Med­i­cal ex­perts call for so­ci­ety to foot su­per-high bills for treat­ment

China Daily (Canada) - - DEPTH - By ZHOU WENTING in Shang­hai

Bills for the treat­ment of rare dis­eases, which amount to mil­lions of yuan a year and are un­af­ford­able for many, should be shoul­dered by so­ci­ety in­stead of the pa­tients and their fam­i­lies, ac­cord­ing to med­i­cal ex­perts.

“Pa­tients don’t be­come sick be­cause they have done some­thing wrong, so they should not have to foot heavy bills to treat their ill­ness, and so­ci­ety should avoid mak­ing treat­ment in­ac­ces­si­ble,” said Xiong Hui, a mem­ber of the stand­ing com­mit­tee of the rare dis­ease branch of the Bei­jing Med­i­cal As­so­ci­a­tion and deputy di­rec­tor of pe­di­atrics at Pek­ing Uni­ver­sity First Hos­pi­tal.

Kevin Huang Ru­fang, founder and di­rec­tor of the Chi­nese Or­ga­ni­za­tion for Rare Disor­ders, said that although world­wide there are ther­a­pies for 6 per­cent of rare dis­eases, more than 90 per­cent of Chi­nese pa­tients do not use them be­cause of rock­et­ing prices.

“Some pa­tients from wealthy fam­i­lies pay hun­dreds of thou­sands of yuan for just a lit­tle med­i­ca­tion when their lives are at risk,” he said.

“Many in­di­vid­u­als and or­ga­ni­za­tions may be will­ing to give 200,000 yuan ($29,200) for a child to have an ar­ti­fi­cial cochlea (a de­vice fit­ted to the hear­ing nerve), which can be life-chang­ing with a one-time in­vest­ment. But such do­na­tions for rare dis­ease pa­tients, who have to pay su­per-high bills each year, are un­sus­tain­able,” Huang said.

Apart from some ar­eas, such as Zhe­jiang prov­ince and Qing­dao, Shan­dong prov­ince, which have in­cluded the largest num­ber of high bills for rare dis­ease treat­ment in med­i­cal in­sur­ance cov­er­age, pa­tients else­where have dif­fi­culty ac­cess­ing ef­fec­tive treat­ment, he added.

Ding Jie, vice-chair­woman of the Ex­pert Com­mit­tee of Di­ag­no­sis, Treat­ment and Se­cu­rity of Rare Dis­eases with the Na­tional Health Com­mis­sion, said she ex­pects a plan to be drawn up to help provinces and cities to in­clude rare dis­ease ex­penses in the na­tional med­i­cal in­sur­ance sys­tem. This would be based on the dif­fer­ent in­ci­dence rate for the dis­eases and lo­cal eco­nomic lev­els to guar­an­tee long-term and stan­dard med­i­ca­tion is pro­vided.

Huang said it will be mean­ing­less if re­im­burse­ment for rare dis­ease bills is low, as such charges are sky-high, adding that it is also un­ac­cept­able to ask pa­tients to pay the bills be­fore ap­ply­ing for re­im­burse­ment.

Xiong said the re­search and de­vel­op­ment of rare dis­ease ther­a­pies is a dif­fi­cult process, so the high cost of treat­ment is jus­ti­fied. She added that en­ter­prises may lose the ini­tia­tive if they come un­der pres­sure to re­duce prices.

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