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Ovarian cancer advocates gather on the hill

BY Kathy LaTour
PUBLISHED July 13, 2013
Kathy LaTour blog image
For the more than 300 women and men at the 16th Annual Ovarian Cancer National Alliance (OCNA) meeting in Washington, D.C. this weekend, teal is the color and a demand for research dollars and oral chemotherapy parity is the message. The voices of these women, many of whom live with recurrent disease, are strong. They are no longer playing second fiddle to their big sister breast cancer, and, now that many more are surviving, they have that passion that the breast cancer movement had 20 years ago. The two diseases are also coming together says OCNA Executive Director Calaneet Balas, who points to BRCA 1 an 2, which often mean a woman's risk is for both breast and ovarian. In September, which the group is also working to have recognized as Ovarian Cancer Awareness Month, OCNA will release the Top to Bottom campaign. Top to Bottom says it's about both breast and ovarian, Balas says. The campaign from women's lingerie store Belabumbum includes panties, tanks and other pieces using the teal and pink of the two diseases. Balas says the message is that we are all in this together, Top to Bottom. Balas will be with the 180 women and men from the conference who will be walking the three blocks from the hotel to the Capitol Hill where they will meet with their congressional members (and their aids) to tell their stories. Despite the overview of advances in ovarian treatment, Balas says, the reality is that 1 in 4 women diagnosed with ovarian cancer still die in the first year. Not acceptable and neither is the $120 million devoted to ovarian research, far below other solid tumor research dollars. As Dr. Robert Coleman from MD Anderson Cancer Center in Houston told the group during his overview of treatment advances, research is the answer to a cure for ovarian cancer, which is often diagnosed later than it should be due to symptoms that can be mistaken for a number of other issues. And we all know, research requires money, which is available through the Department of Defense funds. NOAC wants more of those funds. They also want oral chemotherapy treatments to be covered by insurance in all the states. A number of states have already come on board with this issue as the number of chemotherapy drugs that can be taken orally at home increases monthly. What they want to see is the federal government making the decision that they be paid for in the same way that IV chemo is paid, a decision that will automatically take place in all states if the federal government says so. You can help this organization. First, sign up to be an advocate Second, call your congresspeople and tell them your story and that you want what NOAC wants. You can find your congressperson. Now you can go to their website and send a message. The advocates will be on the hill on Monday. Do it now so you enhance their messages. I'll be keeping you posted on what's going on throughout the weekend. Forward my blog to those who you know can make an impact. They don't have to be ovarian patients or survivors because we know that increased funding for ovarian will result in knowledge that will help us all. 1 in 4 women dying the year they are diagnosed with ovarian cancer. Not acceptable.
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