Joseph Alvarnas, MD, vice president of government affairs at City of Hope and chief clinical adviser of AccessHope in Duarte, California, spoke March 4 at the closing session of the Association for Community Cancer Centers (ACCC) Annual Meeting & Cancer Business Summit in Washington, DC.
Patients with cancer should have the same access to precision medicine, clinical trials, and comprehensive cancer care no matter what type of insurance they have, and it should be easier for patients and their families to get needed treatments, according to a hematologist/oncologist and policy leader for City of Hope National Medical Center.
Joseph Alvarnas, MD, vice president of government affairs at City of Hope and chief clinical adviser of AccessHope in Duarte, California, called for community oncologists and academic centers to join forces to deliver cancer care and highlight the need for a Bill of Rights for patients with cancer, which would highlight gaps that are fueling health care disparities.
Alvarnas spoke March 4 at the closing session of the Association for Community Cancer Centers (ACCC) Annual Meeting & Cancer Business Summit in Washington, DC. The talk was moderated by Alexis Finkelberg Bortiniker, JD, a health care attorney at Foley & Lardner.
Alvarnas said although his work as a clinical and policy adviser is important, what matters most to him is the time he spends with patients at City of Hope, where he is also a professor specializing in HIV-related cancers and hematopoietic cell transplants.
“I’ve had the opportunity to care for a lot of patients who face the cancer journey, where our relationship begins with me saying, ‘You have cancer.’ And once you do that, everything that patient and that family knew before that moment is irrevocably changed by those words,” Alvarnas said.
What happens next, he said, determines whether the patient and family can be “restored to wholeness,” or whether they will experience “a nightmarish, disconnected experience of what represents the worst attributes of our health care system.”
A theme of the ACCC meeting that resonated strongly, Alvarnas said, is the idea “that patients and families are what really matters.”
He offered examples of where care has fallen short, telling the story of a Spanish-speaking patient who had been treated for 10 years but did not realize that he had leukemia. Another patient lost access to the care she’d been receiving because of changes to her managed care plan. She had to come up with a workaround to stay on her regimen of immunosuppressive drugs.
“Patients and families shouldn’t have to work around the edges of the system in surreptitious ways to ensure that they stay alive,” Alvarnas said.
Yet these stories are becoming more common in the era of narrow networks; despite incredible scientific advances, Alvarnas said, disparities in cancer care are widening.1
The American Association of Cancer Research (AACR) 2020 progress report stated that 34% of cancer deaths among adults aged 25 to 74 years in the US could be prevented if socioeconomic disparities were eliminated.2FIGURE.
The quest now, Alvarnas said, is to put these ideas in a statute that would have real impact.
“What would a bill of rights look like?” he asked. It would include the right to culturally appropriate care, ensuring that treatment options are fully explained in a patient’s own language, he said, and it would ensure transparency, creating better processes for engaging oncology specialists with the skills to understand complex genomic testing results that can guide treatment.
Patients’ rights would include timely access to an oncologist after a diagnosis. “There’s something morally repugnant about building a system saying that people have coverage, but that coverage doesn’t translate into access,” Alvarnas said.
It would give patients “the full breadth of opportunities” to get care in a community setting, he said, but also access to specialized care—for example, if their disease required chimeric antigen receptor (CAR) T-cell therapy or other cutting-edge treatments. And patients should be able to return to a community setting “in a way that doesn’t involve lifting Heaven and Earth to make it happen,” Alvarnas noted.
For all the discussion of doing more to help vulnerable communities—and end underrepresentation in clinical trials—patients often have precious little to say about their own care whereas payers make all the rules, Alvarnas said.
“What’s missing in too many conversations is the way in which patients and families can resume agency in their lives,” Alvarnas said. The Cancer Patients Bill of Rights was seen as a way to put patients—not cost cutting or other priorities—back at the center of the discussion.
In the California Assembly, he said, the resolution had unanimous support.3 But, Bortiniker asked during the talk, what makes this the best approach to address lack of access?
Alvarnas said something must be done to address the growing gaps in care between groups as innovation proceeds. Cancer mortality has decreased 31% since Alvarnas was a resident more than 30 years ago, “and over the past 2 years, if you look at [American Cancer Society] reports, cancer mortality has decreased by the greatest decrements ever seen,” he said.4
“Innovations have had an outsized impact upon the needs of [patients with cancer] and the promise of what that cancer journey can look like,” he said. “On the other hand, when I look at those statistics and I look at things like the AACR 2020 report, describing health disparities, it’s clear that those great advances have not been equitably or fairly or equally realized by patients who bear the burden of cancer.”
Cancer care professionals, he said, must turn to the policy arena to fix this problem. “We have to get out of our offices, we have to get out of our centers, and work with partners across a whole bunch of different industries but also with policy makers, because I know that policy makers are working in well-intentioned ways to improve access to care and to improve coverage,” he said. Efforts such as the Cancer Moonshot 2.0 show that fighting cancer remains top of mind for political leaders.5 But unless oncologists and hematologists speak out, the right solutions may not rise to the top.
