Health-care boon for kids with rare diseases

Health-care boon for kids with rare diseases
Ms Wendy Chong and her daughter, Ruo En, at a fun event at the Bishan Active Park organised by Rare Disorders Society Singapore.

For about $100 a year, MediShield Life will ease financial burden of such children's parents

Relief and hope.

That is what MediShield Life, which kicks in by the end of this year, means to children with rare diseases and their families.

"The scheme will definitely ease financial issues some families face, especially lower- to middle-income families," Rare Disorders Society Singapore president Kenneth Mah told The Sunday Times.

"It will allow parents to focus on care management and journey with their child with less burden."

For about $100 a year, the new national insurance will give parents of these children the safety net they desperately need to cope with large medical bills. They can claim up to $700 daily for ward charges in B2 or C wards and up to $2,000 for surgical procedures.

Children with rare conditions are often rejected by private insurers. MediShield, Singapore's basic health-care insurance, only started covering congenital illnesses for those diagnosed after March 1, 2013.

This left parents like 40-year-old Wendy Chong in a bind. Her six-year-old daughter, Fong Ruo En, had to undergo two surgical operations to correct problems in her legs and hips caused by cerebral palsy.

Even after government subsidies, operations and hospital stays set the family back by about $8,000.

"We are worried because we do not know what other procedures she might need in the future," said Ms Chong, a restaurant manager.

She tried to buy private insurance for her child, but the firm looked at Ruo En's health records and closed the door on her. "At least with MediShield Life, we have a safety net for her," she said.

Ruo En's premiums would be 30 per cent more for 10 years than a healthy person's, to reflect her higher health risks.

"But it's much better than nothing," she said.

"Kids with rare disorders need insurance even more," said Mr Mah yesterday as the society marked World Rare Disease Day.

"They have weaker immune systems and are more susceptible to complications such as pneumonia.

"We hope (MediShield Life) premiums don't go up too steeply down the road. Many of these children need lifelong care."

Though MediShield Life can ease the burden of big hospital bills, parents still need to fork out hundreds of dollars a month for equipment, such as home-care ventilators, phlegm suction devices, and physiotherapy sessions.

"It will be good if we could have more help with this," said Ms Dawn Lee, whose son, Jarren, has a rare nerve disease.

Clad in a "Super Mom" T-shirt, Ms Lee, together with other parents, yesterday took her children for a fun day at the Bishan Active Park. The kids painted pictures of gingerbread men and left their handprints on a canvas.

The close-knit group of parents support each other through by sharing advice and a listening ear.

RDSS also directs them to medical resources for their children's conditions and raises funds on its website for their needs.

Together with children's charity Rainbows Across Borders, both groups will hold the first Rare Disease Conference Asia this month to forge bonds with parents and associations overseas so they can learn best practices.

The groups yesterday launched a book (left), Love Is Not Rare: Uncommon Stories Of Hope, that celebrates the lives of those with rare disease in Asia. It will be given to paediatricians in hospitals to raise awareness of rare diseases and used as a conference resource, said Rainbows Across Borders executive director R. Rajakanth.

Said Mr Mah, a father and full-time carer to his daughter Chloe, who has Pompe disease, a genetic condition that causes progressive muscle weakness: "Our children may have rare diseases, but love is not rare."

kashc@sph.com.sg

To donate to Rare Disoders Society Singapore, you can e-mail info@rdss.org.sg


This article was first published on Mar 1, 2015.
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