Massachusetts 2025-2026 Regular Session

Massachusetts House Bill H1189

Introduced
2/27/25  

Caption

Providing insurance coverage for Alfi’s syndrome

Impact

The proposed legislation is positioned to have a significant impact on existing insurance frameworks in Massachusetts. By ensuring that coverage for Alfi's syndrome is provided without annual or lifetime limits that are less than those applied to physical conditions, the bill seeks to enhance access to necessary medical services for affected individuals. This could lead to improved health outcomes as individuals receive more comprehensive and timely interventions tailored to their syndrome's complexities.

Summary

House Bill 1189, introduced by Representative Natalie M. Higgins, aims to provide comprehensive insurance coverage for the diagnosis and treatment of Alfi's syndrome, also known as 9p deletion syndrome or monosomy 9p. The bill amends several sections of the General Laws in Massachusetts to mandate that insurance policies cover a range of medically necessary services for individuals diagnosed with this genetic condition. These services include habilitative and rehabilitative care, pharmacy care, psychiatric and psychological care, as well as therapeutic care provided by licensed professionals.

Conclusion

Ultimately, House Bill 1189 represents a crucial step towards addressing the unique needs of individuals with Alfi's syndrome by mandating equitable access to necessary healthcare services. As discussions advance, stakeholders will need to navigate the potential fiscal challenges while emphasizing the importance of adequate support for this vulnerable population.

Contention

While the bill is expected to garner widespread support from advocacy groups and affected families, there may be concerns raised by insurers regarding the financial implications of expanded coverage requirements. The provision allowing insurers to apply for a three-year exemption based on cost assessments may also prompt debate about the sustainability of such measures in the face of rising healthcare costs. Critics may argue that such exemptions could undermine the bill's overall intent by enabling insurers to delay or reduce coverage obligations for rehabilitative services.

Companion Bills

No companion bills found.

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