Red Tape: Real Consequences for Patients with Cancer

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Welcome to Value-Based Voices, a podcast from the Association for Value-Based Cancer Care.
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Each episode dives into the shifting terrain of cancer care in the United States, exploring what value means in today's clinical, policy, and patient-centered environments.
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Our mission is to spark informed dialogue, promote transparency, and equip every stakeholder from providers to payers to patients with the insight they need to navigate cancer care with clarity, confidence, and purpose.
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Thank you everybody for joining us.
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My name is Jason Slanik.
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I'm one of the co-hosts here for Value-Based Voices.
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It is an honor to be joined again by my co-host, Brian Reid, who's going to uh take this time to introduce our guests.
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And Brian, take it away.
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Thanks a lot, Jason.
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Look, I'm really excited to be here because about a year ago, uh, the organization Cancer Care put out a really interesting report that quantified, I think, for the first time with great depth, what exactly prior offs utilization management, the kind of sand in the gears of care look like for cancer patients.
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And I've really wanted to get some of the cancer care folks on.
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So we're really fortunate today to have the folks behind the what we're calling the red tape report.
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It has a much longer name, but uh that quantifies this problem.
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So we're here with Alexandra Zaleta.
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She's the lead author and the VP for Research and Insights at Cancer Care, along with Kim Zubarak, who's the VP for policy.
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And they've really put together, I think, an extraordinary um you know piece of work.
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And before we get into the actual bits, I want to make sure that Alexandra and Kim have a chance to describe both what Cancer Care does as well as the genesis for this particular uh work.
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So why don't we start, uh Alexandra, with you?
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Thanks, Brian, so much for having us here.
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We're really grateful for the opportunity to share about this work and about what we do at Cancer Care.
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We're a national nonprofit advocacy and support organization.
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First and foremost, we're providing direct free support services to people living with and affected by cancer, including things like resource navigation, direct financial assistance, individual counseling, education, uh, you name it.
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And alongside of that, we engage in research and advocacy because we're trying to create systems change and also do a better job at supporting people day to day as they try to live with cancer and navigate the realities of this disease.
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I'll just add uh, you know, to that introduction is it's a large umbrella, but I'd say access really is at the forefront of all that cancer care does for our clients uh to make sure that everybody has access to the most appropriate and innovative care that's available to treat their cancer.
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You know, I often tell people that coverage is not access, and prior off is the prime example of that statement.
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You know, they launch a drug and they think they're gonna have great access uh just because they're covered, and that is clearly not the case.
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So this is based on a survey of over 1,200 people with cancer and their experiences with their care journey.
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What's the top line?
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The top line, Brian, is that utilization management is widespread, and unfortunately, it's creating real harms to patients and their families.
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That's really the crux of it.
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You know, prior authorization and other cost control strategies are affecting the vast majority of people living with cancer.
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We had 85% of people have to face prior off to access their cancer treatments.
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Three-quarters of that happened to them in the last year alone.
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Uh, and so the numbers are big, but again, it's not just the issue that it's widespread, is that it's creating care delays, diagnosis delays, treatment delays.
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Patients and families themselves are having to roll up sleeves, get involved in this process in order to access their doctor prescribed care.
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And as a result, they're stressed.
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This is costing them money, it's affecting their trust in the healthcare system.
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So, really big picture.
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Um, we're dealing with a really difficult situation here, especially because most of these folks actually get their care approved in the end.
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It's only after they jump through all these hurdles uh and fight the fight uh in order for them to be able to access this treatment.
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So a lot of uh theater here around proper utilization that in the end does nothing but add cost and burden to the system.
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Yeah, I mean, I think that's the challenge.
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You know, we have a lot of um, there's been a lot of conversation about efficiency uh and systems waste.
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And I think we really struggle with a system that as implemented, um, you know, it's hard to make sense of it if you're putting the vast majority of folks through this process, but then you're also approving the vast majority of their care, but only after they're experiencing these personal harms.
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Um, that's that's sort of a tough pell to swallow.
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So can can we go through the harms here?
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Because you rattled off a half a dozen.
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Uh and I think it's but I think it's worth really digging into the heart of the report, which is what are these harms and what is the degree to which it's impacting this population?
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So again, 85% of folks are experiencing some of this, if not all of this.
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Uh, but let's start with uh I think the ones that that that you know really uh you know really cause me the most pause, the clinical impact.
