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financial help for sickle cell patients: Management and Therapy of Sickle Cell Disease Clarice D. Reid, Samuel Charache, Bertram H. Lubin, 1997-02 Serves as a guide for the health care worker involved in the management of patients with sickle cell disease. Represents a collective summary of experiences with therapeutic regimens rather than the by-product of controlled clinical trials. Referred to as the Bible or cookbook. Covers: child, adolescent and adult health care maint.; patient care coord.; psychosocial mgmt.; newborn screening; infection; painful events; lung; stroke; transfusion; eye; contraception and pregnancy; prenatal diagnosis; gallbladder& liver; leg ulcers; bones and joints; etc. |
financial help for sickle cell patients: Sickle Cell Pain Samir K. Ballas, 2015-06-01 Sickle Cell Pain is a panoramic, in-depth exploration of every scientific, human, and social dimension of this cruel disease. This comprehensive, definitive work is unique in that it is the only book devoted to sickle cell pain, as opposed to general aspects of the disease. The 752-page book links sickle cell pain to basic, clinical, and translational research, addressing various aspects of sickle pain from molecular biology to the psychosocial aspects of the disease. Supplemented with patient narratives, case studies, and visual art, Sickle Cell Pain’s scientific rigor extends through its discussion of analgesic pharmacology, including abuse-deterrent formulations. The book also addresses in great detail inequities in access to care, stereotyping and stigmatization of patients, the implications of rapidly evolving models of care, and recent legislation and litigation and their consequences. |
financial help for sickle cell patients: Assessing Genetic Risks Institute of Medicine, Committee on Assessing Genetic Risks, 1994-01-01 Raising hopes for disease treatment and prevention, but also the specter of discrimination and designer genes, genetic testing is potentially one of the most socially explosive developments of our time. This book presents a current assessment of this rapidly evolving field, offering principles for actions and research and recommendations on key issues in genetic testing and screening. Advantages of early genetic knowledge are balanced with issues associated with such knowledge: availability of treatment, privacy and discrimination, personal decision-making, public health objectives, cost, and more. Among the important issues covered: Quality control in genetic testing. Appropriate roles for public agencies, private health practitioners, and laboratories. Value-neutral education and counseling for persons considering testing. Use of test results in insurance, employment, and other settings. |
financial help for sickle cell patients: Evidence-Based Management of Sickle Cell Disease M D George R Buchanan, M D M P H Araba N Afenyi-Annan, M D Samir K Ballas, 2014-09-09 Sickle cell disease can be severe and disabling. When properly treated, patients live longer and with better quality life. This is a US government publication intended to provide evidence-based guidelines for the care of these patients for the use of all concerned providers as well as patients and family members. This book is available in print here for convenience. |
financial help for sickle cell patients: A Parent's Guide to Managing Sickle Cell Disease Lola Oni, Joan Walters (College teacher), David Rees, Olu Wilkey, 2021 |
financial help for sickle cell patients: Medicaid Data United States. Medicaid Bureau. Division of Analysis and Evaluation, 1977 |
financial help for sickle cell patients: In the Blood Melbourne Tapper, 1999-02-04 Although it strikes individuals from a variety of backgrounds, sickle cell anemia has always been known as a black disease in America. In the Blood argues that ever since the discovery in 1910 and subsequent scientific analysis of the disease, sickle cell anemia has been manipulated to serve social ends-as a tool for securing white identity and a way to establish a hierarchy based on European heritage. Tapper shows how sickle cell anemia was used to promote the superiority of racial purity, to characterize the black body as contaminated, and even to support the notion that modern humans evolved from multiple origins. |
financial help for sickle cell patients: The Immortal Life of Henrietta Lacks Rebecca Skloot, 2010-02-02 #1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences. |
financial help for sickle cell patients: Living with Sickle Cell Disease Judy Gray Johnson, Jr. Williams, 2012-05-01 Judy Gray was four when the pain first struck. As mysterious as it was excruciating, Judy's anguish confounded the local doctor, who advised her mother to apply liniment. It was not until Judy was a teenager that another doctor informed her aunt of the real cause of Judy's agony - something called sickle cell anemia. The social mores of that time, however, dictated that adults discussed nothing of substance with children. So Judy learned little about her ailment other than it could cause her to die. A frightened Judy simply put sickle cell disease out of her mind and suffered in silence as she went on with her life. Readers will follow Judy's journey through college, a teaching career, a short-lived marriage, and the raising of a daughter while enduring severe pain episodes. All the while, exhaustion was her constant companion. Living with Sickle Cell Disease: The Struggle to Survive is a story of Judy Gray Johnson's perseverance in the face of living with a little-understood chronic illness. |
