By John Isaac
GOING for a follow up appointment with her oncologist these days means being away from home for a month.
That’s how much more complicated and difficult it has been for cancer patient Jessica Liaw’s post treatment. Liew is from Lawas, a small town in Limbang, Sarawak, and the nearest hospital she could go for chemotherapy and radiotherapy is 200km away in Kota Kinabalu, Sabah. Specialist hospitals in her home state Sarawak are further away, the nearest being 1,200km away in Miri.
The logistics were challenging even before, but the Covid-19 outbreak and subsequent movement control orders have thrown so many hurdles her way that she now fears for her life.
“Even with a letter from my doctor and the police, I got stopped at the checkpoint and was made to return to Lawas, causing me to miss my appointment. I made another appointment and appealed to the authorities and managed to get across the state border last month.
“But because of Covid-19, I had to take a swab test upon arrival in Sabah and be quarantined for two weeks before I could see the doctor. Then, I had to do another test and be quarantined again back in Sarawak. All in all, for a one-day appointment, I had to be away for a month, ” says Liaw.
Liaw was diagnosed with stage four endometrial carcinoma (a type of cancer that begins in the uterus) in 2011. By then, her cancer had spread to her lungs, abdomen and liver.
She underwent a surgery to remove part of her bowel and insert stents into her ureters (tubes from her kidneys to her bladder) attached to two nephrostomy bags that help her kidneys function.
Liaw still has to wear a colostomy bag (attached to the stoma to collect fecal matter from the digestive tract).
Her stents need changing every three months and her stoma bags are changed daily while the nephrostomy bags every few days. Liaw needs to have dressings done regularly to prevent infection at the site of the nephrostomies.
Lawas is in a difficult location, explains Agnes Padan who is from Long Semadoh, a settlement in Lawas District, she has been campaigning for better healthcare for Sarawakians for more than a decade
“Surrounded by Brunei in the south, Kalimantan in the east and Sabah to the north, patients have issues getting to a hospital. Since we don’t have a proper hospital and healthcare system in Lawas, it is problematic for people to travel long distances to get to a fully-equipped hospital.
“Now with the pandemic, patients who are referred to Miri General Hospital and Kota Kinabalu Hospital are finding it extremely difficult to travel, ” says Agnes.
Agnes, along with her husband Lawrence Jayaraj, launched the Kam Agong Campaign close to two decades ago to help disadvantaged Sarawakians access healthcare.
More importantly, they want to raise awareness about the poor state of healthcare in Sarawak and put pressure on the government for much needed improvements in the health services in the rural areas of Sarawak.
“We assist special and urgent cases by purchasing flight tickets through our contacts. We also assist some cases to get to the nearby private clinic. And we have also assisted in providing patients with wheelchairs, walkers, medical beds and medical accessories that they need. We do what we can,” says Agnes.
Agnes’s mother, Kam Agong, died from postpartum haemorrhage (excessive bleeding) 28 days after a C-section delivery of her eighth child, Jordan, at the Lawas District Hospital.
In 2004, Agnes sued the hospital, the doctors who attended to Kam and the Government for negligence. They won their medical negligence case in 2008 but it has not brought change to improve access healthcare for those in the interiors of Sarawak.
“A new district hospital in Lawas was promised under the Seventh Malaysia Plan (1996-2000). This year will mark the 12th Malaysia Plan and the proposed hospital has not been built, ” says Agnes who helps many Sarawakians, like Liew, access healthcare.
The hospital in Lawas serves the town’s population of more than 50,000 and also the surrounding villages.
The new Lawas Hospital has, most recently, been projected to be completed by end of 2023.
Health in limbo
Liaw’s late diagnosis was yet another tragic consequence of the ill-equipped and understaffed district hospital in Lawas that lacks specialist services for those with serious illnesses, says Agnes.
When she first experienced symptoms that “something was not right” such as prolonged heavy vaginal bleeding, Liaw sought treatment at the Lawas district hospital. However, she was only prescribed medicine to stop the bleeding and also contraption pills to regulate her hormones.
Despite diligently taking the medicines, the bleeding persisted.
Because there are no facilities to conduct scans to investigate her condition, Liaw’s cancer went undiagnosed for several years.
When her situation worsened, Liaw consulted a doctor at a private clinic in Lawas. An X-ray revealed her worst fears: she had cancer. She was then referred to the Queen Elizabeth hospital in Kota Kinabalu, for more tests and subsequently, for treatment.
For a year, while she was undergoing treatment, Liew had to stay in a hotel and with relatives in Kota Kinabalu, and be apart from her family in Lawas. She has three children, and her husband and her separated during this time.
“It was so costly. Travelling to and from the hospital by Grab cost about RM90 and I had to go to the hospital at least twice a week, barring any complications. It was expensive especially since I had to give up my business in Lawas because I was not there, ” says Liaw.
During the pandemic, getting transport to Kota Kinabalu for hospital appointments has been a challenge for Liew as taxi or Grab drivers are reluctant to make the trip across the state border. The only way is to charter a private car which is expensive.
Liaw is grateful to have the help of Agnes.
“Agnes arranged for a chartered car to take me to Kota Kinabalu. The other option patients like me have is to fly to Miri but it is very costly and not many can afford it, ” says Liaw.
Speaking up to bring change
Liaw has decided to share her story to bring attention to the dire situation of patients like her in rural Sarawak.
“Do we not deserve access to proper healthcare too?” she asks, frustrated at the situation for many Sarawakians who live away from the big cities like Kuching, Bintulu and Miri.
Liaw completed her final radiotherapy session last August and is now living with her parents.
“My mother is in her 70s and she has to look after my dad and two younger sisters who are disabled. And now, she has to look after me too. My dad and two sisters get RM300 disability allowance each but the money has to be spent on me and the costs of going up and down to Kota Kinabalu for my appointments.
“I shouldn’t have to if the new Lawas hospital was built as promised.
“It hasn’t been easy, physically and mentally, and that is why I am determined to tell my story and campaign for the access to healthcare that we in Sarawak deserve.
“I hope that other patients come forward and share their stories too. I want Malaysians and the rest of the world to hear our stories and to know our plight, ” says Liaw.
This article first appeared in The Star