PETALING JAYA, Oct 19 — Ayesha* has only one wish for the future: To live long enough to see her twin children grow up.
The 33-year-old hotel worker who lives in Labuan has been fighting a hard battle with retroviral disease since she was diagnosed in 2008.
Retroviral disease is a term that refers to a variety of retroviruses including HIV, and it is commonly used by medical professionals to avoid subjecting an individual to the stigma associated with the word HIV.
Whenever she sought treatment, she had to make the long and costly journey from her hometown in Beluran to the town centre of Sandakan to see a doctor.
This meant she often missed appointments and her health suffered as a result.
“It wasn’t easy commuting to and from the clinic to get treatment. The journey was long and even then, doctors would sometimes be unaware of what kind of medication I needed,” Ayesha told Malay Mail.
Her transportation woes became a thing of the past after she became a beneficiary of the SAGA Health Access Programme (SHAPE) under the Malaysian AIDS Foundation (MAF).
SHAPE was introduced in 2018 to provide cash incentives to individuals with critical illnesses in rural Sabah who have to travel great distances to access government-run healthcare facilities.
The incentive will help to cover the high cost of travelling and other logistic expenses related to the hospital trip.
Ayesha receives RM40 from SHAPE each time she goes for an appointment, which is usually once every four months.
It might not seem like much but Ayesha says it all adds up when you’re living in a difficult financial situation with children to look out for.
Her health condition has also stabilised since she is now able to receive her treatment on time and she is grateful for the emotional support given to her by SHAPE volunteers.
“In terms of physical health, I am still strong but there are times where I struggle financially due to this disease.
“As a widowed mum, it’s not easy to balance work and family and being far away from my children in Sandakan is difficult for me too. But I have to keep moving forward.”
She added that the people involved in the programme had given her emotional support as well.
“My doctor will check in with me regularly to make sure I’m doing okay and taking my medication on time.”
With the financial aid from SHAPE, Ayesha is determined to keep working hard for the sake of her kids and hopes she can live long enough to see them pave their way in the world.
“My late husband passed away when they were still very young and they have shed enough tears over that.
“I hope to live long enough so that when they are older, it will be easier for them to accept my passing.”
Ayesha’s story is echoed by that of her fellow SHAPE beneficiary Marissa*, a Form One student from Beluran who was diagnosed with thalassemia at the age of one.
Marissa’s mother told Malay Mail that her daughter used to miss hospital appointments frequently as they could not afford the transportation costs to go to the town centre in Sandakan.
The family now receives RM70 each time Marissa travels to the hospital to get a blood transfusion, which is usually three or four times a month.
Marissa’s mother said that programmes like SHAPE are much-needed in rural areas across Malaysia where underprivileged individuals cannot afford to cover the travel expenses to get the healthcare they need.
“Before we became involved with SHAPE, we had to use whatever money we had to cover the transport costs to get Marissa to the hospital.
“Now that we have financial aid from SHAPE, it’s a relief knowing that we can afford to spend that money on other essentials.
“Programmes like this have done a great deal to lift the burdens off the shoulders of people living with chronic illnesses, especially those who face financial problems,” she said.
SHAPE’s help has given Marissa one less thing to worry about when it comes to managing her condition, leaving the teenager with more time to focus on her ambition of becoming a teacher.
SHAPE currently has more than 120 beneficiaries from low-income households in Sabah.
The programme is carried out in partnership with the Duchess of Kent Hospital, Tawau Hospital, Semporna Hospital, Lahad Datu Hospital, Hospital Kunak as well as government health clinics and the Welfare Departments in Sandakan, Tawau, Semporna, and Lahad Datu.
The programme also works to prevent the spread of HIV by ensuring people living with HIV (PLHIV) can travel to their healthcare appointments and receive the medication and treatment they need to get an undetectable viral load, thus protecting their sexual partners from being infected.
MAF has also joined hands with e-commerce platform Shopee for a fundraising campaign aimed at supporting treatment, care, and prevention programmes for PLHIV.
The Shopee X MAF page will host an online store for exclusive merchandise items under the Red Ribbon brand, as well as Hilton Hotel Group vouchers, MAC Cosmetics lipsticks, and dinners with celebrities up for grabs to donors.
For more information, check out MAF’s official website.
*Names have been changed to protect their privacy.