Demand to be heard

Yesterday morning 180 ovarian cancer advocates walked the three blocks from the hotel where they have been meeting for the 16th Annual Ovarian Cancer National Alliance Meeting to Capitol Hill where they met with their representatives.The women come from across the country and include survivors, mothers, sisters, husbands, aunts, friends and health care professionals. They asked for support for the Cancer Drug Coverage Parity Act (HR1801), which will require "any health plan that provides coverage for cancer chemotherapy treatment to provide coverage for orally administered anticancer medication at a cost no less favorable than the cost of IV, port administered, or injected anticancer medicine." Oral chemotherapy drugs are increasing in number and it's expected they will outnumber other forms of treatment in the coming decade. Twenty-four states and the District of Columbia have already passed oral chemotherapy parity bills, but they do not affect all health plans (Oral Parity Update 2013: State Update).They also asked for $20 million in funds for the Ovarian Cancer Research Project. This project, which is housed in the Department of Defense, allows for what the alliance calls "high-risk high-reward research" that other federal agencies do not have the flexibility to engage in. Already, this project has delivered a new animal model to learn about ovarian cancer, a new treatment using nanoparticles, the discovery of a compound that potentially inhibits cancer growth, and other important information.The ovarian cancer community can't help but compare itself to the breast cancer cause because they have watched as the mortality rate for ovarian has increased while breast cancer mortality has declined. Around 22,000 women will learn they have ovarian cancer this year. Around 15,000 will die. The numbers are not as dramatic as breast cancer, but the percentages speak volumes. Seventy percent of ovarian patients will die from their disease, 25 percent of those diagnosed will die in the first year after diagnosis. They want their lawmakers to know this is not acceptable – and that they vote. You don't have to go the Hill to make an impact on ovarian cancer. You can do it in your community by advocating for yourself and mentoring newly diagnosed women.As one survivor pointed out: There has been progress in disease-free survival but the numbers above have not changed significantly since the Eisenhower administration.

Oncology nurse Robin Cohen, Philadelphia; Diane Paul, 20-year survivor advocate, Brooklyn, NY; Peggy Castilho, advocate of Lisa Loonstyh, Philadelphia; Marie Loonstyh, mom of Lisa who died at age 24, Philadelphia; Liz Daley, mother supporting daughter Bre Tipps, Grand Saline, Texas; Michele McAndrews, aunt of Lisa, Philadelphia; Diane Wilson, supporter of Bre Tipps, Grand Saline, Texas; Bre Tipps, diagnosed at age 26, Grand Saline, Texas.

Marie Loonstyh of Philadelphia, whose daughter Lisa died at age 24 from ovarian cancer.