Mohammed Moinuddin, MD
The Great Depression of 1930s which caused severe economic and social stress in the United States precipitated racism as a result of polarization between the White population and the African Americans. This resulted in massive unemployment, poverty, diseases and political unrest. The racial polarization surfaced out and the racial tension escalated. Crimes and violence increased exponentially. The politicians were trying hard to bring down the racial tension which continued through the 1930s. Frederick Keppel, president of Carnegie Corporation in New York invited Gunnar Myrdal, professor of Sociology at the University of Stockholm, Sweden to come to USA, study the problem of friction between the Blacks and Whites and submit a report. Myrdal arrived in NY in 1938, travelled all over the country, talked to several communities and their leaders, interviewed people in responsible positions and submitted the report. He also published his book, “American Dilemma”, approximately 1400 pages, which became a well known reference on racism in USA. In 1974,Myrdal received Nobel prize in Sociology ( his Mexican wife likewise was also awarded Nobel prize for peace in 1982- a unique distinction to remarkable couple). In his book, Myrdal wrote, “Area for area, class for class, negroes cannot get the same advantage in the way of prevention and care of disease that Whites can. Discrimination increases negro sickness and death both directly and indirectly, and manifests itself, both consciously and subconsciously.”
For the first time, people became aware of the differences in health care between the Whites and the Blacks. The Civil Rights Act of 1964 (title VI) further raised consciousness among health care workers as a result of which articles started coming into the medical literature. Gradually,the number of such articles describing the racial disparities increased to the point that in the decades of 1980s and 1990s, more than 200 articles were published in the medical journals on the subject of heart disease alone. The Congress of the United States took notice of it. To understand the issue clearly, in 1999, they requested the Institute of Medicine (IOM, currently known as National Academy of Medicine) to research the subject. The Congress specifically asked the IOM to:
- Assess the differences in health care that are not otherwise attributed to known factors (Socioeconomic and cultural differences etc.)
- Evaluate the potential sources of bias, discrimination and stereotyping at each level — bet it individual or institutional
- Provide recommendation as how to intervene and eliminate disparities.
The IOM took this task and appointed a commission consisting of 15 members from different walks of life – physicians, lawyers, nurses, psychologists, sociologists, scientists, health administrators and economists. These members worked for three years, reviewing the data from medical literature, interviewing the authors of these articles for validity of their observations, travelled through the country talking to the community/organization leaders and conducted several workshops. This report was then reviewed by another panel of 11 experts. Finally, the report was overseen by two experts chosen by IOM. The report was subsequently published in the form of a book entitled, “Unequal Treatment—confronting racial and ethnic disparities in health care.” Hence this report has undergone rigorous scrutiny. The following text summarizes the findings of IOM Commission.
Heart disease is the number one cause of death in the United States and therefore has the most amount of data in health care disparities. The Commission found that African Americans are less likely to undergo cardiac catheterization (an invasive procedure considered Gold Standard in diagnosing Coronary Artery Disease) compared with Whites when the disease is clinically suspected.If they do undergo Catheterization, they are less likely to receive revascularizng procedures such as angioplasty, stenting and atherectomy; drugs such as beta blockers( commonly used for angina) or thrombolytic therapy ( clot dissolving medication) and Aspirin( used for prophylaxis). A meta-analysis of 25 studies showed that the difference in treatments was not only due to known factors such as disease prevalence, access to cardiologists, variation in clinical presentation, EKG findings, size of lesion or insurance, but due to bias and discrimination also. In the same year, 2000, two more studies were published in New England Journal of Medicine and Social Science and Medicine that identified bias, discrimination and stereotyping as the causes of health care disparities in addition to known factors. At the Cleveland VA Hospital, they studied 938 patients for cardiac catheterization between 1993-1995. The Cardiology fellows would present the patient data in patient`s absence to a panel of cardiologists and heart surgeons. Race was not specified When the staff physicians were blinded to the race of the patients, no difference was found between the Blacks and Whites with reference to the incidence of catheterization This an impressive study emphasizing the role of race in clinical decision making.
The incidence of end stage kidney disease and diabetes is higher among the Blacks and Native Americans. Despite this, they are less likely to receive kidney transplant or less likely to be put on waiting list. When they are enrolled in the waiting list, the waiting period is longer than the Whites. In one Dialysis Center, where 67% of the patients were Black, 64% of those who received kidney transplant were Whites. Within the first year of dialysis in a national sample, 30% of whites and 13.5% of Blacks were placed on transplant list. The reasons for such a disparity included patient preferences, biologic factors such as immunologic problems, disease severity and bias. It was concluded that relatively less time was spent in explaining to the Blacks about kidney transplantation.
AIDS and HIV:
Prophylactic treatment and bronchoscopy (a diagnostic test that visualizes the airways and lung through a tube) were less available to the Blacks than Whites. Among gays and bisexual men, Whites were 60% more likely to get anti retroviral drug, AZT.
An interesting statistic is quoted in this disease that 27 % of college educated Blacks believed that HIV/AIDS is a man made virus that the Federal government made to kill and wipe out the Black people.
