We’ve heard from our experts time and time again that clinical trials can offer the best care for people with cancer and screenings are of the utmost importance. But with increasing awareness of the racial disparities that exist within cancer care, how do we ensure that communities of color are a part of the equation? This question was a key focus for panelists at our ‘Close the Gap’ conference today in collaboration with Perlmutter Cancer Center at NYU Langone Health.
First off, it’s important to understand why clinical trials are so important. Clinical trial information serves as the basis for government approval of cancer drugs. Unfortunately, these trials are lacking in diversity, which means that the approvals may not accurately reflect what is best for racial minorities with cancer.
Read MoreRELATED: How to Address Racial Disparities in Cancer Care
Shalini Vallabhan, managing director of the American Cancer Society Cancer Action Network, said her organization is actively trying to combat this issue on a policy level.
“We are pursuing policies that will help ensure that we have diverse participation in clinical trials, and we also want to help remove the additional barriers like financial constraints that individuals may have in terms of whether or not they access a trial,” she said.
And barriers like financial constraints don’t only affect clinical trial participation — they affect screening participation as well.
Panelist Jackie Berangere, a patient navigator at NYU Langone Health, said many people in communities of color avoid screenings because they don’t want to know if they have a cancer diagnosis for various reasons — including finances.
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“They’re afraid to find out whether or not they have a diagnosis, believe it or not, and we can try to tell them the sooner you get diagnosed the better because then you have better chances of survival, you have better chances of better options, but because of their current living situations… they just don’t want to face it at this moment,” Berangere said. “We have a lot of single parents, we have a lot of undocumented immigrants who are single parents as well. They feel that if something happens to them, what’s gonna happen to everybody else.”
But the fact is that discovering a cancer diagnosis as soon as possible often gives you the best chance for better treatment options and better outcomes. Berangere also said spreading factual information can help to eliminate some fears that people of color understandably have when it comes to the medical system — a system that has failed communities of color in the past.
Not-so-distant betrayals of trust like the Tuskegee syphilis experiment, otherwise known as the "Tuskegee Study of Untreated Syphilis in the Negro Male,” for example, ran from 1932 and went on for 40 years. The study, which enrolled more than 600 African-American men in Alabama, was conducted by the U.S. Health Service. The participants were not told the true nature of the experiment and were not given proper treatment to cure the disease. In 1997, President Bill Clinton apologized on behalf of the nation, but apologies can only go so far.
“We have to understand that for members of our communities there is a justified reason for fear,” Berangere said.
So going beyond increased education, how do we give more communities of color better access to cancer care? The American Cancer Society says one solution is through policy.
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“Research conducted by the American Cancer Society has shown that individuals without health insurance are more likely than individuals with health insurance to be diagnosed with advanced cancer which tends to be more deadly and more costly,” Vallabhan said.
With this data in mind, Vallabhan said the ACS is focusing on policies that are not only meant to “close the gap” in terms of access to care but also access to health insurance.
“We are advocating for policies to insure that health insurance is meaningful and affordable,” she said. “So, for example, coverage for cancer screening, diagnostic tests and therapies — that should be covered in health insurance.”
She also mentioned that the recent Supeme Court ruling protecting the Affordable Care Act — for the third time — was “a victory for cancer patients and others dealing with serious illnesses,” but there is still much work to be done.
“We are also fighting in the 12 remaining states that have yet to expand Medicaid an important safety net health insurance program,” Vallabhan said. “If these 12 states expand Medicaid, then we will have over 4.3 million individuals in the United States that have access to good health insurance.”
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