By Nancy Roach, the Founder of C3 and Chair of its Board of Directors
A National Cancer Institute (NCI) working group has developed recommendations about how to engage advocates effectively in NCI research activities. The recommendations are open to public comment until November 30, 2009. Rather than go into detail about the recommendations, I will explain from my personal experience why I feel they are important and present C3’s feedback. Read the rest of this entry »
Nancy Roach is the Founder of C3 and Chair of the Board of Directors.
On September 22, I participated in a meeting that looked at some of the profound implications of the growing amount of publicly-available data, and grappled with questions around reporting research results using this data. The day’s agenda was titled “Interpreting and Communicating Clinical Data in the Public Domain,” and the meeting was convened by the FDA Clinical Trials Transformation Initiative (CTTI).
The meeting delved into a lot of detail:
At the end of the day, my personal conclusion was that meta-analyses will be used in the future to make health care recommendations, and that strong guidelines are critical. The meeting results are still being processed, so no formal recommendations have occurred yet. Read the rest of this entry »
The federal government issued new rules on October 1 protect individuals against having genetic information used unfairly to raise health insurance rates, deny health insurance, or limit coverage because of pre-existing conditions.
As part of the implementation of the Genetic Information Non-Discrimination Act (GINA), the Departments of Health and Human Services, Labor, and Treasury published the new regulations in the Federal Register, providing for a comment period before they become final.
In addition, the Office for Civil Rights in the Department of Health and Human Services proposed changes to the Health Insurance Portability and Accountability Act (HIPAA) to clarify that genetic information is health information. As such, insurance companies cannot use or disclose genetic information to compute premiums, deny coverage, or deny benefits because of pre-existing conditions. Penalties for violating the HIPAA Privacy Rules range from $100 to $50,000 for each violation. Read the rest of this entry »
Catherine Knowles is C3′s new Director of Policy
The health care reform debate continues. Last week, the Senate Finance Committee discussed Senator Baucus’s proposal and considered hundreds of amendments. The Committee will hold a final vote on the proposed bill later this week. This will allow the Congressional Budget Office (CBO) time to complete its analysis of the bill and provide a final cost estimate. After the Finance Committee has approved the bill, it will be combined with the bill from the Senate Health, Education, Labor and Pensions Committee before it is scheduled for a vote on the floor by the full Senate.
C3 has been closely following the various health reform proposals introduced in Congress, because access to care is critical to preventing, treating and beating colorectal cancer. Please feel free to share your thoughts with us by leaving comments below.
Continue reading for more information on some of the amendments adopted by the Senate Finance Committee that C3 thinks are important for people living with colorectal cancer.
C3:Colorectal Cancer Coalition welcomes Catherine Knowles as its new Director of Policy. She joins the C3 staff on September 21.
Before coming to C3, Catherine was Legislative Counsel to Congresswoman Kay Granger of Texas where she had responsibility for health care issues in addition to matters involving social security, education, labor, and small business. Read the rest of this entry »
Together we are Strong
