Racial gaps persist in cancer care — here’s how we can close them

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.

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.

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.

John Carpten is professor and chair of Translational Genomics at the Keck School of Medicine at the University of Southern California.