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National Comprehensive Cancer Network

Educational Events & Programs

Patient Advocacy: Health Care Reform in 2013 and Beyond, November 2013

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On March 23, 2010, the Affordable Care Act (ACA) was signed into law. Although the date for full implementation of most provisions of the law is January 1, 2014, the ACA has already led to progress toward expanded coverage of the uninsured; improved access and better care delivery models; broader access to community-based long-term care; and more integrated care and financing for beneficiaries who are dually eligible for Medicare and Medicaid. Many states are moving forward with building new health insurance marketplaces where people will have access to health insurance plans. States are making critical decisions about how insurers will participate in the exchanges, what types and how many plans will be offered, and what types of consumer assistance will be available to help people enroll in coverage. States are also building the IT infrastructure for the exchanges to be ready when open enrollment begins on October 1. To help citizens sign up for health insurance in the exchanges, the Obama administration is providing $54 million to hire and train people to help consumers navigate the new marketplaces.

Beginning on January 1, 2014, the ACA requires that all non-grandfathered individual and small group health insurance plans sold in a state, including those offered through an exchange, cover certain essential health benefits (EHBs). As of today, many plans offered in the individual and small group markets lack access to key benefits such maternity services and mental health service coverage. The definition of essential health benefits varies inherently by stakeholder group with each group identifying services that are of utmost importance to them. While there may be a federal definition and standard of essential health benefits, patients with cancer may have different needs that are not met by this definition.

Despite the passage of the Affordable Care Act more than three years ago, many questions remain for providers, industry, and particularly patients. A March 2013 poll by the Kaiser Family Foundation shows that two-thirds of the uninsured and a majority of Americans overall say they have too little information to know how the Affordable Care Act will affect them. The survey also finds that the public is not tuned into decisions states are making today about whether to expand their Medicaid program under the law and how to establish the insurance exchange marketplaces. Additional lingering questions remain – how will people get insurance and who will be responsible for paying for those benefits? Will people continue to access insurance through employers or will employers force their employees into the exchanges? How easy will uninsured people find accessing the exchanges and government subsidies to gain coverage? Will cancer patients be able to find plans they can afford that cover the services they actually need?

On November 22, 2013, NCCN convened an invitation-only oncology patient advocacy summit to bring together oncology patient advocacy groups, patients, providers, payors, policy-makers, congressional staffers, industry, and employers to review and discuss the implementation of certain aspects of the Affordable Care Act and their effects on patients with cancer and their caregivers. Topics for review and discussion include the definition of essential health benefits and the impact on cancer patients, state health insurance exchanges, access to different types of insurance (Medicaid, employer-sponsored, exchanges), and new care models.

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