Dismissed symptoms, discarded tumor tissue, insurance denials and delays — when it comes to the issues that prevent cancer patients from getting equitable care, the list goes on and on. Racism and redlining’s legacy are part of the problem. Lack of health literacy, the use of commercial tobacco (particularly in the South) and a refusal to expand Medicaid health coverage into all eligible states come into play, as well.
How do you solve issues of this magnitude? For researchers within the Hutchinson Institute for Cancer Outcomes Research, or HICOR, you gather all the stakeholders together in one room to compare notes, share stories and hash out solutions.
“These really are the best of times and the worst of times in cancer care,” said Fred Hutchinson Cancer Center’s Scott Ramsey, MD, PhD, quoting the opening line of Charles Dickens’ A Tale of Two Cities. “On one hand, we have amazing new therapies that are providing cures — Jimmy Carter had widespread metastatic melanoma but is still alive thanks to immunotherapy. On the other hand, we have tremendous problems with financial toxicity and patients who don’t have access to treatments. We have to find a way to make the experience better for everybody. That’s what this summit is all about.”
For the last 10 years, HICOR has brought together all the stakeholders in cancer care — patients, patient advocates, clinicians, policymakers, insurance execs, hospital administrators, etc. — to discuss who’s being served and who’s not — and brainstorm ways to improve care for all.
This year’s conference, the first in-person meetup since the start of the pandemic, drew around 150 participants to Seattle’s Bell Harbor International Conference Center to discuss the good, bad and ugly of cancer care delivery. New statistics from HICOR highlighted improvements in the quality of care offered by the state’s cancer clinics, but a panel discussion with Black patients made it clear that lingering biases are still causing harm.
Ramsey kicked off his session by listing some of the current challenges in cancer care, which include staffing and drug shortages in clinics; patients dealing with financial distress, access issues and racism and the ever-growing cost of cancer treatments.
He also briefed the audience on the process and purpose of HICOR’s Community Cancer Care Report which Fred Hutch's health economics researchers started producing in 2018. HICOR’s fifth report was published over the summer, with an update expected in March.
“The idea was to publish data showing how people are doing in the metrics that show the cost of care,” he said, explaining how the “quality metrics” — all of which are measurable pain points in the cancer care delivery system — were identified through HICOR’s steering committee, working groups, patient advocate input and previous stakeholder gatherings. “At the time it was considered risky, but our hope was that the community could take the data and use it to provide better care.”
And apparently, that process is working.
“We definitely want to share some shoutouts to clinics that have improved,” he said, adding that some clinics were able to bump up their performance by as much as 5% between the first and the last report.
Many clinics made “huge” improvements, he went on, with regard to giving guideline-appropriate therapy for breast cancer, colorectal cancer and lung cancer. Others were able to push down high rates of tumor marker testing for surveillance of breast cancer patients, which the American Society of Clinical Oncology has deemed a low-value service.
Ramsey also went over a few of the new quality metrics which are included in the new Community Cancer Care Report such as biomarker testing for metastatic lung cancer; germline genetic testing for breast, ovarian, pancreatic and prostate cancer and timeliness of care from diagnosis to treatment.
With regard to biomarker testing for metastatic non-small cell lung cancer, Ramsey said 88% of patients had received the recommended testing, a finding so high it surprised featured speaker Ray Osarogiagbon, MD, who works to improve lung cancer care in the Memphis area.
Ramsey noted that patients with Medicaid insurance had lower testing rates than other insurers, stating “it’s a theme you will see for the other new metrics.”
Timeliness of care was another area in need of improvement. The average wait in the state of Washington for patients with metastatic solid tumors like breast, lung or colorectal cancers to start treatment was 34 days. But Black patients have almost twice the amount of time between diagnosis and treatment, Ramsey said.
“We have lots of work to do to make sure patients are getting access to treatment,” he said. “Our clinics are dealing with rural patients, with patients who have significant social needs. We have to talk holistically about all the factors a patient faces and how we can address them inside and outside of the clinic.”
When it comes to genetic testing for BRCA1/2 mutations in breast cancer patients, statistics showed only 63% of patients in Washington state received these tests. Genetic testing can provide additional data to help identify more precise treatments along with alerting a patient that their blood relatives may have a potential cancer risk.
“Even though the guidelines have been out there for a very long time, we are still struggling to get full implementation,” Ramsey said. “And there were big drop-offs among Medicare and Medicaid patients for testing as well as lots of disparity in Black and Hispanic groups.”
Germline testing for ovarian cancer patients was also low — just 55% of patients received it.