financial help for sickle cell patients: Inherited Hemoglobin Disorders Anjana Munshi, 2015-11-11 The book, Inherited Hemoglobin Disorders, describes the genetic defects of hemoglobins, disease complications, and therapeutic strategies. This book has two distinct sections. The first theme includes seven chapters devoted to the types of hemoglobinopathies, mutation spectrum, diagnostic methods, and disease complications, and the second theme includes three chapters focusing on various treatment strategies. The content of the chapters presented in the book is guided by the knowledge and experience of the contributing authors. This book serves as an important resource and review to the researchers in the field of hemoglobinopathies. |
financial help for sickle cell patients: Rare Diseases and Orphan Products Institute of Medicine, Board on Health Sciences Policy, Committee on Accelerating Rare Diseases Research and Orphan Product Development, 2011-04-03 Rare diseases collectively affect millions of Americans of all ages, but developing drugs and medical devices to prevent, diagnose, and treat these conditions is challenging. The Institute of Medicine (IOM) recommends implementing an integrated national strategy to promote rare diseases research and product development. |
financial help for sickle cell patients: Crossing the Global Quality Chasm National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, Board on Health Care Services, Board on Global Health, Committee on Improving the Quality of Health Care Globally, 2019-01-27 In 2015, building on the advances of the Millennium Development Goals, the United Nations adopted Sustainable Development Goals that include an explicit commitment to achieve universal health coverage by 2030. However, enormous gaps remain between what is achievable in human health and where global health stands today, and progress has been both incomplete and unevenly distributed. In order to meet this goal, a deliberate and comprehensive effort is needed to improve the quality of health care services globally. Crossing the Global Quality Chasm: Improving Health Care Worldwide focuses on one particular shortfall in health care affecting global populations: defects in the quality of care. This study reviews the available evidence on the quality of care worldwide and makes recommendations to improve health care quality globally while expanding access to preventive and therapeutic services, with a focus in low-resource areas. Crossing the Global Quality Chasm emphasizes the organization and delivery of safe and effective care at the patient/provider interface. This study explores issues of access to services and commodities, effectiveness, safety, efficiency, and equity. Focusing on front line service delivery that can directly impact health outcomes for individuals and populations, this book will be an essential guide for key stakeholders, governments, donors, health systems, and others involved in health care. |
financial help for sickle cell patients: National Sickle Cell Anemia Prevention Act United States. Congress. Senate. Labor and Public Welfare, 1972 |
financial help for sickle cell patients: National Sickle Cell Anemia Prevention Act United States. Congress. Senate. Committee on Labor and Public Welfare. Subcommittee on Health, 1972 |
financial help for sickle cell patients: Autologoos Stem Cell and Bone Marrow Transplants Susan K. Stewart, 2000-03 |
financial help for sickle cell patients: The Code Breaker Walter Isaacson, 2021-03-09 A Best Book of 2021 by Bloomberg BusinessWeek, Time, and The Washington Post The bestselling author of Leonardo da Vinci and Steve Jobs returns with a “compelling” (The Washington Post) account of how Nobel Prize winner Jennifer Doudna and her colleagues launched a revolution that will allow us to cure diseases, fend off viruses, and have healthier babies. When Jennifer Doudna was in sixth grade, she came home one day to find that her dad had left a paperback titled The Double Helix on her bed. She put it aside, thinking it was one of those detective tales she loved. When she read it on a rainy Saturday, she discovered she was right, in a way. As she sped through the pages, she became enthralled by the intense drama behind the competition to discover the code of life. Even though her high school counselor told her girls didn’t become scientists, she decided she would. Driven by a passion to understand how nature works and to turn discoveries into inventions, she would help to make what the book’s author, James Watson, told her was the most important biological advance since his codiscovery of the structure of DNA. She and her collaborators turned a curiosity of nature into an invention that will transform the human race: an easy-to-use tool that can edit DNA. Known as CRISPR, it opened a brave new world of medical miracles and moral questions. The development of CRISPR and the race to create vaccines for coronavirus will hasten our transition to the next great innovation revolution. The past half-century has been a digital age, based on the microchip, computer, and internet. Now we are entering a life-science revolution. Children who study digital coding will be joined by those who study genetic code. Should we use our new evolution-hacking powers to make us less susceptible to viruses? What a wonderful boon that would be! And what about preventing depression? Hmmm…Should we allow parents, if they can afford it, to enhance the height or muscles or IQ of their kids? After helping to discover CRISPR, Doudna became a leader in wrestling with these moral issues and, with her collaborator Emmanuelle Charpentier, won the Nobel Prize in 2020. Her story is an “enthralling detective story” (Oprah Daily) that involves the most profound wonders of nature, from the origins of life to the future of our species. |
