- A new report states that Black Americans still have a high rate of cancer deaths despite advancements in research and treatments.
- They said access to quality healthcare and a lack of health insurance are two of the contributing factors.
- Activists are urging Black Americans to participate in more clinical trials so more research can be done on health issues for marginalized communities.
Karen Peterson was diagnosed with stage 1 triple-negative breast cancer in 2015. She had a double mastectomy and four rounds of chemotherapy.
Two years later, her cancer was back, but this time it was stage 4.
“I had tumors in my lungs, my spine, my ribs and my pelvis,” Peterson told Healthline.
The New York mother began frantically doing her own research, looking for the latest treatments.
Three months later, she got into a clinical trial.
“I was told I had a 4 percent shot of this working… 4 percent. But it was better than nothing, so I said, why not?” she explained.
Peterson credits getting what she calls the “Rolls Royce” of medicine in that clinical trial with saving her life.
Her journey is one of the survivor stories in a new report from the American Association for Cancer Research (AACR) on cancer disparities.
She is also an example of what the group says is one solution toward addressing a decades-long problem.
Black Americans are still dying of cancer at a higher rate than white Americans, despite tremendous strides in cancer treatments.
The AACR gave Congress a virtual briefing on its findings and its recommendations last week.
“We have seen approximately a 26 percent reduction in cancer mortality rates since the declaration of the war on cancer,” said John D. Carpten, PhD, a report co-author, chair of AACR’s Minorities in Cancer Research Council, and a genomics professor at University of Southern California.
“However, it is also evident that despite these improvements, disparities and the incidents and death rates of cancer persist among underrepresented minorities and the medically underserved communities in our country,” Carpten told Healthline.
The numbers tell the story.
- Black Americans have the highest mortality rate of any racial or ethnic group for all cancers combined.
- Black men are twice as likely to die from prostate cancer than white men.
- Black and white women are diagnosed with breast cancer at about the same rate. But Black women are 40 percent more likely to die from the disease.
A panel of experts began working on the document 2 years ago, collecting and analyzing data.
“We needed to identify the parameters, inform policy makers about the enormous scope of the problem, and outline the effective steps needed to confront the problem head on,” Rajarshi Sengupta, PhD, AACR senior editor and scientific advisor, told Healthline.
The report says the disparities cost lives and impose a huge economic burden.
It estimates that eliminating health disparities for marginalized racial and ethnic groups would reduce medical costs by $230 billion.
The report says some of the risk factors are modifiable.
- cigarette smoking
- lack of physical activity
Some are socioeconomic. They include:
- lack of insurance
- no access to healthcare
- lack of preventive care and disease screenings
The group also says there needs to be more participation in clinical trials from communities of color and marginalized communities.
“A lack of racial and ethnic diversity in both the cancer research and the healthcare workforce is one of the major factors contributing to cancer health disparities,” said Dr. Margaret Foti, chief executive officer of the AACR.
Why are the clinical trials so important?
“These trials are leading to the development of new drugs. We’re learning about new science and technology and leveraging that information to make better clinical decisions,” said Rick Kittles, PhD, a professor and director of the Division of Health Equities at City of Hope National Medical Center in California.
“When the pipeline has nothing but data on whites, that becomes problematic,” he told Healthline.
Why aren’t more Black Americans participating?
Kittles says part of the problem is a historic lack of trust and of Black Americans being exploited.
He points to the Tuskegee study, a 40-year public health experiment that followed 600 Black men. It included problems such as not treating syphilis or even letting study participants know their diagnosis.
There is also the case of
Doctors at Johns Hopkins Medical Center in Maryland used her cells in key scientific discoveries. Her cells were taken without her knowledge, consent, or compensation.
Kittles says there are other barriers.
“A lot of the trials are done in major universities, so access is a problem. Lack of insurance may be a problem, or you may be underinsured and it may not cover the treatments,” he explained.
Kittles says there are private sector groups that try to fill in the gaps.
“They raise money to pay for transportation, living expenses,” he said. “But at a large scale level, that’s just a Band-Aid.”
He says the large cancer centers that get taxpayer funded research money have to do more.
“If we don’t, all of what we’re spending now in terms of the development of precision medicine is going to be compromised,” he added. “We’re going to have a situation of ‘haves and have nots’ and it’s going to increase health disparities.”
The report says the survivors like Karen Peterson may be one of the best ways to convince others to participate.
Peterson says she tries to “pay it forward” and encourage other African Americans to seek out clinical trials.
She says she started by going online to www.clinicaltrials.gov.
“I understand the resistance within the African American community to participating in research studies, but if we do not participate how can we complain that researchers are not working on our behalf?” she said. “We need to be willing to take a chance and to demand to be included, and researchers and oncologists must make an effort to bridge the gap.”