Cancer is a complex multifactorial disease and therefore less frequently mentioned as a cause of racial bias. Biologic factors, cultural beliefs and socioeconomic reasons are often mentioned as the cause of racial disparities. However, there is still a soft data to indicate that discrimination may also account for disparities. For example, older Black women were consistently less likely to undergo mammograms. In colorectal cancer, Blacks were less aggressively treated. There was lower incidence of sigmoidoscopies among Blacks. Blacks were less likely to undergo for lung surgery for lung cancer after controlling for age, gender, stage disease, comorbidity and income.
Recommendations of IOM:
Based on their research, the IOM recommended the following treatment:
- Increase awareness among health care workers and general public about the causes of racial disparities
- Defragmentation of insurance plans ie to have one uniform plan for all people so that everybody is treated
- Increase the number of minorities in health care system.
- Cross-cultural education- teaching health care providers the cultural differences in peoples of different ethnicities, religion and culture.
- Increase the number of interpreters so that there is accurate communication between the non English speaking patients and health care workers.
- More research is needed to get more data on the causes of disparities and how to intervene.
The IOM meticulously approached the subject and went through methodically through this subject. The committee included experts from diverse specialties who had no self interest or any political agenda. After thorough review of the literature, they found robust evidence that in addition to known causes of racial disparities in health care, bias, discrimination and prejudice also play a significant role that contribute to the mortality and morbidity among the minorities. They found also that bias may be conscious or unconscious,institutional or individual, overt or occult but often it is subconscious and subtle. They also found that bias is difficult to diagnose or quantify. Often there is denial among the health care workers.
It is interesting to note that some Blacks think AIDS has been created to wipe away the Black race. This raises the problem of bias on both sides of the fence. To understand why people indulge in such biases, it is important to know the perception that leads to such misconceptions. Sometimes, bias may be a response to another bias that might have been inflicted on them. Therefore, it is appropriate to discuss the Tuskegee Syphilis Study and the circumstances surrounding it. In 1932, the United States Public Health Service (USPHS) embarked upon a study to determine the natural history of untreated Syphilis. They chose Macon county in Alabama as the site for research because the county inhabited at that time a very high concentration of indigent people suffering from syphilis. One hundred and ninety nine such patients were recruited into the study along with 201 normal controls. The Study continued for 40 years until a journalist by name Jean Hiller, from NY Times visited the area in 1972, interviewed the people involved in research in the study and reported on the front page of July 26,1972 NY Times. Some of her remarks that were published in the paper read:
“ Syphylis victims in the United States study went untreated for 40 years- the longest non therapeutic experiment on human beings in medical history.” This study had come to symbolize racism in medicine, ethical misconduct in human research and government abuse of vulnerable people. When the US govt learnt about the study, it issued the orders to the USPHS to stop the study. By that time, 128 patients died, 40 wives were infected and 19 children contracted the disease. The Legacy Committee launched $10 billion suit against the USPHS, but out of court settlement was reached at $2 millions. Blacks asked for public apology. This was denied until in 1997, President Clinton invited the survivors of Tuskegee to the White House and offered a public apology. He said : “what was done cannot be undone, but we can end the silence. We can look at you in the eye and finally say, on behalf of the American people, what the United States Govt did was shameful and I am sorry. Today all we can do is apologize but you have the power to forgive. Your presence here show us that you have shown a better path than your government did so long ago. You have not withheld the power to forgive. I hope today and tomorrow every American will remember your lesson and live by it.”
Tuskegee Syphilis Study is considered as the darkest chapter in the history of medicine in the United States. It has caused deep psychological scars among the black Americans and led to the commonly held belief that government invented AIDS to wipe them out. The refusal of certain blacks to take Flu vaccine is also a reflection of bias.because of their deep suspicion of the system. Bias begets bias! However, the problems are not inevitable. This cycle of bias-mistrust-bias needs to be broken. The strength in the system is its flexibility. There has been meaningful progress towards equality. The first clause of the Constitution of United States in 1780s said that the blacks were 3/5th of a person. This was amended in 1867, and blacks were given the right to vote. The gap between the screening mamograms in 1990s among the blacks and white people were corrected and now it is equal. These changes occurred because of education and realization of the inequalities. But still there is lot of work to be done. The overall mortality rates among the blacks was 60% higher than White people in 1950 and it was the same in 1995. The health care in heart disease and other diseases among the blacks lag behind that of white people. The minorities are prescribed fewer analgesics (pain killers) when they suffer with pain due to fracture of bones compared with whites.
As the IOM report recommends, there are several steps that can be taken to remedy this problem. The first and the most important is to increase the awareness in the public. Not only the physicians but the other health care workers and general public should be educated about the disparities in health care. Education is repeatedly emphasized as the most powerful means to achieve balance in health care delivery to different races.
The subject of racial disparities in health care is a sensitive one. IOM has done an excellent job in researching the subject and their book, Unequal treatment is a landmark document. This has raised the consciousness of several organizations such as the American Medical Association (AMA), National Institute of Health (NIH), American College of Physicians (ACP), Robert Wood Johnson Foundation, American Heart Association (AHA) and several others. All these organizations are working towards eliminating racial disparities in health care and restoring equality and equity in the system that will enable the individuals of all races to enjoy justice in this country that we are proud of.