Threat to Cancer Care From State Policies

Kerry Dooley Young

July 02, 2019

WASHINGTON — State governments are working on a mix of potentially harmful and beneficial policies for people with cancer, experts say.

Many of the speakers here at the June 27 policy summit held by the National Comprehensive Cancer Network (NCCN) gave examples of how state policies — and proposals for new policies — are potentially harmful to cancer patients.

The United States has "50 different experiments going on out there" when it comes to cancer care. Decisions made in state capitals have a significant effect on treatment, said Lee Jones, MBA, a patient advocate from Arlington, Virginia, who served on a panel at the NCCN meeting.

"It shouldn't be a crapshoot depending on what state you live in to determine what level of cancer care you end up getting," Jones said.

For example, states have responded in various ways to a 2018 Trump administration policy that allows extensions of what were intended to be short-term insurance plans. These plans were originally intended to cover gaps in coverage, such as those that occur when people change jobs.

As such, the plans do not need to comply with the mandates of the Affordable Care Act (ACA) of 2010 and may leave consumers vulnerable to costly medical bills for serious illnesses, said Keysha Brooks-Coley, MA, of the American Cancer Society Cancer Action Network (ACS CAN).

"From our perspective, the short-term limited-duration plans are not adequate coverage," Brooks-Coley said during an NCCN panel discussion. "Oftentimes, people are buying them and they don't know what they are purchasing."

The Trump administration has promoted the approach of long-term use of what are still called short-term plans as a way to lower costs for consumers. However, New Jersey's state insurance officials in May 2018 told the Centers for Medicare & Medicaid Services (CMS) that extended use of short-term plans would not be permitted, becuse they would offer "significantly inferior coverage."

California effectively banned long-term use of short-term plans in September 2018. The state's Attorney General Xavier Becerra called them "stripped-down, junk health insurance plans that don't provide the reliable, comprehensive coverage families need when an emergency occurs leading to bankruptcy."

The Obama administration in 2016 capped use of short-term plans to 3 months, the ACS CAN said in a report on short-term plans released last month.

Under the 2018 final rule, the Trump administration allowed short-term plans to be sold for a term of up to 1 year. At the insurer's discretion, these plans can be renewed for as many as 36 months in the absence of a prohibition against the sale of back-to-back plans, the ACS CAN report said.

"Policymakers should consider prohibiting the sale, or at the very least limiting the availability of short-term plans," ACS CAN recommended in its report.

At the NCCN meeting, Brooks-Coley highlighted some of the report's findings.

For example, the ACS CAN examined what might happen to a 57-year-old woman who was a nonsmoker and was diagnosed with breast cancer. A 3-month plan would cover a little less than $60,000 of the estimated cost of services she would need. The woman's share of the treatment might top $111,000, plus an additional $363.90 for premiums ($121.30 per month).

After 3 months, the woman in this scenario might become ineligible for subsequent coverage. Her cancer would be considered a preexisting condition, the report said. An insurer could not do this to a consumer enrolled in an ACA-compliant plan.

"Short-term limited-duration plans take us back to a marketplace that looks much like it did prior to the Affordable Care Act," Brooks-Coley said at the NCCN event.

Biggest Policy Issue in the American South

The ACA also created a path for covering more of the working poor through Medicaid expansion. At the NCCN meeting, a Texas oncologist said the biggest policy issue for his state — and for much of the American South — is the refusal of lawmakers to take advantage of federal money offered for Medicaid expansion. GOP governors have said they decided against Medicaid expansion because of the potential cost it would entail for their states.

It really puts a lot of people literally on the street. Dr John Cox

"I can understand the budgetary lens of it, but it really puts a lot of people literally on the street," commented John V. Cox, DO, MBA, an oncologist from Dallas, Texas.

As of May 2019, Texas was among the 14 states that had not yet used the ACA's path for expanding Medicaid, according to a tally kept by the nonprofit Kaiser Family Foundation.

