Undergoing colorectal screening can be a challenge for people who don’t have insurance or are underinsured, so a private advocacy group was created in Kentucky that helped establish programs to improve access to screening.
“In the commonwealth of Kentucky, we have programs that are established through state codes from our legislature that will make sure that underinsured or uninsured patients have access to care free of cost so that the financial implications should not be a detriment or shouldn’t decrease access to care,” Douglas Flora, MD, a medical oncologist and executive medical director of oncology services at St Elizabeth Healthcare in Edgewood, Kentucky, said in an interview with Targeted Therapies in Oncology.
The advocacy group that launched these programs was the Colon Cancer Prevention Project founded by Whitney Jones, MD. This group and several partners advocated for the creation of the Kentucky Colon Cancer Screening and Prevention Program (KCCSP). When Jones first started his advocacy, Kentucky ranked 49th in the nation for screening, first in incidence, and first in mortality. Now Kentucky ranks 20th in the nation for screening. Its colon cancer statistics have shown a 25% reduction in incidence and a 28% reduction in mortality.1
“Our first goal is to help [prevent] people from getting cancer, not [just] help them once they get it,” Jones said in an interview with Targeted Therapies in Oncology. Although treatment of CRC is improving, he said, there is a great opportunity to prevent the disease or catch it at an early stage. This can be through removing high-risk polyps or identifying those who are at high risk through family or genetic history. Offering more frequent or a broader panel of screening and surveillance methods, including for people without insurance, will make these options more feasible.
Inspired by New York City’s Efforts
Jones, a retired gastroenterologist, is also head of Upstream Health Strategies, LLC, a consulting firm working to implement technology to improve cancer screenings. He began advocating for cancer screening coverage 18 years ago and has made large strides for individuals in Kentucky who don’t have the means to get the necessary CRC screenings.
“Initially, what drove us to a free program for the uninsured was the lack of access,” Jones explained. “This was pre-Medicaid expansion [in Kentucky] back in the 2000s. I was inspired by the [New York City’s] program for uninsured people across their entire public health hospital platform.” He founded the Colon Cancer Prevention Project in 2003, and the advocacy organization has been working to drive the conversation surrounding these screenings to the top of the agenda ever since.
In 2008, Jones helped get the KCCSP and its advisory committee approved. The program is housed in the Department for Health under the Cabinet for Health and Family Services in Kentucky. The 2008 legislation mandated coverage for cancer screenings, including CRC screening coverage through commercially sold insurance products and the formation of the unfunded CRC screening program. Since KCCSP was created, the advisory committee meets monthly to work on solutions to the challenges created by lack of insurance or under insurance, as well as increasing CRC screenings for all eligible Kentuckians. Jones feels the committee was critical to the process.
Kentucky Colon Cancer Screening Program
Then in 2012, Jones lead the formation of the Kentucky Cancer Foundation to raise private funds and advance a public–private funding partnership with state government to deliver screenings. With the backing of the Kentucky legislators, enough money was contributed to fund the KCCSP.
“Our program for CRC screening not only helps you if you are uninsured, but it also helps you if you’re underinsured, because a lot of people have insurance [with] high deductibles. There’s a percentage of your family income that, if your colonoscopy or your service costs above that, [this] will help supplement it even if you have existing health insurance but have lower access to coverage because of deductibility,” Jones said. He also said the program frequently helps the underinsured with follow-up if they had cancer or polyps in the past.
Instead of creating new financial guidelines for the Kentucky programs, the same poverty levels used for other services such as breast and cervical cancer programs throughout the United States are used to decide who is eligible for the free screenings. Individuals in households at or below 250% of the federal poverty level are eligible for the CRC screenings.2
Currently, the screenings are being paid for by a grant from the Kentucky legislature and from private donations. The screening program receives an appropriation of approximately $500,000 a year to operate.
These screenings are not only saving lives of people who are uninsured but they also are saving resources. The program estimates that statewide, due to all of these efforts including the KCCSP, approximately 400 people this year won’t receive a diagnosis of CRC because of these screenings, saving a minimum of $40 million in health care costs for treatment of the disease. “To me it’s a win-win, whether you’re on the fiscal side or you’re on the humanitarian side, [although] I don’t really think there are 2 sides. I think they serve the same goal,” Jones said.
Flora agreed. “The third-party payers would much rather find patients in a less expensive, curable setting than later on when they need expensive chemotherapies and in greater interventions,” he said.
As for the screening, there are multiple options. Originally, the main focus was on colonoscopies, but they are more costly and not always necessary, so the program now uses fecal immunohistochemical testing (FIT) and recently added the multitarget stool DNA test marketed as Cologuard.
FIT is a highly accurate and specific test that looks for nondegraded human hemoglobin in stool specimens, according to Jones. If individuals are tested every year, there’s enough cumulative sensitivity for early detection of tumors. “Many groups that have disparities want stool testing rather than colonoscopy-based testing because of convenience or other issues, so we feel it’s important to offer the entire menu of evidence-based screening options for the people we serve at the state level,” Jones said.
The program uses a blended strategy by relying on risk stratification. If an individual is at high risk, it will be recommended that they get a colonoscopy. Average-risk, age-appropriate individuals without symptoms who are at normal risk have the choice of a colonoscopy, FIT, or stool DNA test. Recently, the state program received a donation from diagnostic company Exact Sciences of 1000 Cologuard noninvasive stool DNA tests, a donation valued at approximately $600,000. This was “part of implementing new technology, especially molecular diagnostics, to be an early adopter into the future of cancer prevention and screening,” Jones said.
