Indianapolis Affiliate of the Susan G.

Komen Breast Cancer Foundation Community Profile 2006 Executive Summary

The Service Area The Indianapolis Affiliate of the Susan G. Komen Breast Cancer Foundation serves 21 counties in central Indiana: Marion County and its contiguous counties (Boone, Hamilton, Hancock, Hendricks, Johnson, Madison, Morgan and Shelby) as well as an outer ring of more rural counties (Bartholomew, Brown, Clinton, Decatur, Delaware, Grant, Hendry, Howard, Montgomery, Rush, Tippecanoe, and Tipton). Although Madison County technically is not contiguous with Marion County, it is considered part of the Metropolitan Statistical Area of Indianapolis; therefore, for the purposes of this report we have included it in the group of contiguous counties. The National Komen Foundation reports the population for those 18 years old and older in our 21 county service area at 1,779,904. The highest concentration of our population is found in Marion County and the contiguous counties. In our service area the percentages of the population are:
Affiliate Service Area Total Population: Ethnicity Total Male Female Caucasian African American Hispanic Asian Native American Others Multiracial Count 1,779,904 861,710 918,194 1,497,019 179,246 52,556 31,441 3359 912 15,371 % of Total 100% 48.4% 51.6% 84.1% 10.1% 3.0% 1.8% 0.2% 0.0005% 0.9%

Affiliate Service Area Population of Women by Ethnicity: Ethnicity Total Caucasian African American Hispanic Asian Number of Women 918,194 784,370 94,272 18,757 13,639 % of Total Population 51.6% 44.1% 5.2% 1.1% 0.8% % of Women 100% 85.4% 10.3% 2.0% 1.5%

Native American Others Multiracial

940 352 5884

0.0005% 0.0001% 0.3%

0.10% 0.0004% 0.64%

Incidence Rates of Breast Cancer

(Please note: These are based on estimated counts and not rates. The contractor took the rates (per person) and multiplied that rate against the population for each county to get the estimated count per county/state. The figures represent a single year and were calculated by applying a rate to the 2005 demographics.)
Invasive Incidences By Affiliate Service Area Ethnicity Caucasian African American Hispanic Others [Aggregated] # Cases 1474 126 13 35

In Situ Incidences By Affiliate Service Area Ethnicity Caucasian African American Hispanic Others [Aggregated] # Cases 347 28 2 10

Total Incidences By Affiliate Service Area Ethnicity Total Cases Caucasian African American Hispanic Others [Aggregated] # Cases 2035 1821 154 15 45 % of Total 100% 89.5% 7.6% 0.7% 2.2%

Mortalities By Affiliate Service Area Ethnicity Total Caucasian African American Hispanic Others [Aggregated] # Cases 316 267 43 2 4 % of Total 100% 84.5% 13.6% 0.6% 1.3%

Key Informants

Through our 14 returned Key Informant surveys we utilized information from individuals in urban, contiguous, and rural counties to understand the broad range of circumstances that our service area encompasses. We approached minority organizations, breast health physicians, clinic workers, grantees, survivors, and co-survivors to help us gain a complete picture of services and gaps. Through the surveys we learned of gaps in services throughout the 21 counties that included: 1. Breast Health Service Providers are not readily available in counties outside of Marion and Southern Hamilton. 2. Barriers to available services. 3. Lack of immediate and on-going support services for survivors and co-survivors. 4. Lack of overall coordination for all breast health services (continuum of care) from screening, biopsy, diagnosis, treatment, survivor and co-survivor support, and survivorship support. 5. Lack of access to treatment for the working poor. Many of our contiguous and rural counties had additional barriers and lacked needed breast health services. It was also noted that rural areas were less likely to have culturally sensitive or bilingual programs available to their residents. Definitions For the purposes of this report we have used several terms that need to be defined for clarification. These terms include: Survivor: Any person living with, or in remission from, breast cancer from the moment of diagnosis throughout their lifespan. Co-Survivor: Spouses, Friends, Children, Co-workers, and Health Care Providers of Survivors. Survivorship: The state of living 18 months or longer past the end of active cancer treatments. Issues include education, reduction of reoccurrence, and fertility after breast cancer treatment. Support Services: Any service considered non-medical or augmenting medical services. This includes psycho-social services, services for completion of Activities of Daily Living (ADLs), child care, payment of everyday expenses, rehabilitation, transportation, and others. Holistic Approach: Treatment services of cancer and related symptoms including nutrition, spirituality, mindfulness, massage, and other Complementary Alternative Therapies (CAM) that would treat the whole person in addition to traditional medical therapies. Working Poor: Those who work but do not have access to medical insurance or other resources to complete the breast cancer process, through screening to survivorship, yet do not qualify for public assistance or Medicaid because of assets.

