Survivorship Issues

We would like to use this area to discuss the focus on survivorship.

The National Cancer Institute now has an Office of Survivorship. It is currently headed by Dr. Julia Rowland (2005) and is funding research for this area.

http://dccps.nci.nih.gov/ocs/

NCI has a new initiative called NCI Listens and Learns. Here is some of what is being discussed on survivorship as of April, 2005. http://ncilistens.cancer.gov

"NCI is interested in learning how members of the cancer advocacy community and the general public would prioritize the recommendations released in June 2004 by the Presidentís Cancer Panel (PCP). The recommendations deal with several aspects of cancer survivorship and were obtained during a series of meetings held in 2003 and 2004.

To read the full text of the PCP report Living Beyond Cancer: Finding a New Balance

http://deainfo.nci.nih.gov/advisory/pcp/pcp03-04rpt/Survivorship.pdf

President's Cancer Panel Recommendations, June 2004

1. Treatment and Follow-up Care Information: Upon discharge from active cancer treatment every patient should be given a record of all care received and important disease characteristics and a plan for recommended follow up care.

2. Legal and Regulatory Protections: Procedures should be established within diverse patient care settings to better inform survivors and their caregivers about available legal and regulatory protections and resources.

3. HIPAA Privacy and Insurance Portability Provisions: The Institute of Medicine should be commissioned to evaluate the impact of Health Insurance Portability and Accountability Act (HIPAA) provisions and provide guidance to legislators on amendments needed to make this law better serve the interest of cancer survivors and others.

4. Cancer-related Education and Information: National public education efforts sponsored by diverse coalitions of public and private cancer information and professional organizations and the media should be undertaken to inform survivors, their healthcare providers and the public about cancerís long-term and late effects and their management.

5. Psychosocial and Support Needs: All survivors and caregivers should be counseled about common psychosocial effects of cancer and its treatment and provided specific referrals to available support groups and services.

6. Fertility: All people of reproductive age diagnosed with cancer should be provided information about options for preserving fertility and on possible effects of treatment on pregnancy or offspring before cancer therapy is selected or initiated.

7. Health Care Reform: The Federal Government should revive efforts to implement comprehensive health care reform.

8. School Re-entry: Qualified providers in the treatment setting should train and assist parents to assume their crucial roles in helping the child with cancer return to school and becoming an educator and advocate with individual teachers and the school system.

9. Adolescent and Young Adult Survivors: A working group should be convened to determine what data elements and resources would be required to better capture treatment and survival data on adolescent and young adult cancer survivors.

10. Follow-up Care Recommendations: Key cancer professional groups, and related clinician and researcher organizations should develop and make readily available recommendations to guide the post-treatment care of survivors.

11. Meidcare: A periodic assessment should be undertaken of the impact of Medicare legislative changes on older cancer patientsí access to care and other follow-up services.

Individual comment is being accepted. Here is what Ann Fonfa, founder and president of The Annie Appleseed Project had to say:

1. Annie Appleseed Project, The Annie Appleseed Project (4/4/2005 12:30:51 PM EST)

Our organization (www.annieappleseedproject.org) informs and educates on complementary, alternative (CAM), natural therapies. We strongly support the idea of item #4 which needs to be as all-inclusive as possible.

People are seeking CAM information and it should be provided along with any other information.

Our second priority is item #1. It is so important for each individual (and important to their families) to know what disease they had and what treatment they were given. It will have an impact for the rest of their lives.

Third we choose #7 which is really of utmost importance. The system we have is leaking from every pore. It does NOT work in the patient's best interest at all. We are often told that natural substances or complementary methods are not researchable since they cannot be patented and thus earn no company any money.

We believe healthcare should be about the person who is ill first and foremost. We support the use of hands-on and non-toxic therapies even when the profit motive is not there. We support insurance coverage for these modalities. We urge that insurance companies rethink their policies so that they are more in line with what people really need.

I personally support the single payer health care system. It is a terrible thing that in the richest nation in the world, we have so many people who lack appropriate healthcare coverage.


Meeting NCI's Challenge Goal

From the website NCI Listens


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