The ACA encouraged states to set the income cap at 138% of the federal poverty level by initially fully funding the cost of this expansion. States that took this offer will in future years have to contribute at most 10% of the total cost of enrollees in the new eligibility category. Still, the state's share of the cost of Medicaid expansion is considerably less than the roughly 25% to 50% of the cost that states pay for other citizens enrolled in Medicaid, said researchers from the nonprofit Commonwealth Fund in a recent blog post.

Speakers at the NCCN event also raised concerns about a new wave of Medicaid requirements that could leave people without medical coverage while they seek treatment for cancer.

John R. Edwards, MD, a specialist in bone marrow transplant who works for Franciscan Health in Indianapolis, Indiana, noted that the recent Medicaid expansion had made a difference in his state. Indiana instituted a limited expansion of Medicaid on its own in 2007 under Gov. Mitch Daniels.

Still, Edwards recalled sometimes seeing patients who did not have any medical insurance when he began working in Indiana around 2013. In 2015, then‒Indiana Gov. Mike Pence, who is now vice president, agreed to use the ACA's Medicaid expansion, known as the HIP 2.0 plan.

What I see now is that our patients come in with some kind of insurance. Dr John Edwards

"What I see now is that our patients come in with some kind of insurance," Edwards said at the NCCN event. "Our bigger impediment now is the administrative bureaucracy, even at the state level, is just slowing things down."

Indiana's Medicaid expansion has included a system of penalties for failure to make payments toward coverage. Supporters of this approach, including current CMS Administrator Seema Verma, have described this as a method to promote responsibility among those receiving the assistance. The 2007 Indiana Medicaid expansion was designed to require participants to make mandatory monthly contributions, ranging from 2% to 5% of income, up to $92/month, to what was called a POWER Account, akin to health savings accounts, wrote Verma and her coauthor, Mitchell Roob, in a 2008 article in Health Affairs.

"To prevent participants from obtaining temporary coverage, penalties are stiff for payment lapses," Verma wrote. "Participants have up to 60 days to make their contribution and are then terminated and cannot reapply for twelve months if a payment is missed."

This approach can be disruptive to care of people who rely on Medicaid for cancer treatment, Edwards said. At the NCCN meeting, he spoke of patients losing their Medicaid coverage for infractions such as failing to submit small copays. People living in or near poverty often have difficulty keeping track of such bills, he said.

"They didn't pay it because it got mailed to them and they changed addresses six times in the last six months, or because they are housing deprived or they don't have email or they don't have a phone or the sister has the phone in some other county," Edwards said. "For $2, their coverage has dropped."

About 13,550 people in Indiana lost their coverage because of failure to pay a premium in the first years of HIP 2.0's operations, according to an analysis published last year by the Kaiser Family Foundation.

Indiana also is one of about 16 states that are in the process of trying to add work requirements to their Medicaid programs, according to a tally maintained by the Kaiser Family Foundation. These rules are intended to link continued medical coverage to a participant's employment or time spent seeking employment or engaged in community activities. CMS' Verma has been a leading proponent of work rules for Medicaid.

"Community engagement requirements are not some subversive attempt to just kick people off of Medicaid," Verma said in a 2018 speech. "Instead, their aim is to put beneficiaries in control with the right incentives to live healthier independent lives."

Critics of this approach note that many people who are enrolled in Medicaid already work but may have difficulty using their state's online reporting systems and other tools to document their employment.

The New England Journal of Medicine published a study in June 2019 that found that the bureaucratic procedures of an Arkansas work requirement contributed to almost 17,000 adults losing Medicaid coverage within the first 6 months of its implementation.

The work rules pose a particular risk for people with cancer, Brooks-Coley of the ACS CAN said at the NCCN meeting.

"Cancer patients oftentimes are told by their oncologists they cannot work during treatment or oftentimes during their survivorship," she said, "so we have a population of patients who may not have access to that coverage because they can't work."

Indiana's requirements are slated to kick in on July 1. Many people on the state's Medicaid program will at that time be required to spend at least 20 hours a month working or searching for a job or being engaged in the community. The number of hours required to meet the Gateway to Work requirement will rise incrementally to a maximum of 80 hours a month by July 1, 2020. Failure to meet these requirements may result in a temporary loss of Medicaid coverage.