Prioritized Gaps in Service for the Indianapolis Affiliate of the Susan G. Komen Breast Cancer Foundation Community Profile 2006 1. Breast Health Service Providers are not readily available in counties outside of Marion and Southern Hamilton. Rural women and men may not have a provider within her/his county or within 45 minutes of her/his home for education, screening, diagnostic services, biopsy, treatment, support services, support groups, or long term survivorship services. Non-English speaking women and men have even fewer resources in rural areas due to the lack of bilingual services and lack of service providers. Education on early detection of breast cancer is not effective if theres no access to services or service provider available. Many Marion county services do not serve residents of the surrounding counties. 2. Barriers to available services including but not limited to: Lack of bilingual services. Cultural barriers concerning health care, immigration, fear of being contagious, fear of pain, shame of losing a breast, only want females to conduct exams, belief that mammograms cause cancer, and concept of ones body. Myths and misinformation concerning breast health. Lack of transportation services (No public transportation services are available outside of Marion County and not all of Marion County is covered by public transportation). Lack of physician education (Particularly concerning younger women and older women). Lack of funds to access services if they are available in their area. Lack of insurance or adequate insurance for the working poor. Incarceration often keeps women from accessing services or education. Survival needs such as food and shelter often take precedence over health care. Lack of diagnosis and treatment programs and funding prevents initial screening. 3. Lack of immediate and on-going support services for survivors and co-survivors. There are few support groups in rural areas. There are few non-English speaking support groups, and most areas have none.

There is one agency that addresses non-medical financial needs in Marion County and no agencies that address these needs in any other county. Township trustees have been found to be unreliable resources due to the lack of funding and inability to assist on an on-going basis. Single women have no child care, transportation, cannot afford to take time off of work for treatment, and have no other methods of non-medical support. Co-survivors have few resources for emotional or care-giving support in Marion County and have none in rural counties. Families and children have no resources outside of Marion county and very few within the metropolitan area.

4. Lack of overall coordination for all breast health services (continuum of care) from screening, biopsy, diagnosis, treatment, survivor and co-survivor support, and survivorship support. There is no single point of access for services which is both an organizational and a public policy issue. Most services do not have dedicated social workers, case managers, or breast health navigators/patient advocates. There is no holistic approach to care from screening to survivorship. There are few resources for psycho-social needs. Most of the population is unaware of programs available such as BCCP, Little Red Door, and Komen grantees. There is a lack of education about available services, and the process involved to qualify for those services, before screening which keeps some who qualify out of the most needed programs. 5. Lack of access to treatment for the working poor. Uninsured, underinsured, and working single women/mothers, and rural women in farming communities often cannot meet the financial criteria, due to assets, in order to qualify for Medicaid but do not have funding for treatment. Anecdotal evidence shows that some women are waiting up to a year for treatment after diagnosis. Mobile mammography is excellent for screening in rural areas but then there are no follow-up services. Public policy issues such as access to BCCP programs due to screening guidelines, funding, availability, and public awareness. There is no Medicaid waiver for breast cancer.