Leveraging Health Reform to Combat a History of Cancer: Kentucky to Expand Medicaid, Increase Clinical Trials as U of K Markey Center Gains NCI Status

Evidence-Based Oncology, July/August, Volume 19, Issue SP6

Governor Steve Beshear did not sugarcoat the data May 9, 2013, when he said Kentucky would take an offer it couldn’t refuse. With his state ranked worst in the nation in smoking and cancer deaths, and not far behind in heart disease, Beshear was “tired of being at the bottom.” 1

It was time for strong medicine—in the form of $608 million in new healthcare spending, which will come January 1, 2014, when Beshear accepts federal help to put 308,000 new people on Medicaid.1 Another 800,000 Kentucky residents are already in the program.2

The decision followed Beshear’s 2012 call for Kentucky to create its own exchange to sell health insurance under the 2010 Affordable Care Act (ACA). In theory, all 640,000 uninsured Kentuckians should be able to gain health coverage.3 Cutting Kentucky’s cancer rates is a tall order, and Beshear is candid about the link between that grim history and his state’s economic conditions. Taking the Medicaid money, in his view, was the only choice that made sense.

“Kentucky is one of the least healthy states in the nation. In 2012, Kentucky’s overall health ranking was 44th. Kentucky is at or near the very bottom of many national health rankings,” Governor Beshear told Evidenced-Based Oncology. A multitude of state and national reports have shown the positive impacts on health status that occur when an individual becomes insured. They are more likely to get preventive care and seek out medical treatment when they need it. They miss fewer days of work and school. And they live longer and more productive lives.

“By the time we reach 2020, I believe we will have seen such a measurable impact on prevention of disease, management of chronic health problems, and overall health of our workforce that to withdraw or shrink from Medicaid expansion would be unthinkable.”

Beshear, a prostate cancer survivor, feels he is on solid footing, morally and practically. The expansion affects single persons with incomes of up to $15,856 per year or a family of 4 with an income of up to $32,499;3 many of these are working poor. The infusion of healthcare spending will create 17,000 jobs and $15.6 billion in economic activity,1 reduce absenteeism, and improve job performance to make Kentucky workers more attractive to industry.

Over time, Beshear believes, healthier children will miss fewer days at school, and the commonwealth will see economic benefits from a healthier population.4 All this will require confronting Kentucky’s historic links to coal and tobacco, and resulting rates of cancer, especially lung cancer. “While my primary concern is for the improved health outcomes that will be possible for many of our citizens through the expansion of Medicaid, my decision was not solely based on the obvious health benefits that extending insurance coverage will provide to the people of Kentucky. It was also based on the far-reaching economic benefits of expanding Medicaid,” Beshear said.

“If a company was willing to invest $15.6 billion in Kentucky in the next 7 years, creating nearly 17,000 jobs and significantly reducing the uninsured population, while greatly improving the health of our citizens, we would not hesitate to welcome them into our state. Medicaid expansion is no different.”

Kentucky health officials must overcome political and logistical hurdles, not to mention cultural ones. A fee-for-service delivery system, saddled by ignorance, poverty, and occasionally the belief that “God’s will” would determine the outcome, had to be replaced by one that relied on regular screenings and outreach. Healthcare advocates and observers said the record of failure meant that when the state’s poor interacted with the medical system, there were few expectations. “Folks are not accustomed to getting healthcare and having healthcare work,” said Susan Zepeda, PhD, president of the Foundation for a Healthy Kentucky. “They may have family members who were diagnosed so late that the diagnosis was a death sentence.”

But critics of Kentucky’s approach say the state has rushed too quickly into managed care, in a quest to upend delivery systems that caused some low-income or rural residents to wait too long to seek treatment.5 In the breathtaking sprint to move 70% of the state’s 800,000 Medicaid recipients into managed care organizations (MCOs) for the first time, Kentucky Medicaid Commissioner Larry Kissner admits there were many bumps.

Over the long haul, however, Kissner insists the accountability of managed care under health reform will make a difference: In the first year, he said, officials are reaching more than 80% of Medicaid patients for regular screenings; once that baseline is established, officials will be able to track progress in measurements like blood sugar over time. Better still will be when more consistent healthcare shows up in higher test scores among school-age children, or lower smoking rates in the next generation of adults.

From academia to government, those who know Kentucky’s system hope to finally bridge a gap that has long existed: In a commonwealth with world-class healthcare at universities in Louisville and Lexington, there are aching needs among some of the most isolated, impoverished poor in the nation.

On paper, Kentucky envisions a system of federally funded health centers and managed care networks, providing regular screenings like colonoscopies and mammograms. Telephone calls would remind cancer patients when to come in for care, and will provide follow-up that the old system never could.

