2026年4月1日 / 美国东部时间早上5:00 / KFF健康新闻
奥利·休珀自蹒跚学步时在寄养家庭中被诊断出神经母细胞瘤以来,就一直在断断续续接受癌症治疗。如今她已经8岁,是一名二年级学生,病情却再次复发。去年年末,她的癌症再次扩散。
奥利的养父母于2020年收养了她,他们原本打算为她报名参加北卡罗来纳州查珀尔希尔北卡罗来纳大学医疗系统的CAR-T细胞疗法临床试验——这种疗法通过基因重排患者的白细胞来帮助对抗癌症。从他们在伊登的家开车到那里需要一个半小时。
她的母亲布里塔尼·休珀称这是奥利的“最后治疗选择”。
但休珀回忆道,今年3月初,北卡罗来纳大学医疗系统的财务办公室告知了他们一个坏消息:该州针对寄养儿童的新保险将不会支付这项治疗的费用。
去年12月,奥利成为全国数十万 enrolled in 寄养系统服务的特殊公共健康保险计划的儿童之一。这类保险属于医疗补助计划(Medicaid),这一联邦与州合作的项目为低收入人群或残障人士承担医疗费用。
8岁的奥利·休珀于2026年3月25日周三在北卡罗来纳州伊登的家中与养父母布里塔尼和杰森合影。奥利自蹒跚学步时在寄养家庭中被诊断出神经母细胞瘤以来,就一直在断断续续接受癌症治疗。——Allison Lee Isley 为KFF健康新闻拍摄
据全国州卫生政策研究院的数据,北卡罗来纳州是全美14个设有此类专属寄养儿童保险计划的州之一。各州的计划细则有所不同,但均旨在扩大寄养系统内儿童以及像奥利这样从寄养家庭被收养的孩子的医保覆盖范围。
然而,正如其他增设此类计划的州一样,北卡罗来纳州的家庭在获取医疗服务时遇到了障碍。该计划于12月1日推出时,数千名原本在医疗补助计划覆盖范围内的医生并未被纳入新的专属保险网络——该计划四年总耗资31亿美元。这使得寄养儿童的监护人和养父母不得不四处打听,要么更换医疗服务提供者,要么更换保险。
在北卡罗来纳州,这项保险计划的纰漏给医疗保健问题平添了一层复杂性。和其他许多州一样,该州眼下也在为国会共和党提出的《一项宏大美丽法案》所预期的医疗补助计划削减而忧心忡忡。此外,医疗补助计划的另一项资金短缺问题还推动了医疗服务提供者报销费率的下调。
德克萨斯州18年前就推出了此类寄养儿童保险计划,近年来该州的寄养家庭也面临着难以在该保险覆盖范围内找到接诊医生的困境。佛罗里达州的研究人员早在2016年就曾报告,该州的计划存在接诊医生不足的问题。
伊利诺伊州的计划因医疗服务获取渠道匮乏引发了美国医疗保险与医疗补助服务中心的调查。研究显示,加利福尼亚州的计划未能为儿童提供充足的心理健康服务。佐治亚州的医疗服务获取问题令州政府官员高度警觉,促使州议会正在推进一项法案,要求将儿童从该计划中转出,重新纳入其他医疗补助计划。
但这类针对寄养儿童的专属保险计划仍在不断推广。全国州卫生政策研究院儿童与家庭健康高级主任卡伦·范兰代根表示,过去五年内已有四个州启动了各自的计划,而且可能会有更多州很快效仿。
医疗补助政策分析师称,仅有少数几个州会公布此类计划的运行数据。因此,目前难以弄清这些计划在推出时遭遇问题的原因,也无法确认它们是否改善了医疗服务的可及性。乔治敦大学儿童与家庭研究中心的研究教授安迪·施奈德表示,这使得这类计划存在风险。
“朝着这个方向推进的各州,如果没有数据支撑,本质上就是在做实验,”施奈德说,“他们把所有鸡蛋都放在了一个篮子里,因此必须密切关注计划的运行情况。”
艰难的推出过程
北卡罗来纳州针对寄养儿童的专属保险计划在推出当天就出现了问题。
该州自动将奥利和约3.2万名其他人员纳入了名为“健康蓝色关怀同行”(Healthy Blue Care Together)的专属计划。北卡罗来纳州官员曾表示,该项目将改善寄养儿童的医疗服务可及性——这些儿童往往有复杂的医疗需求,且经常辗转更换看护环境。
但据多位分享自身经历的寄养家庭反映,他们很快就得知自己的医疗服务提供者并不接受这项保险,许多家庭都在努力争取让孩子的治疗费用被计划覆盖。
