Supreme Court Announces Healthcare Reform Decision

On March 26, 2012, the United States Supreme Court began hearing arguments contesting the constitutionality of the Patient Protection and Affordable Care Act (PPACA). On June 28th, the Supreme Court announced its decision regarding PPACA. In a 5-4 decision, Chief Justice John Roberts authored an opinion, which was joined by Justices Breyer, Ginsburg, Kagan and Sotomayor, that upheld the constitutionality of the individual mandate. The Supreme Court also ruled that the Medicaid expansion is constitutional, but that the federal government cannot withhold existing Medicaid funding for states as punishment for states that do not comply with Medicaid expansion requirements.

Some of the provisions within the Affordable Care Act that are favorable to individuals affected by HD, as well as other rare and chronic diseases include:

  • No ban on pre-existing conditions
  • Ban on policy rescission, or the ability of the insurance company to cancel your insurance policy.
  • Elimination of lifetime caps
  • Guaranteed issue and renewal
  • Minimum insurance coverage standards
  • Addressing the “Donut Hole,” the gap in coverage for prescription drugs for people on the Medicare, Part D program

The Huntington’s Disease Society of America believes that the Supreme Court’s decision to reject challenges to the Patient Protection and Affordable Care Act of 2010 (ACA) and to uphold the law as constitutional will provide much-needed protections for the Huntington’s disease community. HDSA participated in a number of coalitions, including the National Health Council (NHC), NORD, and the Genetic Alliance, to ensure that the needs of the HD community were not forgotten in the healthcare debate.  As a member of the National Health Council, HDSA joined hundreds of health organizations to urge the Supreme Court to uphold the constitutionality of PPACA.

Though PPACA is certainly not perfect, and will likely evolve over time, it does offer a number of vital new protections to patients. We can now move forward to ensure that these provisions are fully implemented to meet the needs of the Huntington’s disease community. HDSA will continue to educate the HD community and to provide resources and support to individuals and families affected by HD through our 45 Chapters, our 21 Centers of Excellence for Family Services, our 37 social workers, and our more than 160 support groups so that the HD community can take advantage of this monumental opportunity. We will also continue to be involved in the regulatory process as the states establish Essential Health Benefits and Insurance Exchanges. For the full list of changes and protections included in the Health Care Reform law, visit

 We encourage the HD community to follow what is happening in your state.  Each state must choose which type of benchmark insurance plan it will use to create the Essential Health Benefits model for their residents. Click here for information about what’s happening with healthcare reform in your state.