Help for some as killer-disease safety net gets go-ahead

Top News | Sum Lok-kei 4 May 2017

The Hospital Authority's Samaritan Fund will subsidize a drug for the rare disease tuberous sclerosis complex (TSC) from July - but it will not help patients with a similar condition to a woman whose death triggered a public outcry.

The authority said it will include everolimus (afinitor) in its safety net from July for treating TSC-related astrocytoma, a type of brain tumor.

"Patients may apply for a subsidy from the Samaritan Fund according to their clinical conditions," a spokesman said. "Those who pass the means test will be subsidized for taking the mentioned medication."

But in a radio program yesterday, a TSC patient group leader said it would not have helped Chi Yin-lan, pictured, who had the rare genetic disease but suffered from tumors in her kidneys.

Chi, who died more than a week ago aged 36, had urged legislators on April 11 to include the drug in the authority's drug formulary and provide more financial support for patients with her rare genetic disease.

Rebecca Yuen Pui-ling, chairwoman of the Tuberous Sclerosis Complex Association, said yesterday: "Chances of people suffering both astrocytoma and TSC is very rare."

She added that she had come across only two cases in Hong Kong so far.

Aside from meeting the clinical conditions, patients will also have to pass a strict means test, she said.

"To receive the subsidy from the Samaritan Fund you basically have to live under the poverty line," Yuen said.

As most patients will not be eligible for the fund, Yuen argued it would be useless to the 200 TSC patients in Hong Kong.

If patients were to purchase the drug themselves, it would cost HK$20,000 a month for adults and $10,000 for children, she said.

Everolimus belongs to a class of medication known as mTOR inhibitors and is used in target treatment of renal cancer.

In a 2016 study funded by Swiss pharmaceutical company Novartis, everolimus was also shown to be effective in reducing frequency of seizures in children with TSC.

In Hong Kong, it has been registered for treating astrocytoma and tumors in the kidneys, according to the authority.

However, the authority has yet to decide to subsidize it for renal tumors in TSC patients.

Speaking in the same radio program yesterday, the authority's deputizing director (hospital services), Ian Cheung Tsz-fung, said they are in the process of reviewing the effectiveness of the drug for renal tumors.

He said about 40-50 percent of TSC patients may have their renal tumors reduced in size but there was not enough evidence to show that the drug could mitigate the disease's complications, such as bleeding, or help prevent death.

Tuberous sclerosis complex causes the growth of benign tumors in vital organs, including the brain, skin, heart and kidneys.

"I don't want to die," Chi told a Legislative Council health services panel meeting in April as she fought for the drug to be subsidized.

She died last week from complications related to TSC.

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