Editor’s note: Dr. Hudis hosts the ASCO in Action Podcast, which focuses on policy and practice issues affecting providers and patients. An excerpt of a recent episode is shared below; it has been edited for length and clarity. Listen to the full podcast online or through iTunes or Google Play.
I am really delighted to have with me Manali Patel, MD, MPH, chair-elect of the ASCO Health Equity Committee. Our conversation focuses on ASCO's recent position statement on Medicaid waivers. Several states recently submitted waivers to the Centers for Medicare and Medicaid Services (CMS) asking for the agency to approve changes to the Medicaid program in their state individually that would make eligibility, continued coverage for care, cost sharing, and other program benefits dependent on the beneficiary's work status. Some state waivers have also requested the authority to cut coverage for beneficiaries based on them not paying premiums, on eligibility redeterminations, and on other work requirements. Simply put, these are challenges because they could restrict some access to care, and they put ability to work into the mix for oncologists to consider.
Here at ASCO, we're concerned. We're concerned especially that Medicaid work requirements may hinder patient access to essential cancer care services. They may reduce the already limited time that physicians have available to spend with their patients, because they will require, in some cases, doctors to do work related to assessing employability. Our position statement, therefore, recommends that federal and state policymakers take very specific steps to ensure that new Medicaid requirements do not harm patients with cancer.
CH: I want to start with a little more background on the type of waivers that we're talking about here. These are called 1115 waivers. What is their intended purpose in the Medicaid program?
MP: Section 1115 of the Social Security Act gives the Secretary of Health and Human Services the authority to waive particular provisions of the Medicaid program in hopes to further the Medicaid program's objective. 1115 waivers provide states an avenue to test new approaches in Medicaid that can potentially improve their programs but that may differ from current federal program rules. These 1115 waivers are subject to public comment. They must be budget-neutral for the federal government. While there is great diversity in how states have used these waivers over time, generally these waivers reflect the priorities that are identified by the states and the current administration.
CH: Historically, has it typically been the case that there's heterogeneity in these programs around the country? Or is this something new in terms of these waivers encouraging local experimentation and variation?
MP: Historically, many states have applied for waivers to reform care delivery and present an opportunity for states to institute reforms that go beyond just routine medical care, but that focus on providing evidence-based interventions that have an opportunity to improve health outcomes for this particularly disparate patient population. For example, Oregon used its waiver to establish a partnership between managed care plans and community providers to provide behavioral health and oral health services for its Medicaid beneficiaries.
In 2012, the enactment of the Affordable Care Act allowed a new category of low-income adults to become eligible for Medicaid. Therefore, several states in 2012 applied for demonstration waivers from the Obama administration to test different approaches to expand eligibility and recently included the introduction of premiums and co-payments. In 2017, CMS encouraged new approval processes, including the potential for many states to obtain a 10-year extension. Previously these were 5-year extensions.
In January 2018, states were encouraged by the current administration to apply for waivers to make employment, volunteer work, or the performance of some other service a requirement for Medicaid eligibility, and to impose premiums and increases in cost sharing. This is different. A number of states now have waivers that have been approved, as well as ones that have been pending, that include these provisions that have not previously been approved in the past. That also includes drug screening and testing, eligibility time limits for patients, and lockout periods if beneficiaries cannot pay for their premiums or cost sharing.
As early as the 1990s, these waivers were really to expand eligibility. They were meant to improve the program for its objectives to increase equitable access to high-quality medical care. Now what we're seeing are provisions that are directly inhibiting this access.
CH: Turning to the current reality and our response to it, we have concerns specifically regarding the work requirements in two directions. First, of course, we're concerned about the direct impact on patients; in addition, we're worried about the impact on the system as a whole. What would you like ASCO members to know about how these waivers might have an impact on people with cancer?
MP: I'm deeply concerned about the waivers failing to promote the intended objectives of the Medicaid program. These waivers directly inhibit access to high-quality cancer care. These new provisions to waivers can be extremely detrimental by restricting access to coverage for those not only with an ongoing cancer diagnosis, but restricting access to services that can help to prevent cancer. Patients enrolled in Medicaid are those patients that may be at highest risk for developing cancer.