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What happens to coverage and what happens to to your clinical care when you run into some of these barriers?
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Yeah.
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I mean, I think the you know, just out the gate, the biggest challenge is that people are facing diagnostic delays and they're facing treatment access delays.
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That's the reality.
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Just when we ask about their most recent prior authorization, almost a third of folks saying that that impacted the timeliness of their diagnosis.
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And 40% of folks saying that that impacted the timeliness of their treatment.
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Um, you know, for some people, that time delay could be a few days or a week, but for about one in five folks, it was three to four weeks or even more than a month.
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Uh, and I think the pain point is people are going through this multiple times a year across every point in the care continuum.
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It's happening early on in diagnostic imaging, it's happening at the biomarker testing, it's happening before they can access the chemo or the radiation or the immunotherapy.
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Uh, it's happening before they can access the supportive treatments to help them stay on their treatment, the pain medicine, the nausea medicine.
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So there's a real cumulative burden that I think is happening for people because this is happening again across all these different touch points.
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And so each time it's happening, they're put in this position of delay and access.
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And it's not like once you get yourself set up, you're free and clear either.
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You documented some coverage stoppages of patients who were on therapy, and then all of a sudden, what happened?
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Yeah.
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I mean, I think that's the other half of the coin here is that many people go through prior authorization.
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Some of them are prime, they've been through it before, or they may have been told about it, you know, by their healthcare team.
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But what a number of people are also finding is that once they get access to that treatment and they're on that treatment, they're finding that their insurance is no longer covering the treatment.
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Not because they switched plans, not because they changed employers, but their existing coverage is saying we're no longer going to provide coverage for the treatment that you're receiving.
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Uh, and so that translated to coverage stoppages and delays and access for many folks.
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Uh, many of them had to change therapies.
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And we asked them, well, what happened when you switched to that other therapy?
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Uh, a number of them said I actually had worse side effects or symptoms on the new therapy.
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And many of them said they actually had to pay more money once that shift was made.
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So, you know, somebody may be saving the costs in this process, but many times it's it's not people with cancer in their families.
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Alexandra, are you able to expand upon the payer mix of some of those numbers?
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Did it differentiate between commercial payers and Medicare payers?
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It's a great break it down.
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Yeah, it's a great question, Jason.
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So we focus this work specifically on folks with employer health plans, folks with Medicare Advantage, and folks with traditional Medicare.
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What I want to say out the gate is that no one is untouched by this process, but we saw the greatest impacts for folks on employer health plans.
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So people that are either working or they're on a plan for their loved one most often were the ones reporting the most uh red tape that they had to navigate and also reporting the most harms as a result of that.
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So greater stress, um, potentially more cost to them, uh, again, loss of trust, all these other, you know, real pain points.
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And again, um, it was true across these different plans, but unfortunately, folks with these employer plans most often reporting it.
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And what I'd mention is that in our study, the people on employer health plans were younger, but they also were sicker.
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These are more often folks with metastatic disease.
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So these people are living with advanced cancers.
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They're potentially the ones dealing with real health vulnerabilities, and now they have to uh tackle all of the stress of navigating uh, you know, administrative barriers just to access the doctor-prescribed care.
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So speaking of doctor-prescribed care, uh was there a difference in delay times between pharmacy benefit and medical benefit?
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Because to some extent, that speaks to which part of the healthcare ecosystem is then advocating on behalf of the patient for access, whether it's the pharmacy or the physician.
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Did you look at it?
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Does the data get that granular related to benefit design?
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You know, Jason, I always love these conversations because you give me new ideas for how to segment the data.
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So I have some ideas for uh what we can do with our next level analysis.
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We haven't diced it out exactly that way today.
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And some of the questions we want to ask in the follow-up work, we're planning actually a next generation study on this.
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So I don't have a direct answer for you today.
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What I can say is that that involvement differed for folks on Medicare and folks on employer plans.
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About a third of folks on Medicare having to get directly involved versus saying their doctor took care of everything for them, versus about two-thirds of folks on employer plans who had to get involved having to navigate this process.
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So more people on employer health plans having to directly roll up their sleeves rather than having the doctor um take care of the process for them.
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So where Brian and I's minds are going is into that whole morose of PBM and accumulator and maximizer programs and how different those are, as you know, on the pharmacy side, and those are evolving into the medical side.
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Yeah.
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And that would be some really interesting information for our audience.
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Um, this all this does is guarantee your next invitation, Alexander.
