Patient, Advocate, and Payer on Value-Based Care for mBC

Kelli Davis, METAvivor patient advocate and co-founder of the Northwest Arkansas Metsquerade, and Steven Peskin, MD, MBA, FACP, executive medical director at Horizon Blue Cross Blue Shield of New Jersey, provide their perspectives as a patient and patient advocate and payer of value-based care.


Bruce Feinberg, DO: Simplistically, it’s often been positioned where the manufacturer takes the noble stance that their value is innovation, and what they’re doing is bringing that innovation to impact favorably the lives of patients. The provider takes the noble position of the caregiver, and they’re responsible for treating those individuals and having to address the balance of efficacy and toxicity to get the best outcomes for their patients. The payer is interesting because they’ve also often been assailed by the other stakeholders, but they take the nobility position that they’re the only adult in the room. They’re stewards of the health care dollar, and somebody has to say no or has to be able to make that cost-effective comparison to say not only do we have this patient, but there are thousands of patients—not just with cancer but with heart disease and diabetes that we have to think about. We have to make these hard decisions, and there has to be an adult in the room. But we don’t often hear from the patient. We hear about whether it’s a cost story and an innovation perspective or a more clinical efficacy and toxicity. What would you say, personally and in the advocate’s role, is the position of the patient when trying to address the value to them?

Kelli Davis: From my perspective, we’re all about length of life for the most part. Especially in a younger metastatic population, we are willing to sacrifice a great deal of toxicity and quality of life to make it a little longer. We put up with a lot of really debilitating adverse effects, and we navigate the financial toxicity aspect of this as well, you know, to be defined. Grant money and pharmaceutical support when it comes to the ability to pay for these CDK4/6 inhibitors, which are incredibly expensive. On average, my drugs cost around $12,000 a month, and Medicare doesn’t cover all of it obviously. The value is really based on our ability to live longer and hopefully until that next medicine comes out, so we can actually continue to see our children grow up and continue to do this advocacy work that we’re so passionate about. If I’m being honest, CDK4/6 inhibitors have saved my life. I am on my first-line treatment, Faslodex and Ibrance, and I have been without evidence of disease for the entire time. There’s no question that I wouldn’t be doing what I’m doing if it wasn’t for that drug combination. I’m very grateful.

Bruce Feinberg, DO: When you talk about the advocacy, it’s very personalized, which is often a problem for medicine because that would be considered anecdote. We can’t look at the individual; we have to look at the large population. But as an advocate, you have to look at a large population. You have your young patients, but you also have your older patients in their 70s and 80s with breast cancer. From an advocacy role, is the advocacy fairly specific and straightforward and strictly about length of life? There are different needs for different people, and as an advocate we’re trying to express all of those.

Kelli Davis: I personally support around 6000 metastatic breast cancer patients, from 18-year-olds to 93-year-olds, who are living with the disease. The needs are very different across that span, and based not just on age, but age is a really big divider when it comes to how people see the world, as far as what things they value in their treatment process. As you get up the chain a little, it tends to be more about quality of life and managing things like the neutropenia; the peripheral neuropathy, which is not something you hear a lot about but is something that does happen; and really being less tolerant of the toxicities that come around with these sort of drug classes. They also tend to be a little more heavily pretreated as well. When I poll my friends or my supporters, I try to really gather everything that they want to be represented when I’m talking to researchers or to oncologists or to people I encounter at these various conferences around the country. The value definitely shifts more toward quality of life as you get up the ladder in age.

Bruce Feinberg, DO: I’ve participated in cancer decision-making for payers. I’ve been involved on 2 different national payer panels. It’s interesting because as a provider, there has to be some animosity toward payers. You think the decision-making isn’t sound but understanding how payers address what is medically necessary and not experimental is critical. In both panels I was on, although we had a lot of physicians broadly representative of the network of providers, we didn’t often have patient advocates. I’m curious, how do payers address that? Is it difficult? Kelli, to be frank and honest, it’s often very hard to have some of the hard clinical conversations when there’s a patient advocate at the table. People lose their candor, and it’s difficult in front of someone who is struggling with the disease to be frank about there being only so many dollars. I appreciate your perspective, but the clinical trials—even though that drug is working for you—weren’t impressive in terms of what it offered given its cost and other factors. Steve, are payers trying to incorporate the patient perspective more? How do they do that?

Steven Peskin, MD, MBA, FACP: Yes. We work with Susan G. Komen, in terms of financial support and ongoing dialogue through our plan and our foundation; and cancer support communities, which are around survivorship and nutrition and psychosocial support of individuals on her or his cancer journey. Certainly, it’s a voice that is important. Our plan sponsors—of course, Bruce, you’re very familiar with that notion it would be an employer group. They have a perspective on the person: the human being, the employee, his or her dependents. That’s another part of the voice of the patient. Certainly, how the advocacy groups interact with the major professional organizations—ASCO, NCCN [National Comprehensive Cancer Network], San Antonio—comes into the fore as well. There’s a lot of different places where the voice of the patient is heard. You referenced certainly the way we would approach looking at evidence. That said, oftentimes the general number for all FDA-approved drugs is that about 30% are used out of label or off-label, which is perfectly legal for physicians in the United States. Cancer [drugs] probably approaches 50%. Again, I defer to the clinicians. That’s something we’re well aware of. There are prior authorization for expensive therapies, and they tend to be associated with the FDA label but also major authoritative organizations—like NCCN, ASCO, and others—and NCI [the National Cancer Institute].

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