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There are many good resources for people with breast cancer. We do not try to include them all. The groups in this list are those we refer to in the guide.

Helpful Organizations Why We Recommend Them
NATIONAL BREAST CANCER COALITION/FUND (NBCC/F)
1101 17th Street, NW, Suite 1300
Washington, DC 20036
Tel: (800) 622-2838
Tel: (202) 296-7477
Fax: (202) 265-6854
www.stopbreastcancer.org
AGENCY FOR HEALTHCARE RESEARCH AND QUALITY
U.S. Department of Health and Human Services
Office of Communications and Knowledge Transfer
540 Gaither Road, Suite 2000
Rockville, MD 20850
Tel: (301) 427-1364
www.ahrq.gov
  • To learn more about the Effective Health Care Program, and its reports on the scientific evidence for different treatments and clinical practices.
AMERICAN BAR ASSOCIATION
321 N. Clark Street
Chicago, IL 60610
Tel: (800) 285-2221
Fax: (312) 988-5790
www.abanet.org
AMERICAN CANCER SOCIETY (ACS)
National Home Office
1599 Clifton Road, NE
Atlanta, GA 30329-4251
Tel: (800) ACS-2345
www.cancer.org
  • For evidence-based information on complementary and alternative medicine.
AMERICAN SOCIETY OF CLINICAL ONCOLOGY (ASCO)
1900 Duke Street, Suite 200
Alexandria, VA 22314
Tel: (703) 299-0150
Fax: (703) 299-1044
www.asco.org
  • To find oncologists that are Board-certified.
AMERICAN SOCIETY OF PLASTIC SURGEONS (ASPS)
444 E. Algonquin Road
Arlington Heights, IL 60005
Tel: (888) 4-PLASTIC (888-475-2784)
www.plasticsurgery.org
AVON BREAST CANCER CRUSADE
Avon Foundation Breast Care Fund
505 Eighth Avenue, Suite 1601
New York, NY 10018-6505
Tel: (212) 244-5368
Fax: (212) 695-3081
www.avonbreastcare.org
  • To find a group in your area that provides free or low-cost mammograms to women without health insurance. Avon funds many groups to provide this service.
BLUE CROSS AND BLUE SHIELD ASSOCIATION
Technology Evaluation Center
www.bcbs.com/tec/index.html
  • For a copy of their breast cancer-related technology assessments.
CANCERCARE
275 Seventh Avenue, 22nd floor
New York, NY 10001
Tel: (800) 813-HOPE (4673)
Tel: (212) 712-8080
FAX: (212) 712-8495
www.cancercare.org
  • For their booklet called, A Helping Hand Resource Guide; it lists groups across the country that help patients pay for their care.
  • To ask about copayment assistance for breast cancer oral drugs.
CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)
1600 Clifton Road
Atlanta, GA 30333
Tel: (888) 842-6355
www.cdc.gov
  • To find out where to get a free mammogram through the National Breast and Cervical Cancer Early Detection Program (NBCCEDP). This program gives breast and cervical cancer screenings, diagnoses, and treatment to low-income women. All 50 states offer screening, diagnostic, and treatment services through the NBCCEDP.  Click here for an online listing of program contacts by state.
CENTERS FOR MEDICARE AND MEDICAID SERVICES (CMS)
7500 Security Boulevard
Baltimore, MD 21244
Tel: (800) MEDICARE (633-4227)
www.cms.gov
  • For information on the Medicare program,
  • For toll-free phone numbers for each state's Medicaid agency, call 800-MEDICARE or click here for an online listing of the CMS Regional Offices.
COMPASSION IN DYING FEDERATION
PMB 415, 6312 SW Capitol Highway
Portland, OR 97201
Tel: (503) 221-9556
FAX: (503) 228-9160
www.compassionindying.org
  • To learn about issues that are important during the last stages of life.
FINDCANCEREXPERTS.COM
Academic Oncology Resources, LLC