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Thank you, Jason.
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Well, what I can tell you, and I know Kim will have some context, is that most people don't know what a PBM is.
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Most people do not know what a copay accumulator and maximizer.
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We ask them.
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Three-quarters of folks either um never heard of it or they heard of it, but they didn't, they have no idea how these things work.
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So, from a just a uh being able to be a self-advocate, you know, I hate to put this on the shoulders of people with cancer, but the reality is you have to know how a system works in order to navigate a system.
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And that's one of the things that we take on here at Cancer Care is trying to increase awareness and understanding of what these programs are, what PBMs are, how they work, so that um patients and families are empowered to ask the right questions, to understand what their rights and what their options are, because most people just it's not on their radar, you know, they they just are not digesting it or haven't heard of it in the ways that we in the field, you know, have an awareness of.
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Yeah, let's pull on those two strings, both the fact that this seems to be worse in employer uh coverage, and the fact that there, you know, that there's a real policy pull-through here uh with things like alternate funding um accumulators.
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Kim, take us through kind of what uh specifically to the employer side, what are some of the policy solutions as you're building coalitions?
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Who are you looking to partner with here?
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Sure.
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Let me just add prior to getting to that front, that I think it was a surprise to many people that the employer coverage was the most challenging.
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It kind of goes against the dynamic in the past where for the most part employer coverage was considered a gold standard, uh, the best coverage, the most robust plan that people had.
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And we see that changing.
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That dynamic has has been changing for a while.
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Uh, I'll say that Cancer Care leads a task force on alternative funding programs.
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So I was not surprised many were, but because of my work on AFPs and the challenges uh with employers trying to cut the cost of care for their employees, I wasn't surprised that the employer-based care indeed presented the most challenges.
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Uh, also, the copay accumulators and maximizers are something that cancer care has been working on in our policy angle to educate patients, also bringing in, though, educating employers as well as healthcare providers.
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Uh, all of those stakeholders are very important.
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Uh, and then, of course, getting to policymakers.
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So, as far as policy solutions or ideas for us to correct this, is that you know, cancer does present an immediacy uh with the condition itself.
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Uh, it brings in a little bit of the six protected classes and why that is such an important policy to make sure that all or substantially all medications are available to those on Medicare.
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Cancer, somebody could have the exact same cancer diagnosis, but because of biology, staging, other factors, different treatments may or may not work even with the same diagnosis.
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So it's very important that we make sure that all are substantially all much broader than the six protected classes for all cancer patients, whether they have employer insurance, uh Medicare, uh, whether that be Medicare Advantage or Traditional, and I'll bring in the Medicaid patients as well.
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Cancer is unique in that, and we the research and innovation's been tremendous, but if it's not available in a timely appropriate manner to people, then all that research and that knowledge really has been for naught.
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So, but Kim, you mentioned the educational efforts that you guys undertook as it relates to this report.
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How was it received by the various uh listeners, right?
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The employer groups, the patient groups, the provider groups.
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And part two of that question is you talk about surprises.
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What surprised you the most on some of those reactions?
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So the reactions I think people appreciated the report.
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The statistics, the numbers that come out of it are very important.
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But our role as in cancer care and as advocates for these patients is to go beyond just the numbers and the stats.
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Uh, we always, uh Alexander, myself, and others at Cancer Care, we always have to remind people, right?
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We're talking about whether it be prior auth or step therapy, and talking the mechanics of it, that it does not become a robotic mechanical process.
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These are real people.
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They're not well, they're not feeling well, they have a significant, serious disease that they're trying to combat, and yet these challenges and barriers are put in front of them.
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And I think when we we get to stats or numbers and surveys, sometimes, uh overall as a system, uh it's it's easy to kind of just talk about those things and lose that very important connection that these are real people.
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So I think my second part of your question, what was most surprising in the reaction is people recognized it, but they uh didn't seem uh to jump on, okay, how can we fix it?
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It was an acknowledgement that it's a problem, but it was almost like pointing somewhere else as to where to fix it, where we really believe it's going to take alignment and and community across stakeholders to really work together.
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We're not going to align on everything.
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We understand that, but we have to, and I believe there are absolutely points of alignment where we can work together that will improve the system.
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And most importantly, when we improve the system, it helps the people.
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So I'll turn it over to Brian.
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I know you have uh you had a follow-up question there.
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Sorry to interrupt.
