scholarly journals Prevalence of fibrodysplasia ossificans progressiva (FOP) in the United States: estimate from three treatment centers and a patient organization

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Robert J. Pignolo ◽  
Edward C. Hsiao ◽  
Genevieve Baujat ◽  
David Lapidus ◽  
Adam Sherman ◽  
...  
Keyword(s):  
United States ◽  
Survival Rate ◽  
San Francisco ◽  
Survival Curve ◽  
The United States ◽  
Fibrodysplasia Ossificans Progressiva ◽  
Rate Estimate ◽  
Kaplan Meier ◽  
The Us ◽  
Meier Survival Curve

Abstract Background Fibrodysplasia ossificans progressiva (FOP), an ultra-rare, progressive, and permanently disabling disorder of extraskeletal ossification, is characterized by episodic and painful flare-ups and irreversible heterotopic ossification in muscles, tendons, and ligaments. Prevalence estimates have been hindered by the rarity of FOP and the heterogeneity of disease presentation. This study aimed to provide a baseline prevalence of FOP in the United States, based on contact with one of 3 leading treatment centers for FOP (University of Pennsylvania, Mayo Clinic, or University of California San Francisco), the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) membership list, or the IFOPA FOP Registry through July 22, 2020. Results Patient records were reviewed, collected, and deduplicated using first and last name initials, sex, state, and year of birth. A Kaplan–Meier survival curve was applied to each individual patient to estimate the probability that he or she was still alive, and a probability-weighted net prevalence estimate was calculated. After deduplication, 373 unique patients were identified in the United States, 294 of whom who were not listed as deceased in any list. The average time since last contact for 284 patients was 1.5 years. Based on the application of the survival probability, it is estimated that 279 of these patients were alive on the prevalence date (22 July 2020). An adjusted prevalence of 0.88 per million US residents was calculated using either an average survival rate estimate of 98.4% or a conservative survival rate estimate of 92.3% (based on the Kaplan–Meier survival curve from a previous study) and the US Census 2020 estimate of 329,992,681 on prevalence day. Conclusions This study suggests that the prevalence of FOP is higher than the often-cited value of 0.5 per million. Even so, because inclusion in this study was contingent upon treatment by the authors, IFOPA membership with confirmed clinical diagnosis, and the FOP Registry, the prevalence of FOP in the US may be higher than that identified here. Thus, it is imperative that efforts be made to identify and provide expert care for patients with this ultra-rare, significantly debilitating disease.

scholarly journals The case for Pacific media reform to reflect island communities

2005 ◽  
Vol 11 (1) ◽  
pp. 26-35
Author(s):  
Kalafi Moala
Keyword(s):  
United States ◽  
San Francisco ◽  
San Francisco Bay ◽  
San Francisco Bay Area ◽  
The United States ◽  
Daily News ◽  
Bay Area ◽  
The Us ◽  
Island Communities ◽  
The Media

"The largest number of Tongans outside of Tonga lives in the United States. It is estimated to be more than 70,000; most live in the San Francisco Bay Area. On several occasions during two visits to the US by my wife and I during 2004, we met workers who operate the only daily Tongan language radio programmes in San Francisco. Our organisation supplies the daily news broadcast for their programmes. Our newspapers— in the Tongan and Samoan languages— also sell in the area. The question of what are the fundamental roles of the media came up in one of our discussions..."

scholarly journals Perceived Neighborhood-level Drivers of Food Insecurity Among Aging Women in the United States (P04-155-19)

2019 ◽  
Vol 3 (Supplement_1) ◽  
Author(s):  
Jacqueline Shieh ◽  
Sheri Weiser ◽  
Henry Whittle ◽  
Ighovwerha Ofotokun ◽  
Adaora Adimora ◽  
...  
Keyword(s):  
United States ◽  
Chronic Illness ◽  
Food Insecurity ◽  
San Francisco ◽  
The United States ◽  
Food Stores ◽  
Chapel Hill ◽  
Aging Women ◽  
The Us ◽  
Neighborhood Level

