Meds relief for sufferers of costly lung disease

Top News | Riley Chan 8 Mar 2018

Patients suffering from a rare lung disease can get free treatment under a program launched by the Hong Kong Alliance for Rare Diseases - but only after they have used a certain drug for two years.

The program can save patients HK$20,000 a month.

Idiopathic pulmonary fibrosis is a rare respiratory disease that causes difficulty in breathing and progressive exacerbation of lung function. It affects about 350 people in Hong Kong and the five-year survival rate is 20 percent, which is even lower than certain types of cancer.

Currently, there are only two promising treatments, one of which includes the antifibrotic drug Nintedanib. It was registered by the Department of Health two years ago but has not been listed in the Hospital Authority's drug formulatory.

Many patients cannot afford the drug as the treatment costs HK$20,000 a month.

A 69-year-old patient, surnamed Lee, was diagnosed with the disease two years ago and lost 30 percent of his lung function. He described the long-term medication as a bottomless pit.

"My wife and I had even thought of selling our house to afford the drug," a teary-eyed Lee recalled.

Collaborating with manufacturer Boehringer Ingelheim and community pharmacies, the Hong Kong Alliance for Rare Diseases will launch a program next Thursday to provide free treatment for patients in their third year of using the drug.

The program covers patients from both the public and private sector. Those who are using public health-care services could receive a subsidy for five months in the first year if their monthly income is below HK$40,000.

Since the drug is not listed in the authority's drug formulatory, patients in the public sector can purchase it in five designated community pharmacies with a registered respiratory specialist's prescription.

Patients in the private sector can simply obtain the medicine from their doctor.

According to Wan Chi-kin, a specialist in respiratory medicine, the common symptoms of idiopathic pulmonary fibrosis include shortness of breath, dry cough, fatigue and clubbing of fingertips.

It causes lung inflammation with fibrosis and worsens the function of lungs, along with other organs. It mainly occurs between the ages of 55 and 75.

The cause of the disease is still unknown.

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