PSE Change Real World Example: Kentucky Colon Cancer Screening Program

Problem

Note: Since its initial submission in June 2016, this example has been updated with new information in April 2020.

In 1999, the rate of reported new cases of colorectal cancer (CRC) in Kentucky was 66.7 per 100,000 (Kentucky Cancer Registry, 2020a). CRC was the second leading cause of cancer death in the state that year, accounting for 22.6 deaths per 100,000 (Kentucky Cancer Registry, 2020b). In the early 2000’s, over 2,700 cases of CRC were diagnosed in Kentucky each year, with more than half of those cases diagnosed at a late stage (Kentucky Cancer Registry, 2020c).

PSE Solution

In 2008, the Kentucky General Assembly enacted House Bill 415, codified into law as KRS 214.540-544. These statutes established the Kentucky Colon Cancer Screening Program (KCCSP) for three purposes: 1) to increase CRC screening; 2) to reduce morbidity and mortality from CRC; and 3) to reduce the cost of treating CRC among Kentuckians.

Actions/Results

In order to establish PSE change, Kentucky’s cancer screening partners coordinated their efforts through the Kentucky Cancer Consortium’s (KCC) Colon Cancer Prevention Committee (Step 1: Engage). See related PSE Change Example. The Kentucky Cancer Action Plan, developed by the KCC, includes a screening and early detection goal to “identify gaps in colon cancer screening policies” (Step 2: Scan). The plan also includes a data and research section that includes analyzing community and state-level data. To ground their planning, the committee examined CRC screening, incidence, stage at diagnosis, and mortality data for the state, as a whole, as well as by Area Development District (Step 3: Assess). To turn a goal into action, the partners assessed the feasibility of creating the KCCSP through a review of assets needed. They focused their initial screening efforts in areas identified through data analysis. The partners took the following actions:

1. The group, made up of 20 KCC member organizations, convened monthly for more than five years to collaborate on CRC public awareness, advocacy and provider education efforts.
2. Through their collective efforts, the KCCSP was created within the Kentucky Department for Public Health (DPH) in 2008 with no funding allocated.
3. Advocacy partners, particularly the Colon Cancer Prevention Project and the American Cancer Society (ACS) Cancer Action Network (CAN) worked to secure funding for the program. Specific examples included:
   1. Coal Severance Tax dollars (if coal severance revenue in a fiscal year exceeds the official estimate, all the excess revenue is to be allocated to qualifying local governments) were allowed to be used by county judge executives in four counties in the Kentucky Appalachian Region to fund the program in 2010 and in three counties in 2012.
   2. The Kentucky General Assembly provided funding for the 2012, 2014 and 2018 bienniums, in an effort to serve the entire state. This allocated funds for uninsured individuals and provided a sliding fee schedule for the underinsured Kentuckians who were in areas that received funding for this program.
   3. The Kentucky Cancer Foundation (a non-profit founded to raise funds to implement the Cancer Action Plan) provided a one-time match to the state funding.
   4. In 2016, the law was revised to include screening of underinsured individuals; the law also could fund examination, treatment, surveillance, rescreening and treatment, if funds were available.
4. Advocacy partners pursued additional CRC-related policies, including a health insurance mandate and genetic testing for cancer risk.
   1. In 2008, the mandate that health insurers cover CRC services was established as a law (KRS 304.17A-257).
   2. In 2015, the law was revised to address a screening process loophole to ensure a complete CRC screening (i.e., positive fecal test would result in a screening rather than diagnostic colonoscopy), without an additional out-of-pocket co-pay or deductible.
   3. In 2019, a revision was made to reflect updated ACS guidelines.
   4. In 2019, a law was passed (KRS 304.17A-259) that requires health benefit plans to cover genetic testing for cancer risk according to National Comprehensive Cancer Network (NCCN) guidelines. This includes CRC, as well as other cancers with a genetic risk component.

Success Factors and Key Questions Addressed

Were goals and objectives feasible in the then-current economic and political environment?