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No, I think I think this is it's it's interesting, I think, to reflect on on the history of utilization management more broadly.
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There was a time where we assumed that certain classes were kind of beyond these these games.
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That you saw maybe you saw more of it in primary care, where you had a you had different options, and and maybe you had a chance to try a second line or a third-line therapy.
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But oncology was treated different.
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Orphan diseases for a long time were treated different.
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And what strikes me, and I'd love input from Alexandra or Kim, that we're now seeing uh these techniques used in rare cancers that we wouldn't have seen before.
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We're seeing step therapy, which is an entirely novel concept in in some ways in oncology, that not only are we working to fix things, but we're also seeing something broken that wasn't necessarily broken.
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Uh there's a little uh I'm off my soapbox now, but I'm kind of curious about the evolution of step therapy, which I know is a is a small portion of what you documented, but where are we with with step therapy and how do we begin walking that back to uh to a place that's going to be more patient-friendly?
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With STEP, it like you're saying, it wasn't really applicable, it wasn't applied to the oncology space previously.
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And I believe one reason is uh clinicians and oncologists were given, rightfully so, we would argue, great deference in the treatment of their patients.
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And over time, unfortunately, that deference I think has been imposed upon.
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And now clinicians are having to confront more UM from their end, administratively a burden for them.
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It's also, you know, they may, they may want to have a certain drug for their patient.
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And indeed, we found in a recent initiative that we did uh micro insights, macro impact.
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We interviewed a number of patients with different types of insurance.
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They shared their stories.
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We had focus groups, uh, a couple of videos, which I encourage people to go on the cancer care website and review those videos.
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It makes it very personal as cancer is.
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Cancer is very personal.
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But most often you hear a lot of the patients say, My doctor prescribed me medicate medication, and yet somebody else outside said, No, no, sorry, you can't get that one until you use something else.
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And they were dumbfounded on how the expertise of their clinician uh was, you know, overridden by somebody who is not an expert in that field.
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So, you know, we really need to promote uh guidelines, NCCN guidelines, uh research for off-label use.
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Again, it's critical, critical with cancer, even um, you know, accelerated uh approvals, all those things in cancer have made the difference of life and death where where terminal conditions for many people are now chronic conditions and they live a full and complete life.
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So we want to make sure that people have access to that.
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And with STEP, in addition, there's maneuverings there with with within plans that now STEP is also being incorporated within prior authorization.
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So patients aren't sure, are they subject to STEP?
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Uh is it prior authorization?
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What's actually going on there?
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And of course, it's more challenging than for somebody to appeal or ask questions or or try to work with their clinician to get the right medication if they're not even sure what's going on.
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So, Alexandra, how do we move beyond this, right?
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We've done a great job the last couple of minutes describing uh the devolving access uh for patients.
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How do we reverse this tide?
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What should we be doing?
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Give us some advice to the community who's listening to us.
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What two, three things should we be focused on as a result of the information you guys have on how we go back to where coverage really is access?
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Yeah.
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I mean, I think there's a few opportunities, Jason, first and to come back to you, the kind of the question earlier about the provider reaction.
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This resonates with the provider's experience.
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And so I think it's incumbent on advocacy and the provider organizations.
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We work with ASCO and others because they're doing this work from the provider perspective.
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Our story tells a very consistent story, but from the patient perspective.
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And so I think it's really important for the different organizations that are involved that are collecting these insights and telling these stories.
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We need to continue to find ways to work together systematically because this is not just a special interest problem for providers, right?
00:21:48.240 --> 00:21:51.039
This directly impacts patients and their families as well.
00:21:51.119 --> 00:21:53.519
And I think our perspectives are stronger together.
00:21:53.680 --> 00:21:58.720
We've been really fortunate to have great relationships with many of these organizations.
00:21:58.799 --> 00:21:59.759
And I think we can do more.
00:22:00.240 --> 00:22:07.119
is we continue to work together and build a coherent story that explains why the system can't stand the way it is.
00:22:07.279 --> 00:22:16.319
And then I think the other part is, you know, we're we continue to try to draw attention to this because what I would say for many folks, especially on the employer side, is disbelief.
00:22:16.480 --> 00:22:22.000
I genuinely think there are many employers, folks working on that side, that are working very hard.
00:22:22.160 --> 00:22:24.319
You know, this is a huge spend for employers.
00:22:24.400 --> 00:22:26.240
It's often the second biggest spend, right?
