Waiting to be Asked

aframer

Yesterday’s clinical trials create today’s lifesaving treatments.  They are the fastest and safest way to discover therapies that work for humans.

Title VII of the Civil Rights Act of 1964 says its unlawful to discriminate against someone based on their race, color, religion, sex or national origin but in clinical trial participation, it’s time to get racist.

According to the US Census Bureau, whites account for 66.9% of the total US population and make up 83.3% of trial participants.  As the second largest minority group in the US, African Americans comprise 13% of our population yet recruitment rates for African Americans in clinical trials is a paltry 5%.

Yet, African Americans:

  • are twice as likely as a Caucasian to develop diabetes
  • are 30% more likely to die of heart disease
  • are twice as likely to suffer a stroke
  • 40% have high blood pressure

According to the American Cancer Society, “African Americans have the highest death rate and shortest survival of any racial ethnic group in the U.S. for most cancers.”

From 1985 to 2008, AIDS cases in African Americans increased by 30% while the number of cases in the White population decreased by the same percentage.

If you are following my math, many therapies are being developed for populations less likely to be affected by the condition.

In researching stats for this piece, almost every google hit for “African Americans in clinical trials” started off with a reference to the horrors of the Tuskegee Syphilis Study.  It’s time to move past Tuskegee.

A phone survey conducted by the National Bioethics Research Initiative revealed African Americans and Hispanics believe in the importance of research and were willing to participate but were unaware of or lacked access to clinical trials.

They aren’t afraid.  They’ve never been asked.

Who asks?  Their doctors.  However, of the 3.9% of African American physicians in the US, few of them participate in clinical trials.

African Americans tend to be community based physicians versus based in academic, institutional or hospital settings.  They see a large number of patients, mostly African American and likely qualified for study enrollment, quite an advantage, but their busy environment creates participation barriers.

African American physicians are rightfully focused on their practice and not as well informed of the clinical trial process. Seeing patients means income and there is little incentive to not see patients and investigate trials. Sponsors need to take extra time to inform physicians how they and their patients benefit from trial participation.

Increasing African American participation in clinical trials requires time and effort from study sponsors to find, train and fund African American physician trial leaders who are involved in their communities.  It’s time to be racist and start targeting African American physicians and thus, participants, who are waiting to be asked.

Sherry Dineen

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