PMB 340
11140 Rockville Pike
Rockville, Maryland 20852
(no phone service available)
FAX: (301) 231-4987
www.findcancerexperts.com
  • For help getting a pathology second opinion anywhere in the country.
HEALTHINSURANCEINFO.NET
Georgetown University Health Policy Institute
3300 Whitehaven Street, NW, Suite 5000
Washington, DC 20057-1485
Tel: (202) 687-0880
FAX: (301) 231-4987
www.healthinsuranceinfo.net
  • For their Consumer Guides for Getting and Keeping Health Insurance, available online for all 50 states and the District of Columbia.
HEALTH LEGACY PARTNERSHIP
4770 Biscayne Boulevard, Suite 1150
Miami, FL 33137
Tel: (305) 576-4310
FAX: (305) 576-7412
www.healthlegacy.org
  • To learn more about health outcomes research,
  • To learn about their efforts to create a national health outcomes database.
HEALTH PRIVACY PROJECT
1120 19th Street, NW, 8th Floor
Washington, DC 20036
Tel: (202) 721-5614
FAX: (202) 530-0128
www.healthprivacy.org
  • For a summary of privacy laws around the country,
  • To learn about privacy protections in your state.
HEALTHWELL FOUNDATION
P.O. Box 4133
Gaithersburg, MD 20878
Tel: (800) 675-8416
FAX: (800) 282-7692
www.healthwellfoundation.org
  • To ask about copayment assistance for chemotherapy-related diagnoses.
HILL-BURTON FREE CARE PROGRAM
Division of Facilities Compliance and Recovery
Health Resources and Services Administration
U.S. Department of Health and Human Services
5600 Fishers Lane, Room 10 C-16
Rockville, MD 20857
Tel: (800) 638-0742
www.hrsa.gov/hillburton/default.htm
  • To see if you can get free or low-cost care at a Hill-Burton care center.
  • To obtain a list of Hill-Burton care centers in your area.
INSTITUTE OF MEDICINE (IOM)
2101 Constitution Avenue, NW
Washington, DC 20418
Tel: (202) 334-2352
FAX: (202) 334-1412
www.iom.edu
JOINT COMMISSION ON ACCREDITATION OF HEALTHCARE ORGANIZATIONS (JCAHO)
One Renaissance Boulevard
Oakbrook Terrace, IL 60181
Tel: (630) 792-5000
FAX: (630) 792-5005
www.jcaho.org
  • To see if your hospital is accredited. JCAHO may also have a report on your hospital.
MEDICARE
(The Medicare program is administered by the Centers for Medicare and Medicaid Services.)
Tel: (800) MEDICARE (633-4227)
www.medicare.gov
  • For information on the Medicare program.
NATIONAL CANCER INSTITUTE (NCI)
Public Inquiries Office
Building 31, Room 10 A
3131 Center Drive, MSC 2580
Bethesda, MD 20892-2580
Tel: (800) 422-6237
www.cancer.gov
  • For NCI's breast cancer care guidelines; these guidelines are part of NCI's Physician Data Query (PDQ), a cancer database.
  • For a copy of NCI's Consensus Statement on Adjuvant Therapy for Breast Cancer; this paper tells what NCI recommends for treating breast cancer.
  • For information on clinical trials.
  • For a listing of state laws requiring health plans to cover patient care costs in clinical trials.
NATIONAL CENTER FOR COMPLEMENTARY AND ALTERNATIVE MEDICINE (NCCAM)
NCCAM Clearinghouse
P.O. Box 7923
Gaithersburg, MD 20898
Tel: (800) 644-6226
Tel: (301) 519-3153
FAX: (866) 464-3616
www.nccam.nih.gov
  • To learn about complementary and alternative care (CAM),
  • To find out what CAM treatments exist and what is known about them,
  • To find out about open CAM clinical trials.
NATIONAL COALITION FOR CANCER SURVIVORSHIP (NCCS)
1010 Wayne Avenue, Suite 770
Silver Spring, MD 20910-5600
Tel: (301) 650-9127
Tel: (877) 622-7937
FAX: (301) 565-9670
www.cansearch.org