It remains to be seen whether cancer care delivery under Kentucky’s new model can serve a rural population. Steven W. Wyatt, DMD, MPH a veteran of the Centers for Disease Control and Prevention (CDC) who returned to his native state to become dean of the College of Public Health at the University of Kentucky, said getting more rural people enrolled in Medicaid is only the first step. “Just because you remove the cost barrier doesn’t mean you are going to increase the access,” Wyatt said. “It’s all about other things that surround the payment of services.” Things like transportation, or missing work, or not having anyone to watch a child or grandchild, or just the fear factor of coming to a modern campus like the Markey Cancer Center in Lexington. “Navigating a university setting can be intimidating,” he said.

Zepeda concurred. Although Kentucky has a “more robust” network of federally funded health centers than existed even 5 years ago, she said, expanding Medicaid rolls and subsidized insurance mean “there will be capacity issues, particularly in rural areas of the state.”

Open Enrollment Approaches

With open enrollment under the ACA set to begin October 1, 2013, the pace of change remains swift. On May 9, Governor Beshear declared the Medicaid expansion “the single-most important decision in our lifetime for improving the health of Kentuckians,” and invoked his right to change Medicaid eligibility by regulation, not by statute as occurs in most states. Until 2017, when the expansion will require state matching funds, there is little the Legislature can do.6

Within days, Kentucky had launched a website (www.kynect.ky.gov) to help residents understand healthcare reform and to shop for coverage. A series of forums with the state’s Medicaid providers followed, allowing them to get information and to vent about the rapid conversion to managed care. Kentucky’s healthcare efforts appeared in the national press almost daily in July; on some days the news was positive, like when the National Governors’ Association (NGA) included Kentucky in a demonstration project to reduce the number of “super-utilizers” in its emergency departments.7 On other days, the reviews were poor: Kaiser Health News and The Washington Post offered a brutal assessment of the Medicaid program’s transition to managed care, with critics stating that its only aim was to fill a $1.3 billion budget hole.5

July 12 offered the biggest news of all: After years of effort, the University of Kentucky’s Markey Cancer Center received a National Cancer Institute (NCI) designation, giving Markey eligibility to compete for millions in additional funding and the best faculty in the world. In their announcement, Markey officials said that Kentucky residents would gain access to better chemotherapy agents and to clinical trials.11 University of Kentucky President Eli Capilouto, in making the announcement, said the designation strengthens Markey’s potential “to roll back this scourge in Kentucky.”12

Fighting Lung Cancer

Kentucky’s fight against lung cancer starts with this fact: According to the Department of Public Health, 28.4% of the commonwealth’s adults smoke.9 It’s not easy to curb tobacco use when generations of farmers have grown it, and when tax coffers have relied on its sale (Figure 1). “Our disease burden is heavily driven by lung cancer,” said Wyatt. While there are some other anatomical cancers with elevated rates relative to the rest of the country, such as breast and colon cancer, Wyatt said nothing comes close to lung cancer. “Take out lung cancer, and we look closer to the rest of the country.”

State-by-state mortality rates bear out Wyatt’s observation. SEER data, published by the NCI and the CDC, show lung cancer death rates in Kentucky of 71.7 per 100,000 residents among whites and 76.7 per 100,000 among African Americans for 2006 to 2010; corresponding rates for the United States were 48.1 among whites and 50.7 among African Americans.10 While rates for some other cancers exceed US rates, nothing comes close to lung cancer (Figure 2).

It’s not hard to understand why: At 87,641 acres, Kentucky devotes more land to growing tobacco than any other state except North Carolina, according to the US Department of Agriculture.11 But over the past decade, tobacco’s hold on the state’s economy has slipped. In the mid-1990s, University of Kentucky economist Will Snell estimated sales of Kentucky tobacco at $900 million; by 2009, a combination of fewer farms and lower prices had cut that figure to $390 million.12people around the nation were quitting, driven by greater knowledge, higher state taxes, indoor smoking bans, or a combination of the 3. And bans weren’t just happening elsewhere: On July 1, 2003, the college town of Lexington was the first in Kentucky to pass a smoking ordinance, which was upheld by the Kentucky Supreme Court the following year.13 As of July 1, 38 Kentucky towns or counties had indoor bans of varying degrees.13 In February 2013, a statewide indoor ban passed a Kentucky House committee for the second year in a row, although its prospects in the Senate were unclear. Governor Beshear has publicly endorsed the indoor ban.14

Sarah Walsh, Foundation for Healthy Kentucky program director, said polling data from early 2013 show that for the first time, more than half of adults in Kentucky of both parties support an indoor smoking ban. This is important politically, because it reduces fears of elected officials that they would be challenged in a primary for supporting a smoking ban. Overall, the poll, which was funded by the Foundation and conducted by the Institute for Policy Research at the University of Cincinnati, found that 59% of adult Kentuckians support an indoor smoking ban. These findings confirmed a University of Kentucky study that found support for smoke-free laws in rural areas.15,16

Commissioner Kissner said healthcare reform, and the expansion of Medicaid in particular, will allow Kentucky to reach a whole new population with programs to help people quit smoking. This will follow a near doubling of the program from 2011 to 2012, when Governor Beshear expanded it. Participation nearly doubled from 3431 to 7015, and expenditures rose from $234,517 to $527,289.17 Before 2011, Kissner said, Medicaid only funded programs for pregnant women. Now, “we pay for everyone.”

