马尼托巴省一名与退行性疾病抗争的男子将不会失去维持生命的药物，该省现已承诺提供覆盖，此前一家联邦机构推翻了对25岁以上成年人使用该药物的反对建议。
A Manitoba man battling a degenerative disease won't lose access to his life-sustaining drug, with the province now promising coverage after a federal agency reversed its recommendation against its use in adults over 25.
31岁的杰里米·布雷表示，他松了一口气，不必再为继续获得这种每年花费约30万美元的药物而恳求。
Jeremy Bray, 31, says he's relieved he won't have to plead for continued access to the drug, which costs roughly $300,000 annually.
“这是巨大的解脱，”他说，回忆起为治疗而抗争给他和家人带来的代价。
"It's a huge relief," he said, recalling the toll fighting for treatment took on him and his family.
“我真的很高兴能把这一切抛在身后。”布雷患有2型脊髓性肌萎缩症，这种疾病会逐渐剥夺他活动肌肉的能力。目前，他主要只能活动嘴部、部分面部和一根拇指。他的拇指让他能够操作电动轮椅，并使用工作所需的电脑。
"I'm just really happy to put this all behind us." Bray has Type 2 spinal muscular atrophy, a disease that gradually robs him of the ability to move his muscles. Right now, he's mainly limited to moving his mouth, parts of his face and one thumb. His thumb lets him operate his motorized wheelchair and use the computer he needs for his job.
过去几年，布雷一直在游说以获得一种减缓疾病进展的新药，但他遇到了阻力。
Bray has been lobbying the last few years to access a new drug that eases the disease's progression, but he encountered reluctance.
直到2025年，马尼托巴省卫生部长乌佐马·阿萨格瓦拉才说服该药制造商罗氏公司，出于同情理由将药物利司扑兰（商品名Evrysdi）的免费覆盖范围扩大。
It wasn't until 2025 that Manitoba health minister Uzoma Asagwara persuaded Roche, the drug's manufacturer, to extend free coverage to the drug risdiplam — sold under the brand name Evrysdi — on compassionate grounds.
该省希望布雷使用该药物的经历能说服加拿大药物管理局建议将这种治疗用于25岁以上的成年人。该机构认为证据不足，因为该年龄段的人没有参与临床试验，而该省一直依赖这一信息来决定是否提供覆盖。
The province hoped Bray's experience with the drug would convince Canada's Drug Agency to recommend the treatment for adults over the age of 25. The agency has argued there isn't enough evidence because people in that age bracket haven't participated in clinical tests, and the province was relying on that information to determine whether to provide coverage.
经过六个月的治疗，布雷报告说他的声音更强了，面部表情变得丰富，在马尼托巴省里弗斯市担任数据顾问的工作中，在需要休息之前能坚持更长时间。
After six months of treatment, Bray reported a stronger voice, his facial movements becoming expressive, and longer days at his work as a data consultant in Rivers, Man., before needing rest.
然而，布雷在2025年11月得知罗氏将停止免费提供该治疗，于是他询问马尼托巴省政府是否会改变其拒绝立场。
However, Bray found out in November 2025 that Roche would stop offering the treatment for free, so he asked whether Manitoba's government would reverse its refusal.
起初，省政府不肯改变主意。当月，布雷离开阿斯夸格瓦办公室的会议时，泪水涌上眼眶。次日，省长瓦布·基内瓦表示，他被布雷在新闻报道中出现的激情恳求“深深打动”，并表示曼尼托巴省将至少为期一年承担治疗费用。
At first, the provincial government wouldn't change its mind. Tears welled in his eyes as Bray left a meeting at Asagwara's office that month. The next day, Premier Wab Kinew said he was "very moved" by Bray's impassioned plea, as seen in news reports, and said Manitoba would cover treatment for at least a year.
