The passage of the Patient Protection and Affordable Care Act (ACA) in 2010 signaled a time of promise for those affected by bleeding disorders. The state marketplaces (exchanges) and potential expansion of state Medicaid programs meant that many in our community would have healthcare coverage options for the first time. No longer would they have to choose their careers or states of residence based on their healthcare needs.
With great change come obstacles and bumps in the road. Many of the market reform provisions contained in the ACA immediately affected members of our community. The removal of lifetime caps from insurance plans and the ability of adult children up to age 26 to remain eligible for coverage under their parents’ plan greatly benefited people in our community. Another big win for those with bleeding disorders was the ACA’s provision that insurers are no longer permitted to deny coverage to applicants due to pre-existing conditions.
However, other promising changes were revised or delayed. For example, the final version of the ACA required states to expand their Medicaid programs, yet the Supreme Court later ruled that the federal government could not mandate expansion. Instead, states should have the option to expand.
While not all Americans approve of the ACA, one thing that everyone seems to agree on is that choosing the health plan that is right for you is still confusing. NHF’s public policy team continues to identify opportunities to educate the community about the various coverage options available. (See “Charting Your Course.”) Those with bleeding disorders have many resources to turn to with questions. The social worker at your hemophilia treatment center can help, as can your local chapter and your national organization.
NHF offers several online resources to help you navigate the market. Check out the “Personal Health Insurance Toolkit,” which can be downloaded on our website: hemophilia.org/Advocacy-Healthcare-Coverage/Advocacy-Tools-Resources/Personal-Health-Insurance-Toolkit. And find out how to get involved with our ongoing advocacy efforts at: hemophilia.org/advocacy.
Remember: You are not alone. Help is a phone call or email away. NHF’s public policy team is here to help you. Reach us by email or phone: [email protected] or 212.328.3700.
Michelle Rice is vice president for public policy and stakeholder relations at the National Hemophilia Foundation.