Comment from Tenenbaum, Cara, Ovarian Cancer National Alliance

Ovarian Cancer National Alliance Public Comment: Revised Medical Criteria for Evaluating Malignant Neoplastic Diseases Introduction According to the American Cancer Society, 21,650 American women in 2008 will be diagnosed with ovarian cancer, and 15,520 will lose their lives to this terrible disease. Ovarian cancer is the deadliest gynecologic cancer and the fifth leading cause of cancer death among women in America. Currently, more than half of the women diagnosed with ovarian cancer will die within five years. The Ovarian Cancer National Alliance is a survivor-led national umbrella organization with state and local groups, representing grassroots activists, women's health advocates and health care professionals. The Ovarian Cancer National Alliance submits this testimony as a patient advocacy group dedicated to conquering ovarian cancer. Social Security Impairments The Social Security Administration has created a Listing of Impairments which describe “for each major body system, impairments that are considered severe enough to prevent a person from doing any gainful activity.” These impairments deem the beneficiary disabled, under the law. Currently, women with advanced ovarian cancer or a recurrence have an “impairment” under Social Security Administration regulations. The current regulations also include listings for “ovarian cancer with ruptured ovarian capsule, tumor on the serosal surface of the ovary, ascites with malignant cells, or positive peritoneal washings.” The proposed regulations remove the latter part of the listing. The Ovarian Cancer National Alliance urges the Social Security Administration to retain the current definition of impairment for women with ovarian cancer. Women with ruptured ovarian capsule, ascites with malignant cells, or positive peritoneal washings are, according to FIGO staging, in Stage IC. Fewer than 20 percent of women with ovarian will be diagnosed in Stage I, and more than 90 percent of those women will be alive five years after their diagnosis. Despite their better prognosis, when first diagnosed women with Stage I ovarian cancer may undergo, like all women with ovarian cancer, invasive surgery and chemotherapy. This treatment, whether given to women in Stage I or Stage III, substantially limits women’s ability for gainful activity. While women diagnosed in Stage I may receive a shorter course of chemotherapy, this is not the case for all of those women. Just as it is important to treat women with an initial diagnosis of ovarian cancer equally, any woman who has a recurrence, whether diagnosed in Stage I or Stage IV should be treated equally. Once a woman recurs, initial stage at diagnosis no longer influences the outcome of the disease. Therefore, these women, regardless of their initial stage at diagnosis, should retain the ability to apply for disability due to their recurrence. The side effects of chemotherapy can be severe and long lasting. Women who have chemotherapy induced disability, for example, eyesight loss, can apply for disability based on the side effect, rather than the original disease state. Women with Stage I ovarian cancer must also be able access this support for side effects from treatments. In order to receive Social Security benefits, one must reapply continuously. Due to this process, it is unlikely that those who are no longer eligible for Social Security, whether originally diagnosed in Stage I or Stage IV, will receive Social Security benefits needlessly. Women with ovarian cancer will have a five month waiting period for those seeking aid under Title 2. After this waiting period, women will be on disability for two years, before they are eligible for Medicare. Any delay in aiding these women, is costly to them and their families. Women with Stage I and Stage III ovarian cancer are indistinguishable in many important ways. First, these women will undergo the same treatments, and suffer the same disabling effects. Secondly, these women are still at high risk of recurrence. For these reasons, we do not believe that women with Stage I ovarian cancer should be treated differently than women with more advanced ovarian cancer. The Social Security Administration has provided the necessary safeguards to prevent fraud and abuse. We, again, urge the Social Security Administration to retain the current definition of impairment for women with ovarian cancer.