Abstract Objectives Aging populations in the United States (US) exhibit high rates of both food insecurity and chronic illness. Few studies have explored in depth how food insecurity arises among such populations, and how it interacts with experiences of aging. We qualitatively explored how aging, low-income women experience food insecurity at multiple sites across the US, focusing on the neighborhood-level factors that influence these experiences. Methods Study participants were drawn from the San Francisco, CA, Atlanta, GA, and Chapel Hill, NC sites of the Women's Interagency HIV Study (WIHS), a cohort study of women with or at risk for HIV. Using purposive sampling, we recruited 38 women who were food-insecure, 50 years of age or older, either with or at risk for HIV, and from different neighborhoods within each site. Semi-structured interviews explored participants’ perceptions of how their neighborhood influenced their experiences with food security and aging. An inductive-deductive approach was used to thematically analyze the data. Results Participants across the three sites explained that food insecurity was related to limited access to food stores. In San Francisco, this limited access primarily resulted from high food prices, whereas in Atlanta and Chapel Hill long distances to food stores and poor public transport systems were prominent. Most participants also described being dependent on food aid programs, but often found this difficult due to poor quality food and long wait times. Aging-related issues emerged as a cross-cutting theme. Both HIV + and HIV- women explained how fatigue, poor strength, and joint pains all amplified their barriers to accessing food. Women with chronic illness, regardless of HIV status, also found it difficult to afford healthy and nutritious food, which in turn further aggravated their poor health. Conclusions Findings from this study suggest that older women across different settings in the US experience multiple barriers to navigating the food system, with key similarities and differences in barriers and systems of institutional support. While future programs should address common neighborhood-level barriers such as the availability and affordability of healthy foods and transportation, they should also be tailored to aging women, and to the unique local context. Funding Sources NIAID.

scholarly journals The contribution of marine organics to the air quality of the western United States

2010 ◽  
Vol 10 (15) ◽  
pp. 7415-7423 ◽  
Author(s):  
B. Gantt ◽  
N. Meskhidze ◽  
A. G. Carlton
Keyword(s):  
United States ◽  
Air Quality ◽  
San Francisco ◽  
Atmospheric Chemistry ◽  
Environmental Protection Agency ◽  
Regional Scale ◽  
The United States ◽  
Coastal Areas ◽  
Western United States ◽  
The Us

Abstract. The contribution of marine organic emissions to the air quality in coastal areas of the western United States is studied using the latest version of the US Environmental Protection Agency (EPA) regional-scale Community Multiscale Air Quality (CMAQv4.7) modeling system. Emissions of marine isoprene, monoterpenes, and primary organic matter (POM) from the ocean are implemented into the model to provide a comprehensive view of the connection between ocean biology and atmospheric chemistry and air pollution. Model simulations show that marine organics can increase the concentration of PM2.5 by 0.1–0.3 μg m−3 (up to 5%) in some coastal cities such as San Francisco, CA. This increase in the PM2.5 concentration is primarily attributed to the POM emissions, with small contributions from the marine isoprene and monoterpenes. When marine organic emissions are included, organic carbon (OC) concentrations over the remote ocean are increased by up to 50% (25% in coastal areas), values consistent with recent observational findings. This study is the first to quantify the air quality impacts from marine POM and monoterpenes for the United States, and it highlights the need for inclusion of marine organic emissions in air quality models.

scholarly journals Continued emissions of carbon tetrachloride from the United States nearly two decades after its phaseout for dispersive uses

