A disturbing email from a friend in an African country has moved me to address an issue that I written about: Black people; attitudes on mistrust; and the subsequent impact on benefiting from developments in medical treatment.
Compounding the problem, diverse patients (especially Blacks) are historically underrepresented in clinical research. The shortage of minority participants and researchers continues despite arguments made in the medical community that minorities should be included to identify disparate reactions and disparities in healthcare. Trials that over-represent Caucasians lack sufficient data on potentially relevant patient differences. This is extremely important, because in some cases, medicines don’t work as well or they may work better. Side effects or risks also may be different.
My friend, who himself is HIV-positive, is a high official in the Health Ministry of Health in an African country, distinguished by it’s astounding rate of HIV/AIDS infection rate. His job is primarily centered on HIV/AIDS education, yet he, like millions of other Blacks in the Diaspora, adheres to an “AIDS conspiracy”.
Here is an excerpt from his email to me:
“I have not been well due to the common disease that attacks us blacks because it was invented for that purpose as a results I have been juggling my life around improving my health and taking care of the many sibling and cousins we have back at home, but i am back in the office now and feeling stronger than ever.
I still have so many years ahead of me and I should continue to invest in my health and also those around me, it is tough to be a black man. Because irrespective of where you grow up you will always struggle to make a living due to systems created by those experts in the field of oppressions.”
Unlike most Americans, Africans in the Diaspora are aware of the man-made theory of AIDS, and the possibility that the WHO’s extensive vaccine programs in Africa in the 1970s are connected to the severe outbreak of AIDS in the early 1980s.
Internationally, in parts of Asia and Africa, mistrust of vaccines is often tied to “Western plot” theories, which suggest that vaccines are ploys to sterilize or infect non-Western communities. Suspicion has existed for different infections and vaccines over the past 20 years. For example, in Cameroon in 1990, rumors and fears that public health officials were administering a range of childhood vaccines to sterilize women thwarted the country’s immunization efforts. Similarly, in Tanzania in the mid 1990s, a missionary raised concerns about tetanus immunizations, sparking sterilization rumors and halting the campaign. And in 2005, measles vaccine suspicions led to decreased vaccination rates and increased infections in Nigeria.
One of the most striking instances of vaccine suspicion in Africa has concerned the polio vaccine. In 1999, British journalist Edward Hooper wrote The River: A Journey to the Source of HIV/AIDS. He speculated that the virus that causes AIDS transitioned from monkeys to humans via a polio vaccine. He argued that the polio vaccine was made from the cells of chimpanzees infected with the primate form of HIV (Simian immunodeficiency virus, or SIV), which adapted in humans and caused disease; and that there were coincidences in the sites where the polio vaccine was first administered and where the first cases of HIV originated. Although scientists and medical scholars have provided plentiful evidence to discount Hooper’s ideas, media attention has sparked conspiracy theories and concerns globally.
Nowhere has this “spark” created a more raging fire, than in Black communities across the globe.
Here in the United States, nothing evokes a mistrust of vaccines, and clinical research more than the “ghost of the Tuskegee experiment”. For several generations, the atrocities of the horrible Syphilis Experiment, carried out by the United States Public Health Service has created a universal disdain and mistrust by Blacks, causing them to be disproportionately underrepresented in clinical research, and in vaccine adherence.
With increasing numbers of Clinical Trials for a Vaccine to prevent and/or treat HIV, the potential for Blacks, worldwide, to once again suffer disproportionately from lack of treatment looms on the horizon.
One of the most recent insights into the potential problem for future issues with HIV Vaccines and Blacks is seen with the human papillomavirus (HPV) vaccine knowledge, and HPV vaccine acceptability. Studies have shown a disparity in parental acceptance of the HPV vaccine with parents of Black adolescent girls being less likely to accept and comply with HPV immunization schedules than Whites.
According to researchers at the University of Texas Southwestern Medical Center, African-American females between the ages of 12 and 17 were 35 percent less likely to receive a healthcare provider recommendation for the HPV vaccine, a disparity that researchers are keeping an eye on in helping to curb the 6 million new HPV infections each year.
African Americans have the most severe burden of HIV of all racial/ethnic groups in the United States. Compared with other races and ethnicities, African Americans account for a higher proportion of HIV infections at all stages of disease—from new infections to deaths. African Americans accounted for an estimated 44% of all new HIV infections among adults and adolescents (aged 13 years or older) in 2010, despite representing only 12% to14% of the US population. In 2010, black gay, bisexual, and other men who have sex with men (MSM) represented an estimated 72% (10,600) of new infections among all black men and 36% of an estimated 29,800 new HIV infections among all MSM. The estimated rate of new HIV infections for black women (38.1/100,000 population) was 20 times as high as the rate for white women, and almost five times as high as that of Latinas.
There is no clinical study that suggests blacks are more likely to develop influenza because of personal health status or geographical location. Yet, African Americans are not getting the flu vaccine for several reasons. Side effect concerns outweigh the benefits. Many are not educated about the benefits of the vaccine or risk factors associated with developing seasonal influenza. The fact that millions of people get the shot safely each year is still not enough persuasion for the majority of African Americans. The actual benefits, unfortunately, are not translating into increased vaccination use among the elderly, particularly elderly African Americans.
Many minorities still don’t feel welcome and respected within the health-care system. Those who do come in have already crossed a threshold of trust, at least with their individual doctor. Those who don’t come in, of course, will typically, never have the opportunity to be asked to enroll in a clinical trial. Instead, the reason it would be inappropriate to focus on changing patient attitudes is because these attitudes of mistrust are based on a history of untrustworthy behavior by the health professions, which must be acknowledged and rectified. In other words, the medical profession should not focus on making minorities become more trusting; it should focus on ensuring that it is becoming trustworthy.
Minority populations have historically and consistently been underrepresented in clinical trials. As a result, important information about how medicines work in minority populations is not always available.
The future of clinical trials on vaccines is to guarantee inclusion with sufficient representation to allow for analysis by sex, ethnicity and other demographics. This will only be achieved when clinical trials are appropriately and carefully designed to address the barriers that exist toward recruitment and retention of women and minorities.
This issue is particularly critical because patients’ responses to medicines can vary by ethnicity, lifestyle, and genetic background. For example, African Americans and Hispanics are 2.2 times and 1.6 times more likely, respectively, to die from diabetes than non-Hispanic whites, yet combined they have historically represented only 15 percent of diabetes clinical trial participants.
Minority populations have historically and consistently been underrepresented in clinical trials. As a result, important information about how medicines work in minority populations is not always available.
More diverse representation in clinical trials is needed to gain insights that will make medicines most effective for all people who use them.