Further application of newer technology includes a bill passed in 2019 in Kentucky that requires a health benefit plan to cover genetic tests for cancer if recommended by a health care provider and in line with genetic testing guidelines from the National Comprehensive Cancer Network (NCCN).3 The NCCN guidelines were chosen because they are the most widely accepted and are continuously updated, so as the guidelines change, the coverage mandates change, as well. Both commercial insurers and Medicaid services in Kentucky cover the genetic testing for those who need it.
Flora described it as similar to advancement of technology in other areas. “It used to be impossible to think that everyone could afford a cell phone and now we wouldn’t imagine going through a day without it. I don’t think we’re that far away from that for genetic testing. You can have a formal genetic profile for around $300 that covers all the cancer genes. That cost is coming down each year, very quickly,” Flora said.
The success seen with CRC screenings since coverage for uninsured or underinsured individuals became available is also being seen with genetic testing, according to Flora. The $300 genetic test can help identify and save multiple people in a family who may be at risk for CRC.
Additionally, the bill covering genetic testing also lowered the age of CRC screening coverage from 50 to 45 years.3 CRC in young patients is a critical issue in Kentucky, which has the nation’s highest incidence of CRC in individuals under age 50.4 Jones and his colleagues will be putting individuals who are high risk based on family history at the top of their agenda. Risk assessment will be completed first, instead of leaving it to the end of the discussion during CRC screening.
Usually, individuals who are at risk have a positive family history. Because of this, Flora says it’s important to take a careful family history when patients come in for screening by asking multiple specific questions, such as the age of the family member when they received a diagnosis and what type of cancer they had, instead of asking only if a family member had cancer.
“It certainly has significantly different risk profile and discussion if a patient has 3 brothers with colon cancer before the age of 50 [as compared with] the only family history was [their father who] had prostate cancer at 82. The former suggests genetic profiles are at risk. The latter is an age-related, natural thing,” Flora said.
Approximately 60% of those who receive a diagnosis of CRC under age 50 do not have a significant family history and present with symptoms, according to Jones. The Kentucky Screening Program not only offers screening, but also evaluates symptoms to see if a screening is needed.
“There are so many stories of delayed diagnosis in the younger population who’ve shown up with bleeding or abdominal issues or bowel issues…that can’t happen anymore. We have to listen to and evaluate these people immediately,” Jones said.
Screening programs look at factors such as smoking, obesity, and diet, and then evaluate family history to identify those who are at high risk. Approximately 1 in 5 people should be screened at 40 years or younger, based on family history, according to Jones.
The American Cancer Society includes individuals 45 year and above in their screening guidelines,5 and those between the ages 45 and 49 will be included in the new United States Preventive Services Task Force guidelines if approved this year.6 Jones believes all states should prepare to screen individuals at age 45.
“We think 45 is the finish line for communication, not the starting point,” Jones said. “I want people to think about going on offense in their states and using classical communication and marketing strategies and applying those to public health.”
Flora believes another important focus right now is the disparities of care. “We all too often screen our insured patients well, and people who have means well, but I’m very discouraged when I see that the data suggest we don’t take as good care of the others: patients who come from socioeconomically disadvantaged groups, patients who live in communities of color, patients who are of different races or creeds [who] aren’t traditionally well insured,” Flora said.
According to Flora, people making over $75,000 generally get screened at rates well over 80%, while those in lower income groups struggle to reach 40%. If the barrier of financial burden is keeping people from being screened, then coverage for people who are underinsured or uninsured will make a difference.
“I think that we have a responsibility as a society to take care of them, as well, and fight as a team to reduce difficulties that they encounter in their daily lives with education, access, transportation, help with payment, and those sorts of things,” Flora said.
Following Kentucky’s Lead
Other steps for states looking to follow Kentucky’s lead to take include prioritizing screening capacity and prevention capacity according to the diseases that affect the state the most. Jones said that by giving appropriate resources and distributing money raised by advocacy to those diseases, more can be done to prevent them.
“It’s becoming clear to us that prevention and screening are better care. We know that finding a cancer at its earliest and faintest footsteps gives us the best opportunity to have that patient sitting at the kitchen table 5 years later,” Flora said. “…As we’ve seen these legislative bodies weigh in and improve access to care, and advocacy groups [such as] the Colon Cancer Prevention Project combining with forces with groups [such as] the American Cancer Society and the Kentucky Society of Clinical Oncology, I think we’re really pushing this forward, because it is a daily discussion around here.”
1. About the project. Colon Cancer Prevention Project. Accessed March 8, 2021. https://bit.ly/3v6ImhW
2. Colon cancer prevention program. Kentucky Cabinet for Health and Family Services. Accessed March 15, 2021. https://bit.ly/38IYFaZ
3. Senate Bill 30. Kentucky General Assembly. March 19, 2019. Accessed March 8, 2021. https://bit.ly/38nO8Sm
4. Leading cancer cases and deaths, all races/ethnicities, male and female, 2017. Centers for Disease Control and Prevention. Accessed March 8, 2021. https://bit.ly/3rFC6va
5. Colorectal cancer screening guidelines. American Cancer Society. Accessed March 8, 2021. https://bit.ly/3v80sAb
6. Draft recommendation statement: colorectal cancer: screening. US Preventive Services Task Force. October 27, 2020. Accessed March 8, 2021. https://bit.ly/3bs13EN