Medical reimbursement offers young patient hope

For Ren, a young patient with a rare disease in Kashgar in the Xinjiang Uygur autonomous region, the inclusion of a novel drug in China’s latest medical reimbursement list, which took effect at the beginning of this year, has not only relieved a financial burden, but also bolstered her hope of leading a normal life.

“I was even thinking about discontinuing the use of the medicine due to its high prices in the past. Now I am able to cover monthly medicine expenses with my own income and do not need to worry about costs constantly,” said Ren, who used a pseudonym to protect her privacy.

Ren was diagnosed with a lifethreatening and rare blood disorder that leads to impaired production of blood cells. A targeted therapy — eculizumab injection — used to cost her 20,000 yuan ($2,780) a bottle and nearly 500,000 yuan a year.

Starting Jan 1, eculizumab injections were added to the nation’s basic medical insurance catalog, meaning she only needs to pay 2,518 yuan a bottle out of pocket.

“Knowing that I can afford my regular medicines, I feel much better physically and mentally,” she said on Monday, ahead of Rare Disease Day, which fell on Thursday. “I no longer breathe heavily after climbing a few steps, and I am also able to manage my workload.”

China’s national medical reimbursement list covers drugs for over 80 types of rare diseases, according to the National Healthcare Insurance Administration.

Fifteen medicines targeting 16 rare diseases were added to the list this year.

Han Bing, chief physician of hematology at Peking Union Medical College Hospital, said that Ren’s disease, paroxysmal nocturnal hemoglobinuria, or PNH, is extremely rare.

“There is no official prevalence rate for the disease in China, but a registry shows that there are less than 1,000 patients,” she said.

Han said that the disease’s fiveyear death rate stands at around 30 percent and it mostly affects people aged 20 to 40.

“Novel therapies like eculizumab injection could significantly increase their life expectancy and their quality of life,” she said.

“However, due to its high price, less than 30 patients that I have received at the hospital were using the medicine throughout last year, mostly because many cannot afford it.”

Han said that expanding the insurance list to include more rare disease drugs had taken concerted efforts from government departments, advocacy groups, medical experts and patients.

“At our hospital, the medicine will soon be delivered to hospitalized patients and we are working on introducing the injection to outpatient departments,” she said.

“I think the inclusion of the drug reflects the nation’s deep care for the public as well as the medical principle of enabling patients to not only survive, but also have a quality life with dignity.”

Han said that sustained efforts should be made to address problems such as the transport of medicines to patients living in remote areas, cross-regional reimbursement policies and monitoring of drug use outcomes.

“But we are seeing rays hope,” she said.