CRC partner organizations reviewed the political climate and engaged high-ranking state officials (i.e., Governor, Lieutenant Governor, and Chair of the Joint Health & Welfare Committee) to serve as political champions and strong advocates. The KCC then convened partners to write and widely disseminate the “business case” for state and private investment in CRC screening. Since the program was established in 2008, there have been varying levels of economic and political support: it did not receive General Assembly funding until 2012. Although that support ended in 2016, the General Assembly again funded the program in 2018.

What was your capacity to implement this PSE change?

Partners reviewed assets needed to fully and successfully implement the KCCSP and published a corresponding Resource Plan. The plan outlined monetary and non-monetary resources available to the KCC and identified strategies for getting and maintaining the resources still needed to implement priority policies, such as CRC screening programming. The KCC’s Colon Cancer Prevention Committee met regularly to assess progress and make course changes as necessary. Once funding was allocated, it took almost a year to begin program implementation due to the Request for Application (RFA) and contracting processes. The KCC had to develop the RFA, send it to eligible entities, receive and review the RFAs, and provide awards and contracts, while the local entities had to set up local provider contracts.

What resources existed to help implement your efforts?

Through legislation, the KCCSP Advisory Committee was established to provide oversight to the program and reports to the legislature. Since the program was first created in 2008, there has been tremendous in-kind support from several organizations serving as members of the Colon Cancer Advisory Committee, including: the ACS, ACS CAN, Colon Cancer Prevention Project, the KCC, Kentucky Cancer Foundation, Kentucky Cancer Link, Kentucky Cancer Registry, Kentucky Rural Cancer Prevention Center, Kentucky DPH, local health departments, University of Kentucky Markey Cancer Center Outreach Program, elected officials, and many more. The resources that have been contributed by these organizations primarily include staff time toward the following types of activities: advocacy, administration, capacity building, coalition and partnership building, program development, data management and consultation, outreach and education, patient navigation, strategic planning and more.

What resources did you still need to obtain?

Resources and technical support are especially needed to address the most common risk factors for never being screened for CRC: education (less than high school graduate), race (black, other race, multi-racial), income (less than $15,000/year), gender (males) and health insurance (no insurance). Interventions may be more effective when combining approaches to address many barriers, such as attitudes and beliefs, health care provider recommendations and access to screening, cost and insurance coverage (Knight et al., 2015). The KCC coordinates partners to maintain and revise both the Resource Plan and the Cancer Action Plan. A continually updated Resource Plan is needed to provide data on the cost of treatment vs. screening, and on the CRC burden in Kentucky (Knight et al, 2015).

Due to the rapidly changing health care landscape in Kentucky, the KCCSP Advisory Committee meets monthly to discuss how to best reach a wider population of Kentuckians. Their deliberations resulted in the expansion of eligibility for KCCSP screening services, enacted through an administrative regulation change approved in the 2016 legislative session. Now Kentuckians who meet all other eligibility requirements — but are covered by health insurance, are under 300% of the federal poverty level, and have an out-of-pocket maximum that is 5% or more of the individual’s annual income — may receive screening and surveillance services through the KCCSP.

From 2012-2016, the KCCSP funded more than 10 local health department sites. At KCCSP Advisory Committee meetings, KCCSP staff report on the number and type of services provided with program funds and outcomes of these screening services, provide updates on testing procedures, and discuss reports from sites providing screening. The KCCSP Advisory Committee then makes recommendations for the ongoing development of KCCSP program implementation. From 2012-2016, including start-up time and the reduced number of eligible participants due to the enactment of the Affordable Care Act (ACA) and increased insurance coverage for Kentuckians, the KCCSP conducted over 1,000 fecal immunochemical tests, evidencing an 84% return rate. In addition, over 800 colonoscopies have been performed. In 2018, the KCCSP Advisory committee redesigned the program to work with federally qualified health centers (FQHC) and rural clinics that had applied through the RFA process.