00:22:26.400 --> 00:22:27.519
Health benefits.
00:22:27.759 --> 00:22:46.079
I'd want to know if I was spending all of this money as an employer and my to give my employees fair benefits, you know, and give them the coverage they deserve, to then find out that after spending all of that, that they're still facing these harms, that it's time away for them navigating these stressors.
00:22:46.160 --> 00:22:50.240
And so, you know, I really believe we have an opportunity to come together.
00:22:50.400 --> 00:23:02.559
I do think there are a number of employers out there that are trying to do the right thing and may not fully understand these systems as implemented because the claims data can't show some of these patient harms, right?
00:23:02.640 --> 00:23:12.000
That's why we do this work and collect patient stories to help people understand what some of these hidden costs and hidden harms are of these systems as implemented.
00:23:12.160 --> 00:23:15.440
So I still think there's a tremendous opportunity in that space.
00:23:15.519 --> 00:23:26.880
I do think there are many organizations that are trying to do the right thing, but have continued opportunity to understand more again about how these programs work and what that really means for their workforce.
00:23:26.960 --> 00:23:28.880
And so we that door is open.
00:23:29.039 --> 00:23:40.880
We would love to have those conversations we continue to try to meet with folks in that space because I think we can create chains today if people have an understanding of what this means for for their organization.
00:23:41.599 --> 00:23:50.000
Well Brian looks like we have our next podcast why we got to get some employees on I'm I fantastic.
00:23:50.079 --> 00:23:52.960
I think we should have Alexandra and Kim hold their feet to the fire too.
00:23:53.119 --> 00:24:09.200
I think that's but the point the point is well taken that there's certain things you can see in claim data and certain things that you can't and if you're an employer I think one of the more fascinating pieces of the report was you quantified this idea of time toxicity.
00:24:09.680 --> 00:24:12.799
Which I assure you does not show up in the claims data.
00:24:13.440 --> 00:24:19.279
But anyone who's been through this anyone whether it's cancer elsewhere in the healthcare system that's a real thing.
00:24:19.440 --> 00:24:23.599
So what's time toxicity and how bad is it?
00:24:24.079 --> 00:24:31.440
Time toxicity is the time that you spend lost for fighting red tape and administrative burden rather than doing literally anything else.
00:24:31.599 --> 00:24:35.279
Number one, focusing on your own care, recovery and treatment.
00:24:35.519 --> 00:24:38.640
Number two, focusing on your family and your loved ones.
00:24:38.799 --> 00:24:47.759
And number three for many of these folks focusing on work um we did ask them directly about the time spent navigating things like prior authorization.
00:24:48.000 --> 00:25:02.000
People are losing days to weeks of their lives if you if you math it out across all the different uh treatments that people go through across a single year people are losing between two to three weeks two to three business weeks of their lives to this process.
00:25:03.200 --> 00:25:04.079
That's a problem.
00:25:04.160 --> 00:25:09.759
It's a problem just for any human to have to spend that much time fighting a system rather than focusing on their own care.
00:25:09.920 --> 00:25:18.079
And as an employer I'd be really deeply concerned to know that my workforce was having to spend all of this time navigating these systems.
00:25:18.240 --> 00:25:23.680
We all know this happens during the business day that's when you have to make the phone call to be able to talk to a human, you know?
00:25:23.759 --> 00:25:32.960
And so the reality is there's a lot of silent time being spent on these processes by folks again rather than any other priority that they have in their lives.
00:25:33.039 --> 00:25:35.279
And that's a problem that's grinding folks down.
00:25:35.680 --> 00:25:38.000
And it also affects the providers is the truth.
00:25:38.079 --> 00:25:40.079
They're my charting their doctors about this.
00:25:40.160 --> 00:25:45.920
They're stressed out and so the doctors and providers the healthcare team also have a time toxicity.
00:25:46.079 --> 00:26:03.680
Our advisors have told us this because now they're not only navigating this process on the insurance side, they have to support pay they're happy to support patients but that's more time now helping to manage that distress for them rather than being able to focus on clinical care, you know, followed by everything else.
00:26:04.000 --> 00:26:33.839
And I feel like it's worth mentioning once again that 95% of these denials are eventually overcome, that all of this cost is occurring and in the end everyone ends up kind of back where they started with which is in some ways great news but in other ways to lose two, three weeks of your life fighting something where the the outcome was should have been known on moment one is agonizing in its own special US way.
