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ASCO in Action Podcast

Sep 18, 2018

Welcome to this "ASCO in Action" podcast. This is ASCO's monthly podcast series where we explore policy and practice issues that can impact oncologists, the entire cancer care delivery team, and most importantly, of course, the patients we care for, people who have cancer. My name is Clifford Hudis, and I'm the CEO of ASCO as well as the host of this "ASCO in Action" podcast series. And for today's podcast, I am really delighted to have with me Dr. Manali Patel, chair elect of ASCO's health equity committee. Dr. Patel is here as our guest today to talk about some interesting issues for that committee and for all of us in ASCO.

Our conversation today is going to focus on ASCO's recent position statement on Medicaid waivers. For those of you who aren't following this or have been tuned out for a little while, there are several states that have recently submitted waivers to the Centers for Medicare and Medicaid Services-- what we generally call 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 re-determinations, 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.

So 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. And 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.

So to dig deeply into this, Dr. Patel has joined us. And I welcome you, Dr. Patel. And thank you for coming on this discussion today.

Well, it's an honor and a privilege to be here today. Thank you.

So I want to start with a little more background on the type of waivers that we're talking about here. And there's always a nomenclature that's confusing to the outside world. These are called 1115, 1-1-1-5 waivers. What is their intended purpose in the Medicaid program?

Section 1115 of the Social Security Act gives the secretary of health and human services essentially 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 what the federal program rules currently are. These 1115 waivers are subject to public comment. They must be budget neutral for the federal government. And 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.

And just out of curiosity, who submits the terms or the concepts that are being considered in these waivers? Do they bubble up from the state? They come down from the federal government? Do they come from some other source?

What's interesting about these waivers is that they do come from the states themselves. However, there is great encouragement by the administration in terms of what waivers they would encourage states to apply for and which waivers they would approve. The secretary of the health and human services is the one that makes the authority for approving the waivers themselves. But the states themselves are the ones that submit the waiver provisions in hopes that it will align with what the administration's goals and encouragements are.

And just, again, for background, historically, before we get to the present, 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?

Historically, most waivers have been very small in scope until the 1990s. There are still a wide range and great diversity in how states have used these waivers over time. But there's been homogeneity in terms of the wide range of purposes for which they've been used. Most of these are to expand eligibility and to help to simplify Medicaid enrollment processes, all with the goal to help improve the Medicaid program.

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. And 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. Most recently, in 2017, the Centers for Medicaid and Medicare Services encouraged new approval processes, including the potential for many states to obtain a 10-year extension. Previously these were five-year extensions.

In January of 2018, states were encouraged by the administration to apply for waivers to make employment, volunteer work, or the performance of some other service a requirement for Medicaid eligibility, as you discussed earlier in the podcast, and to impose premiums and increases in cost sharing. Now, 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. And also, that includes drug screening and testing, eligibility time limits for patients, and lock-out periods if beneficiaries cannot pay for their premiums or cost sharing.

So there are a couple of concepts that your introduction raises. And I think it may even come as a surprise, at least to some of our listeners, that Medicaid beneficiaries have any premiums. And I want to make sure we're all clear. Are we talking about dollars coming out of the pocket directly of Medicaid recipients in the form of premiums?

We are. And we're also talking about cost sharing in terms of patients being now required to provide cost sharing for services that they are receiving through Medicaid.

And can you expand on each of those areas about what we mean? What kind of dollars would a Medicaid recipient be paying in premiums? And what kind of cost sharing dollars might they be at risk for in a typical program?

The concern now is that Medicaid is state by state. So in any individual state, these premiums and cost sharing can vary greatly. In some cases, it's 50% of cost sharing of the services provided. In other cases, it's less than that. In other states, there are waivers for the premiums or cost sharing and have never been imposed.

So to answer your question, it varies widely. And it can be as great as the premiums and cost sharing that we're seeing in Medicare and patient populations that are enrolled in Medicare. But it can also be as great as the premiums and cost sharing that we see in private health plans.

