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I've already received three fundraising phone calls today from breast cancer groups no one has ever heard of.  Komen's recent problems have brought the scam artists out of the woodwork, so I'll offer some tips on how to choose a good breast cancer charity to support.

Keep in mind, if Komen were to disappear tomorrow, there are plenty of organizations who can and already are managing the same programs.

 The presence of SGK in the breast cancer non-profit world has done more harm than good, killing good programs, redirecting money and publicity away from more important programs and running good quality, competing breast cancer organizations out of business.

Follow me for some suggestions on how to make your dollars work better to end breast cancer...

I'm going to highlight the various areas of national efforts to end breast cancer. They're sometimes separate and distinct, some get more attention than others and most organizations focus on specific areas.  New developments in research and treatment often cause the priorities to shift.

These are just my own personal suggestions, based on running a breast cancer non-profit and working in the field for over 10 years.

Breast Cancer Screening

Breast cancer screening programs help in the effort to provide mammography and CBE's (clinical breast exams) to all healthy women, usually those over the age of 50 or for women with symptoms under age 50.  In any given year, only about 2% of women who receive a mammogram will be diagnosed with breast cancer.  

Thanks to the "early detection" movement in recent years, programs for breast screening of large groups of healthy women have been overserved, especially compared to programs that provide breast cancer treatment.  If you're an uninsured or low income woman, its far easier in the US to get a free mammogram than it is to get free treatment if you're diagnosed and treatment is much, much more expensive.

By far, the biggest program to provide free screening is the federally funded CDC Breast & Cervical Cancer Early Detection Program. It also covers diagnostic screening for those who need it. Its funded by your tax dollars at the federal and state level.  Its in every state and is managed by your state health department.  Most of Komen's donations for screening go to the providers who participate in this program to supplement their budgets. Before Komen, American Cancer Society used to manage these free screening and referral programs and they did so pretty well.

Today, most American women have access to free or low cost mammography screening. Treatment is a different story.

Under ACA, most of these programs will eventually be morphed into the new federally funded community based health clinics.

Recommendations

Your tax dollars already pay for most screening. You can lobby your members of Congress to protect and increase the funding for this vital program until ACA (or hopefully some day, single payer) kicks in.

If you want to donate to an alternate charity that provides funding for breast screening, American Cancer Society and Avon Foundation are a good alternative.  ACS ran these programs for many years before Komen became active.

Breast Cancer Treatment

Thanks to your tax dollars,  Medicaid, Medicare and the Breast & Cervical Cancer Treatment Program, many women can access affordable treatment.  The BCCP Treatment Program works in conjunction with the BCCEDP screening program. In most states, women diagnosed through BCCEDP are enrolled in the BCCP Treatment Program and receive Medicaid coverage for their treatment and follow up care.  Programs vary by state, some cover more women.  In most states, the program covers less than half of uninsured breast cancer patients.

There are no charities, national or otherwise who can fund breast cancer treatment. Its just too expensive. Some help temporarily with co-pays, etc. Some hospitals provide taxpayer and donor funded charity care. I'll cover those in my next diary.

Pharma companies provide help with prescriptions and oncology drugs. These programs vary in their eligibility guidelines and patients apply for them through their cancer care provider.


Recommendations

Lobby Congress and your state to cover all uninsured breast cancer patients through Medicaid or Medicare or support breast cancer advocacy groups that do (National Breast Cancer Coalition).

Donate to your local hospital or cancer center's programs to provide charity care if they have one.

Research

Again, your tax dollars handle most of this, through NCI, NIH, NIEHS, FDA and the DoD Breast Cancer Research Program.  They fund research at their own institutions or give grants to universities, cancer hospitals, etc.   They fund most basic research, epidemiological (statistical) research (through SEER and other government institutions). Increasingly, they're funding more translational research as well as funding for clinical trials.  Most have also begun to incorporate patient/consumer reviewers as part of the process.

Charitable donation driven research is a smaller part of the picture, but helps in some key areas.  It takes a lot of expertise to handle a research granting program, so its best to support non-profits who have been doing this a long time and who have good advisory boards.

Recommendations

Pay your taxes and lobby your member of Congress and the WH to support quality, well funded research program.  Breast cancer activists have been active in reforming most research programs to have better focus, specific goals and to spend research fund well.   National Breast Cancer Coalition has been at the forefront of this movement.

Avon - Yes, the cosmetics company has had an incredibly high quality grantmaking program for breast cancer research.

American Cancer Society - decent research funding program for all cancers, well respected in the industry. Research through grants and some in house They also do a lot of their own statistical reports on cancer, which many organizations rely on.  It's your grandparent's cancer group. Somewhat patriarchal and plodding, not always focused on specific goals or ending cancer as quickly as possible.