  • For a copy of NCCS's cancer Survival Toolbox audiotapes. The audiotapes cover talking with doctors, making deals, solving problems, and standing up for your rights.
NATIONAL COMMITTEE FOR QUALITY ASSURANCE (NCQA)
2000 L Street, NW, Suite 500
Washington, DC 20036
Tel: (202) 955-5697
FAX: (202) 955-5615
www.ncqa.org
  • To see if NCQA has rated your health plan. Ask if they have a report card or other information on your health plan.
NATIONAL COMPREHENSIVE CANCER NETWORK (NCCN)
50 Huntingdon Pike, Suite 200
Rockledge, PA 19046
Tel: (888) 909-6226
FAX: (215) 728-3877
www.nccn.org
NATIONAL CONFERENCE OF STATE LEGISLATURES (NCSL)
1560 Broadway, Suite 700
Denver, CO 80202
Tel: (303) 830-2200
FAX: (303) 863-8003
www.ncsl.org
  • To find out if your state has passed breast cancer or other health care laws.
NATIONAL HEALTH LAW PROGRAM
2639 South La Cienega Boulevard
Los Angeles, CA 90034-2675
Tel: (310) 204-6010
FAX: (310) 204-0891
www.healthlaw.org
  • For a copy of their fact sheet, "Getting the Best Out of Managed Care #2: Understanding Quality Measures."
NATIONAL LIBRARY OF MEDICINE (NLM)
Building 38 A, Room 8 N 805
Bethesda, MD 20894
Tel: (888) 346-3656
Tel: (301) 594-5983
FAX: (301) 480-9241
www.ncbi.nlm.nih.gov
  • To find clinical trials. Visit NLM's web site at www.clinicaltrials.gov,
  • To access NLM's database, "Medline." Medline is on the Internet at www.ncbi.nlm.nih.gov/PubMed. It is a huge database. It lists titles and abstracts of research studies published in peer-reviewed, scientific journals.
NATIONAL PARTNERSHIP FOR WOMEN AND FAMILIES
1875 Connecticut Avenue, NW Suite 650
Washington, DC 20009
Tel: (202) 986-2600
FAX: (202) 286-2539
www.nationalpartnership.org
  • For the National Partnership's Guide to the Family and Medical Leave Act (FMLA).
PATIENT ACCESS NETWORK FOUNDATION
P.O. Box 221858
Charlotte, NC 28222-1858
Tel: (866) 316-PANF (7263)
FAX: (866) 316-7261
www.patientaccessnetwork.org
  • To ask about copayment assistance for individuals diagnosed with chemotherapy-related nausea and vomiting.
PATIENT ADVOCATE FOUNDATION
PAF Co-Pay Relief
700 Thimble Shoals Blvd., Suite 201
Newport News, VA 23606
Tel: (866) 512-3861
www.copays.org
  • To ask about their Co-Pay Relief Program for individuals with breast cancer.
PATIENT-CENTERED GUIDES
1005 Gravenstein Highway North
Sebastopol, CA 95472
Tel: (800) 998-9938
Tel: (800) 889-8969
FAX: (707) 829-0104
www.patientcenters.com
  • To buy a copy of Musa Mayer's book, Advanced breast cancer: A Guide to Living with Metastatic Disease. This book is also available in bookstores.
PATIENT SERVICES, INC.
P.O. Box 1602
Midlothian, VA 23113
Tel: (800) 366-7741
FAX: (804) 744-5407
www.uneedpsi.org
  • To ask about copayment assistance for chemotherapy-related diagnoses.
PATIENT TRAVEL
c/o Mercy Medical Airlift
4620 Haygood Road, Suite 1
Virginia Beach, VA 23455
Tel: (888) 675-1405, OR
National Patient Travel Helpline
Tel: (800) 296-1217
www.patienttravel.org
  • For long-distance travel assistance.
PHARMACEUTICAL RESEARCH AND MANUFACTURERS OF AMERICA (PhRMA)
1100 Fifteenth Street, NW
Washington, DC 20005
Tel: (202) 835-3400
www.phrma.org
  • For free medicine.
SOCIAL SECURITY ADMINISTRATION (SSA)
Tel: (800) 772-1213
www.ssa.gov
  • For information on buying into Medicare Part A or for enrolling in Medicare Part B,
  • To find out if you can get benefits from the Social Security Disability Insurance (SSDI) program.
SUSANLOVEMD.COM
P.O. Box 846
Pacific Palisades, CA 90272