When contacted by Medscape Medical News, Indiana's Family and Social Services Administration said cancer is among the illnesses that can lead to a person's being exempt from work requirements. At the top of its Web page about these so-called medically frail exemptions, Indiana's Family and Social Services Administration includes a banner notice: "Note: Having a condition on this list does not guarantee you will be considered frail. Severity of your condition may also be evaluated."

The Indiana social services agency said efforts would be made to help anyone who lost coverage while undergoing cancer care. Indiana's Gateway to Work program has a specialized customer service unit that contacts people whose coverage has been suspended and works with them to bring them back into compliance, said Marni Lemons, a spokeswoman for the department. People who are diagnosed with cancer during a suspension of their Medicaid "can call this unit to discuss how to restart their coverage," Lemons told Medscape Medical News in an email.

In 2017, the ACS CAN asked the Department of Health and Human Services to block Indiana from instituting lockout periods for people who did not meet its Medicaid work requirements.

Being denied access to one's cancer care team could be a matter of life or death for a cancer patient. Christopher Hansen

"For those cancer patients who are mid-treatment, a loss of health care coverage — even for a month — could seriously jeopardize their chance of survival," Christopher W. Hansen, then president of the ACS CAN, wrote in a letter to HHS. "Being denied access to one's cancer care team could be a matter of life or death for a cancer patient and the financial toll that the lock-out would have on individuals and their families could be devastating."

Some Good News

The NCCN meeting included good news for oncologists about state activities. Massachusetts is among the states working to force insurers to more carefully consider step therapy requirements for medicines, Anne Levine, MEd, MBA, of Dana-Farber Cancer Institute, told the audience at the NCCN event.

Massachusetts State Rep. Jennifer Benson, a Democrat, has about 40 bipartisan cosponsors for a bill that would create guidelines for insurers' so-called "fail first" policies. The measure calls for establishing a clear path for physicians to override "fail first" policies in cases in which patients require quick access to the treatments originally prescribed by their physicians.

Massachusetts also is among the states where lawmakers have introduced legislation to guarantee coverage of procedures to help people have children after cancer treatment. Other states include California and New Jersey, Joyce Reinecke, executive director of the Alliance for Fertility Preservation, told Medscape Medical News in an email. Six states, including Connecticut and New York, already have mandated this coverage, Reinecke said.

The NCCN highlighted these efforts by making Matthew Lesser, deputy majority leader of the Connecticut State Senate, the keynote speaker for the June 29 meeting on state policies.

Lesser spoke about how his own experience of being diagnosed with testicular cancer at age 29 led him to become interested in insurance coverage for fertility preservation. It took several tries, but in 2017, Connecticut passed a law requiring insurance coverage for fertility preservation for those undergoing cancer treatment.

In his talk at the NCCN meeting, Lesser spoke of gaining the support of a drugmaker for his cause and cited work by a Connecticut resident, Melissa Thompson, as having made a critical difference. Thompson, a former Goldman Sachs analyst who has an MBA from Columbia University, presented clear arguments about the economic aspects of the bill, Lesser said. She also reached out to every member of the state Senate, Lesser said. Lesser stressed the need for this kind of dedication to pass laws mandating coverage of health procedures, especially in his state.

"Connecticut as you know has a reputation for being the insurance capital of the world," Lesser said. "Our friends in the industry have a fair amount of political clout."

The June 27 event was sponsored by Boehringer Ingelheim Pharmaceuticals, Inc, and Dendreon Pharmaceuticals LLC. The following companies provided support: AbbVie, Adaptive Biotechnologies, AmerisourceBergen, Apobiologix, Astellas, AstraZeneca (through its NCCN corporate council membership), Celgene, Eisai Inc, EMD Serono, Ferring Pharmaceuticals, Foundation Medicine, Inc, Halozyme, HELSINN, Heron, Incyte Corp, Janssen Oncology/Johnson & Johnson, Gilead, Merck & Co, Regeneron Pharmaceuticals Inc, Tesaro, and Verastem Oncology.

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