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In 1998, residents of South Boston and then State Senator Stephen Lynch contacted Suzanne K. Condon, Associate Commissioner of the Massachusetts Department of Public Health (MDPH) and Director of the Bureau of Environmental Health (BEH), regarding concerns about a suspected cluster of scleroderma and other autoimmune diseases in that area of the City of Boston. The primary concerns focused on a perceived “cluster” of women who grew up in South Boston diagnosed with either scleroderma or lupus and any potential relationship to historical opportunities for environmental exposures in that area of the city of Boston, MA. Residents expressed concern about a number of historical sources of environmental pollution in the area including the Coastal Oil site, a former power plant, other hazardous waste sites and the proximity of the neighborhood to Logan International Airport.
There were several challenges associated with investigating both the prevalence of these diseases and their possible association with environmental factors. Scleroderma and lupus are both relatively rare and chronic autoimmune diseases for which the causes remain largely unknown. Further, although the American College of Rheumatology developed criteria for diagnosing systemic scleroderma (SSc) and systemic lupus erythematosus (SLE), both diseases display diverse and often overlapping clinical manifestations (Simard and Costenbader 2007). Therefore, the chance for misdiagnosis among patients is increased given their clinical similarities and the fact that both SSc and SLE have many shared symptoms with other autoimmune and connective tissue diseases. At the time that residents of South Boston reported their concerns to the MDPH, Massachusetts did not have a registry or other coordinated reporting system for the surveillance or identification of individuals diagnosed with autoimmune diseases such as SSc or SLE. (Note: At present, MDPH is attempting to conduct statewide surveillance of SLE in response to a legislative directive). Therefore, in order to evaluate whether a cluster of SSc or SLE might exist, it was necessary to first identify individuals from South Boston diagnosed with these diseases, confirm their diagnoses, and evaluate whether the prevalence and/or incidence of SSc and SLE in South Boston was above expected rates.
The MDPH contacted the South Boston Community Health Center (SBCHC) as well as area rheumatologists to obtain an estimate of the number of individuals from that area of the city that were currently being treated for a diagnosis of SSc or SLE. The MDPH also established a community advisory committee (CAC), a group composed of approximately 20 individuals including current and former residents of South Boston, health care providers, legislative representatives and others. MDPH, in partnership with the CAC, conducted community outreach encouraging current and former South Boston residents to contact the MDPH if they had a diagnosis of SSc, SLE or mixed connective tissue disease (MCTD) or if they knew someone who was a current/former resident of South Boston who had any of these diagnoses. Mixed connective tissue disease is considered an "overlap" of three diseases: systemic lupus erythematosus, scleroderma, and polymyositis (a disease that causes inflammation of the muscles). People with MCTD may experience a variety of signs and symptoms associated with these diseases. The outreach was intended to capture reports of both current and former South Boston residents who not only had been diagnosed with SSc and SLE but also those individuals who may have clinical manifestations of these diseases but whose symptoms had not met ACR criteria for a definitive diagnosis of SSc or SLE. In this way, the MDPH could evaluate disease prevalence across the broader spectrum of disease (i.e., mild to severe disease).
Based on the preliminary case finding effort, 12 individuals from South Boston self-reported to the MDPH that they had a diagnosis of SSc and 23 individuals reported a diagnosis of SLE. A number of former South Boston residents also reported either a diagnosis of SSc, SLE or some other connective tissue disease. For a population the size of South Boston (estimated as 30,000 by the 1990 U.S. Census), the number of cases expected would range between 1 and 9 for SSc and between 7 and 12 for SLE. These figures are based on the prevalence estimates reported in various population-based studies published for SSc and SLE at the time that the study was launched (Michet et al. 1985; Maricq et al. 1989; Johnson et al. 1995; Mayes 1996; Silman and Hochberg 1996; Jacobsen et al. 1997; Gourley et al. 1997). The data based on preliminary case finding suggested that the crude prevalence of both SSc and SLE was higher than expected among current South Boston residents (possibly 33%-1100% higher for SSc and 92%-229% for SLE based on the published prevalence estimates). Although the preliminary data suggested an increased prevalence of SSc and SLE in South Boston, these estimates represented only preliminary findings that were based on self-reported and unconfirmed cases of SSc and SLE. Further, it was unknown whether environmental or other common factors might be related to the development of SSc and SLE among residents in South Boston.
II. Background -
South Boston is a peninsula located in the eastern portion of the City of Boston. The South Boston neighborhood is approximately 3.1 square miles in area with a population of approximately 30,000 residents. According to 2004 zoning maps, this area of the city is a mix of residential and industrial properties. The residences are primarily multi-family dwellings with some single family homes that are surrounded by major shipping and industrial properties located along Boston Harbor (Figure 1).
According to U.S. Census data, the population of South Boston declined from approximately 55,000 residents in 1950 to approximately 30,000 in 2000 (Figure 2). During that time, the age distribution of the population remained steady with the majority of the South Boston population under age 35 (Figure 3). While the racial and ethnic distribution has changed somewhat more recently, the large majority of residents are Caucasian. The percentage of white residents has changed from nearly 100% in 1950 to 87% in 2000 (Figure 4). At present, approximately 2-3% of South Boston residents are African American and approximately 7-8% of South Boston residents are Hispanic. In 1950, foreign-born South Boston residents included those of Irish, Lithuanian, Canadian, or Italian descent. Currently, approximately 50% of South Boston residents report being of Irish heritage. Since 1960, the median household income of South Boston has consistently fallen below that of the state median income (Figure 5).
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