The Affordable Health Care Act and Sickle Cell Families

Affordable Health Care for America Act

Affordable Health Care for America Act

In the United States, the Affordable Care Act (ACA) has dramatically improved the health insurance options for families with sickle-cell disease. This is the first of three articles describing how the ACA affects families with sickle cell disease.

Previously, numerous barriers prevented families with sickle cell disease from obtaining insurance coverage for the necessary treatments. Sickle cell disease has always been a “pre-existing condition” due to the genetic nature of the disease. However, the law specifically requires most health insurers to cover pre-existing conditions (such as sickle-cell disease) at the same price as other similar families. Families cannot be excluded from health insurance coverage due to one or more family members having sickle cell disease. This rule applies to most employer-provided health insurance plans, as well as plans purchased by families.

The Health Insurance Marketplace on Healthcare.GOV offers a variety of plans from private insurers for those who are not offered a health plan from an employer, and are not covered by Medicaid, Medicare, or the Veterans Administration. Families have choices about which Marketplace-based plans to purchase, based on their treatment needs, cost of insurance, and annual deductable (the amount paid by the family before the insurance begins the pay all or part of the costs). Depending in which plan is selected, the family may also be able to choose from plan-specific lists of doctors and health care providers.

All plans must provide some coverage for outpatient visits, emergency care, hospitalization, drugs, and laboratory work. However, the specific treatments covered by each plan may vary. Families should verify which plans include insurance coverage for medically proven sickle-cell treatments, such as:
sickle-cell crisis care, maintenance therapies, blood transfusions, bone-marrow transplants, pain management, and prescription drugs.



The ACA was passed by Congress, then signed into law by President Obama on March 23, 2010. The Supreme Court upheld the law on June 28, 2012. Use the web site “www.Healthcare.GOV” to obtain the most reliable information about the ACA.

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