I never met Johanna, but I had the opportunity to meet her sister, Sheryl, at an Ovarian Cancer National Alliance conference as she was rallying support for a bill she crafted in her sister’s name. Its purpose: create a national campaign “to increase the awareness and knowledge of health care providers and women with respect to gynecologic cancers.”
The legislation would suffer several setbacks over too many years of political sludge. But Sheryl was relentless, determined to honor her schoolteacher sister in a way that made common sense: educate women and doctors about the symptoms so that they are diagnosed earlier when a woman’s chance of survival is better.
Although most gynecologic cancers (ovarian, uterine, vaginal, vulvar and cervical) have a survival rate of 90% when diagnosed early, only 1 in 5 is found before the disease has advanced. That’s why gynecologic cancers claim the lives of 28,000 American women every year. Most of these women could have survived had they been diagnosed earlier. Many would be alive today.
Over 300,000 patient advocates, cancer survivors, and doctors rallied behind Johanna’s Law. We called members of Congress, testified on Capitol Hill, wrote letters, passed emails and bugged anyone who would listen. And Sheryl, refusing to let her sister’s death be in vain, rekindled the bill session after session – locking down sponsors and supporters in a race with the Congressional clock - until finally, five years after it was written, it passed both Houses of Congress unanimously. Johanna’s Law was signed into law in 2007.
It is imperative that women pay attention to their bodies. Johanna Silver Gordon did. Unfortunately, the bloating and other gastrointestinal problems she was experiencing didn’t point her to gynecologic cancer until she was finally diagnosed with Stage III ovarian cancer which took her life. Johanna’s Law seeks to change that scenario.
Every 6.4 minutes, a woman in this country is diagnosed with some form of gynecologic cancer. If you want to help inform them and possibly save their lives, ask your Congressional representative to appropriate the $10 million annually needed to implement the awareness campaign.
I think of Johanna’s Law as a sister’s act of love. It is more than Sheryl’s devotion to her sister’s memory; it is every sister’s right to knowledge that could save her life. We fight for funding every year for Johanna’s Law so that my sister and yours will know more than Johanna knew about gynecologic cancer. And we will not stop until every sister has the opportunity to survive.
To learn more about Johanna’s Law and which 46 Senators and 114 Representatives sponsor it, go to: http://capwiz.com/ovarian/issues/bills/?bill=7901861 (Senate) and http://capwiz.com/ovarian/issues/bills/?bill=13601731 (House)
Add a Comment3 Comments
This is a very inspiring post. I had no idea that only 1 in 5 gynecological cancers is found before the disease has advances. For those who are interested in writing their senators and representatives, the links Annette included have a spot for you to put in your zip code, and a page will come up with your senators' or representatives' names on it and a place for you to write about your concerns. It's a very easy way to make your desires known. In the grand scheme of an annual budget, $10 million is small compared to the difference it could make in women's lives.
September 21, 2009 - 5:48pmThis Comment
Thank you, Diane. Some day they will able to cure these awful diseases but in the meantime, we need to help eachother with education and empowerment. Women helping women...it's a good thing.
September 21, 2009 - 6:37pmThis Comment
Great article.
September 21, 2009 - 7:10amThis Comment