(no phone service available)
www.susanlovemd.com
  • For information on how to read your biopsy report and understand you treatment choices. You can find this information on Dr. Love's web site and in her book, Dr. Susan Love's Breast Book,
  • For a good list of questions to think about when choosing a doctor. This information is on Dr. Love's web site and in her book.
OFFICE FOR CIVIL RIGHTS
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Room 509F, HHH Building
Washington, DC 20201
Tel: (800) 368-1019
www.hhs.gov/ocr/hipaa/
  • For information on HIPAA privacy regulations
Y-ME NATIONAL BREAST CANCER ORGANIZATION
212 W. Van Buren, Suite 500
Chicago, IL 60607
Tel: (800) 221 2141 (English)
Tel: (800) 986-9505 (Spanish)
FAX: (312) 294-8597
www.y-me.org
  • For a copy of their brochure, Understanding your breast cancer pathology report: a guide for breast cancer patients


 

10 Things to Know When Judging Medical Resources on the Web
The Internet is a great place to get information fast. But you have to be careful. The National Cancer Institute recommends asking the following questions. If you don't have access to the Internet, you may want to contact your local public library. Public libraries often have free access to the Internet.
  1. Who runs this site? Any good health-related web site should make it easy to learn who controls the site.
     
  2. What is the goal of the site? This is related to who runs the site and who pays for the site (see #8 below). The goal of the site should be clearly stated. Look under "About This Site" or "Mission Statement." These are common titles for this kind of information. Judge carefully what you are reading. The site's goal may not be to give fair, correct health information. The goal may be to sell you something.
     
  3. Where does the information come from? Many health/medical sites post information collected from other web sites or from off-line sources. The source should be clearly labeled if the information came from somewhere else.
     
  4. What is the information based on? The site should give the evidence that its information is based on. Medical facts and figures should have references. A reference can be an article in a medical journal or a meeting of experts. Opinions or advice should be clearly set apart from information based on research results.
     
  5. How is the information selected? Is there an editorial board? Do people with very good medical backgrounds review the information before it is posted?
     
  6. How current is the information? Web Sites should be reviewed and updated regularly. Each major page should have a date. (For example: "This page last updated on 7/9/02.") It is very important that medical information be current. Even if the information has not changed, the site owners should review it often. That is the only way they can be sure the information is still valid.
     
  7. How does the site choose links to other sites? Web Site usually have a policy about how they choose links to other sites. But they don't always tell what that policy is. Many medical sites don't link to any other sites. Some sites link to any site that asks or pays for a link.
     
  8. Who pays for the site? It costs money to run a web site. Some web sites are labors of love, but most have an outside source of funds. Again, this should be clearly shown on the site. For example, web addresses ending in ".gov" mean a government pays for them. You should know how the site pays for itself. Does it sell ads? Is it paid for by a drug company? The source of funding can affect what is there, how it is presented, and what the site owners want from the site.
     
  9. What information about you does the site collect and why? Web Sites routinely track the paths visitors take through their sites. They want to find out what pages are being used. But many health web sites ask for you to "subscribe" or "become a member." Sometimes this is so that they can collect a user fee (see #8) or choose information that relates to you. In all cases this will give the site personal information about you. Any site should tell you exactly what they will and will not do with your information. Many sites sell data about their users to other companies. (For example, they could sell information about what percentage of their users are women with breast cancer.) In some cases, they may collect and reuse information that could identify you, such as your zip code, sex, and birth date. Be sure that you read and understand any "privacy policy" or words like it on the site. And don't sign up for anything that you don't understand.
     
  10. How does the site interact with visitors? There should always be a way for you to contact the site owners with problems, feedback, and questions. And someone should answer your messages in a timely way. Does the site host chat rooms or other on-line discussion areas? If so, the site should tell visitors what the terms of using this service are. Is it moderated? If so, by whom and why? It is always a good idea to spend time reading the discussion before joining in. That way you can be sure you feel comfortable being part of it.
     

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© 2001, 2002, 2003, 2006 National Breast Cancer Coalition Fund
Last reviewed: March 2006