It will be surprising, I think, to many people to hear this, because I think for most people there's at least a perception that Medicaid represents insurance and access of nearly last resort and is not for people of means. So the idea that there's a cash flow out of the beneficiaries into this program or into their care in this program, I suspect is not something that's widely known.

Right. I would agree. It's not widely known. And it comes as a shock that we would expect patients that would be eligible for Medicaid, given the provisions of what Medicaid has been there to serve and was enacted to serve, that we're seeing patients experience the financial toxicity perhaps even more so than patients that may be in public health plans.

Yeah, that's interesting. And it relates at least tangentially, I'm sure, to some of the recent data that's come out of ASCO addressing the rate of financial toxicity in the form of choices around spending and choices, unfortunately, to go into debt that we've heard from the general population. It's got to be presumably even tighter in this population, right?

Right. And with costs rising at an unsustainable rate for cancer care delivery services, what I think is also a shock to the public is understanding that all of those costs eventually are coming back to the patients themselves to bear the burden of the cost that we're seeing. Every year, my own health care premiums and health insurance premiums are rising. Benefits are being cut in these private health plans. And we're seeing the same occurring for the limited services that are available in Medicaid programs.

And because states have the authority to make these programs reflect what its state's priorities are, there's wide variation in the same way that there is wide variation between each individual public and private health plan outside of these states. Within the states, there's a significant degree of diversity in terms of what services states are providing through Medicaid.

And I guess one last question before we move on is-- it sounds like you've answered this already, but I want to be clear-- the program really is taking shape right now, right? This is not the way it's been historically. Is that a fair roll-up of what you've said?


That is extremely fair. I think prior, as early as the 1990s, these waivers were really to expand eligibility. And they were meant to improve the program for its objectives to increase access, equitable access, to high-quality medical care. And now what we're seeing are provisions that are directly inhibiting this access.

Yeah. This is amazing. So turning now to the current reality and our response to it, we have concerns, as we've already alluded to, specifically regarding the work requirements, in two directions, I would say. First, of course, we're concerned about the direct impact on patients. But I think in addition to that, we're worried about the impact on the system as a whole. And my question to you is what would you like our listeners to know about how these waivers might have an impact on people with cancer?

Right, so I'm deeply concerned about the waivers failing to promote the intended objectives of the Medicaid program, as I've discussed previously in our conversation today. These waivers directly inhibit access to high-quality cancer care. These new provision 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. And patients that are 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. And 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 patients that are cancer survivors, who face long-term effects and increased health risks related to their cancer. So the imposition, also, of lifetime limits and lock-out periods are detrimental to ensuring that patients have equitable access to cancer care.

And you know, one of the other areas that isn't obvious at first-- I had to look into this as well-- is the downstream impact on the clinicians caring for these patients. Can you explain to our listeners, why would a doctor even become aware of this? How would this take time from the doctor, these kinds of work requirements?

Well, when I think about my own practice and how I spend-- and I think 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 restrictions, in terms of these new restrictions for Medicaid, will increase the requirement for additional paperwork. And 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.

Do you think that the assessment of ability to work would also fall to the oncologist? That's a concern, I think, that it might drive our docs to find themselves in a funny relationship, an uncomfortable one, with their own patients?


Oh, certainly. 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. And it does make it-- it interferes with a therapeutic relationship with our patient population.

And you alluded to this already, 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. So I've heard, at least, the comment that these work requirements technically might not apply very much to cancer patients because of the-- again, the technical work requirements would be waived for patients who are sick. Do we have any sense, in real-world implementation, how this plays out?

It's unclear if states will be able to make those exceptions. And if you have an exception for patients with cancer, I can list several other terminal illnesses as well as curable illnesses that may similarly have exemptions. And it's unclear if these exemptions will be adhered to. One concern, and I think one of our recommendations have been that if there will be requirements for work requirements, that at least they not occur for a minimum of a year after a patient has undergone active treatment and that caregivers of patients should be seen in a similar light.

