The Summers Family

National Health Reform Delivers New Protections for Individuals with Spina Bifida

On Tuesday, March 23, President Barack Obama signed into law the Patient Protection and Affordable Care Act (PPACA, Public Law 111-148), a massive overhaul of the country’s health insurance system that will extend coverage to more than 30 million Americans and dramatically affect how health insurers and plans treat the people to whom they provide coverage. Spina Bifida Association (SBA), collaborating with its partners in the National Health Council, worked for years to ensure that national health reform specifically addressed the needs of individuals living with disabling, chronic, and/or life-threatening conditions, including the estimated 166,000 individuals across the country who live with Spina Bifida. SBA is thrilled that the final bill contains numerous provisions that we have long-advocated have become the law-of-the-land, including specific protections for people with pre-existing conditions.

By the end of this June, high-risk insurance pools will be created to make insurance available to individuals with pre-existing health conditions. By mid-September of this year, insurers will no longer be able to exclude children with pre-existing conditions from coverage under their parents’ insurance, children will be able to stay covered under their parents’ insurance plan through age 26, and lifetime limits on insurance benefits will be prohibited. By the time the law is fully in effect in 2014, health insurers will no longer be able to refuse to sell or renew policies because of an individual's health status – including current medical conditions or health history, genetic information, disability, or other health information – or to exclude coverage for an individual of any age with a pre-existing condition. Insurers will not be able to charge higher rates because of an individual’s heath status or gender, and they will be prohibited from imposing any annual limits on coverage. To learn more about specific patient protections for people with disabilities and chronic conditions please read Health Care Reform: Twelve Key Changes for Americans with Chronic Diseases (PDF)

The health reform bill also contains new programs and funding to support individuals living with disabilities and chronic conditions and makes critical new investments through a Prevention and Public Health Investment Fund focused on improving and protecting the nation’s health through community-based efforts. Also, a new interagency council will be formed to establish a national prevention and health promotion strategy. In addition, the new law increases Medicaid payments for primary care physicians (pediatricians, family physicians, and internists) starting in 2013, raising rates to Medicare levels by 2014; this change should help increase access to health care providers for individuals in the Medicaid program.

These critical changes are cause for celebration, as they should improve the lives of people with Spina Bifida and help promote and protect the public health. However, these new protections do not mark the end of our advocacy efforts; enactment of this law is just the first step in what will be a very long implementation process. Federal agencies will be tasked with putting the provisions of this law into action, and Congress likely will make adjustments in the months and years ahead. SBA will be closely monitoring the law’s implementation and tracking the development of the new programs to ensure that the needs of individuals with disabilities are addressed, and that folic acid awareness and education efforts are incorporated wherever appropriate and necessary. Moreover, SBA will continue to seek annual increased funding for the National Spina Bifida Program continues; the need for advocacy in Congress remains, as each year federal elected officials determine funding levels for Spina Bifida-related initiatives such as research, quality of life programs, and the National Spina Bifida Patient Registry. To learn more about SBA’s advocacy efforts, visit SBA's Advocacy and Public Policy Priorities section.

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