Berta Pesantez knew the outlook wasn’t good.
She had stage 4 cancer of the bile duct, and the chemotherapy she was receiving at her local hospital wasn’t working. Out of options, the doctor transferred Berta to the New York’s Queens Cancer Center (QCC), in Jamaica.
Berta’s new doctor wasn’t ready to give up. And she didn’t have to, thanks to a unique partnership between QCC and Memorial Sloan Kettering Cancer Center (MSK). This partnership gave the Queens hospital access to MSK’s state-of-the-art genetic testing called MSK-IMPACT®, which looks for more than 500 genetic mutations that drive cancers.
When Berta had the test, it revealed her tumor had a genetic mutation. Her doctor quickly reached out to MSK — knowing that Berta had the mutation, was there someone who could help? She learned that bile duct cancer medical oncologist James Harding, MD, was running a clinical trial targeting the same mutation. Berta didn’t hesitate to join.
The results were astounding. Just weeks after starting the medication, Berta’s scans showed a dramatic reduction in the cancer.
“When I met Dr. Harding,” says the 51-year-old mother of four from Corona, Queens, “everything changed.”
MSK’s Cancer Health Equity Research Program
Berta might have missed out on the chance to participate in that clinical trial, if not for MSK’s Cancer Health Equity Research Program (CHERP). It partners with a network of public hospitals in New York City to recruit underserved patients for clinical trials at MSK and give them access to world-class care. Across the country, the vast majority of people with cancer — 85% — are treated at community hospitals, and not major academic centers like MSK, according to the 2022 Cancer Disparities Progress Report from the American Association for Cancer Research (AACR).
“It’s all about: How can we build partnerships with local health systems so that our experts can get cutting-edge cancer therapies to the people who really need it?” says surgeon Carol Brown, MD, Senior Vice President and Chief Equity Officer at MSK. “We’re very fortunate here to have these kinds of partnerships at MSK.”
The wheels are set in motion once a participating hospital in the NYC Health + Hospital system suspects that one of its patients might benefit from additional testing. Because so many of the public hospital patients referred to MSK have advanced cancer, MSK-IMPACT testing has been offered to CHERP patients since 2016. And that testing creates the opportunity for someone to participate in a study of the newest therapies.
“When Berta’s doctor told me her story, I immediately thought she would be a good fit for the trial,” Dr. Harding says. “CHERP sent over her scans, lab results — everything we needed so she wouldn’t have to do any testing again.”
For many patients, time is of the essence. At MSK, patients have access to potentially lifesaving therapies long before they are available at community hospitals.
Racial Disparities in Cancer Clinical Trials
Patients like Berta — from diverse backgrounds — are drastically underrepresented in clinical trials, warns a study that ran in the journal Cancer co-authored by MSK medical oncologist Rosa Nouvini, MD.
- Black people represent 15% of the cancer population, but they make up just 4% to 6% of clinical trial enrollment.
- Hispanics are 13% of people with cancer, but only 3% to 6% of them participate in clinical trials.
This low enrollment is bad for patients, as well as for doctors and scientists. Patients may not learn about cutting-edge treatments. Without a diverse pool of clinical trial participants, researchers may not have an accurate picture of how a new treatment affects different ethnic groups, who tend to carry and pass on different genetic mutations or to be exposed to different environmental factors. Many findings about cancer are based on studies of predominately white communities, the report also notes.
This lack of diversity may explain why Black and Hispanic patients have worse outcomes compared with white patients for many cancers, including breast, colorectal, and prostate. Social and economic factors play a roll, but biological differences in cancers among ethnic groups should also be investigated.
The challenge for researchers is overcoming barriers for people to participate. Clinical trials require a lot from their patients, including the time, energy, and finances to travel to and from the trial. Patients often need interpreters and advocates to help them communicate about the trial with their care team.
Offering Everyone the Opportunity To Try the Newest Therapies
But the desire to take part in clinical trials is there, Dr. Brown says. When she and her team looked at how many public hospital patients were choosing to have their tumors sequenced at MSK, she was surprised most people wanted the testing.
“It really upended some preconceived notions we have in the scientific community about the willingness of underserved populations, immigrant populations, and people of color to participate in clinical trials,” says Dr. Brown.
MSK has a dedicated group of leaders focused on increasing diversity in clinical trials through several efforts, including:
- Providing interpreters
- Offering appointments via telemedicine
- Preparing culturally tailored education materials
- Minimizing costs and insurance barriers
- Conducting more basic research on the biology behind different cancers
“There are other important fixes, too, to increase participation,” says Dr. Brown. “Creating a more diverse workforce can encourage people to seek out — and trust — a doctor who looks like them.”
A New Beginning for Berta
Today, Berta is back to doing what she loves: cooking, spending time with her brothers, and preparing for the arrival of her first grandchild, due in April. She continues to take the medicine that turned her cancer around and checks in with Dr. Harding at least once a month.
For members of her community who might be hesitant to join a clinical trial, Berta wants to be a source of knowledge and hope.
“I would tell them not to be afraid — because you might get cured,” she says. “Doctors learn from other people to understand cancer. I have 100% confidence in this hospital. When I came to MSK, my life changed.”