignment. We’ll come to that in a bit.
As head of a communication school for a private education group, I had to report to a handful of influential men. One of them, the owner of the entire establishment, is a well-known and much loved philanthropist. I call him The Big Boss.
The Big Boss is a man of vision and has a penchant for social causes. From flash floods, soup kitchens to free education for displaced children, The Big Boss would see opportunities to help ease society’s wicked problems. The problem is, he couldn’t do it alone. He needed a team of people to make things happen. I was one of them. One of the very few female that gets called in to sort things out. In fact, that was my unofficial name tag — The One Who Sort Things Out.
Aside from running a school of 450 students, overlooking 5 departments, traveling for business development, I was also doing the odd social champion endeavors for The Big Boss. The only thing I wasn’t doing was running the country. This is what working in the private education sector in Malaysia is if you want to be successful. Teaching alone, no longer cuts it. You gotta run a three-ring circus.
But this ain’t a gripe or a diss. I love The Big Boss. In fact, he is one of my greatest mentors. He is also generous to his staff. He gave us a gym, swimming pool, free education for further studies and a great cafeteria. My Zumba and water aerobics classes were free and I also got a hefty discount for my doctorate. I could approach him anytime and he was someone you can share ideas with, and he will tell you how to make money out of it. The problem is, the other employees didn’t tap into all these opportunities. They preferred to complain about the things he didn’t provide. That’s people for you.
Before I digress into oblivion, the point here is, one day The Big Boss called me to his office and said, “There is this girl named Rachel with a rare disease and I want you to tell her story. I need it to culminate in a trust fund. I will provide her the seed capital, so she can use it to roll for the treatment and media focus she requires. You were a journalist, you know what to do, and get your media students involved.” Direct and succinct, that’s how The Big Boss tells you.
Going through my calendar I saw that I had a packed teaching schedule overlooking foundation, diploma and degree courses, I had an education fair over the weekends and I was also scheduled to prep and fly to the United Kingdom to negotiate a partnership with a university in Liverpool. But there were a few breathing spaces, and so I said, “Okay”. So if anyone thinks being a lecturer in Malaysia is just about classroom management and marking assignments and exams, please set yourself on fire. But then again, I am an extreme case. I like challenges. And I like my boss because I believe in his social causes. He just likes to do too many things.
After getting to know Rachel, I decided the first thing we need to establish is to be in her shoes. At the time, Rachel was 29, had graduated in Law but due to her condition, it was difficult to pursue further. She is the oldest patient of MPS in Malaysia, and for that reason, she has been lucky that a foreign pharmaceutical company agreed to finance a portion of her treatment. This is what has kept her alive. She is however, living a life running against time. So this trust fund can help extend her life.
It kept me awake at night in those early days that for Rachel, to be alive was not much dependent on her health, but the cost of it. This was unfair. But when I met Rachel, she blew me away.
Though she was 4 feet tall, she had the optimism of a blue whale which I had never encountered. She got me out of my restless nights when she said to me, “For whatever time I have, I ain’t gonna spend a second of it mopping. Plus, my mum will kill me if I do. Every day is a celebration until it no longer is.”
Every MPS patient has to travel to this one general hospital in Kuala Lumpur. Rachel is lucky. She only has to travel 30 minutes. Kimberly has to travel 4 hours. Each week at 5am, she takes a 3-hour train ride to Kuala Lumpur, a 20-minute Grab ride to the hospital. After treatment, she does that in reverse. She hits the sack by midnight. This is her weekly reality having MPS. She is only 15 years old.
On an idea, Rachel suggested that me and my journalism students follow her to the hospital. There, at the genetic ward we can interview her doctor, the nurses, talk to the other patients and their family members. You know, build the entire climate for the story of MPS, and that will create the driving narrative for the trust fund. People need to know the 5W 1H (what, where, who, when, why and how).
Problem is, to get a permit from the hospital director will take months. If it is even granted. The thing about government hospitals, they are notorious for not wanting any form of publicity unless it’s blown from their own misaligned horns. Cameras aren’t allowed on premises. They were so shady, it was as if the government hospitals were illegal drug facilities being operated by the Sinaloa cartel.
But Rachel was confident that in the pursuit of her cause to help others like her, her doctors would obliged.
She was wrong.
On the day of the treatment, we were allowed access to the genetic ward as Rachel’s “friends”. The nurses were friendly and accommodating. I met the other patients and their family members and they were all too happy to share their stories. Anything, they said, that can help them educate the public and pharmaceutical companies about their condition. More importantly, they were happy we could share their stories because they wanted their children and family members to be part of society, not to be treated like the Hunchback of Notre Dame.
Fifteen minutes in, a man in a white robe approached me. My students were still interviewing the patients. Rachel had started her treatment.
It was the director of the ward. He asked what we were doing. I knew then that we had about 10 minutes to wrap up what we needed. He didn’t care about telling the story of the patients. He didn’t care about Rachel’s trust fund. The director didn’t care that Kimberly had to travel for hours from Ipoh to KL and back to Ipoh. The director didn’t care that these people’s lives were on the line and had a time limit. The director only cared that we did not record anything in and about the hospital because it could get them into trouble with the ministry. Trouble for disclosing what the ward looked like and how they did things. If they were doing it all correctly, why the need to be discreet, right? But that was not the logic.
And so we were booted out of the genetic ward. In fact the director wanted to get us booted out of the entire hospital.
“So what do we do now, Miss Natasha?” My students asked.
“Here’s the plan.”
In journalism, my editors used to tell us, “If you’re kicked out of an establishment in the pursuit of a story, it means you’re doing something right.”
I told my students, we have approximately 15 minutes.
I will go to the director’s office on the pretext of discussing how I can submit a letter of permission to conduct our project. In other words, I was gonna act stupid and ask a lot of useless questions to kill time for something that isn’t going to happen.
My students on the other hand will be divided into 2 teams. One will video record all the patients and guardians asking them their full names and obtain contact. With Rachel’s help and persuasion, we can reach them for more deeper interviews outside the hospital hours. The other team will do a visual scope. They will put their phones on record, walk around, and in 10 minutes record everything they can about the vicinity. What’s on the walls, the posters, the charts, faces of the patients, the guardians, expressions and all, everything visual.
And by the time I’ve annoyed the director and he kicks me out of his room, we will walk out and meet at the hospital cafeteria.
Doing what was possible, we were determined not to waste the day.
After Rachel successfully launched her trust fund and The Big Boss was happy, I was with my students overlooking the sunset one evening doing a post-mortem. We were reflecting and laughing at the episode being kicked out of the hospital.
And while one of them named Sathis teared up thinking about the enormity of the patients’ lives, Samuel, another senior, asked me what inspired me to get them to toe the line with the authorities (which they enjoyed doing willingly) without a second hesitation.
“That took balls Miss Natasha.” Said Samuel.
“Nothing to do with balls Sam. What we did was nothing extraordinary. We did what we had to do. Did you look at their faces? The patients and their family members? Every one of them at that genetic ward deserves to have their stories told. They shouldn’t have to fight authorities to live. No one should.”