LiveStrong - the new kid on the block. Much more cutting edge and focused on getting all cancers cured ASAP.  Gives grants. Also has a strong focus on patients and survivorship. They focus on all cancers, not just breast cancer.

Dr. Susan Love Research Foundation - a feminist and leader in the women's breast cancer movement.  Very innovative, focused on understand the breast and accruing patients for clinical trials.  Runs the Army of Women program.  Does in-house research, some w/ UCLA medical center.

Revlon and Estee Lauder - both cosmetics companies have been running high quality breast cancer research non-profits for many years. They give grants to research programs.

Grassroots Advocacy & Public Policy

Grassroots advocacy for breast cancer mainly came about as a result of the success the AIDS community had in this area.  Patient driven legislative and research advocacy efforts have brought about the most change in the history of US breast cancer.  Its brought about more and better research, improved access to quality cancer screening and treatment and has made major inroads in protecting patients rights.  With more health care, research and health regulation being handled by the federal government, grassroots lobbying has the greatest overall impact.

The most effective grassroots groups are breast cancer specific and survivor managed.  Most health and health care industry advocacy groups don't focus on breast cancer patients.  Your local cancer hospital or the AMA, or oncology association employ lobbyists, but they're not working on behalf of patients.  They leave it to the patients to create their own groups and work on their own agendas.

When choosing a group to support, make sure you check their legislative agenda. It should be specific, detailed and updated regularly.  It should be linked to specific legislation or contain detailed policy statements about the type of legislative changes they're proposing.  Their grassroots lobbying should include training for consumers/survivors and should include them in face to face meetings with policymakers.

Recommendations

National Breast Cancer Coalition - the oldest and most respected breast cancer grassroots advocacy organization on The Hill, in the research community and in the national news media. Your member of Congress knows who they are. They do their homework and develop legislative priorities that focus on systemic change and substantive policy.  You won't see them supporting bills to light buildings or paint crap pink.  They hate it.  If you're a Congressperson, don't hide behind that pink ribbon. They may think less of you for wearing that pin.

They have both a 501 c3 to do research advocacy and quality education for activists and a 501 c 4 that handles their advocacy work. They focus on all aspects of breast cancer. Most of their staff and board members are breast cancer survivors, some of them living with advanced disease.  Their membership has around 600 organizations. Many local and some national breast cancer groups do their grassroots lobbying through NBCC.  It's a coalition, not a franchise, so member organizations can differ in their programs, etc.

They are the group Komen hates, copies and would like to get rid of.

Breast Cancer Fund - a good group that works on environmental issues

Breast Cancer Action - also a good group that focuses on environmental issues and exposing Komen and other corporate influenced breast cancer groups ;-)

American Cancer Society - They're the Big Dog of cancer lobbying on the Hill. Their agenda usually focuses on initiatives for all cancers. They have a reputation of not pushing too hard, or supporting legislation to benefit patients, but they are changing. Slowly.  They were the "go to" group for cancer during the health care reform debates, but National Breast Cancer Coalition was also given a seat at the table in Congressional negotiations.  ACS's current legislative agenda focuses mostly on funding for tobacco cessation programs, which they receive.  They're also the folks who got all the states to pass no-smoking laws.  They do step in, from time to time, to lend their support to breast cancer advocacy groups on legislative initiatives they like.  They helped with passage of the Breast & Cervical Cancer Treatment Act and they usually lobby to protect the BCCEDP screening program.  They sometimes put greater emphasis on screening over treatment, though.

This diary is getting long, so I'll focus on groups related to Patient Assistance, Education and Support in the next diary.

Please forgive me in advance if I'm leaving out important groups or have made errors.  Let me know of corrections in the comments or PM me.

6:43 PM PT: Update:  Glossary of Terms

DoD BCRP - Dept. of Defense Breast Cancer Research Program

NBCC - National Breast Cancer Coalition

Others:

ACS - American Cancer Society
NIH - National Institutes of Health
NCI - National Cancer Institute
SEER - Surveillance Epidemiology and End Results -  great site for cancer stats
NIEHS - National Institutes of Environmental Health Sciences, part of NIH
CDC - Centers for Disease Control & Prevention
IOM - Institute of Medicine
ACA - Affordable Care Act (aka Obamacare)
BCCEDP - Breast & Cervical Cancer Early Detection Program - federally funded breast & cervical cancer screening program

Originally posted to Betty Pinson on Fri Feb 03, 2012 at 02:18 PM PST.

Also republished by Monday Night Cancer Club and Community Spotlight.

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