Co-Founder/Director of SMILEY
In 2004, when I was 30 years old, I was diagnosed with ovarian cancer (Mucinous, Stage Ia) and treated with surgery and chemotherapy. At the time, I knew nothing about ovarian cancer, my son was only 2 years old, and I felt anxiety every day. While dealing with the diagnosis and such uneasy feelings, I was supported and encouraged most by other ovarian cancer patients I met online.
In 2006, one of these ovarian cancer patients said, “My physician says that there is no anti-cancer drug in Japan that would be efficient for me.” In other countries, there were drugs such as Doxorubicin, Gemcitabine, and Topotecan being used to treat ovarian cancer; however, these drugs were not approved for use in Japan. So, Mami Ikematsu and I—with the support of many other ovarian cancer survivors and their families—decided to form the first and only support group specifically for ovarian cancer patients in Japan. And, since not being able to receive treatment takes away a patient’s smile, we called the support group “SMILEY.” We wanted patients to have reasons to smile—to feel more at ease—while facing a serious disease such as ovarian cancer. (Sadly, 2 weeks after SMILEY was formed, Mami Ikematsu died.)
We patients and families considered the time lag between drug approval in other countries and approval for use in Japan to be a severe survival disadvantage for Japanese patients, so we appealed to Japanese parliamentarians and the Ministry of Health, Labor and Welfare to reduce this so-called “drug lag” time. We lobbied and even appealed through mass media to solve this serious healthcare and social problem and to remove this disadvantage. As a result, the Japanese government started reducing the “drug lag” times, and drugs for ovarian cancer, as well as for many other diseases, are developed and approved more quickly, including, for example, the approval of Doxorubicin in 2009 and of Gemcitabine and Topotecan in 2011. SMILEY’s activities caused an increase in the number of drug examiners, and the Ministry of Health, Labor and Welfare held a meeting to promote drug development, resulting in 180 drugs being approved or progressing for development.
Since 2013, SMILEY has participated in World Ovarian Cancer Day and in the awareness and educational events of the Globe-athon to End Women’s Cancers. In 2018, SMILEY supported the Eriko Aotani Patient–Caregiver Symposium at the IGCS Global Meeting in Kyoto. It was an opportunity for many Japanese patients and supporting groups to enhance their knowledge about gynecological cancers and to network.
Through SMILEY, I will continue to initiate and participate in activities that benefit “all ovarian cancer patients,” knowing that such action will give patients reasons to Smile.