00:26:34.400 --> 00:27:28.400
So one of the solutions we heard Kim one of the solutions we heard I think it was from you was uh Alexandra about education right the employees may not even understand the magnitude of the problem CMS a few years ago talked about like a gold carding possi uh gold carding policy so as as we head towards the end here give us some ideas on how we can fix this is is there is it gold carding explain what it is is that what it is the education and combination what else should the should we be pushing for on the employer side right because that's not really a policy solution we can talk a little bit maybe maybe not but that'll take a while what can we be doing tomorrow uh to promote and get better access I on the employer side specifically self-funded plans because about 67% of people who get their coverage from their employer are on a self-funded plan.
00:27:28.640 --> 00:27:39.200
And as many people know that are in this field there's a lot of flexibility that goes with a self-funded plan and and employers actually choose self-funding because they like that flexibility.
00:27:39.519 --> 00:27:59.039
So ideally that flexibility will be used to get treatments most appropriate innovative treatments to patients quicker versus that flexibility where you have a TPA that's implementing as if you were a fully funded plan and implementing all of these delays.
00:27:59.200 --> 00:28:25.200
So I would love to see employers use that flexibility for good, step outside maybe what a TPA recommends and yeah it's time consuming and you know people are in other businesses but there's the opportunity to actually with those flexibilities do the right thing and I truly believe that the when you get that treatment quicker the most appropriate treatment quicker to your employee everybody wins.
00:28:25.359 --> 00:28:31.200
The employer wins the employee wins and there's less wait less waste for the system itself.
00:28:31.440 --> 00:28:43.200
So I would I would like to embolden employers who are in self-funded plans to take that action and and really uh get more involved and don't just accept what another entity tells them to do.
00:28:43.599 --> 00:28:56.000
And Jason Cancer Care developed a toolkit really to support folks on the benefit design side who if they want additional insights and information about how some of the basics of this works that's available to them.
00:28:56.079 --> 00:29:14.880
We try to create a plain language summary we have patient videos and testimonials that actually predates the red tape report because that's you know this has been a consistent and growing problem but we're trying to offer the basics so that folks who want to have that access and can understand these issues so they can take that conversation internally and see where they can move the needle.
00:29:15.039 --> 00:29:19.519
You know we we do want to continue to promote that so folks have the opportunity to have that awareness.
00:29:19.920 --> 00:30:00.480
Sorry just going to add with step therapy too we would love to see and coverage in general once once a patient is on is on a treatment and it is working well to have that change where even if their insurance does change Alexandra spoke about in the report where people didn't change their insurance had the coverage their treatment stopped but even when somebody perhaps you know switch jobs or they're in they they choose a different plan if they are stable and if that if that treatment is working to be able to stay on that treatment that is just you know it it's so common sense it's so important we all talk about you know making sure patients are at the center and everything you know really goes around what's best for patients.
00:30:00.640 --> 00:30:08.559
If we're going to be true to that versus just saying those words that is such a common sense thing that that should be done and implemented.
00:30:09.039 --> 00:32:21.519
So we've kind of touched on uh a number of of policy solutions kind of across the board I want to make sure that there you have an opportunity to kind of pull this together what does this look like you as you again look for partners look for allies look for coalition partners you know what are they what are the four corners of uh a reform regime that would work for employers that would work for uh Medicare patients is there because you had mentioned you know no you know no mid uh treatment changes streamlining what else falls under that uh rubric I would love to see and this speaks to um the employer insurance but currently for employers to implement a medical exception process that their formulary may be such and established and you know they they don't have to self-funded plans don't have to cover any medications at all though you know you want to retain a good workforce that would be very challenging to do that but when but most of course do because they do want uh the quality employees uh you know to serve their their business interest but I would love to see more employers have if a drug is not covered to have a medical exception process some do but self-funded plans the current reading uh regs and everything else is that they're not required to so I think that would go a long way because we have to remember employees are paying really good money for their employer plans and yet if they're not getting access to chemotherapy uh and other you know other cancer treatments uh you know getting prompt diagnosis it's not working and in the end I truly believe this in the end for the employer sponsored care anyway it has to work for both the employer and they are real challenges in cost but it also has to work for the employee it has to work for both and if it doesn't it gets off balance and for those who want to make sure that the employer sponsored coverage may it remains our primary system I think we need to address this we we can't ignore it anymore.