“These numbers really need improvement,” Ramsey said. “And it’s important for the patients themselves as it can improve their outcomes. But just over half are getting tested. And in Medicaid patients it’s even lower, barely 1 in 3 patients is getting tested.”
Testing for BRCA1/2 germline mutations only happened in 15% of pancreatic cancer patients. For prostate cancer patients, it was even lower.
“Only 6% of the eligible patients with prostate cancer got tested,” Ramsey said. “We’ve got a long way to go on the journey of getting people tested so they get access to treatments that work for them.”
Fred Hutch Prostate Cancer Genetics Clinic Director Heather Cheng, MD, PhD, also emphasized the importance of testing for germline (or inherited) mutations in prostate cancer patients, particularly for those with metastatic disease.
“Prostate cancer is the second-leading cause of cancer deaths in U.S. men,” she said. “But there have been rapid changes in the past few years. In 2016, we discovered that about 10% of the metastatic prostate cancer population had germline BRCA2 mutations.”
— Dr. Robin Yabroff, Scientific Vice President, Health Services Research, American Cancer Society
The PROMISE study, co-led by Dr. Heather Cheng, aims to create a comprehensive nationwide registry of prostate cancer patients with germline pathogenic variants by prospectively screening approximately 5,000 subjects with a confirmed prostate cancer diagnosis. Patients at all stages of disease are welcome to participate in the PROMISE Registry. PROMISE is open to patients nationwide. To find out more, visit the registry website.
As Ramsey’s statistics indicated, however, germline genetic testing for prostate cancer patients remains quite low, which means prostate cancer patients may not be getting many of the new targeted therapies such as PARP inhibitors and immune checkpoint inhibitors. Likewise, the patient’s family won’t realize they may also be at risk for breast, ovarian, prostate or pancreatic cancer — all of which can be encouraged by BRCA1/2 mutations.
“If we can identify patients with these mutations through genetic testing, they’ll have more options for treatment,” said Cheng, a professor in the division of Hematology and Oncology at the University of Washington. “The precision toolbox keeps getting bigger for metastatic prostate cancer.”
Clinicians also need to keep up with the literature and request these tests, she said, adding it takes “an average of 17 years for scientific evidence to change clinical practice.”
Cheng and colleagues are currently trying to understand what prevents patients from getting tested, even when it’s offered for free and at home.
“We know it’s not cost,” she said. “Maybe it’s hesitation, maybe it’s timing. Is there an education or cultural component? Is it medical mistrust? That’s the next phase of our clinical trial; we need a better understanding of what the barriers are.”
Two plenary speakers provided macro and micro views of interventions that can improve cancer disparities.
Robin Yabroff, PhD, MBA, of the American Cancer Society, talked about the country’s high cost — and low quality — of health care, pointing out that a third of adults in the U.S. simply did not receive any health care in the last year due to its high cost.
“The U.S. has the highest per capita spending on cancer related care among all high-income countries,” she said. ”Much higher spending than most, but many people still don’t have access to basic cancer prevention and early detection services.”
Marty Chakoian, a prostate patient advocate with Fred Hutch’s Pacific Northwest Prostate Cancer SPORE, asked if the U.S. is spending too much money on the wrong things (excessive testing, unnecessary therapies, a bloated health care system) or “Are we spending it on the right things and they just cost more now, like prescription drugs?”
Yabroff said it’s both, and then some.
“We have a lot of highly effective interventions that are inexpensive but we don’t use them,” she said. “There’s a large body of research that shows a high tobacco tax reduces smoking, which is associated with more than 11 cancers and many other diseases, but the tax is under 50 cents in some of the highest cancer rate states.”
Similarly, good nutrition practices are undercut by the high number of food deserts (places without markets with fresh fruits and vegetables) and food swamps (places with only fast food/junk food). In the meantime, the country’s obesity levels are growing exponentially.
“When the only access to food in your neighborhood is the gas station down the street where you can only buy chips and candy, that’s a huge problem,” she said.
Medicaid expansion would help tremendously, she said.
“We don’t need more evidence,” she said. “We have plenty of evidence that Medicaid expansion is associated with better care, access and outcomes. Yet at the same time we have 10 states that have elected not to expand.”
Osarogiagbon, an oncologist and director of the Multidisciplinary Thoracic Oncology Program at Baptist Cancer Center in Memphis, spoke of his efforts to curb lung cancer in Tennessee.
“Lung cancer is a tale of geographic disparity,” he said, showing maps of the U.S. highlighting increasing rates of both lung cancer and tobacco use. “There are counties in the U.S., mostly in the South, where lung cancer continues to go up as a cause of death.”
