The Life Saving Effect of Johanna’s Law

Johanna’s Law is named after Johanna Silver Gordon, a dynamic woman and former schoolteacher, who lost her life to ovarian cancer despite being a health conscious woman who visited the gynecologist regularly. Sadly, Johanna did not recognize the early symptoms and warning signs of ovarian cancer until AFTER being diagnosed with an advanced stage of the disease. Lack of symptom recognition contributed to a lengthy —and ultimately lethal — delay in Johanna’s diagnosis. Tragically, Johanna’s story of delayed diagnosis is all too common. Thousands of U.S. women annually are stunned not only by diagnoses of gynecologic cancer, but also learn after the fact that the symptoms experienced in the months prior to their diagnoses were common symptoms of these cancers. The problem is particularly common with respect to ovarian cancer, where a pervasive lack of knowledge regarding symptoms commonly leads to lengthy delays in disease diagnosis. Additionally, women are frequently misdiagnosed with benign conditions before the correct diagnosis is made by a health care professional.

Source: [ Johanna’s Law Alliance for Women’s Cancer Awareness, Sheryl Silver (Johanna’s sister), Founder/President].

Johanna’s Law

The Gynecologic Cancer Education and Awareness Act (P.L. 109-475) was passed by the 109th Congress and signed into law in early 2007. This law provides up to $16.5 million for awareness and education through a national public service campaign that will include written materials and public service announcements.

The passage of Johanna’s Law was required because too many women are diagnosed in later stages of gynecologic cancers; if these women were diagnosed earlier, their chances of survival would be greater. Women with ovarian cancer have a five-year relative survival rate of more than 90 percent if diagnosed in Stage I. Unfortunately, less than 20 percent of ovarian cancer cases are diagnosed in Stage I. The overall five-year relative survival rate for ovarian cancer is 45 percent. Due to the lack of an early screening test for ovarian cancer (however, see Yale Blood Test Detects Early Stage Ovarian Cancer with 99% Accuracy), women and health care providers must be aware of the signs and symptoms of gynecologic cancers to act in the best interests of women.

Legislative History

In 2004, the bill was introduced in the U.S. House of Representativies (House). In 2005, the bill was introduced in the U.S. Senate (Senate). The House held a hearing on the bill in 2006. It was passed by unanimous consent of the Senate in 2006 and signed into law by President George W. Bush in early 2007. The Ovarian Cancer National Alliance (the Alliance) worked to secure the implementation funding of Johanna’s Law through the U.S. Congressional appropriations process. The Alliance requested $9 million to implement Johanna’s Law. In the 2008 fiscal year, this program was appropriated $6.5 million by the U.S. Congress. The Alliance will request the U.S. Congress to fully fund Johanna’s Law program for $10 million in the 2009 fiscal year.

Adoption of the Ovarian Cancer Symptoms Consensus Statement

In mid-2007, a number of medical organizations and related groups agreed upon and released a Consensus Statement listing the primary symptoms of ovarian cancer. These symptoms, long recognized by patients, and scientifically documented in the medical literature, are:

* Bloating
* Pelvic or abdominal pain
* Difficulty eating or feeling full quickly
* Urinary symptoms (urgency or frequency)

A woman who experiences these symptoms persistently for several weeks should consult with her doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.

Often, women and health care providers mistake ovarian cancer for gastrointestinal disorders or early menopause. While symptoms may seem vague, they can be lethal without proper medical intervention. Johanna’s Law provides for an education and awareness campaign that will educate health care providers with respect to, and increase women’s awareness of, this disease.

Source: [Johanna’s Law: The Gynecologic Cancer Education and Awareness Act of 2007, Ovarian Cancer National Alliance website]

Comment: The impetus for adoption of Johanna’s Law can be traced to Sheryl Silver, Johanna’s sister. Sheryl is the founder and president of the Johanna’s Law Alliance for Women’s Cancer Awareness. The adoption of Johanna’s Law should heighten the awareness of women in the U.S. regarding the primary symptoms and warning signs associated with ovarian cancer in the earliest stages of the disease. Sheryl Silver’s perseverance on behalf of the memory of her sister led to the adoption of a law that will undoubtedly save thousands of lives in the future.

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