Nur Suhana and Roslan with their son Shafiq Rizqi, whose lung conditions improved following monoclonal antibody treatment. — Photos: ART CHEN/The Star
SHAFIQ Rizqi Ruslan, 21 months, doesn’t need a microphone to have his voice fill the small conference room in Bangsar South. Oblivious of his surroundings, his high-pitched voice and giggles manage to overshadow the voice of invited speakers at a media roundtable to discuss respiratory syncytial virus (RSV), a condition he contracted as a baby.
He turns one corner of the room into his small playpen but only for a while, before he starts running, playing catch-me-if-you-can with his father Ruslan Mukhtar, 41, who playfully chases the toddler out of the room.
His mother Nur Suhana Abd Shukor, 36, from Kuala Lumpur smiles at her son's antics. "He isn't always this active," she says. “He was born at 27 weeks, weighing only 975g, and spent his first 88 days in the hospital, 61 of them in an incubator."But the hospital visit didn’t stop there, Nur Suhana, who is an engineer, says. Shafiq Rizqi was in and out of the hospital eight times due to pneumonia.
“We still didn’t know that it was RSV. We only knew that it was pneumonia or chronic lung disease since it is normal for preterm babies to contract them,” she adds.
But when doctors recommended a monoclonal antibody to help protect her baby from RSV-related diseases, she started to do her research on RSV and its treatments.
The antibody is usually recommended for premature babies who are at highest risk of getting RSV infections. A complete dose of this antibody has five vials, which can cost up to RM20,000.
“We immediately agreed with the doctor’s recommendation and his condition improved. He would only get sick for two to three days,” says Nur Suhana.
“But the medication came with a huge price tag. Lucky for us, we have some savings and our families chipped in. I can’t imagine the stress and trouble underprivileged parents face if they cannot afford this treatment,” adds Ruslan.
Nursyahirah Izzatul and Wan Ab Hafiz with their daughter Wan Nur Afeeya who was born prematurely at 25 weeks and was infected with RSV this year.
Challenge to access
Galen Centre for Health and Social Policy chief executive officer and founder Azrul Mohd Khalib says RSV is one of the main causes of childhood hospital admissions, causing six in 10 acute respiratory infections in children
While RSV has no cure, Azrul says there is preventative treatment to reduce the severity of its infections, particularly in those who are at greater risk of developing severe RSV-related illnesses, including preterm babies.
“But access to this antibody is a challenge due to its high cost, treatment protocols, limited availability and restricted usage.”
He says the clinical scenario in Malaysia is no different than in other countries, with limited awareness and education, insufficient data collection and reporting, increasing intensive care and ventilation need and limited budget and resources.
“It is very hard for the authorities to increase budget or improve facilities when they don't have enough detailed and valuable data,” Azrul says.
Several financial assistance is available for this, Azrul says, including Medical Aid Fund, Baitulmal Relief Scheme, state zakat bodies, Social Welfare Department, Lion-Parkson Foundation Medical Aid and Yayasan Ikhlas Malaysia.
“But there are still hurdles that parents need to go through,” he adds.
While the paperwork is generally laborious and time-consuming, Azrul says each organisation has its own qualification and approval criteria, and funding limit.
“We hope that there is an easier way to go about this, at least to ease the parents’ emotional and financial burden. This is where support from family, friends or support groups come in,” he says.
Norazleena founded BPM to help parents with financial support to purchase treatment for RSV.
Like-minded parents
Nursyahirah Izzatul, 30, is thankful that both her and husband, Wan Ab Hafiz, 36, had the right support at the time when they needed it the most.
When their second daughter, Wan Nur Afeeya Aqela, was born at only 25 weeks and weighed only 700g, Nursyahirah was overwhelmed and clueless.
“Thank God I have friends with similar experience and during our sharing sessions, I got to know about this parents support group,” says the administrative executive from Puchong.
Through Malaysia Parents and Premature Babies Support Group Organisation (BPM), Nursyahirah and husband obtained better understanding on how to apply for medical aid for the monoclonal antibody injections.
“Not only that, we also received emotional support, updates and tips from the group,” says Nursyahirah.
Alhough it was only established four years ago, BPM has over 48,000 members who are not only parents and their babies, but also healthcare professionals like doctors, nurses and technicians.
“We receive at least 12 enquiries daily,” says founder Norazleena Yaha who is a mother of three premature babies. She started a closed group for parents with premature babies in 2014 following the birth of her daughter, Adreena Scha Azrul Shah who was born at 31 weeks, weighing only 800g.
She says: “Public awareness on premature babies and the challenges they and their parents are face which includes RSV, is still low. We take this as our main task."
While the group becomes the listening ears for distressed parents, it also acts as a help desk for those looking for help in applying for financial aid to purchase the antibody.
“Most of them are stressed and sad. The least we could do is help lessen one worry from these parents,” Norazleena says.
Ultimately, she says, BPM wishes for a more systematic application process and lower cost for the monoclonal antibody which Norazleena says will benefit underprivileged parents and their premature babies.
Azrul says lack of data is one of the challenges in formulating better policies on RSV and its treatment.
Understanding respiratory syncytial virus (RSV)
What is RSV?
RSV is a common and contagious virus that infects the nose, throat and lungs, making it hard to breathe.
The seasonal virus affects the airways and usually causes mild, cold-like symptoms. In some cases, it can lead to other problems such as bronchiolitis, pneumonia or croup. In severe cases, children may need to be hospitalised.
The RSV season in Malaysia usually follows the monsoon season, from the middle to the end of the year.
Who is at high risk?
• Premature infants: Babies born before 29 weeks of gestation or those born between 29 and 32 weeks with certain additional risk factors.
• Infants with chronic lung disease: Infants with a history of chronic lung disease who require medical therapy within six months prior to RSV season.
• Infants with certain congenital heart diseases who are less than one year old.
• Infants with severe immunodeficiency disorders
What are the symptoms?
Mild:
• Low-grade fever, less than 38.3°C
• Runny/stuffy nose
• Dry cough
• Sore throat
Severe:
• High-grade fever over 39.4°C
• Unusually tired
• Refuses to eat or drink
• Trouble breathing or is breathing fast or irregularly.
• Skin or lips turning blue or becoming very pale
• Noisy breathing when not crying (wheezing, rattling, whistling sounds)
Preventing RSV
• The virus is spread by touching something that has the virus on it, person-to-person contact and through droplets from coughs and sneezes. Here are some steps to prevent it:
• Wash hands regularly.
• Avoid crowd or other younger children, especially those who have fever or cough.
• Keep toys, clothes, blankets and sheets clean.
• Do not let anyone smoke in the house or even nearby.
Finding support
Malaysia Parents and Premature Babies Support Group Organisation, or Kumpulan Sokongan Ibu Bapa dan Bayi Pramatang Malaysia (BPM)
Facebook: www.facebook.com/babyprematuremalaysia
Website: www.preemie.org.my
WhatsApp: 018-2911244
Source: Galen Centre for Health and Social Policy
