Policy & Advocacy News

NHI Seeks Applications for the Council of Public Representatives (COPR)

The Director of the National Institutes of Health (NIH) is seeking applicants to fill appointments to the Director’s Council of Public Representatives (COPR). Applications are due October 31, 2005 and are available online at http://copr.nih.gov/application.asp. New members will be appointed in April 2006.

The COPR advises the NIH Director on cross-cutting issues related to medical research and health issues of public interest that ultimately promote individual, family, and community health. Examples of such broad issues the Council has been invloved with include public trust in the research enterprise, public input and participation at the NIH, enhancing public awareness and education about NIH, clinical trails recruitment issues, and aspects of the NIH Roadmap, such as reengineering the clinical research enterprise.

The COPR consists of up to 21 individuals who are selected from among the diverse communities that benefit from, and have an interest in, NIH research, programs, and activities. Members typically serve on the COPR for three years. To be considered for the COPR, applicants must have some interest in the work of the NIH and must be in a position to communicate regularly with the broader public about COPR and NIH activities. Applicants must also be willing to fully participate in biannual COPR meetings, regular conference calls, and working group activities throughout the year.

For more information or to obtain an application online, visti the COPR Web site at http://copr.nih.gov/application.asp. To request an application by mail, contact the COPR Resource Staff by phone at (301) 650-8660, Ext. 129, by fax at (301) 650-8676, or by e-mail at COPR1@palladianpartners.com.

Applications are due on October 31, 2005. The next COPR meeting, on October 25, 2005, includes on the agenda a discussion on “exploring the inclusion and preparation of public members in the peer review process” and public trust in the research process. For details, visit http://www.copr.nih.gov/.

Posted by Dusty Weaver on October 15th, 2005
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Cancer Funding in the Wake of Natural Disasters

Katrina and Rita — names now linked to two hurricanes which left massive destruction on the Gulf Coast. One cannot help but to express concern and to do something for the several million people affected by this natural disaster.

Our nation faces a fiscal challenge to find a way to pay for the tremendous amount of resources this region needs to recover.

In a letter the Colorectal Cancer Coalition sent to members of the Senate and House Appropriations Committees, Nancy Roach, C3 President, stated,

>”…we must find a way to pay for the relief effort without compromising our nation’s commitment to programs that are critical to the fight against cancer.”

The Administration through its National Cancer Institute set a challenge goal of eliminating suffering and death due to cancer by the year 2015. Congress expressed its commitment in early October, 2005 when 92 Senators and 280 House Members sent a letter to the President in support of the goal.

We will make real progress toward the 2015 goal by building on past investments with continued funding of research as well as programs to prevent, detect and treat cancer.

Congress, through a continuing resolution which extends through November 18, imposed a six-week freeze on biomedical research and cancer prevention and control programs and would cut funding to address the national nursing shortage. In its letter C3 urges Congress “to maintain our nation’s commitment to the war against cancer as it continues to address unexpected emergencies now and in the years to come.”

You can make a difference right now by sending a letter to your Senators and Representative. Click on the “One Minute Advocate” logo located on the right side of of the opening page. Scroll down the page to the heading “Move Forward Against Cancer: Cancer funding in the wake of natural disasters”, click the “Take Action” button and follow the directions.

Read the letter C3 sent to members of the Senate and House Appropriations Committees.

Posted by Dusty Weaver on October 12th, 2005
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Closing of 2015 Goal Letter Brings Time to Thank and Time to Ask Why

Since visiting Congress March 15, 2005 during the One Voice Against Cancer (OVAC) Lobby Day, Colorectal Cancer Coalition (C3) advocates worked hard to get their Senators and Representatives to sign a letter from Congress to the President in support of the Administration’s goal of eliminating cancer death and suffering by the year 2015. The closing and sending of the letter brings the time to thank those who did sign and the time to ask why to those who did not sign.

Below are suggested letters you can send to your Senators and Representative. Feel free to make it your own by making changes as you see fit. Be sure to add the name and address of you Senator or Representative at the beginning, to add your name and contact informaition at the end and to make the appropriate change in the third paragraph.

Go here to find out if your Senators and Representative signed the 2015 goal letter.

Example letter to Senators who signed:

>Thank you for joining 92 of your Senate colleagues in signing a letter to the President in support of the Administration’s goal of eliminating suffering and death due to cancer by the year 2015. A similar letter was also sent to the President from 275 Members of the House of Representatives.

