Disease victims in cry for help

PUBLISHED : Friday, 22 June, 2012, 12:00am
UPDATED : Friday, 22 June, 2012, 12:00am


Shanghai resident Wu Jun has not set foot outside his home for more than 18 months.

Wu has ALS, a rare disease of the brain and spinal cord nerve cells that control voluntary muscle movement.

The disease has made him unable to walk without aid. And his 63-year-old mother, the only person looking after him, is not strong enough to help him out of his housing block, where he lives on the sixth floor.

Every day, she aids the 38-year-old in brushing his teeth, changing his clothes, bathing, taking medication and eating.

Commonly known as Lou Gehrig's disease, this incurable condition is often referred to as a slow death sentence for the more than 350,000 people afflicted around the world.

Yesterday marked International ALS/MND Day, but every day is a struggle for ALS patients such as Wu, along with those across the country who have long been calling on local governments to increase medication subsidies, as exorbitant medical bills are not yet covered by most local insurance schemes.

Meanwhile, the disease continues to claim about 100,000 lives each year, according to the International Alliance of ALS/MND Associations.

The most effective way found to slow the effects of the condition is to take riluzole tablets, produced by American company Genzyme. The expensive medication is sold under the brand Rilutek.

Wu says he buys 13 boxes of riluzole a year, at 4,300 yuan (HK$5,240) per box. The medicine normally sells for about 4,800 yuan per box, but the Shanghai branch of the China ALS Care Club negotiated a cheaper price for patients in the city.

For Wu, that cost is on top of the 9,000 yuan he spends a year on traditional Chinese medicine to treat the side effects of riluzole. Half of the Chinese medicine bills are covered by a commercial insurance policy bought by his employer, a Sino-German manufacturer.

Compared with most sufferers of the disease, Wu considers himself fortunate, even though he can barely afford the expensive drugs on his current salary and from trading his larger flat for a smaller one.

Shirley Zhao, the general manager of Genzyme, said the drug was expensive because of the high cost of research and development, but the medicine was still cheaper than in other countries.

'The R&D cost for ALS, similar to that of other rare diseases, is high since there are a small number of patients, and it takes a long time to carry out the clinical trial,' Zhao said, adding that many pharmaceutical companies were not enthusiastic about making products that targeted rare diseases, as such medications were often considered to be of 'low commercial value'.

Xu Quansheng , a volunteer leader of the ALS group in Shanghai, said fewer than one-third of patients in the city took riluzole; most abandoned it after about six months because of the high cost.

'A lot of people can't bear the economic burden and just wait to die,' Xu said.

Zhao said that since it was approved for the US market in 1995, riluzole had been included in medical insurance networks of all developed countries.

A spokeswoman for the Shanghai Medical Insurance Office said state authorities were the ones which decided whether to include certain types of medications in the insurance system.

Even with the medication, the disease continues to take its toll on Wu. He was diagnosed with the disease in July 2010, and he said it tore his marriage apart, leading to divorce. He was also left to care for their then five-year-old son.

'My wife's leaving me was quite related to the absence of medical insurance for my disease,' Wu said. 'As far as I know, my case is not unique.'

In Shanghai, the authorities have included just 12 kinds of rare diseases in the medical insurance scheme. ALS is excluded as its occurrence rate of about one in every 100,000 people exceeds the insurance benchmark of one per 500,000.

But Nanjing in 2008 listed ALS as one of the rare diseases subject to medical insurance coverage, and patients can have as much as 10,000 yuan of their treatment costs covered annually.

On February 29 - international Rare Disease Day - Xie Lijuan , a former vice-mayor of Shanghai in charge of health, visited Wu to express the authorities' concern. Wu sought insurance cover for ALS and Xie said she would try to lobby the authorities.

Xu said his organisation sent at least three letters appealing for such coverage to the municipal government in the past three years but had not received a response. Some patients have also written to mayor Han Zheng and local party secretary Yu Zhengsheng .

He said they understood that government funds were limited and hence they asked that patients be given free drugs for only 18 months. By then, the disease would have entered a late stage and the drug would not help much.

Zhao said the average life expectancy of an ALS sufferer was three to five years.

Dr Zhi Huiping , of Shanghai's Shuguang Hospital, said she was most frustrated that there were no alternative medicines to treat ALS besides the high-priced riluzole, which is estimated to prolong a patient's life by two months if taken for a year.

She has advised about 200 patients in the city and found most of them were impoverished residents between 40 and 60 years old.

She said people with ALS suffered more than those with Alzheimer's disease because those with ALS retained their cognitive abilities and memories.

And particularly for poor people, she said she could 'hardly see any effective solution to prolonging their lives'.

She said the government should help these people, who were often the breadwinners and had worked for many years, making contributions to the country.

Dr Zhang Cheng , of the First Affiliated Hospital of Sun Yat-sen University, said many ALS patients without relatives had to employ someone to take care of them around the clock.

Since 2009, Zhang has participated in public events in Guangzhou to appeal for more medical subsidies, but their efforts have been fruitless.

'I don't think our government has a lack of money,' Zhang said. 'Their ignorance is based on their little understanding of this disease. ALS is a rare one, but everyone has the possibility of becoming sick with it.'

For Wu, he hopes to live for a few more years to see his son turn 10 and become more independent.

'I feel guilty with my son. I can't play with him and I don't have the energy to tutor him on his homework. I am helpless,' he said. 'I hope he can grow up with a healthy body and mind. Ever since I got the disease, he has said he wants to become a doctor.'