How Can We 'Close the Gap'
- SurvivorNet hosted “Close the Gap,” our annual conference addressing racial disparities in cancer care, on Thursday, June 23, 2022. Hearing from a diverse collection of cancer experts, cancer survivors, hospital leaders, community organizers and industry executives, we explored concrete solutions to the inequities facing people of color fighting cancer today.
- You can watch the full event here.
- The importance of diversifying clinical trials and fighting provider bias cannot be understated, according to our experts. Taking concrete steps to give communities of color easier access to clinical trials and bringing awareness to provider bias is key.
- Experts and survivors alike also stressed the importance of advocating for yourself as a patient. Lymphoma survivor Alex Echols recommends always bringing your questions to appointments, and ovarian cancer survivor Marecya Burton urges the prioritization of screening.
In case you missed it, you can watch the whole event here. And in case you’re unfamiliar, Close the Gap is an annual virtual conference hosted by SurvivorNet in collaboration with Perlmutter Cancer Center at NYU Langone Health. Members of our powerhouse lineup for 2022 included the likes of cancer experts, cancer survivors, hospital leaders, community organizers and industry executives. The goal of the conference was to create space for crucial discussions surrounding issues of racial disparities that exist within the world of cancer prevention, detection and treatment.Read More
“Unfortunately, there still are gaps, and most of those gaps disproportionately impact the communities of color… Some of the longest standing and largest gaps exist between the black community compared to any other racial and ethnic group.”
Here are some deeply troubling statistics: Black Americans have the highest cancer death rates and shortest survival times of any racial or ethnic group in this country. A Black woman who gets breast cancer in America has a 39 percent higher chance of dying than a white woman. African-American men with prostate cancer are almost twice as likely to die from their illness than white men with the same disease, and African Americans have more than twice the incidence rate of multiple myeloma compared to white Americans.
Diversifying Clinical Trials to ‘Close the Gap’
An integral part of the solution that many panel members discussed was diversifying clinical trials, where researchers test new cancer treatments on living subjects. But how do we do that exactly?
Desirée Chachula, the Enterprise Equity and Inclusion Manager at Moffitt Cancer Center, says building trust is key.
“At the heart of the barriers to clinical trial accrual is the systemic factor relating to mistrust, and there is deep mistrust in black and brown communities,” she said. “And part of an intervention that has to happen in a more systemic way is being able to have long-term relationships within the community so that trust is built and inherent.”
For Dr. Winkfield, “the number one reason why people don’t enroll in clinical trials is because they’re not asked.”
“It’s really important for providers, where there are clinical trials ongoing, to ask patients, ” Dr. Winkfield said. “Because, frankly, individuals do want to participate in clinical research.”
And Dr. Tania Small, the Vice President, Global Medical Oncology Franchise Head and Head of R&D Inclusion Diversity Council at GSK, offered other concrete solutions for increasing enrollment and decreasing the burden of clinical trials:
- Change eligibility criteria to reflect what “norms” are for diverse patients. “When you look at trial design we create studies with eligibility criteria with white male norms… This is a key barrier that can keep 20-25% of patients from trials.”
- Create consent forms that come in multiple different languages other than English.
- Decrease the time and financial obligation for patients. “People work, people have kids, people have to pay for transportation… Can we pay for their babysitting, and can we pay for their gas?”
- Providers should be more transparent and take the time to explain the details of a trial.
- Have patient councils and patients involved when trials are being designed.
- Bring the trials to diverse patients, and have them operate within their communities.
- Make sure the physicians that run the clinical trials are diverse.
Addressing Provider Bias
Provider bias is a huge issue within the clinical trial space, but it also exists in cancer care as a whole.
“Research supports that doctors and nurses have the same level of implicit bias as non-care-providing population,” Desirée Chachula said. “And this is surprising because despite being in an altruistic profession that seeks to heal and care, providers have the same level of bias as all of the all of us and they often don’t know it.”
That being said, Chachula says we need to take the following steps to address these implicit biases and create “good” cancer care for all.
- Institutions need to bring awareness to provider bias.
- Providers should better understand the people they’re serving, as well as their cultures, without leaning into stereotypes and generalizations.
- Institutions should create a healthcare workforce that reflects the diversity of the communities they serve.
Advocating for Your Health as a Person of Color
So, if diversifying clinical trials and addressing provider bias is key on behalf of the institutions, what can patients of color do to advocate for themselves? Dr. Kathie-Ann Joseph, the Vice Chair for Diversity and Health Equity for the Department of Surgery and Transplant Institute at NYU Langone Health, says patients should take note of exactly where they’re choosing to get their care.
“I would really suggest that if you’re diagnosed with cancer, it’s good to go to a place where your case is going to be discussed in a multidisciplinary manner, preferably a comprehensive cancer center,” she said. “By that I mean you’re not going from like one medical office to another medical office where your care is sort of fragmented.”
Best-selling author Alex Echols is a lymphoma survivor and advocate who knows the struggle of finding the right care team all too well. He spoke at our Close the Gap event about the importance of self-advocacy.
“My initial care team didn’t work out, we’ll just say that,” Echols said. “So I spent about two to three months not getting any treatment or anything like that because I was looking for the next care team that I thought it was gonna help me go all the way home.”
Echols eventually found the right team that had his best interests in mind. Today, he’s a cancer survivor hoping to share his story to help others in the midst of a cancer journey and one of his pro tips is to simply ask questions.
“Self advocacy was the biggest thing that I had to take all the way through,” he said. And one of the most important things for me was always putting down questions. So, I would go into the doctor’s office sometimes with three questions other times with 15, and I made sure that they heard every single question that I had.
“And I think that is a very important thing for us to understand as patients – especially from different socio-economic backgrounds, ethnic backgrounds, minority backgrounds – is that the purpose of the physician in that office across from me is they’re there to listen. They’re there to hear me so that we can work together as a team so that I can be healed and so that I can be a cancer survivor at some point.”
Another cancer survivor, Marecya Burton, wanted to stress the importance of screening and listening to your body as a part of self-advocacy. She was diagnosed with ovarian cancer at just 20 years old after suffering from a myriad of odd symptoms – a common predecessor to an ovarian cancer diagnosis – but didn’t think anything of her symptoms because she was a college student-athlete at the time.
“Screening is something, for me, that I really push to anyone,” she said. “A big thing that I think goes hand in hand with screening is… pulling away a part of that fear, right? That fear that this is bad, and I don’t want to go because I don’t want to know what might happen.”