Over these years of program implementation, the health care horizon in Kentucky changed with ACA and Medicaid expansion, limiting the usefulness of a program for the uninsured. Equally important issues in public health were costs and pension issues, making it difficult for the state public health department and local health departments to maintain adequate staffing and indirect support for clinical service programs such as these. With redesign, we discovered that FQHCs and rural clinics also face difficulties in managing contracts, conducting outreach and acting as a secondary insurer. Prior to the outbreak of the COVID-19 pandemic in Kentucky in March 2020, the program had been in the process of redesign in order to maximize services for Kentuckians, and there are now new discussions about what will be needed post-COVID-19.

Related Resources

Learn more about the Kentucky Colon Cancer Screening Program or Kentucky Cancer Consortium’s involvement in reducing barriers to CRC screening.

This list of bills and resolutions addressing the screening program illustrates KCC’s sustained efforts over time. Review the legislation for ideas about relevant language that could apply in your jurisdiction.

• House Bill 415 (2008): An act relating to colon cancer screening
• Senate Bill 96 (2008): An act relating to health insurance coverage for colorectal cancer detection
• House Bill 1 (2010): An act relating to appropriations and revenue measures providing financing and conditions for the operations, maintenance, support, and functioning of the government of the Commonwealth of Kentucky and its various officers, cabinets, departments, boards, commissions, institutions, subdivisions, agencies, and other state-supported activities
• House Bill 72 (2010): An act relating to the Colon Cancer Screening Program, and making an appropriation therefor
• Senate Bill 18 (2010): An act relating to health care services provided in clinical trials for the treatment of cancer
• House Bill 265 (2012): An act relating to appropriations providing financing and conditions for the operations, maintenance, support, and functioning of the government of the Commonwealth of Kentucky and its various officers, cabinets, departments, boards, commissions, institutions, subdivisions, agencies, and other state-supported activities
• House Bill 235 (2014): An act relating to appropriations providing financing and conditions for the operations, maintenance, support, and functioning of the government of the Commonwealth of Kentucky and its various officers, cabinets, departments, boards, commissions, institutions, subdivisions, agencies, and other state-supported activities
• House Bill 69 (2015): An act relating to removing barriers to colorectal cancer screening
• House Resolution 241 (2015): A resolution honoring the Colon Cancer Prevention Project on the celebration of its ten-year anniversary
• Senate Resolution 214 (2015): A resolution honoring the Colon Cancer Prevention Project on the celebration of its ten-year anniversary
• House Bill 115 (2016): An act relating to colon cancer prevention and declaring an emergency
• Senate Bill 146 (2017): An act relating to the licensure of genetic counselors
• House Resolution 52 (2017): A resolution urging the United States Congress to remove barriers to colorectal cancer screening
• Senate Resolution 49 (2017): A resolution urging the United States Congress to remove barriers to colorectal cancer screening
• Senate Concurrent Resolution 176 (2018): A concurrent resolution urging the Kentucky Cabinet for Health and Family Services, Department for Medicaid Services, to continue to improve the provision of colorectal cancer screening services to Kentucky Medicaid recipients
• Senate Bill 30 (2019): An Act relating to cancer prevention through insurance coverage for screening and appropriate genetic testing

REFERENCES

Kentucky Cancer Registry. (2020a). Age-Adjusted Cancer Incidence Rates in Kentucky, 1999. Retrieved from https://www.cancer-rates.info/ky/

Kentucky Cancer Registry. (2020b). Age-Adjusted Cancer Mortality Rates in Kentucky, 1999. Retrieved from https://www.cancer-rates.info/ky/

Kentucky Cancer Registry. (2020c). Statewide Cancer Incidence Rates in Kentucky, 2000, 2001, 2002. Retrieved from https://www.cancer-rates.info/ky/

Knight, J. R., Kanotra, S., Siameh, S., Jones, J., Thompson, B., & Thomas-Cox, S. 2015. Understanding barriers to colorectal cancer screening in Kentucky. Preventing Chronic Disease (12). doi: 10.5888/pcd12.140586