He knows, however, that progress among adults will be slow. Tucked in the most recent CDC figures, hope comes from data showing the share of teenagers aged 12-17 who took their first cigarette fell dramatically between 2002 and 2009, taking Kentucky out of the worst ranking into 10th.18

Managed Care Revolution

When Kissner became Commissioner in July 2012, Kentucky’s march to managed care was at full throttle. Faced with a need to trim $1.3 billion from its Medicaid budget, Kentucky had announced in April 2011 that it would move beyond a managed care pilot in Louisville and enroll 560,000 Medicaid recipients into MCOs—which had to be publicly noticed, bid and awarded—between April and November 2011.19 That schedule avoided more dire consequences like cutting reimbursements 35% or pushing recipients off the rolls.

By March 2013, providers were complaining, and 1 MCO, Kentucky Spirit, wanted out. Providers wrote op-eds and petitioned the Legislature about slow payments, contract cancellations, inadequate networks, or patient referrals to far-off providers.20 In Eastern Kentucky, which is especially rural and poor, patients complained of inadequate mental healthcare.21 The Kaiser story profiled a family denied payment for a child’s nutrition supplement that had been covered under the old system.5 In an interview, Kissner acknowledged the complaints; he had just completed 8 regional forums with other health officials, where providers offered feedback ahead of the Medicaid expansion.

“The biggest complaint was the speed” with which the changeover occurred, he said. Providers accustomed to just dealing with “Medicaid” suddenly could be dealing with any one of 3 vendors, and each had a slightly different authorization system. Kissner insists that in time, the “3-legged stool” of better care coordination, education, and preventive care will be positive for patients, both for catching cancer early and for treating it. Health experts who spoke with Evidence-Based Oncology (EBO) all said Kentucky’s high cancer mortality rate has been driven by the number of tumors caught late when there is little that can be done. That’s where managed care can do a better job of making sure patients get preventive screenings to catch cancer early, Kissner said. And once treatment starts, he believes MCOs are better equipped than the old system, through telephone calls or other means, to remind patients to stick with treatment.

“The managed care companies do a much better job of care coordination than we did with fee-for-service,” Kissner said. Ultimately, experts who spoke with EBO said the test once healthcare reform arrives is whether health officials can change the way the population thinks. But they know it won’t be easy.

“There’s a fatalism,” in some parts, Kissner said. “A thinking that says, ‘Everyone in my family dies of cancer.’ … Hopefully managed care can help address that.”

By keeping people insured, either through expanded Medicaid rolls or greater use of subsidized insurance, the hope is that fewer people will come on and off insurance. If they get insured and stay there, and their children stay there, chances are greater the family will get into the habit of seeking medical care regularly, not just when a crisis arises.

Wyatt knows it will take time. Even though he grew up in Kentucky, he said it’s easy to forget how challenging it can be to make changes in rural areas.Working with churches can help, getting to know local opinion leaders can help. For the HPV vaccine, he said, it’s not enough to convince parents; sometimes healthcare workers must convince grandparents.

“Removing the geographic barrier is very, very hard,” Wyatt said.1. Gov. Beshear expands health coverage to over 300,000 Kentuckians. May 9, 2013. Governor Steve Beshear’s communications office. Frankfort, Ky. Commonwealth of Kentucky. http://migration.kentucky.gov/Newsroom/governor/20130509medicaid.htm. Accessed July 21, 2013.

2. Cabinet for Health and Family Services. Cabinet solicits information regarding Medicaid managed care initiatives. January 5, 2011. Frankfort, Ky. Commonwealth of Kentucky. http://chfs.ky .gov/news/DMS+Managed+Care.htm Accessed July 23, 2013.

3. Gov. Beshear issues executive order creating Kentucky health benefit exchange. July 17, 2012. Governor Steve Beshear’s communication’s office. Frankfort, Ky. Commonwealth of Kentucky. http://migration.kentucky.gov/Newsroom/gov ernor/20120717healthexchangeadvisoryboard. htm. Accessed July 22, 2013.

