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CHD and the Law: Lessons from our Past

Jan 27

Posted by: ACHA
1/27/2014 11:35 AM  RssIcon

By Michael Pernick

This blog series features stories involving congenital heart disease and the law. The blog posts may discuss contemporary or historical court decisions, laws or regulations, or other legal issues that relate to CHD. These posts are purely for entertainment and educational purposes and are not legal advice. Any opinions expressed in this series of posts are solely those of the author and do not represent the Adult Congenital Heart Association.

I’m writing today about one of the first times Congress discussed the importance of providing support to individuals with congenital heart disease. But before I get into that, some background…

In the halls of Congress, the process of a bill becoming a law is incredibly complex and has many steps. One of the steps is the creation of the “committee report.” This report, written by the members of a specific committee (usually their staff), serves as an “explanation” of a bill and explains the committee’s thought process and rationale for passing that particular bill. Although committee reports are not actually part of the legislation (and are not voted on by the committee), they are part of the official record and can be extremely important; in fact, such reports are frequently cited by courts as they attempt to decipher the intent of laws.

In 1963, Congress was debating a new law intended to improve healthcare for children (the focus was childhood mental health). This bill would be the last bill that JFK signed before his death. The bill was primarily a budgeting bill, granting millions of dollars to various health programs and initiatives, most of which were designed to combat mental health problems in children. The bill didn’t really get into specifics, but the committee report issued by the Senate Finance Committee in October of 1963 shed light on the motivations behind this bill. And when I read the report, my jaw dropped—this committee report was not only one of the first official Congressional documents to talk about CHD, but it argued for increased funding for programs to provide medical services to children with CHD.

The committee report noted that in 1961, the Federal Government provided $25 million in funding for medical services for 375,000 children suffering from a variety of serious diagnoses, including CHD—27% of these children had “congenital malformations,” according to the report. The report argued that the current funding level was inadequate, and called for increasing the annual funding for these programs to $50 million.

Additionally, the report talked about the need for funding “research projects.” The bill authorized $8 million per year for projects that promised to contribute to the advancement of a variety of health programs, including services for children with CHD.

On October 23, 1963, President Kennedy signed the bill into law, and the federal government began to increase funding levels for these programs, as well as the research projects used to expand our knowledge of a variety of health issues impacting children, including CHD.

It is amazing to think that although medical technology has advanced so much over the last 50 years, we still face many of the same issues that we did in the 1960s. We still have far more to learn, especially when it comes to adults living with CHD. The government has recently taken steps to ensure all Americans—even those with pre-existing conditions—can receive quality, affordable healthcare. In fact, the Congenital Heart Futures Act was recently enacted as part of the healthcare reform, which provided increased research and surveillance to help us learn more about CHD. Despite these promising efforts, there are still far too many Americans with CHD that fall out of lifelong care specifically tailored to their needs. Perhaps we can take some lessons from our past, and find new and innovative ways to help Americans with congenital heart defects live long and healthy lives.

This blog post refers to S. Rep. No. 88-551 (1963).

Michael Pernick was born with tetralogy of Fallot and grew up on Long Island, New York. He is currently a second-year student at NYU School of Law. He attended college at Wesleyan University and worked for several years on political campaigns and issue advocacy campaigns in New York, Connecticut, and Boston.

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