上周，加拿大药品机构发布了一份草案建议，支持扩大对两种治疗脊髓性肌萎缩症药物的公共覆盖，其中包括利斯地平。
Last week, Canada's Drug Agency issued a draft recommendation supporting expanded public coverage for two drugs treating spinal muscular atrophy, including risdiplam.
虽然这些建议不具约束力，且仍需与制造商进行谈判，但阿斯夸格瓦周二通过电话告诉布雷，曼尼托巴省将遵循该机构的更新建议。
While the recommendations aren't binding, and negotiations involving the manufacturer are still required, Asagwara told Bray by phone Tuesday that Manitoba would follow the agency's updated recommendation.
“杰里米已获覆盖。他将能够获得这种药物，”阿斯夸格瓦在一次采访中表示。以布雷的名义，省政府敦促联邦机构审查该药物。
"Jeremy is covered. He's going to get access to that medication," Asagwara said in an interview.
药品机构的新审查 新审查始于冬季，听取了包括布雷在内的脊髓性肌萎缩症患者以及临床医生和其他专家的意见。报告指出，虽然针对成人的广泛证据显示该药物疗效有限，但由于该病罕见且治疗已在部分患者中证明有效，这种情况可能将持续下去。
On Bray's behalf, the province urged the federal agency to review the drug. New review from drug agency A new review started in the winter, hearing input from individuals with spinal muscular atrophy, including Bray, as well as clinicians and other experts.
“这就是曼尼托巴人分享他们的故事所产生的力量，”阿斯夸格瓦表示，并赞扬布雷的倡导。
The report suggested that while widespread evidence of the drug's success is limited for adults, it will likely remain that way because the disease is rare and treatment has already proven to work in some patients.
“当曼尼托巴人分享他们亲身经历的故事，并要求政府与他们合作采取进一步措施时，最终我们可以取得良好结果。”布兰登-索里斯选区保守党议员格兰特·杰克逊表示，他此前曾作为进步保守党省议员代表该地区的布雷，起初觉得在说服政府和官僚机构采取行动时，他们“面对的是一堵墙”。“毅力，我想，才是关键所在，”他说。
“This is the power of when Manitobans share their stories," Asagwara said, crediting Bray for his advocacy. "When Manitobans share their stories about their lived experience and ask for government to work with them to take additional steps, ultimately we can get good outcomes.”Brandon-Souris Conservative MP Grant Jackson, who previously represented Bray as the Progressive Conservative MLA for the area, said it initially felt like they were "up against a brick wall" in convincing governments and bureaucracies to act.
在接受治疗之前，布雷说，他每天醒来都知道“随时可能失去功能”。曼尼托巴省一名男子正在逐渐丧失活动肌肉的能力。一种药物或许能阻止这一进程，但该省不愿支付费用。更多来自曼尼托巴省西南部的报道。多年来，他失去了移动头部、手臂、手和腿部的能力。
"Persistence would be, what I think, made the difference," he said. Prior to being on treatment, Bray said he woke up each day knowing "at any time, I could lose function." A Manitoban is losing his ability to move his muscles. A drug might prevent that, but the province won't pay More stories from Southwest Manitoba Over the years, he lost the capacity to move his head, arms, hands and legs. But now Bray can say with confidence he's on the best possible treatment — and won't lose it.
但现在布雷可以自信地说，他正在接受尽可能最好的治疗——而且不会失去它。
"Maybe the biggest thing is that my mental health has totally turned around over the last year or so.
“也许最重要的一点是，在过去一年左右的时间里，我的心理健康完全好转了。接受治疗让我的家人、我自己以及任何认识我的人都感到真正的安心。”
Being on treatment is a real peace of mind for my family, myself, anybody who knows me."
“很难用语言表达这对我们来说有多么重要。”布雷说，他想感谢那些支持他争取治疗并为他发声的公众。
"It's tough to put into words how meaningful it is to us." Bray said he wanted to thank members of the public who supported his push for treatment and advocated on his behalf.