THE AMADER GRAM ( OUR VILLAGE ) ) Breast Care Program

Transcription

1 Developing a comprehensive, bottom-up, search and research, incremental change approach to breast cancer in rural Bangladesh: THE AMADER GRAM ( OUR VILLAGE ) ) Breast Care Program Richard R. Love, M.D. Scientific Director, International Breast Cancer Research Foundation

2 The Amader Gram assessment: Breast Cancer in Bangladesh 20,000-30,000 new cases each year; 80% die Because of poverty and other societal conditions, most women have NO CHOICE to get care for breast problems when they appear, and so they first get evaluation when they have advanced, incurable disease. 25% of women however do first present with a breast lump which is not diagnosed or treated as cancerous. Most specific care appears to be of POOR QUALITY- unneeded or impractical tests, and treatments which are ineffective or incomplete.

3 Amader Gram Breast Care Program MISSION Reduce morbidity and mortality from breast cancer and other breast diseases in the women residing in the Khulna Division of Bangladesh by sustainable and innovative business(es)

4 AMADER GRAM BREAST CARE PROGRAM Target Population 3.5 Million Women > 21 in the Khulna Division Cultural Education: Pot song performance art Community activation,education & empowerment: Breaking the silence Primary Breast Problem Clinics Primary health care training, case finding & cell phone reporting Bagerhat, Jessore, Rampal Radiation Therapy Center Multidisciplinary Breast Specialty Care Center Khulna Khulna Basic and Clinical Science Research

5 Helping women to have a real choice to get care for serious breast problems Breaking the silence with local education Addressing cultural issues with performance art Empowering primary health workers to case-find and assist affected women.

6 Breaking silence : : Community activation, education and empowerment Created 3 district, 7 women-member member committees Developed governance guidelines. Started process of creating specific flip chart educational materials for use in village meetings. Input plans with division meeting, and visits to Cultural education program, Breast problem clinics, Primary Health care worker training course, and Multidisciplinary Center.

7 Research in cultural education Breast problem Pot song content developed based on communications theory model. Goals are to change 1. Perceptions of nature of serious breast problems and acceptability of taking action to address these; and 2. Behavior,, by increasing numbers of women who seek help for breast problems. Evaluation will be in a village randomized trial of this and another control Pot Song with surveys of selected attendees and monitoring of Breast Problem Clinic and Specialty center visitor numbers and dates.

8 Cultural education: Rupantar Performance art "Pot Song on Breast Problems

9 Breast Problem Pot Song performance: 700 attendees, May 31, 2009

10 Primary health care training for case-finding and cell phone reporting Train Khulna division women Primary health care workers (n=3000) in: Recognition of breast cancer, breast examination, management success, patient motivation and facilitation in seeking care, and cell phone patient case and data reporting->ask- EXAMINE-REFER-REPORT-FOLLOW-UP.

11 Multidisciplinary Breast Care Center, Khulna: An outpatient one stop, medical home facility providing: Access for all regardless of ability to pay Centralized and coordinated care Paperless system Care based on clinical practice, evidence-based guidelines International (US- NCI/CEC) telemedicine consultation

12 Breast Care Center, Khulna: an outpatient facility which out-sources sources: Diagnostic Xray,, blood testing and pathology services Hospitalization for surgery Radiation therapy

13 Breast Care Center, Khulna: centralized and coordinated one stop medical home care means For any serious breast problem responsibility will be taken for all arrangements and diagnostic and treatment activities initial and long term including services outsourced and the business payment parts of all care.

14 AMADER GRAM BREAST CARE CLINICAL PRACTICE GUIDELINES Version 5/2009; 27 pages www. agbreastcare.org www. ibcrf.org

15 Guidelines: Important features Acknowledge uncertainty about efficacy, toxicities, and cost-efficacies of medicinal therapies conservative recommendations Reject high-income income country, drug-first approach to regionally advanced breast cancer. Emphasize practical and resource sensitive approaches to staging, tumor hormone receptor testing, assessment and management of pain, and operability. Promote surgical safety checklist

16 Cost effectiveness of investments in three Amader Gram projects Cultural education-rupantar : $75,000-> > $100 per year of life saved Primary Health care training for case finding/cell phone reporting : $150,000->$100 per year of life saved Breast care treatment center: $50,000->$50 per year of life saved Usual return on health care investments in US: $42,000 per year of life saved.

17 Framing or the goals of the Amader Gram Breast Care program DECREASING POVERTY AND INCREASING SOCIAL STABILITY THROUGH SOCIAL CHANGE AND INNOVATION BY: *Local governance *Empowerment of women *Job creation with IT expertise in the health sector IN THE PROCESS OF ADDRESSING A serious chronic disease, with a search and research model, focusing on major issues.

18 Basic and translational research in development Tumor *Analysis and comparison of gene copy number and mutation heterogeneity in locally-advanced advanced primary and metastatic breast cancers, including paired samples. (Norton, Hicks, MSKCC) *DNA methylation patterns in multiple LABC tissues (Sukumar( Sukumar, Hopkins) *Gene expression profiles in primary and metastatic LABC lesions (Teh( Teh,, Van Andel Research Institute) *Consanguinity, recessive genes and the risk of breast cancer (Ginsburg, Narod; ; University of Toronto) Host *Tamoxifen pharmacogenomics in Bangladeshi women (Flockhart( Flockhart, Desta,, Indiana University) *Anthracycline pharmacogenomics in Bangladeshi women (Chowbay,, National University Singapore) *Arsenic exposure and breast cancer risk (Ahsan( Ahsan,, University of Chicago)

19 Clinical research An international phase III randomized clinical trial of the timing of surgical oophorectomy in treatment of women with metastatic hormone receptor positive breast cancer.. (To date 63 cases entered) In development: Symptoms, interventions, and tele-health monitoring of responses in women with locally advanced breast cancer.

20 GETTING THERE FROM HERE: A HYBRID NONPROFIT BUSINESS MODEL FUNDING FOR INNOVATION: PROGRAM AND PROJECT START-UP TO SUSTAINABLE BUSINESS STATUS International donors FUNDING FOR PATIENT CARE Government of Bangladesh Patient fees Corporate social responsibility/ Philanthropy