Unfortunately, current eligibility for low-dose CT lung cancer (LDCT) screening doesn’t catch all cancers. One reason is that about 20% of lung cancer patients are nonsmokers and ineligible for these scans.
Seeking better outcomes, Osarogiagbon instituted a Lung Nodule Program at his cancer center (conducted in conjunction with LDCT screening) where incidental lung nodule findings found on CT scans done for other reasons were flagged for further investigation and follow-up, resulting in additional early-stage diagnoses. He also dug into surgical practices in his state and found in many cases, the lymph nodes of non-small cell lung cancer patients were not being evaluated but just discarded after surgery.
“Sixty percent of lymph nodes were being thrown away — lymph nodes with cancer in them,” he said, presenting data on how a surgical lung node collection kit “significantly improved pathologic nodal staging quality” and bumped survival.
A member of the HICOR external advisory board, Osarogiagbon also spoke on the true barriers to clinical trial participation.
“It’s not Tuskegee,” he said, referencing the medical harm done by the infamous untreated syphilis experiments in Alabama. “We need infrastructure. We have to meet people where they are – build the infrastructure in the places where people go to get care. More than 50% of the time, people say yes to a clinical trial if you ask them. And the best treatment is a clinical trial.” Read more about Fred Hutch research into clinical trial barriers.
— Patient advocate Bridgette Hempstead, founder of the cancer support group Cierra Sisters
Patient advocate Bridgette Hempstead, founder of the Seattle-area cancer support group Cierra Sisters, and Jeannie Williams, a Seattle breast cancer patient, spoke on the many barriers to care Black patients face, including racism and bias, lack of access and information, assumptions about socioeconomic status and more.
Hempstead, who often partners with Fred Hutch researchers, shared that one oncologist refused to let her into a clinical trial, even though she was eligible for it.
“When I became stage 4 eighteen years after my initial breast cancer diagnosis, my doctor said she wouldn’t let me join a clinical trial,” she said. “I had to fire her and get someone else.”
Hempstead and Williams emphasized the importance of advocating for yourself — and for others — as well as the need for wider policy change.
Medical oncologist and HICOR Co-Director Veena Shankaran, MD, emphatically agreed.
“We need to do a lot as a community to overcome racism and implicit bias,” she said. “We’re studying financial navigation and cost transparency tools — tech solutions to make it easier to provide resources. But there are larger solutions at the policy level that can help patients much more broadly. It’s important for us as researchers and clinicians to raise our voices through our research and lift them up to policy makers.”
What matters the most to patients of color?
“The most important thing is that we get the same treatment,” Williams said. “That we don’t have to fight to get diagnosed. That we don’t have to fight to get cancer treatment. That we don’t get labeled as angry Black women because we’re asking for the same as everybody else.”
Hempstead went on to share a series of educational videos she created with Fred Hutch leadership to shed light on the need for an anti-racist approach to cancer care. Clinicians, she said, need to treat all of their patients with the same respect and regard.
“If you were raised in a racist home, we’ll feel it,” Hempstead said. “We’ll know when you don’t want to touch us, when you won’t give us what we’re asking for. We need change not only at the bottom but change at the top. The number of deaths in Black women needs to change.”
The final session of the day offered an opportunity for all participants to brainstorm potential interventions and research initiatives.
“Metrics are great and they are always at the core of what we do,” said Ramsey. “But we want to move beyond reporting. We need your help to establish priorities, to tell us what can we address together as a community.”
Led by Ramsey and Shankaran, the audience was polled — real time via app — about a number of cancer care delivery questions: What are the biggest barriers to managing treatment-related side effects? What are the biggest factors influencing timely cancer care? What are the barriers to getting germline testing for breast, ovarian and prostate cancers?
Not surprisingly, many of the answers focused on lack of insurance, insurance delays or denials or other coverage issues.
“When it comes to biggest factors influencing timely cancer care, it looks like insurance was mentioned in six of the top 10 answers,” Ramsey said at one point.
Indeed, many in the audience pointed to an inability to schedule appointments without prior authorization, delays caused by wrong diagnostic codes or diagnostic codes not being recognized by insurers, denials due to mainstream treatment options being considered experimental, etc.
At the day’s end, Ramsey thanked and encouraged participants to continue their work to make cancer care more equitable by joining HICOR’s research community and/or joining the Washington State Cancer Coalition’s newly launched Cancer Action Plan of Washington (CAPOW).
“We are back and ready to help improve care in the region,” he said. “And there are a lot of avenues and resources we can bring to bear. We’ll take this feedback, these discussions, these lists, and figure out what we can do intervention-wise to make things better.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com. Just diagnosed and need information and resources? Visit our Patient Care page.
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