北卡罗来纳大学医疗系统是该州规模最大的医疗服务机构之一,拥有近4400名医生,最初并未签约加入州政府的这项保险计划,这也是为何该机构告知休珀,奥利的CAR-T细胞治疗费用将无法被报销。
在家庭们陷入两个多月的不确定状态后,北卡罗来纳大学医疗系统最终于3月中旬与负责运营该计划的北卡罗来纳蓝色十字蓝盾公司达成了协议。
但仍有部分北卡罗来纳州的医生不接受“健康蓝色”保险。
北卡罗来纳州医疗补助项目临时副秘书梅兰妮·布什表示,尽管该办公室认为现有医疗服务提供者数量“充足”,但她的团队一直在敦促“健康蓝色”扩大其服务网络。北卡罗来纳州卫生部门和北卡罗来纳蓝色十字蓝盾公司未回应KFF健康新闻关于新保险覆盖的医生数量的提问。
“我们欢迎符合资质的医疗服务提供者加入,”北卡罗来纳蓝色十字蓝盾公司发言人萨拉·朗说道。
其他问题仍在持续。寄养权益倡导者和儿科医生表示,随着数千份医疗记录被转移到“健康蓝色”管理的全州数据库中,儿童的医生难以追踪患者的病史。家长们还报告了查看健康记录、登录在线门户时遇到的问题,部分家长甚至无法获取处方药。手术被推迟,预约被取消。
“任何医保计划的网络管理都是一个持续的过程,”朗说道。
这一切都给像奥利这样有复杂医疗需求的儿童的监护人增添了繁文缛节和痛苦——而这类儿童正是该计划原本最应该帮助的对象。
积极应对
癌症早已伴随奥利的成长:她从2岁起就与病魔抗争。布里塔尼·休珀回忆道,奥利当时正处于被收养的流程中,就已经开始接受化疗和放疗,随后又进行了两次干细胞移植。
外科医生在她心脏附近的静脉中植入了临时导管,还在她的腹部安置了胃管。随着治疗强度加大,她的头发脱落,皮肤表层脱落,养父母不得不穿着手术服、戴上手套才能靠近她。
“她不记得除了看医生和住院之外的生活,”休珀说道。
奥利的父亲杰森·休珀在女儿早年治疗神经母细胞瘤期间抱着她,奥利从2岁起就患上了这种癌症。——布里塔尼·休珀提供
奥利的胸口至今仍留有用于静脉给药的输液港,她的月度门诊预约很快就要改为每周一次。今年3月中旬的一次急诊中,医生告知休珀,女儿的癌症已经扩散。在身体准备好接受更先进的治疗前,奥利需要先接受更多的化疗。
但在经历了两个多月的不确定后,休珀一家仍感到一丝欣慰。他们正在为往返查珀尔希尔接受CAR-T细胞疗法的行程做准备。即便这意味着奥利未来至少五周还会频繁进出医院,他们依然心怀感激。
可靠的医疗保险对奥利至关重要,“健康蓝色”的负责人表示,他们正在与医生、家长及其他相关方沟通,确保计划顺利运行。奥利的治疗费用高达数百万美元,她的母亲说道,但如果医疗账单能够顺利报销,全家就能专注于奥利的治疗。
“她面临的最大挑战将在试验的最初几个月,”休珀说道,她清楚这种疗法的副作用包括发烧、疲劳和意识模糊。“但我希望之后CAR-T细胞能够发挥作用,对抗癌症,让她能继续拥有活泼好动的童年。”
布里塔尼·休珀和女儿奥利在北卡罗来纳州伊登的家中。——Allison Lee Isley 为KFF健康新闻拍摄
这意味着,他们希望奥利能更多地待在家里,和她的五个兄弟姐妹以及三只家庭宠物狗共度时光,其中最喜欢的是一只名为雷米的边境牧羊犬混血。
休珀格外珍惜女儿的这些珍贵时刻——“做一个孩子,做孩子该做的事”。
KFF健康新闻是一家专注于健康议题深度报道的全国性新闻机构,也是独立健康政策研究、民调与新闻资讯来源KFF的核心运营项目之一。
How an insurance plan for foster kids threatened an 8-year-old’s cancer care
April 1, 2026 / 5:00 AM EDT / KFF Health News
Ollie Super has moved in and out of cancer treatment since she was diagnosed with neuroblastoma as a toddler in foster care. Now 8, the second grader is dealing with it again. Her cancer came back late last year.