2016 ◽  
Vol 113 (11) ◽  
pp. 2880-2885 ◽  
Author(s):  
Lei Hu ◽  
Stephen A. Montzka ◽  
Ben R. Miller ◽  
Arlyn E. Andrews ◽  
John B. Miller ◽  
...  
Keyword(s):  
United States ◽  
Carbon Tetrachloride ◽  
San Francisco ◽  
Environmental Protection Agency ◽  
Gulf Coast ◽  
The United States ◽  
Bay Area ◽  
The Us ◽  
Atmospheric Observations ◽  
Surrounding Areas

National-scale emissions of carbon tetrachloride (CCl4) are derived based on inverse modeling of atmospheric observations at multiple sites across the United States from the National Oceanic and Atmospheric Administration’s flask air sampling network. We estimate an annual average US emission of 4.0 (2.0–6.5) Gg CCl4 y−1 during 2008–2012, which is almost two orders of magnitude larger than reported to the US Environmental Protection Agency (EPA) Toxics Release Inventory (TRI) (mean of 0.06 Gg y−1) but only 8% (3–22%) of global CCl4 emissions during these years. Emissive regions identified by the observations and consistently shown in all inversion results include the Gulf Coast states, the San Francisco Bay Area in California, and the Denver area in Colorado. Both the observation-derived emissions and the US EPA TRI identified Texas and Louisiana as the largest contributors, accounting for one- to two-thirds of the US national total CCl4 emission during 2008–2012. These results are qualitatively consistent with multiple aircraft and ship surveys conducted in earlier years, which suggested significant enhancements in atmospheric mole fractions measured near Houston and surrounding areas. Furthermore, the emission distribution derived for CCl4 throughout the United States is more consistent with the distribution of industrial activities included in the TRI than with the distribution of other potential CCl4 sources such as uncapped landfills or activities related to population density (e.g., use of chlorine-containing bleach).

Harry Bridges’s Australia, Australia’s Harry Bridges

2018 ◽  
Author(s):  
Robert Cherny
Keyword(s):  
United States ◽  
San Francisco ◽  
Working Conditions ◽  
Business Groups ◽  
The United States ◽  
Similar Process ◽  
Early Experiences ◽  
The Press ◽  
The Us ◽  
The Cold War

Harry Bridges, longtime leader of the International Longshore and Warehouse Union (ILWU, representing Pacific Coast workers), was born in Australia in 1901 and came to the United States in 1920. Bridges brought Australian concepts of labor and politics to the docks of San Francisco in the early 1930s and injected Australian examples into his discussions of US working conditions and politics thereafter. When faced in 1939-1955 with deportation for being a Communist, he always attributed his political outlook to his early experiences in Australia. Bridges was frequently demonized in the US press, and a similar process occurred in Australia as the press there drew upon the US press in presenting Bridges. Just as business groups and conservatives in the United States saw Bridges as a dangerous radical, so too did conservative Australian politicians let their fear of Bridges carry them into a Quixotic campaign to prevent him from sneaking into their country. However, the Australian dockworkers’ union, the Waterfront Workers’ Federation, looked to Bridges and the ILWU as inspiration and exemplar, and Bridges and the ILWU worked closely with their counterparts in Australia. With the thaw in the Cold War aecline in anticommunist rhetoric in both nations, Bridges could be celebrated in both places as a “labor statesman.”

scholarly journals Ultrafine Particulate Matter Source Contributions across the Continental United States

2018 ◽  
Author(s):  
Melissa A. Venecek ◽  
Xin Yu ◽  
Michael J. Kleeman
Keyword(s):  
United States ◽  
Particulate Matter ◽  
Los Angeles ◽  
San Francisco ◽  
The United States ◽  
Biomass Combustion ◽  
Spatial Gradients ◽  
The Us ◽  
Ultrafine Particulate Matter ◽  
Pollution Episodes