Disruptions in care, delays in treatment, dis-enrollment in coverage—all of these gaps in care delivery have been shown to directly adversely impact cancer care outcomes. To think that these disruptions are now being imparted and imposed into Medicaid eligibility requirements is quite concerning. Many patients have to stop working entirely. Many are dramatically reducing their work hours to comply with evidence-based treatments. Many have debilitating side effects that prevent them from working and are at risk for life-threatening infections and illnesses when their blood counts may be low.
These worse outcomes also affect cancer survivors, who face long-term effects and increased health risks related to their cancer. So the imposition, also, of lifetime limits and lockout periods are detrimental to ensuring that patients have equitable access to cancer care.
CH: One area that isn't obvious at first is the downstream impact on the clinicians caring for these patients. How would these kinds of work requirements take time from the doctor?
MP: I think about my own practice and how I spend my time—and studies have also validated that we spend over 50%, or up to 50%, of our time in front of the computer with administrative paperwork burden. These new restrictions for Medicaid will increase the requirement for additional paperwork. That paperwork is going to have to directly come from the oncology practices and the providers that are seeing these patients. These restrictions and requirements that will be imposed on us are going to exacerbate our already limited time.
CH: Do you think that the assessment of ability to work would also fall to the oncologist? Our doctors might find themselves in an uncomfortable relationship with their own patients.
MP: I do believe firmly that it will come to the providers providing care for these patient populations. We are already required to provide disability placards and make that assessment in our clinics. It interferes with a therapeutic relationship with our patient population.
CH: You alluded to the fact that many patients diagnosed with cancer ironically have to stop working, both because of the time and effort it takes to get treated, but also because they're just not well. I've heard, at least, that these technical work requirements might not apply to patients with cancer, that they would be waived for patients who are sick. Do we have any sense, in real-world implementation, how this plays out?
MP: It's really unclear if there will be provisions made and exemptions made for patients with cancer. I do certainly hope that to be the case. That's why advocating against these work requirements for our patient population is especially important from all stakeholders.
CH: That's a perfect segue for us to turn to ASCO's recommendations. That is what we're advocating for. What's our focus?
MP: The underlying mission of ASCO's recommendations is to ensure that all patients have equitable access to high-quality cancer care. The main focus of these recommendations is that waivers should not create delays or barriers to receipt of timely and appropriate cancer care. Second, states should consider patients that are in active treatment exempt from any work requirements, for the reasons that we've discussed, and consider their primary caregivers in a similar light.
There should not be lockout periods or lifetime limits or elimination of retroactive eligibility for at least a year after a patient's last treatment. Additionally, these uncompensated burdens should not be imposed on providers. ASCO also recommends that waiver applications and amendments be open to a full and transparent public comment period.
CH: Are there any other steps that we need to be taking formally as ASCO? What else is on the agenda for us?
MP: It's extremely important that we continue to advocate. ASCO's advocacy team from the state level is keeping an eye on waivers and opportunities to partner with State Affiliates on problematic waivers that may be coming from their own states. ASCO is currently conducting analysis and helping State Affiliates develop letters and comments to their own state officials as they design and submit the waivers. Beyond analysis and these comment letters, ASCO is coordinating meetings with State Affiliate leadership and with state policymakers to discuss concerns about ongoing and current Medicaid waivers as well as ones that may come up.
CH: This is a plug for our members for engagement through our ACT Network to keep the pressure on and the awareness up with our legislators, right?
MP: Right. This is a topic that will continue to evolve, so it's extremely important that we're keeping ourselves up to date and that ASCO is helping us to keep abreast of what new developments may be occurring on these waivers on a state-based level.
CH: ASCO’s 2014 policy statement on Medicaid reform called for major changes to the Medicaid program to ensure access to high-quality cancer care for all low-income individuals. Our 2017 principles for patient-centered health care reform called for access to affordable and sufficient health care coverage regardless of income or health status. This is a long-term commitment by our leadership and our volunteers, and clearly is going to remain at the top of our agenda.