ONS Connect - June 2008 - (Page 19)

CAPITOLCONNECTION Long-Standing ONS Health Policy Priority Becomes Law [By ilisa Halpern Paul, MPP, ONS Health Policy Associate] he Genetic Information Nondiscrimination Act (GINA)—a top priority for ONS—passed the House and Senate in late April and subsequently was signed into law by President Bush on May 21. GINA bans health plans, insurance companies, and employers from requiring people to undergo genetic testing and prohibits their use of genetic information to deny individuals coverage. Since the mid-1990s, ONS has advocated that federal legislation be enacted to protect individuals from having their genetic information used in an adverse manner. As part of its long-standing advocacy efforts around this policy proposal, ONS submitted testimony on the importance of such protections to Congress and the Secretary’s Advisory Com- T mittee on Genetics, Health, and Society; sent correspondence to Congress urging that the bill be enacted; and issued calls to action asking ONS members to contact their elected officials in support of the measure. ONS has long been concerned that the absence of GINA-like federal protections leaves individuals who might benefit from intensive cancer predisposition screening, preventive, and riskreduction services at risk for discrimination. ONS members report that the fear of discrimination adversely affects care-seeking behavior, and research has shown that individuals choose to forego genetic testing because of worries such information will be misused by their health plans and employers. GINA’s safeguards will ease people’s minds and help facilitate the provision of genetic testing and any Ilisa Halpern associated dis- Paul, MPP ease prevention or risk-reduction care. As such, ONS commends Senators Edward Kennedy (D-MA) and Olympia Snowe (R-ME) and Representative Louise Slaughter (D-NY) for their leadership on this issue and their persistent efforts to have it become law. To view a letter ONS recently sent to Senator Kennedy voicing support for GINA, visit www.onslac.org. ✱ Intercultural Cancer Council Issues Cancer Disparities Report In conjunction with the Intercultural Cancer Council’s (ICC’s) 11th Biennial Symposium on Minorities, the Medically Underserved, and Cancer, the ICC Caucus released a new report, “From Awareness to Action: A Renewed Call to Eliminate the Unequal Burden of Cancer,” that provides realistic goals for helping racial and ethnic minorities, those living in rural areas, older adults, and the poor, who remain at greatest risk for developing and dying from cancer. The report finds that certain Americans remain largely invisible to the healthcare system and are the least likely to have access to quality cancer care at all points in the process—from screenings and diagnosis to access to state-of-the-art cancer therapies and end-of-life palliative care. Specifically, the report reveals a widening gap in cancer care among Native Americans and Alaskan Natives and those living in the outer islands of Hawaii, Guam, Samoa, and other Pacific Islands, who now have cancer incidence and death rates similar to third-world countries. The report also finds that many poor Caucasians have cancer diagnosis rates as high as or higher than those for ethnic minority groups most affected by the disease. ICC also issued a 12-point action plan to address the disparities and provide vulnerable populations increased access to cancer prevention, screening, and treatment. For more information, visit www.icc network.org. June 2008 ONS CONNECT 19 http://www.onslac.org http://www.iccnetwork.org http://www.iccnetwork.org

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ONS Connect - June 2008 Contents Editor's Note Just In They Have a Dream A Year in the Life—Month Six Web Connect Capitol Connection Notice Nursing Now Caregiver Care Manage Skin Toxicities Associated With EGFR Inhibitors Blood Test for Ovarian Cancer May Be 99 Percent Accurate Calendar of Events Working For You Staying On Top

ONS Connect - June 2008

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