00:32:21.759 --> 00:32:27.759
People have to get coverage for a serious condition and employers have to be able to afford that coverage.
00:32:27.920 --> 00:32:40.319
So aligning with employer groups employers whether they're fully funded or self-funded bringing in all the stakeholders and having honest conversations and identifying areas of alignment and I think there are many.
00:32:40.480 --> 00:32:49.200
We just need to get all the right players and really a large group of players into the same room and let's let's have a really good heartfelt conversation about this.
00:32:49.519 --> 00:33:02.000
So Alexandra gives you the final word here right that was a great segue with Kim right we spent the first part of our conversation talking about how we've gotten out of balance on access right with utilization management tools.
00:33:02.480 --> 00:33:10.319
And so now and Kim is I agree with her right there can't be access to everything on Fed there is an appropriate balance here.
00:33:10.640 --> 00:33:30.079
Give us some specifics if you're running an HR or you're an HR consultant and you're sitting down with GE and they're doing their benefit design what is the perfect balance given your level of expertise here that you would advise for a self-insured employee group and then maybe we see if we could start an education campaign around that.
00:33:30.319 --> 00:33:30.640
Yeah.
00:33:30.960 --> 00:33:50.400
Jason my answer is I don't know that's why we want to work with these folks that's the truth we we genuinely we're not here with the perfect solution but we're here with the opportunity you know I know that there's a lot of um really challenging data here but for me what it does is it creates the opportunity for change.
00:33:50.640 --> 00:33:58.319
We have to take action the system cannot stay the way it is we're ready to sit down and work with folks and have that hard conversation.
00:33:58.480 --> 00:34:06.720
We're looking for the champion who's willing to come to the table right where's that one large employer like those are real lives changed when you get someone on board.
00:34:06.799 --> 00:34:14.239
And we all know it's hard to be the first but once somebody gets on board that opens the door for others to rethink how things are looking.
00:34:14.400 --> 00:34:25.360
So I you know I don't mean to be Pollyanna about this but we're not going to create change unless we can make something that takes in the perspectives of the different sides and we want to have that conversation.
00:34:25.440 --> 00:34:26.800
We're ready to sit down.
00:34:26.960 --> 00:34:39.119
I I'm confident provider groups you know would be open to this conversation it's time to um find somebody that is willing to take that really hard step but say let's uh where can we find the common ground?
00:34:39.199 --> 00:34:40.719
How can we evolve this system?
00:34:41.679 --> 00:35:41.679
So Brian challenge accepted right we've got to go find yeah we've got some hard questions that uh to ask of uh the self-funded employers of America um from a data standpoint uh what's next for the red tape report obviously you've got a trove of information now you can always grab longitudinal data and do it later but what are what are some of the unanswered questions even after you've gone through all this that that we should be trying to answer and I don't want to put this all on you there's a great research community that that I'm hoping is going to pull along as well what should folks what are the questions folks should be asking for us it's really this conversation again about these hidden costs and hidden harms I think this time toxicity piece, what this really means for folks and what they're dealing with and how do we continue to shed light on the challenges of what people especially with employer health plans are facing I hope we'll continue to create more persuasive talking points and understanding in that community.
00:35:41.760 --> 00:35:44.880
You know, as Kim shared this report it was really big.
00:35:44.960 --> 00:35:50.800
We covered a lot of turf I was surprised by the depths and the complexity of what we saw in the employer health space.
00:35:50.960 --> 00:36:01.920
So and we'd love to have those folks come on board and help us create that project and do that work together, you know, but it it really is coming in and understanding what does this mean for folks with their productivity?
00:36:02.079 --> 00:36:04.639
What does this mean for their ability to continue on with their roles?
00:36:04.800 --> 00:36:21.039
Again, you have this big upfront spend many of these programs are promising to save costs somewhere but the concern is we're passing on these hidden costs, these hidden impacts that actually really have tangible impact on employees and therefore indirectly it comes back.
00:36:21.199 --> 00:36:27.360
It does affect the bottom line when people are spending time effort and energy and this can affect things like retention productivity.
00:36:27.599 --> 00:36:31.440
So I think there continues to be an opportunity in this space it is a hot topic.
00:36:31.519 --> 00:36:49.440
I'm seeing folks there's a lot of conversation around administrative burden but I think specifically within that employer health plan space and that's where you know Kim and I are continuing to work together to do that additional work but also to conduct the education at the same time and in parallel because many folks including professionals don't understand the basics.