Abstract. The regional concentration of airborne ultrafine particulate matter mass (Dp < 0.1 µm; PM0.1) was predicted with 4 km resolution in 39 cities across the United States during summer time air pollution episodes. Calculations were performed using a regional chemical transport model with 4 km spatial resolution operating on the National Emissions Inventory created by the US EPA. Measured source profiles for particle size and composition between 0.01–10 µm were used to translate PM total mass to PM0.1. PM0.1 concentrations exceeded 2 µg m-3 during summer pollution episodes in major urban regions across the US including Los Angeles, the San Francisco Bay Area, Houston, Miami, and New York. PM0.1 spatial gradients were sharper than PM2.5 spatial gradients due to the dominance of primary aerosol in PM0.1. Artificial source tags were used to track contributions to primary PM0.1 and PM2.5 from fifteen source categories. As expected, on-road gasoline and diesel vehicles made significant contributions to regional PM0.1 in all 39 cities even though peak contributions within 0.3 km of the roadway were not resolved by the 4 km grid cells. Food cooking also made significant contributions to PM0.1 in all cities but biomass combustion was only important in locations impacted by summer wildfires. Aviation was a significant source of PM0.1 in cities that had airports within their urban footprints. Industrial sources including cement manufacturing, process heating, steel foundries, and paper &amp; pulp processing impacted their immediate vicinity but did not significantly contribute to PM0.1 concentrations in any of the target 39 cities. Natural gas combustion made significant contributions to PM0.1 concentrations due to the widespread use of this fuel for electricity generation, industrial applications, residential, and commercial use. The major sources of primary PM0.1 and PM2.5 were notably different in many cities. Future epidemiological studies may be able to differentiate PM0.1 and PM2.5 health effects by contrasting cities with different ratios of PM0.1 / PM2.5. In the current study, cities with higher PM0.1 / PM2.5 ratios include Houston TX, Los Angeles CA, Birmingham AL, Charlotte NC, and Bakersfield CA. Cities with lower PM0.1 to PM2.5 ratios include Lake Charles LA, Baton Rouge LA, St. Louis MO, Baltimore MD, and Washington DC.

scholarly journals Becoming Australian? Two different approaches to health care reform in the United States

2009 ◽  
Vol 33 (2) ◽  
pp. 303
Author(s):  
Jessica K Roydhouse
Keyword(s):  
United States ◽  
Health Care ◽  
Health Care Reform ◽  
San Francisco ◽  
Private Insurance ◽  
The United States ◽  
The State ◽  
Short Paper ◽  
Australian Health ◽  
The Us

THE ?SUBSTANTIAL PRIVATE SECTOR?1 ROLE in Australian health care has sometimes given rise to fears of ?Americanisation? of the Australian health care system, particularly in the media. For example, in 2000 Kenneth Davidson wrote, ?The USstyle health financing route being taken by the Howard Government is mad and bad.?2 The US system is the ?leading example? of ?inferior system performance?3 and is often viewed as a system to be feared and avoided. Despite spending far more per capita than any other country on health care, the United States nonetheless fails to provide equitable health care for everyone. The system is ?a paradox of excess and deprivation?,4 spending far more than other systems without providing adequate care and treatment for all. Although the US system is seen as frightening in Australia, broad historical and political similarities such as the ?strong?5 role and ?long history?5 of private insurance and powerful, vocal physicians? groups1,5 make the Australian experience a useful comparative one for US policymakers. As Altman and Jackson note, the US system will probably not develop into a fully public system, but a system combining private and public aspects along the lines of the Australian model is possible.5 Furthermore, while politicians in the US at the state and local levels have attempted to address the issue of universal or near-universal coverage for some time, previous efforts sought to expand coverage using existing programs instead of establishing a new system.6 More recently, the state of Massachusetts and the county (municipality) of San Francisco have introduced near-universal health care programs. Although introduced nearly simultaneously, their development processes and structures differ. In addition, the Massachusetts plan in particular was viewed as a potential model for future sub-national and possibly national health reforms. Thus, this short paper examines the two plans as two different approaches to health care reform in the US and compares them to the Australian system, asking the question whether or not current reform efforts in the US make the system more like that in Australia, or are likely to do so in the future.