But to answer your question, 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. And that's certainly why advocating for this and advocating against these work requirements for our patient population is this especially important from all stakeholders.

Well, that's a perfect segue for us to turn to ASCO's recommendations. That is what we're advocating for. And I wonder if we could start, if we think about the recent ASCO position statement on Medicaid waivers, what are the specific recommendations that you want us to know about in terms of what we want policymakers to do? What's our focus?

Our main focus and the underlying mission of ASCO's recommendations are, again, to ensure that all patients have equitable access to high-quality cancer care. And the main focus of these recommendations are that waivers really should not create delays or barriers to receipt of timely and appropriate cancer care. Secondly, states should consider patients that are in active treatment exempt from any work requirements for the reasons that we've discussed and consider the primary caregivers in a similar light.

There should not be lock-out periods or lifetime limits or elimination of retroactive eligibility for at least a year after a patient's last treatment. And additionally, these uncompensated burdens on providers really should not be posed on providers. ASCO also recommends that waiver applications and amendments be open to a full and transparent public comment period.

So that last point, it seems like that's an obvious one for all of us wanting good government, and even in our daily lives. What is it that we're worried about with this transparency? Why is it so important that these 1115 waivers be handled in a transparent way? And I'm almost embarrassed to ask that question, because it's hard to see the argument against transparency. Why do we have to make that argument?

Right. Well, it's key. Transparency is key. We have to make this argument all the time in many other facets of health care as well.


But it's key to ensuring that we all understand what the implications of these waivers have on our patients, on our practices, but also on our personal lives, and that we have a chance to comment publicly on the waiver. I think states may look at each other's waivers and begin to make provisions for their own waivers or apply for waivers based off of what another state has been approved to demonstrate or to test. And so I think it's extremely important that we all have a chance to publicly comment on these waivers and to understand what's in the waivers themselves prior to them being approved.

So I guess in addition to our public statement on the waivers and the position statement and then hopefully having the opportunity to address these in public, are there any other next steps that we need to be taking formally as ASCO? Is there anything else that's on the agenda for us?

ASCO is currently conducting and helping state affiliates develop letters and comments to their own state officials as they design and submit the waivers. I think 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. But beyond analysis and these comment letters, ASCO is also coordinating meetings with state affiliate leadership and with state policymakers to discuss concerns about ongoing and the current Medicaid waivers as well as ones that may come up.

So it's just another plug for our regular listeners for engagement through, for example, our Hill Day and our ACT Network and so forth to keep the pressure on and the awareness up with our legislators, right?

Right. Certainly. This is a topic that will continue to evolve, and 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.

Well, that's great. I don't think there is, but is there anything else that we've left out that listeners should know about the current state of the Medicaid play for us?

Well, I don't think so. I think we covered most. But as we all know, Medicaid is currently evolving. It's always evolving, and currently more so in a direction that I would have never assumed we would be evolving into. The concerns that are always raised are legislative cuts, caps to the program, uncertainty about revenues, federal legislation that may have an effect on state actions on Medicaid. And now there are growing concerns about substance use disorder and opioid epidemic use that may make Medicaid play a larger role in these issues than we had previously considered.

There's a lot to chew on there. I want to thank you, Dr. Patel, for joining me today for this "ASCO in Action" podcast. I hope our listeners find this clear and informative. I think it raises really important issues for all of us.

I want to remind everybody that ASCO's position statement on Medicaid waivers is just one of our many that address policymakers in various ways. Our overall goal is to preserve and enhance access to high-quality care for all Americans. I'll remind you that our 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. And then, 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, the point being, this is a long-term commitment by our leadership and our volunteers. And this is something that clearly is going to remain at the top of our agenda.

If you're interested, and I hope you are, you can read the complete ASCO position statement online. It's available at And this is, again, made available to you on the web. And I hope that this is informative. With that, until next time. I want to thank everybody for listening to this "ASCO in Action" podcast.