Too many unique needs of patients with cancer “get lost in the mad dash to achieve grand overarching designs,” he said. Working with legislators to articulate their needs would be a “grounding moment.”
Alvarnas said he found it striking how much California’s legislators identified with City of Hope’s ideas. Most lawmakers knew of a friend or family member who had become exasperated by the current system. They understood that “cancer can be dehumanizing, and that the moment of realizing that you’ve been diagnosed with cancer is so disempowering,” he said.
Because the first step in California was a resolution, the focus was on articulating core principles of accessibility, scalability, and patient experience rather than numeric goals. That will come, however. City of Hope has formed partnership with minority health care groups, and its work with employers suggests there are many allies in this cause.
Part of the mission, Alvarnas said, is “increasing expectations.”
Frequently, patients want referrals to academic centers but their requests are denied by a managed care provider, Alvarnas said. “Fundamentally, we don’t want clinicians to be caught in a position of being subjected to a model that sometimes tries to achieve efficiency through strangulation of resources,” he said. “The idea that you can reverse engineer care to suit a certain preconceived notion of how much health care can cost is a very dangerous path to go down.”
This view extends even to CMS, where the Oncology Care Model (OCM) was judged based solely on whether it saved money within just a few years rather than on the efforts it spurred in practices to transform care delivery—a process that comes with a steep learning curve.6
The delivery system needs to start with the community physician but offer flexibility to refer patients to academic centers if their cases are especially complex or if doing so could offer access to a clinical trial, Alvarnas said. Clinicians can’t be gatekeepers for the insurance company, he said.
“The system has to be more scalable [and] suited to help serve patients based upon their needs, as opposed to being constructed with these rigid barriers that aren’t based upon clinical insights,” Alvarnas said. Too many judgments by insurers are not based on clinical guidelines and don’t reflect how doctors want to manage cancer, he said.
Data in California show that Medicaid beneficiaries have worse outcomes than others with cancer and that patients covered by Medicaid are less likely to have care that follows guidelines. With this in mind, City of Hope created the campaign “Cancer Care Is Different” to empower patients and families “to have the best outcomes possible.”7
What about cost? Alvarnas said that much of the policy focus—and resulting denials by payers—centers on ensuring the solvency of the Medicare trust fund or making sure state Medicaid systems stay within a budget. Too often, however, this results in the wrong care being given and the overall cost being higher than it would have been if the right therapy had been given initially, he said.
“In fact, when we’ve done value analytics around the work at AccessHope, there is a return on investment to delivering the right care early on,” Alvarnas said. Cases such as these offer power when legislators see them—but the lawmakers need to hear from patients, not just clinicians, he said.
Even CMS’ Center for Medicaid & Medicaid Innovation (CMMI) has fallen short, and Alvarnas sees the agency as less willing to experiment with new models than many employers.
Treating patients and families with humanity is essential. “When you talk about better outcomes, it isn’t the patient waiting in more lines or having to go through 30-day increments of having to appeal access to care or site of care…,” he said. “It’s not in patients experiencing financial toxicity. It’s not in patients navigating the spaces in between where something should be delivered here, something else should be delivered there. That’s the worst conceivable possible system.”
Value, he said, must be centered around the needs of patients and families who are living with cancer day to day. “This is where I get a little bit flustered—I read through the CMMI assessment of the OCM, and conclusion number one, was it didn’t save money. All I can think is ‘My God, you learned nothing.’”
The work that occurred at the practice level to keep patients out of the hospital or offer navigation help or survivorship was completely lost, he said.
“CMS didn’t notice,” Alvarnas said. “There’s no value described in that report. I think if your primary conclusion is that [OCM] was a failure because it didn’t save money, you weren’t paying attention.”
1. Kehl KL, Keating NL, Giordano SH, Schrag D. Insurance networks and access to affordable cancer care. J Clin Oncol. 2020;38(4):310-315. doi:10.1200/JCO.19.01484
2. Sengupta R, Honey K. AACR Cancer Disparities Progress Report 2020: achieving the bold vision of health equity for racial and ethnic minorities and other underserved populations. Cancer Epidemiol Biomarkers Prev. 2020;29(10):1843. doi:10.1158/1055-9965.EPI-20-0269
3. California legislature passes first-in-the nation Cancer Patients Bill of Rights resolution by Senator Susan Rubio. News release. Senator Susan Rubio. August 30, 2021. Accessed March 14, 2022. https://bit.ly/3MNe8t3
4. Siegel RL, Miller KD, Fuchs HE, Jemal A. Cancer statistics, 2022. CA Cancer J Clin. 2022;72(1):7-33. doi:10.3322/caac.21708
5. Fact sheet: President Biden reignites Cancer Moonshot to end cancer as we know it. News release. The White House. February 2, 2022. Accessed March 14, 2022. https://bit.ly/3w14Ofg
6. Evaluation of the Oncology Care Model: performance periods 1-5. Abt Associates. January 2021. Accessed September 19, 2021. https://innovation.cms.gov/data-and-reports/2021/ocm-evaluation-pp1-5A
7. Cancer Care Is Different. Accessed March 14, 2022. https://www.cancercarediff.org/