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.

Previously Filed As

MA H1039

Providing insurance coverage for Alfi’s syndrome

MA H137

Providing for insurance coverage for vision screening for children

MA H1015

Providing for certain health insurance coverage

MA H1066

Providing health insurance coverage for scalp and facial hair prosthesis

MA S716

Providing health insurance coverage for scalp and facial hair prostheses

MA H1001

Relative to step therapy and in vitro fertilization insurance coverage

MA H1022

Relative to access to care for Ehler Danlos syndrome patients

MA S680

Relative to insurance coverage for doula services

MA H976

Requiring full health insurance coverage for individuals with vitiligo

MA H3554

Relative to insurance coverage of hearing aids

Similar Bills

MA H1039

Providing insurance coverage for Alfi’s syndrome

VA HB1347

Health insurance; coverage for autism spectrum disorder, cost-sharing requirements prohibited.

VA HB1347

Health insurance; coverage for autism spectrum disorder, cost-sharing requirements prohibited.

VA HB225

Health insurance; definition of autism spectrum disorder.

VA SB321

Health insurance; definition of autism spectrum disorder.

NV SB257

Revises provisions relating to autism. (BDR 38-106)

MS SB2646

Health insurance policies; provide coverage for certain developmental or physical disabilities.

MI HB6126

Insurance: health insurers; required coverage for autism spectrum disorders; modify. Amends sec. 3406s of 1956 PA 128 (MCL 500.3406s).