Evatt Bruce
Hematologic Diseases Branch, National Center for Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, GA 30345, USA.
Semin Hematol. 2006 Apr;43(2 Suppl 3):S4-9. doi: 10.1053/j.seminhematol.2006.02.001.
The consistent improvements in hemophilia care seen in the years 1960 to 1980 halted when human immunodeficiency virus (HIV) appeared in the blood supply. In the early 1980s, before HIV virulence was fully understood, a complacent blood therapy industry and its regulators waffled on an appropriate response. As a result, the period between the appearance of HIV and its effective elimination from the blood supply was lengthy and many recipients of blood therapies became infected, with devastating impact on their quality of life, quality of care, and longevity. As the decade wore on, even as they began to better understand the threat, industry and public health officials continued to stall, in part because development of interventions was costly and cumbersome. In order to protect the safety of the blood supply and blood-derived therapies, it must be recognized that new pathogens will continue to emerge. Agencies' and companies' decision-making processes in this regard must therefore be proactive rather than reactive, and should preferably implement a formalized risk-management approach. The ongoing safety of blood therapies and the blood supply will also depend on continued vigilance and research. Finally, the hemophilia community must be allowed to play an active and educated role in their own care.
1960年至1980年间血友病治疗方面持续取得的进展，在血液供应中出现人类免疫缺陷病毒（HIV）时戛然而止。20世纪80年代初，在人们尚未完全了解HIV的毒力之前，自满的血液治疗行业及其监管机构在做出适当应对措施上犹豫不决。结果，从HIV出现到其从血液供应中有效消除的这段时间很长，许多接受血液治疗的人受到感染，对他们的生活质量、护理质量和寿命产生了毁灭性影响。随着这十年的推移，即使行业和公共卫生官员开始更好地认识到这种威胁，他们仍继续拖延，部分原因是干预措施的开发成本高昂且繁琐。为了保护血液供应和血液衍生疗法的安全，必须认识到新的病原体将继续出现。因此，各机构和公司在这方面的决策过程必须积极主动而非被动应对，最好采用正式的风险管理方法。血液疗法和血液供应的持续安全也将取决于持续的警惕和研究。最后，必须允许血友病患者群体在自身护理中发挥积极且有见识的作用。
