Résumé
OBJECTIVE：To evaluate the price and affordability of rare disease drugs in China and provide the suggestions for the improvement of rare disease drug affordability in order to provide reference for the relevant decision-making of government departments. METHODS ：According to the List of the First Batch of Rare Diseasesand Diagnosis and Treatment Guideline for Rare Diseases（2019 edition），rare disease drugs were selected. The median price ratio （MPR）was used to evaluate the drug price level ， and the ratio of the annual drug costs to the annual disposable income of urban or rural residents was used to evaluate the affordability，and the impact of price management policieson drug prices and affordability. RESULTS and CONCLUSIONS ：A total of 71 kinds of rare disease drugs were included ，and the median MPR of them was 0.83；among them ，the median MPR of the original drugs was 1.13，and the median MPR of the generic drugs was 0.37. The annual cost of 71 rare disease drugs was 0.001-178.43 times the average annual income of urban residents ，and 0.003-456.57 times the average annual income of rural residents. There were 21 and 28 drugs whose annual cost exceeded the annual income of urban and rural residents.After the implementation of national medical insurance negotiation or volume based procurement of 14 drugs，the median MPR of these drugs decreased from 1.71 to 0.46. For urban residents ，the number of unaffordable drugs had been reduced from 8 to 0；for rural residents，it had been reduced from 10 to 5. In summary ，the price level of orphan drugs in China was slightly lower than international reference price ，but the price level of original drugs was higher than the international reference price ，and the cost of some drugs far exceeded the residents ’ability to pay. It is suggested that the government should strengthen the price management of original drugs ，promote the substitution of high-quality generic drugs for original drugs ，and improve the payment system for high-value rare disease drugs.
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Objective To evaluate the clinical features of local advanced glottic laryngeal cancer patients with beyond five years survival and to provide help for the treatment of advanced glottic laryngeal cancer patients.Methods The data of 129 cases of patients with local advanced glottic laryngeal cancer treated in our hospital from January 1999 to August 2005 were analyzed retrospectively.They were divided into two groups based on their survival time.Forty six patients with beyond five years survival were included in the first group and the other eighty three patients were in the second group.The clinical features were compared and factors associated with survival were identified.Results Compared with the group with under five years survival,the lymph node metastatic rate before treatment was lower,patients treated concurrently with operation were more,and complete remission rate after treatment were higher in the group with beyond five years survival.The differences between two groups had statistical significant.Cox regression analysis identified only operation and complete remission rate were independent prognostic factors.Conclusion For local advanced glottic laryngeal cancer,rational comprehensive treatment and complete remission after treatment and complications prevention are important.But they need to be validated by the large-scale clinical trials.
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Objective To investigate the influencing factors on re-examination compliance of patients with breast cancer Who were in the stage of recovery.Methods By clinic services and telephones,we investigated the reexamination compliance of 189 cases of breast cancer.Results 66.1% of the cases took periodic re-examinations and on the opposite,33.9% of the patients didn't do so.Statistical meaning could be found from the difference of ages,living sites and survival time limits(P＜0.05).Conclusions The main factors to influence the re-examination compliance of patients with breast cancer are age,living site and survival time limit.And it is possible to improve the re-examination compliance of patients by enhancing health education,raising medicsl levels and service qualities,and creating comfortable environment for patients.