4. Lucy May. Kentucky Gov. Beshear decides to expand Medicaid in Kentucky to boost ‘abysmal health outcomes. May 9, 2013. WCPO Digital. Covington, Ky. http://www.kypost.com/dpps/shared/citing-abysmal-health-outcomes-besheardecides-to-expand-medicaid-in-kentucky_8480 448#ixzz2ZzKQsMtM Accessed July 23, 2013.

5. Bergal J. Kentucky’s rush into Medicaid managed care: a cautionary tale for other states. July 14, 2013. Kaiser Health News/The Washington Post. Greensburg, Ky. http://www.kaiserhealthnews. org/Stories/2013/July/14/kentucky-medicad-managed-care.aspx Accessed July 14, 2013.

6. Brammer J. Judge denies Beshear’s request to dismiss lawsuit against Medicaid expansion. July 1, 2013. Kentucky.com. Lexington, Ky. Accessed July 24, 2013. http://www.kentucky .com/2013/07/01/2700008/judge-deniesbeshears-request.html

7. Kentucky Press News Service. Kentucky chosen for project to reduce health costs while improving care. Kentucky.com Lexington, Ky. July 18, 2013. http://www.kentucky.com/2013/07/18/719630/kentucky-chosen-for-project-to.html

8. Ungar L. Program offers aid to ER ‘superutilizers’ to cut costs. Louisville Courier-Journal/USA Today. April 13, 2013. http://www.usatoday.com/story/news/nation/2013/04/13/program-helps-frequent-er-patients/2080855/Both accessed July 18, 2013.

9. Perry A. Markey earns prestigious National Cancer Institute Designation. Markey Cancer Center, July 12, 2013. University of Kentucky, Lexington, Ky. http://www.ukhealthcare.uky. edu/markey/news/07122013-NCI-designationpress-release/ Accessed July 15, 2013.

10. Prevalence of adult smokers, 2012. Survey Data provided by Irene Centers, Department of Public Health, Frankfort, Ky. Commonwealth of Kentucky. July 23, 2013. 11. Howlader N, Noone AM, Krapcho M, et al (eds). SEER Cancer Statistics Review, 1975-2010, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2010/, based on November 2012 SEER data submission, posted to the SEER website, April 2013.

12. Campaign for Tobacco-Free Kids. Report on 2007 Census of USDA Tobacco Census. Accessed July 23, 2013. http://www.tobaccofreekids.org/research/factsheets/pdf/0125.pdf

13. O’Farrell, P. Kentucky and tobacco: It’s complicated. Cincinnati.com. Cincinnati, Ohio. January 30, 2011. http://news.cincinnati.com/article/20110130/EDIT03/101300357/Kentucky-Tobacco-s-Complicated Accessed July 22, 2013.

14. Hahn E. Making Kentucky a smoke-free state.Letters to the editor, Courier-Journal, Louisville, Ky., July 24, 2013.

http://www.courierjournal.com/article/20130724/OPINION02/307240036/1016/opinion/Letter-Making-Kentucky-a-smoke-free-state Accessed July 24,2013.

15. Musgrave, B. Proposed statewide smoking ban clears Kentucky legislative panel. Lexington-Herald Leader, Lexington, Ky. February 7, 2013. http://www.kentucky.com/2013/02/07/ 2507141/statewide-smoking-ban-clears-kentucky.html Accessed July 24, 2013.

16. Statewide smoke-free law gains support in Kentucky. Foundation for a Healthy Kentucky, Louisville, Ky., January 7, 2013. http://www.healthy-ky.org/news-events/newsroom/statewide-smoke-free-law-gains-support-kentucky

17. Rayens MK, Hahn E, Langley R, Zhang M. Public support for smoke-free laws in rural communities. Am J Prev Med. 2008;34(6):519-522.

18. Smoking Cessation Drug Utilization Expenditures, 2008-2012, Kentucky Department of Public Health, bar graph provided by Irene Centers. July 23, 2013.

19. Centers for Disease Control and Prevention. Smoking and Tobabcco Use. State Reports, Kentucky.Accessed July 19, 2013. http://www.cdc.gov/tobacco/data_statistics/state_data/state_ highlights/2012/states/kentucky/index.htm

20. Telephone Interview with Kentucky Medicaid Commissioner Larry Kissner, July 18, 2013. Warman H; Lovell C. Medicaid recipients illserved under Kentucky’s new managed care system. The Paducah Sun. March 4, 2013. http://www.paducahsun.com/pages/full_story_free/push?article-Medicaid+recipients+ill-served+under+++Kentucky%E2%80%99s+new+managed+car e+system%20&id=21869180.

21. Musgrave B; Honeycutt-Spears, Health care providers say Medicaid managed care riddled with problems, Kentucky.com, Lexington, Ky, February 8, 2012. http://www.kentucky.com/2012/02/08/2061060/health-careproviders-say-medicaid.htm.