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Town Hall Meeting on Inequities in Clinical Trials Documents Ongoing 'Tuskegee Effect' When Recruiting Minorities for Research Studies
Date:10/28/2008

Health Officials/Patient Advocates Link Underrepresentation of Minorities in Clinical Trials with Higher Death Rates

HOUSTON, Oct. 28 /PRNewswire-USNewswire/ -- What is keeping so many Americans and especially racial and ethnic minorities from taking part in medical studies for diseases from asthma to cancer? According to more than 100 political leaders, public health officials and patient advocates meeting in Harlem to address the under-representation of women, older adults, and minorities in clinical research studies, one of the most difficult stumbling blocks is overcoming the "Tuskegee Effect" -- the more than 30 years of lingering fear among a large number of African Americans and Latinos that taking part in treatment trials results in inferior care.

Taking place on October 20 at the Harlem Hospital Center, the meeting was the first of eight Regional Dialogues to be held across the country as part of the EDICT (Eliminating Disparities in Clinical Trials) Initiative, a four-year national program to assess of the state of clinical trials in the U.S. and offer solutions so more qualified Americans can take part in important medical studies. EDICT is spearheaded by the Chronic Disease Prevention and Control Research Center (CDPCRC) at Baylor College of Medicine in Houston and the Intercultural Cancer Council (ICC), an organization working to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations.

Coming at a time when less than one percent of the entire U.S. population -- or an estimated 2.3 million Americans -- are enrolled in the 80,000 medical research studies conducted every year in the U.S., the Harlem town hall documented the true extent of the "Tuskegee Effect" as a pervasive barrier to recruiting minority patients into clinical trials. Whereas half of those taking part in a 2005 Harris Interactive survey agreed that participants in clinical studies are taking a gamble with their health (49 percent) or are treated like guinea pigs (46 percent), these beliefs are much more prevalent among those African Americans living in the inner city who are poor, lack health insurance, and have inadequate access to timely, high-quality health care. According to the town hall participants, fear and mistrust of medical research are also commonplace within the Latino/Hispanic population, especially among those who are undocumented and may sense an anti-immigrant sentiment and fear of deportation.

Looking specifically at those populations least likely to participate in clinical trials, community leaders attending the EDICT town hall also documented a direct correlation with higher mortality rates of AIDS, cancer, diabetes, stroke and other life-threatening diseases. According to C. Virginia Fields, president and CEO of the National Black Leadership Commission on AIDS (NBLCA) and a former Manhattan borough president, death rates in New York City's Central Harlem health district -- where the vast majority of residents are African American and many live below the poverty line -- are more than double that of U.S. whites and 50 percent higher than that of U.S. blacks.

"I understand the lessons of Tuskegee but until we open our minds to the benefits of taking part in clinical trials, communities of color will continue to develop and die from AIDS, cancer and other diseases at higher rates than other Americans, " said Ms. Fields. "Without the involvement of African Americans and other minorities in these research studies, we will continue to pay the price and I say it is time we get involved."

Echoing this view was New York State Senator Bill Perkins, a former city councilman from Harlem and a colon cancer survivor who has made access to quality health care for all New Yorkers a top legislative priority. Testifying at the town hall, Senator Perkins admitted he was also mistrustful of medical research but said he has changed his mind and wants to find ways to change the minds of his constituents.

"The cynicism about the benefits of clinical trials is a huge stumbling block to medical advancement," Senator Perkins told community leaders. "We have to go back to square one by explaining in simple terms how medical studies are conducted and why so our citizens will have the comfort level to take part in these trials."

Besides calling for community-based education about the clinical trials process, the Harlem town hall also addressed the importance of participant navigation, a relatively new concept that helps patients navigate within today's complicated healthcare system so they can participate in a clinical trial. Modeled after the "navigator" program created at Harlem Hospital, participant navigation helps patients keep screening and lab appointments and solves their non-medical problems, such as providing child care services. However because participant navigation is not widely used by institutions conducting research studies, community leaders and specialists in clinical trials advocated implementing participant navigation as the accepted standard of practice and outlined the core competencies needed when "navigators" work with patients enrolled in these studies. These competencies include having up-to-date information on national and state insurance requirements, knowledge of what community resources are available and how to access them for patients, formal training in navigation, and having access to culturally appropriate community education materials provided in appropriate languages for non-English and limited-English speaking populations.

According to Dr. Harold P. Freeman, who established the nation's first patient navigation program in 1990 at Harlem Hospital Center and founded the Harold P. Freeman Patient Navigation Institute, participant navigation requires in-depth training so the navigator -- a registered nurse, social worker or other health professional -- can help patients move through the complexities of the healthcare system, getting patients more timely treatment, more information about treatment options and preventive behaviors.

"Evidence shows an increase in survival when minorities and underserved patients have someone to guide them through a fragmented health care system," Dr. Freeman stated. "By navigating patients around barriers to quality care, navigators actually help ensure that patients are not shortchanged in their options, including have access to clinical studying providing either standard treatment or something believed to be better."

The Harlem town hall was widely attended by local leaders, patients, family members and health professionals from the five boroughs of New York as well as national experts in clinical trials and patient navigation. Among the participants were: John M. Palmer, Ph.D., Executive Director of the Harlem Hospital Center; Glendon C. Henry, MD, Medical Director of the Harlem Hospital Center; Alfred Ashford, MD, Senior Associate Dean at the College of Physicians and Surgeons at Columbia University; C. Virginia Fields, President and CEO of the Black Leadership Commission on AIDS; State Senator Bill Perkins; New York City Council Member Robert Jackson representing District 7 in West Harlem; Leslie Wyche, Community Liaison for Council Member Inez E. Dickens representing District 9 in East Harlem; and Julie Rones, Deputy Chief of Staff and Health Legislative Counsel to Congressman Edolphus Towns (D-10th).

The so-called "Tuskegee Effect" is the lingering suspicion and fear of medical research resulting from the "Tuskegee Study of Untreated Syphilis in the Negro Male," an experiment on the effects of untreated syphilis in 399 black men who lived in one of the poorest counties in Alabama. Conducted by the U.S. Public Health Service from between 1932 and 1972, the study is one of the best known examples of research carried out in disregard of basic ethical principles of conduct.

Eliminating Disparities in Clinical Trials (EDICT) is a four-year initiative (2005-2009) funded with an unrestricted educational grant from Genentech, Inc. to improve participation of minority and underserved patients in clinical trials. In addition to the New York town hall, seven other Regional Dialogues will be held in 2008-2009 in Albuquerque, NM; San Francisco, CA; Honolulu, HI; Tampa, FL; San Juan, PR; Cincinnati, OH; and Morgantown, WV.


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SOURCE Eliminating Disparities in Clinical Trials
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