Ollie’s parents, who adopted her in 2020, tried to sign her up for a clinical trial using CAR T-cell therapy — which genetically reprograms a patient’s white blood cells to help them fight cancer — at UNC Health in Chapel Hill, North Carolina, an hour-and-a-half drive from their home in Eden.
Her mother, Britany Super, described it as Ollie’s “last option.”
But in early March, Super recalled, UNC Health’s financial office told them the bad news: The state’s new insurance for kids in foster care wasn’t going to pay for the treatment.
In December, Ollie became one of hundreds of thousands of kids nationwide enrolled in a special kind of public health insurance for people served by the foster care system. That insurance, known as a specialized managed care plan, is part of Medicaid, the federal-state program that covers health costs for people with low incomes or disabilities.
Ollie Super, 8, poses for a portrait with her adoptive parents, Britany and Jason, on Wednesday, Mar. 25, 2026, at their home in Eden, N.C. Ollie has moved in and out of cancer treatment since she was diagnosed with neuroblastoma as a toddler in foster care. Allison Lee Isley for KFF Health News
North Carolina is one of 14 states with such specialized foster care plans, according to the National Academy for State Health Policy. The plans differ by state, but each is meant to expand coverage for children in the foster care system — and for kids who were adopted out of it, such as Ollie and her siblings.
Yet, as in other states that have struggled when adding such plans, North Carolina families have faced hurdles obtaining care. Thousands of doctors whose services were covered under Medicaid were not included in the specialized plan — which is costing the state $3.1 billion over four years — when it rolled out on Dec. 1. That left guardians and parents of kids adopted out of the system scrambling to figure out whether they would have to find new health care providers or new insurance.
In North Carolina, the insurance plan’s stumbles have added another layer of complication around health care issues. The state — like many others — is already grappling with uncertainty over expected Medicaid cuts in the wake of congressional Republicans’ One Big Beautiful Bill Act. A separate Medicaid funding shortfall also prompted a push to cut care providers’ reimbursement rates.
Texas, which established its plan 18 years ago, found in recent years that its foster families also had a hard time finding doctors on the insurance. In Florida, researchers for the state reported as early as 2016 that there was a lack of providers accepting its plan.
Illinois’ plan prompted an investigation by the Centers for Medicare & Medicaid Services over a lack of access to care. Research concluded that California’s plan did not provide children with adequate mental health services. Georgia’s access problems alarmed state officials enough to prompt pending legislation calling for children to be removed from the plan and put back on other Medicaid plans.
But such specialized plans for kids in foster care continue to gain traction. Four states have started their own plans in the past five years, said Karen VanLandeghem, the senior director of children and family health at the National Academy for State Health Policy, and she said it’s likely more will adopt them soon.
Only a handful of states publish numbers showing how these programs are faring, Medicaid policy analysts said. It’s therefore difficult to know why they’ve run into rollout problems or whether they’ve improved access to care. That makes the plans risky, said Andy Schneider, a research professor at Georgetown University’s Center for Children and Families.