María Amparo Ruiz de Burton

2019 ◽  
Author(s):  
Alicia Contreras
Keyword(s):  
United States ◽  
Civil War ◽  
American Literature ◽  
San Francisco ◽  
Rhode Island ◽  
Literary History ◽  
Mexican Americans ◽  
The United States ◽  
La Mancha ◽  
The Us

María Amparo Ruiz de Burton (b. 1832–d. 1895) was a Mexican-born woman who experienced the processes of Manifest Destiny and Reconstruction firsthand. At the end of the US-Mexico War (1848), Ruiz de Burton and her mother left their native Baja California for Monterey, Alta California to reap the promised rewards of US citizenship. A descendant and friend of elite, landed, and politically prominent Mexicans and Californios, she technically married the enemy, Captain Henry S. Burton, a member of the US Army during the US-Mexico War who would go on to fight for the Union during the Civil War. This marriage enabled Ruiz de Burton to cross vast geographic and cultural terrains; within the span of a decade, she left California and interacted with both Republicans and Democrats in Rhode Island, New York, Washington, Delaware, and Virginia. Her movement in social circles that included such political figures as Mariano Guadalupe Vallejo, Abraham Lincoln, and Jefferson Davis granted her a unique perspective of US-Mexico relations and what would soon become, with westward expansion and the transcontinental railroad, the socioeconomic displacement of her fellow Californios. An intelligent woman with a flair for writing and expressing political opinions, she was the first Mexican to publish fiction in English in the United States: her debut novel Who Would Have Thought It? (1872) was published anonymously by J.B. Lippincott & Co. of Philadelphia; her play Don Quixote de la Mancha: A Comedy in Five Acts, Taken from Cervantes’ Novel of That Same Name (1876) was published by Carmany of San Francisco; and her second and final novel The Squatter and the Don (1885) was published under the pseudonym of C. Loyal by Samuel Carson & Co. of San Francisco. Since their republications as part of the Recovering the U.S. Hispanic Literary Heritage Project in the 1990s, the two novels have helped scholars mend a once-perceivable fissure in 19th-century literary history. They have also enhanced scholars’ understandings of Chicana/o and Mexican American literature; US women’s literature; and US domestic, sentimental, and realist literature. The work offers an idiosyncratic historical outlook that is practically matchless. Ruiz de Burton experienced four major wars that radically altered the lives of Mexicans and Mexican Americans—the Texas War of Independence, the US-Mexico War, the US Civil War, and the French Intervention in Mexico. Her fictional writings and posthumously published letters document the subsequent and fateful transformation of the United States and Mexico.

The United States and the Iranian Nuclear Programme

2018 ◽  
Author(s):  
Steven Hurst
Keyword(s):  
United States ◽  
Decision Making ◽  
Domestic Politics ◽  
The United States ◽  
Nixon Administration ◽  
Comprehensive Plan ◽  
The Us ◽  
Nuclear Issue ◽  
The Relationship

The United States, Iran and the Bomb provides the first comprehensive analysis of the US-Iranian nuclear relationship from its origins through to the signing of the Joint Comprehensive Plan of Action (JCPOA) in 2015. Starting with the Nixon administration in the 1970s, it analyses the policies of successive US administrations toward the Iranian nuclear programme. Emphasizing the centrality of domestic politics to decision-making on both sides, it offers both an explanation of the evolution of the relationship and a critique of successive US administrations' efforts to halt the Iranian nuclear programme, with neither coercive measures nor inducements effectively applied. The book further argues that factional politics inside Iran played a crucial role in Iranian nuclear decision-making and that American policy tended to reinforce the position of Iranian hardliners and undermine that of those who were prepared to compromise on the nuclear issue. In the final chapter it demonstrates how President Obama's alterations to American strategy, accompanied by shifts in Iranian domestic politics, finally brought about the signing of the JCPOA in 2015.

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