The National Organization for Rare Disorders (NORD) has issued guidance regarding the potential adverse effects of upcoming Medicaid work requirements on approximately 30 million Americans with rare medical conditions.

美國罕見疾病組織 (NORD) 已發布指引，針對即將實施的 Medicaid 工作要求可能對約 3,000 萬名患有罕見疾病的美國人造成潛在不利影響。

The regulatory framework scheduled for implementation by January 1, 2027, mandates that able-bodied recipients aged 19 to 65 complete 80 hours of verified community engagement monthly to maintain eligibility. While NORD notes that 92 percent of recipients currently meet employment or exemption criteria, there is significant concern that administrative complexity may precipitate the loss of coverage for eligible individuals. This tension exists within a broader fiscal context where legislators are attempting to reconcile federal expenditure reductions with the maintenance of healthcare access.

預計於 2027 年 1 月 1 日實施的監管框架規定，19 至 65 歲且身體健康的受助者每月必須完成 80 小時經核實的社區參與活動以維持資格。雖然 NORD 指出目前 92% 的受助者符合就業或豁免標準，但仍有重大擔憂認為行政程序的複雜性可能會導致合資格個體失去保障。這種緊張局勢存在於更廣泛的財政背景中，立法者正試圖在削減聯邦支出與維持醫療保健接獲之間取得平衡。

Given that rare diseases affect nearly 10 percent of the population and public programs subsidize over 70 percent of associated adult hospitalizations, the reliance on Medicaid is substantial. The necessity for specialized, often distant, clinical expertise renders these populations particularly susceptible to systemic disruptions. Consequently, the intersection of funding modifications and work mandates may disproportionately affect those with the most limited healthcare alternatives.

鑑於罕見疾病影響近 10% 的人口，且公共計畫資助了超過 70% 相關的成年人住院費用，對 Medicaid 的依賴程度極高。由於需要專業且通常距離遙遠的臨床專業知識，使得這些族群特別容易受到系統性干擾的影響。因此，資金修正與工作要求的交集，可能會對醫療替代方案最有限的人群產生不成比例的影響。

Following the anticipated release of Centers for Medicare and Medicaid Services (CMS) guidance by June 1, state-level regulatory activity is expected to increase. NORD posits that the discretion granted to states regarding the operationalization of exemptions and verification frequency could lead to disparate outcomes. To mitigate these risks, the organization advocates for the utilization of the full implementation timeline, the adoption of broad exemption definitions, and the adherence to minimum federal verification frequencies. Furthermore, NORD highlights a deficiency in current exemption frameworks regarding the 53 million family caregivers, many of whom balance employment with significant caregiving obligations without formal disability determinations.

隨著聯邦醫療保險和醫療救助服務中心 (CMS) 預計於 6 月 1 日發布指引，州級的監管活動預計將增加。NORD 認為，州政府在豁免權的操作化和核實頻率方面所擁有的裁量權，可能會導致不一致的結果。為了降低這些風險，該組織主張利用完整的實施時間表，採取寬泛的豁免定義，並遵守聯邦最低核實頻率。此外，NORD 強調目前的豁免框架對於 5,300 萬名家庭照顧者有所欠缺，其中許多人在沒有正式身心障礙認定的情況下，必須在就業與沉重的照顧義務之間取得平衡。

State regulators now face the task of balancing federal mandates with the protection of medically vulnerable populations prior to the 2027 deadline.

州級監管機構目前面臨的任務是，在 2027 年截止日期前，平衡聯邦強制要求與保護醫療弱勢族群之間的關係。