Use of the Word "Crisis" in Sickle Cell Disease: The Language of Sickle Cell.

Language matters. The words used to name and describe disease phenomena are a reflection of society. The authors address the use of the word "crisis" in SCD from sociological, historical, medical, and patient perspectives. The term "crisis" became associated with sickle cell disease in the mid-1920s, more than a decade after the first description of the disease had been published. The term had been used for centuries in conjunction with fever and as a signifier of severe pain in certain diseases during the nineteenth century. The application of the term to this new disease in the 1920s resulted from physicians' observations of their patients' urgent situations. Though commonly used by health care providers and patients today, "crisis" may not be the appropriate term for sickle cell patients suffering severe pain, because people endure differing amounts of pain before stating they are "in crisis." The result can be undertreatment of the pain or mistrust between physicians and patients about use of strong (narcotic) pain-relievers. Some patients believe the term is useful in communicating the severity of their pain and the urgency of their need for relief from it, especially when seeking care at hospital emergency departments, while others believe "crisis" does not accurately reflect the severity or seriousness of their situation.

Learning About Sickle Cell: The Patient in Early Sickle Cell Disease Case Reports, 1910-1933.

Case reports of sickle cell disease (SCD) from its discovery in 1910 to 1933 provide glimpses into the disease's impact on patients and families. Attending physicians, trying to understand the pathophysiology of and treatments for this newly recognized disease, reported also on the effect of SCD on patients' ability to attend school, play, and work, the kinds and severity of the pain patients endured, the late onset of puberty and slowed development of secondary sex characteristics, and the ways families dealt with loved ones who had the disease. These anonymous patients and families helped "teach" physicians about SCD in the early years after its discovery. The current study uses information gleaned from the third published article in 1915 to 1933.

Tracking down the first recorded sickle cell patient in Western medicine.

In 1910, the first article describing a case of sickle cell anemia appeared in Archives of Internal Medicine. In 1987, a historian of African American medical history, Todd Savitt, took advantage of an opportunity to research the circumstances behind the publication of that first article and identify the people (patient and physicians) involved. Savitt recounts his "adventures" in tracing the story to its origins in the West Indies.

The Journal of the National Medical Association 100 years ago: a new voice of and for African American physicians.

Volume 1 of the Journal of the National Medical Association (JNMA), published quarterly during 1909, included a good deal of space devoted to 2 key concerns: (1) building and unifying black health professionals in medicine, surgery, dentistry, and pharmacy; and (2) providing a voice for these African American health professionals to the often-hostile and racist larger world of medicine. The Journal's editor, Charles Victor Roman, and associate editor, John A. Kenney, were well suited to the task. They promoted membership in the National Medical Association (NMA), attendance at NMA annual meetings, and cooperation among the health professions. They also used the pages of the JNMA to firmly respond to the negative articles and biased, even hateful, attitudes expressed by white medical and lay people. The JNMA has continued to speak for the black medical profession over the subsequent 100 years.

Creating a segregated medical profession: African American physicians and organized medicine, 1846-1910.

An independent panel of experts, convened by the American Medical Association (AMA) Institute for Ethics, analyzed the roots of the racial divide within American medical organizations. In this, the first of a 2-part report, we describe 2 watershed moments that helped institutionalize the racial divide. The first occurred in the 1870s, when 2 medical societies from Washington, DC, sent rival delegations to the AMA's national meetings: an all-white delegation from a medical society that the US courts and Congress had formally censured for discriminating against black physicians; and an integrated delegation from a medical society led by physicians from Howard University. Through parliamentary maneuvers and variable enforcement of credentialing standards, the integrated delegation was twice excluded from the AMA's meetings, while the all-white society's delegations were admitted. AMA leaders then voted to devolve the power to select delegates to state societies, thereby accepting segregation in constituent societies and forcing African American physicians to create their own, separate organizations. A second watershed involved AMA-promoted educational reforms, including the 1910 Flexner report. Straightforwardly applied, the report's population-based criterion for determining the need for phySicians would have recommended increased training of African American physicians to serve the approximately 9 million African Americans in the segregated south. Instead, the report recommended closing all but 2 African American medical schools, helping to cement in place an African American educational system that was separate, unequal, and destined to be insufficient to the needs of African Americans nationwide.

Segregation, civil rights, and health disparities: the legacy of African American physicians and organized medicine, 1910-1968.

Between 1910 and 1968, the National Medical Association (NMA) repeatedly clashed with the American Medical Association (AMA) over the latter organization's racial bars to membership and other health policy issues. The NMA, founded in 1895 as a nonexclusionary medical society to provide a voice for disenfranchised black physicians and patients, struggled in its early years, during which AMA leadership took scant notice of it. But skirmishes ensued over such actions as stigmatizing racial labels in the AMA's American Medical Directory, which, beginning in 1906, listed all U.S. physicians but designated African Americans with the notation col. The NMA also repeatedly asked the AMA to take action against overt racial bars on blacks' membership in its constituent state and county societies. During the civil rights era, African American physicians received no AMA support in seeking legal remedies to hospital segregation. And the NMA and AMA found themselves opposed on other policy issues, including Medicaid and Medicare. These differences eventually catalyzed a series of direct confrontations. The 1965 AMA meeting in New York City, for example, was protested by about 200 NMA-led picketers. The NMA's quest for racial equality in medicine was supported by some other medical organizations, such as the Medical Committee for Human Rights. In 1966, the AMA House voted to amend the AMA Constitution and Bylaws, giving its Judicial Council (now the Council on Ethical and Judicial Affairs) the authority to investigate allegations of discrimination. This paved the way for a subsequent era of increasing cooperation and understanding.

African American physicians and organized medicine, 1846-1968: origins of a racial divide.

Like the nation as a whole, organized medicine in the United States carries a legacy of racial bias and segregation that should be understood and acknowledged. For more than 100 years, many state and local medical societies openly discriminated against black physicians, barring them from membership and from professional support and advancement. The American Medical Association was early and persistent in countenancing this racial segregation. Several key historical episodes demonstrate that many of the decisions and practices that established and maintained medical professional segregation were challenged by black and white physicians, both within and outside organized medicine. The effects of this history have been far reaching for the medical profession and, in particular, the legacy of segregation, bias, and exclusion continues to adversely affect African American physicians and the patients they serve.