00:36:49.599 --> 00:36:57.199
They don't know the difference between a self-funded or a fully funded program and what that means for for their rights for their options for benefit design.
00:36:57.360 --> 00:37:02.960
So we continue to to push forward and I think there's a lot of opportunity really within that space.
00:37:03.519 --> 00:37:10.880
Well I think you're do you're doing one other thing well which is there's also the piece of amplifying those patient voices.
00:37:11.519 --> 00:37:30.800
Yes and and Cancer Care has done a good job of showing what this you know what this means for an actual individual patient in a qualitative this is how it impacts my my life POV I just wanted to add one thing and I know we've mentioned it in passing but I want to make sure it doesn't get lost is caregivers.
00:37:31.119 --> 00:37:38.719
Because you might be an employer to a caregiver that person may not be the individual with cancer but their loved one has cancer.
00:37:39.199 --> 00:37:59.599
And the caregivers take on a significant amount of the responsibility working with their loved one so caregivers also have that time toxicity and that lost productivity so it's important for employers both to consider you know the caregiver element as well as if their employee is the patient.
00:37:59.920 --> 00:38:07.599
It's a great call out can we didn't have their voices directly in the red tape report and our goal is to have their voices directly in this next generation work.
00:38:09.599 --> 00:38:43.599
So it sounds like we've learned a lot today right we learned a lot about the problem thank you guys for documenting that in the in your initial report and from there we've learned about uh some more work that needs to be done right by by benefit design whether it's pharmacy or medical benefit um and more about time toxicity and some of the common themes that have been around since uh I've been in this in the healthcare is continuing to educate, uh make people understand and hope they do understand the impacts of the actions that they are taking.
00:38:43.840 --> 00:38:53.360
It sounds like we should be partnering and getting closer to the employer groups and then by extension to some of the policymakers that oversee and regulate those policies.
00:38:53.840 --> 00:39:10.320
Department of labor is in the process of doing that and CMS is so there will be some upcoming opportunities for for greater education and and mass uh you know mass education I guess on that so I really appreciate all the learnings I've gotten today.
00:39:10.400 --> 00:39:38.159
Thank you guys for your time I'm gonna turn over to Brian and then you guys to give um your final comments and what uh what next steps are I've I'm gonna leave this here this was really fantastic conversation I just want to make sure that Kim and Alexandra have an opportunity to tell people where they can find more information and what they what they can get because again uh cancer care has pumped out a tremendous amount of resources and and to the extent to which we can drop some breadcrumbs I think that'd be a great service.
00:39:38.639 --> 00:39:45.519
Well we have a a great website actually just relaunched today we had one and we've made some updates so it's perfect timing.
00:39:45.760 --> 00:40:27.679
Cancercare.org you'll find the full uh red tape report as well as a two-pager uh which captures the highlights we also have a policy and advocacy tab which gets into our work in alternative funding programs uh access uh in general um uh 340B and other all these things though that are very patient focused so we invite you to go to the website there's patient videos again to bring home and always remember that behind these studies and surveys and stats are real people and we really want to make sure that the tremendous innovation is available to people who have cancer.
00:40:28.000 --> 00:40:30.480
And Kim and I are available to meet with folks.
00:40:30.639 --> 00:40:43.119
We are happy to sit down, have a conversation, talk about the learnings if there's you know folks at your organization that want to could benefit from learning about these insights and the work that we're doing we'd love that opportunity.
00:40:44.880 --> 00:40:52.639
Well thank you everybody for your time we really appreciate your insights and we look forward to the future updates of the Red Tape report.
00:40:52.719 --> 00:40:58.480
So thank you all make sure everybody visit the website and have the rest good rest of your day.
00:40:59.360 --> 00:40:59.920
Thank you so much.
00:41:02.079 --> 00:41:08.000
That wraps up this episode of Value Based Voices brought to you by the Association for Value Based Cancer Care.
00:41:08.239 --> 00:41:29.679
Thank you Brian Alexandra and Kim for sharing your insights and to you our listeners for joining the conversation we look forward to the next update of the Cancer Care's red tape report with some more insights and guidance on how we together can collaborate and promote appropriate access to oncology therapies.
00:41:29.840 --> 00:41:36.480
If you found today's discussion thought provoking be sure to subscribe to Value Based Voices wherever you get your podcasts.
00:41:36.639 --> 00:41:41.599
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