>Thanks to prior investments in cancer research and programs, we can now actually envision a time when the outcomes of cancer — suffering and death — can be eliminated. While the 2015 goal is clearly ambitious, we will make real progress towards it if we make cancer a higher national priority and make the right policy choices.

>As a (cancer survivor)(caregiver for someone with cancer) I thank you again for your support. I look forward to working with you to make the 2015 goal a reality.

Example letter to Senators who did not sign:

>The National Cancer Institute (NCI) set a goal of eliminating cancer death and suffering by the year 2015. Thanks to prior investments in cancer research and programs, we are making remarkable progress in the fight against cancer. Achieving the 2015 goal is now within our reach if we make cancer a higher national priority and make the right policy choices.

>This September 92 of your colleagues in the Senate signed and sent a letter to the President to express their commitment to and support of the NCI’s goal. I am disappointed to know that you were one of the eight Senators who did not sign the letter.

>As a (cancer survivor)(caregiver for someone with cancer) I ask you to tell me why you did not demonstrate your commitment to and support of our country’s efforts to eradicate cancer by signing the letter to the President.

Example letter to Representatives who signed:

>Thank you for joining 275 of your colleagues in the House of Representatives in signing a letter to the President in support of the Administration’s goal of eliminating suffering and death due to cancer by the year 2015. A similar letter was also sent to the President from 92 Senators.

>As a (cancer survivor)(caregiver for someone with cancer) I thank you again for your support. I look forward to working with you to make the 2015 goal a reality.

Example letter to Representatives who did not sign:

>This September 280 of your colleagues in the House of Representatives signed and sent a letter to the President to express their commitment to and support of the NCI’s goal. I am disappointed to know that you were one of the 160 Members who did not sign the letter.

Posted by Dusty Weaver on October 9th, 2005
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Even With Changes, NCI Always Moving Forward

The Director’s Update in the October 4, 2005 edition of the NCI Cancer Bulletin highlights some of the leadership changes at the National Cancer Institute (NCI) and how these changes will help NCI maintain its forward progress toward the 2015 goal to eliminate the suffering and death due to cancer by the year 2015.

NCI Director Dr. Andrew von Eschenbach started the article by stating:

>Last week brought with it an important change at the National Cancer Institute (NCI), with my appointment as interim commissioner of the Food and Drug Administration (FDA) by President Bush. And as I said at the time, I will maintain my position as NCI director and my ultimate commitment to the 2015 goal.

>To ensure that the many ambitious initiatives and programs we have launched to reach that goal continue to progress, Department of Health and Human Services Secretary Mike Leavitt has asked Dr. John Niederhuber, who recently came to NCI as deputy director for translational and clinical sciences, to serve as the NCI chief operating officer to handle much of the institute’s day-to-day management.

Dr. von Eschenbach closed his remarks by saying:

>While their missions may differ somewhat, NCI and FDA, along with the other government health agencies, share a common goal of improving public health. I am committed to leading FDA through this time of transition and fulfilling my responsibilities to NCI.

>Change is never easy, but with good people and a dedication to success, I have no doubt we can come through it for the better.

Read Dr. von Eschenbach’s article in the October 4, 2004 edition of NCI Cancer Bulletin.

Posted by Dusty Weaver on October 4th, 2005
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NCI Director Featured in First “Understanding NCI” Teleconference Series

The National Cancer Institute’s Office of Liaison Activities first monthly teleconference in a new “Understanding NCI” series was a resounding success. Over 100 members of cancer advocacy organizations, survivors, family, and friends participated in the teleconference which included a question and answer period. NCI Director Dr. Andrew von Eschenbach spoke about “Eliminating Suffering and Death Due to Cancer by 2015: The Future of Cancer Research.” The call was moderated by Mr. Doug Ulman who chairs the NCI Director’s Consumer Liaison Group (DCLG). He also addressed the question “What is the role of the advocacy community in the future of cancer research?” DCLG Member Col. (Ret.) Jim Williams set the tone for the teleconference with remarks on “What I’ve learned about cancer research as an advocate and member of the DCLG.”

This teleconference is available in its entirety by calling toll-free 1-866-443-2931. The instant replay will be available until October 20, 2005, at 5:30 p.m. (EST). For more information on this and other teleconferences in the series please go here.

Posted by Dusty Weaver on October 4th, 2005
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