“The states that are going in this direction, unless they have data to support it, are experimenting,” Schneider said. “They’re putting all their eggs in one basket, so they need to pay close attention.”
Rough rollout
North Carolina’s specialized insurance plan for foster kids experienced problems the day it rolled out.
The state automatically enrolled Ollie and about 32,000 other people in its specialized plan, called Healthy Blue Care Together. North Carolina officials had said the program would improve health care access for foster children, who often have medically complex needs and move frequently.
But foster families quickly began hearing that their health care providers were not taking the insurance, according to several families who recounted their experiences fighting to get their children’s procedures covered under the plan.
UNC Health, a state-run health system that is one of the largest care providers in North Carolina, with nearly 4,400 physicians, would not sign on to the state’s plan initially, which is why it told Super that Ollie’s CAR T-cell treatment wouldn’t be covered.
After more than two months of limbo for families, UNC Health ultimately reached an agreement in mid-March with Blue Cross Blue Shield of North Carolina, which runs the plan.
But some North Carolina doctors still don’t accept Healthy Blue insurance.
Melanie Bush, interim deputy secretary for North Carolina’s Medicaid program, said her office has been pressing Healthy Blue to expand its network, even though it already has what she called an “adequate” number of providers. North Carolina’s health department and Blue Cross Blue Shield did not answer KFF Health News’ questions about how many providers are covered by the new insurance.
“We welcome qualified providers who want to join,” said Blue Cross Blue Shield of North Carolina spokesperson Sara Lang.
Other problems persisted. As thousands of health care records move over to a statewide database managed by Healthy Blue, children’s doctors are struggling to track their patients’ medical histories, said foster care advocates and pediatricians. Parents reported problems seeing health records, finding themselves locked out of online portals. Others couldn’t access prescriptions. Surgeries got delayed. Appointments were canceled.
“Network management for any plan is an ongoing process,” Lang said.
All this meant added red tape and heartache for the caregivers of children like Ollie with complex medical needs — those the plan was intended to help the most.
Gearing up
Cancer has been part of Ollie’s life since she was 2. She was in the process of getting adopted out of foster care when she began chemotherapy and radiation treatments, then received two stem cell transplants, Super recalled.
Surgeons installed temporary tubes in a vein near her heart and a feeding tube in her abdomen. Her hair fell out as the treatment intensified, and a thin layer of skin peeled off, forcing her new family to wear surgical gowns and gloves when they wanted to be close.
“She doesn’t remember life outside of going to doctors and being in a hospital,” Super said.
Ollie’s father, Jason Super, holds her during an early bout of treatment for neuroblastoma, which she’s had since age 2. Britany Super
Ollie still has a port in her chest ready for whenever she needs intravenous medicine, and her monthly doctor appointments are about to become weekly. During an emergency room visit in mid-March, doctors told Super her daughter’s cancer had spread. Ollie will need more chemotherapy before her body is ready for the more advanced treatment.
But the Supers, thrown into uncertainty for more than two months, still feel some relief. They’re preparing for back-and-forth drives for the CAR T-cell therapy treatments in Chapel Hill. And they’re grateful, even if it means Ollie will spend at least five more weeks in and out of a hospital.
Reliable health insurance will be vital for Ollie, and Healthy Blue leaders said they are talking with doctors, parents, and others to make sure the plan is working. Her procedures carry multimillion-dollar price tags, her mother said, but having her bills seamlessly covered allows the family to focus on Ollie’s treatment.
“The biggest challenges for her will be in the first few months of the study,” said Super, who knows the therapy’s side effects include fever, fatigue, and confusion. “But I’m hoping that after that, the CAR T-cells will do their job and fight the cancer and she can continue to have a playful, active life.”
Britany Super and her daughter Ollie at their home in Eden, North Carolina. Allison Lee Isley for KFF Health News
That means, they hope, the girl could be at home more often with her five siblings and the three family dogs, including Remy, a border collie mix who is Ollie’s favorite.
Super relishes those precious moments for her daughter — “being a kid and doing kid things.”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.
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