Ending Cancer Health Disparities Through Increased Collaboration

Despite tremendous progress against cancer in the past few decades, not all Americans have benefited equally from advances in research and treatment. The American Association for Cancer Research (AACR) is passionately committed to eliminating cancer health disparities, and has numerous initiatives devoted to this critical issue.

This week, two individuals who have played important roles in cancer research and advocacy teamed up to call for collective national action to narrow cancer health disparities. In an article published in The Hill, Kathy Giusti and John Carpten, PhD, FAACR, wrote that disparities could be addressed by several common-sense strategies, including diversifying clinical trials, making trials more streamlined and therefore more accessible, and enlisting support from industry and government stakeholders.

“The COVID vaccine’s development proved how much can be achieved when Congress, local government, industry, and academia work together. That same collective urgency and action should define the fight to close cancer gaps,” Giusti and Carpten wrote.

The full article is available here and below.

In recent decades, cancer deaths have gone down and survival rates have gone up. But ­­­Black Americans still face an outsized mortality rate. Black cancer patients experience 173.6 deaths per 100,000 people in comparison to the national average of 152.4 per 100,000, according to the National Cancer Institute.

For the two of us—one, a patient living with multiple myeloma; the other, a researcher who’s studied cancer breakthroughs for three decades—we’re driven by a shared obsession: How do we fix our broken system and bring cures to all patients? Fifty years since the National Cancer Act, our country needs new approaches if we are to democratize cancer care.

Kathy Giusti
Kathy Giusti

These stats only get grimmer when you look at commonly diagnosed cancers, and compare them to outcomes for white patients. Black women are 39 percent more likely to die from breast cancer. Black men are a full 111 percent more likely to die of prostate cancer.

While numerous factors contribute to these disparities, it isn’t hard to imagine a better reality—and indeed, the obviousness of some of the steps needed is as maddening as the challenge itself. The COVID vaccine’s development proved how much can be achieved when Congress, local government, industry, and academia work together. That same collective urgency and action should define the fight to close cancer gaps.

To start, oncology clinical trials must more accurately reflect patient populations. In recent years, funders such as the National Cancer Institute, the Pharmaceutical Research and Manufacturers of America, and the Food and Drug Administration have set more robust representation goals. That’s a good start. But we must go further—including by setting explicit diversity targets, tailored to the disease being studied and with effective enrollment strategies.

John Carpten
John Carpten, PhD, FAACR

Take multiple myeloma. Black patients are twice as likely to be diagnosed with myeloma than white patients, but their inclusion in clinical trials has stagnated in the single digits. The Multiple Myeloma Research Foundation (which Kathy founded) has tackled this problem head-on, working with Ochsner Health, a Louisiana-based community health system with about 1,200 multiple myeloma patients, 40 percent of whom are Black, and investing human and financial resources in the community to enable sustained, trustworthy engagement.

We’re making progress, but there’s only so much patient advocacy groups like ours can do. It will take industry and government investment to have impact at scale.

Another way to close disparity gaps is to make clinical trials more accessible. Cancer patients with common ailments like high blood pressure have often been excluded from clinical trials. Simply reforming eligibility requirements could open trials up to thousands of additional patients annually. 

Trials themselves can be streamlined, too, with fewer associated visits and tests, so that patients with family and work obligations or transportation challenges don’t have to worry about how to add multiple appointments to the mix. Earlier this year, for example, CVS launched a Clinical Trials Business that aims to enhance precision patient recruitment and provide new options for trial delivery. And things like wearable technology and telemedicine mean that patients can be part of trials without having to leave home.

To meaningfully close cancer gaps, clinical researchers first must know where to find diverse patient populations. It sounds so basic. Yet, information today is fragmented among individual research centers, government organizations and pharmaceutical companies. Meanwhile, the academic medical centers with the most clinical trial expertise are not reaching enough Black patients. And the community-based sites that offer more diverse patients lack the infrastructure and experience to run trials.

So here’s an idea: What if leaders in the pharmaceutical industry worked in partnership with Congress and local governments to create a health system-wide market exchange? Stakeholders could pool their knowledge about what patient populations are being treated for which cancers and where, along with information about the trial capacities at those sites. A common repository would benefit everyone in their shared aim of curing cancer, improving the research that fuels cutting-edge treatments, while making those treatments more accessible. And in today’s age of precision medicine, this type of collective action, rooted in the accurate representation of diverse patient populations, can only spearhead more precise treatments for all.

A new program proposed by the president and now before Congress—the Advanced Research Projects Agency for Health (ARPA-H)—would help catapult innovative ideas for system-wide change and thereby set the stage to improve the quality of healthcare for all Americans.

None of this will be easy, but it needn’t be hard. And it needs to be done now. The question is, will industry and Congressional leaders allocate the funding and provide the framework to set collective action in motion?

Kathy Giusti is founder of the Multiple Myeloma Research Foundation and co-chair of the Harvard Business School Kraft Precision Medicine Accelerator. She received the 2021 AACR Distinguished Public Service Award in recognition of her leadership and advocacy. Over the course of her career, Giusti has been appointed to multiple panels, including the National Cancer Advisory Board, the Obama Precision Medicine Initiative, and the Biden Moonshot.

John Carpten is professor and chair of Translational Genomics at the Keck School of Medicine at the University of Southern California. He has held numerous key roles at the AACR, currently serving on the Board of Directors and as a Fellow of the AACR Academy. He has previously served as Chair of the AACR’s Minorities in Cancer Research Council; Chair of the AACR Special Conference: The Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved for several years; and Chair of the AACR Annual Meeting Program Committee, among other positions.