In terms of accessibility to rare disease drugs,we still face many ethical issues that cannot be ignored.This includes ethical issues such as enterprises being driven by economic profit,the lack of large-scale clinical research,the lack of incentive mechanisms for medical institutions to purchase rare disease drugs,off-label use of rare disease drugs,unfair distribution of resources,and imperfect payment policies.Therefore,the country should improve the incentive policies for rare disease drugs,strengthen corporate social responsibility,and ensure stable drug supply.It is essential to respect the rights and interests of patients in clinical trials,and safeguard ethical safety.Medical institutions need to be guided by clinical needs,ensure drug accessibility,and regulate off-label drug use to safeguard the right to health of patients.National medical insurance policy should pay attention to rare disease patients,establish a multi-stakeholder protection mechanism,and promote equitable access to drugs.
rare disease drugsethical issuesright to fair healthcare
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