financial help for sickle cell patients: Newborn Screening for Sickle Cell Disease and other Haemoglobinopathies Stephan Lobitz, Jacques Elion, Raffaella Colombatti, Elena Cela, 2019-10-07 Newborn Screening for Sickle Cell Disease and other Haemoglobinopathies is a Special Issue of the International Journal of Neonatal Screening. Sickle cell disease is one of the most common inherited blood disorders, with a huge impact on health care systems due to high morbidity and high mortality associated with the undiagnosed disease. Newborn screening helps to make the diagnosis early and to prevent fatal complications and diagnostic odysseys. This book gives an overview of diagnostic standards in newborn screening for sickle cell disease and examples of existing newborn screening programs. |
financial help for sickle cell patients: American Society of Hematology Self-Assessment Program Timothy Graubert, James R. Cook, Laura Scheuttpelz, Donald M. Arnold, Adam Cuker, Cindy Neunert, Keith R. McCrae, Margaret Ragni, Sarah O'Brien, Murat Arcasoy, Gary Lyman, Marc J. Kahn, Lawrence A. Solberg, Jecko Thachil, Timothy James Littlewood, Sioban Keel, Charles T. Quinn, Charles H. Packman, Stephan Moll, David Garcia, David P. Steensma, Anjali Sharathkumar, Jorge Di Paola, Amy D. Shapiro, A. Koneti Rao, Charles Eby, Jacob Rand, John Frater, Karen Quillen, Suzanne Bakdash, Dan S. Kaufman, David T. Scadden, Jerald Radich, Sergio Giralt, Geoffrey L. Uy, Inderjeet Dokal, Ross Levine, Ramon V. Tiu, Phillip Scheinberg, Lillian Sung, B. Douglas Smith, Daniel J. DeAngelo, Ching-Hon Pui, Kristie A. Blum, Ann LaCasce, Kerry Joanne Savage, Brad S. Kahl, Grzegorz S. Nowakowski, Vicki A. Morrison, Irene Ghobrial, Martha Lacy, 2013-06-04 Hematologists and others working in hematology-related fields need to stay current with the latest advances in the rapidly evolving disciplines of adult and pediatric hematology. The American Society of Hematology Self-Assessment Program (ASH-SAP) is the only complete, comprehensive, educational resource available that fulfills this need, while also providing thorough board and recertification preparation, as well as AMA PRA Category 1 Credit'. |
financial help for sickle cell patients: The Management of Sickle Cell Disease U. S. Department of Health, 2002 #1 Best Seller on Sickle Cell Disease (SCD). Sickle cell disease is a group of blood disorders passed down from parents to children. Sickle cell anemia shortens life expectancy by 30 years via bacterial infections, painful swellings, fever, arthritis, leg ulcers, eye, lung & heart damage. Over 100,000 people, mostly African-Americans, in the United States have sickle cell disease. Over 2 million people have sickle cell trait in America. It is estimated that more than 300,000 children are born each year with SCD around the world. This edition of The Management of Sickle Cell Disease (SCD) is organized into four parts: 1. Diagnosis and Counseling 2. Health Maintenance 3. Treatment of Acute and Chronic Complications 4. Special Topics. The original intent was to incorporate evidence-based medicine into each chapter, but there was variation among evidence-level scales, and some authors felt recommendations could be made, based on accepted practice, without formal trials in this rare disorder. The best evidence still is represented by randomized, controlled trials (RCTs), but variations exist in their design, conduct, endpoints, and analyses. It should be emphasized that selected people enter a trial, and results should apply in practice specifically to populations with the same characteristics as those in the trial. Randomization is used to reduce imbalances between groups, but unexpected factors sometimes may confound analysis or interpretation. In addition, a trial may last only a short period of time, but long-term clinical implications may exist. Another issue is treatment variation, for example, a new pneumococcal vaccine developed after the trial, which has not been tested formally in a sickle cell population. Earlier trial results may be accepted, based on the assumption that the change is small. In some cases, RCTs cannot be done satisfactorily (e.g., for ethical reasons, an insufficient number of patients, or a lack of objective measures for sickle cell crises). Thus the bulk of clinical experience in SCD still remains in the moderately strong and weaker categories of evidence. Not everyone has an efficacious outcome in a clinical trial, and the frequency of adverse events, such as with long-term transfusion programs or hematopoietic transplants, might not be considered. Thus, an assessment of benefit-to-risk ratio should enter into translation of evidence levels into practice recommendations. A final issue is that there may be two alternative approaches that are competitive (e.g., transfusions and hydroxyurea). In this case the pros and cons of each course of treatment should be discussed with the patient. This book is B&W copy of the government agency publication. |
financial help for sickle cell patients: Alzheimer's Family Support Groups Lillian Middleton, 1984 |
financial help for sickle cell patients: Management of Acute & Chronic Pain Narinder Rawal, 1998-04-16 This concise, practical book sets out to bring physicians and medical practitioners up to date with advances in the management of acute and chronic pain. It reviews basic and clinical research on the many types of pain and their management, including back pain, cancer pain, postoperative pain, obstetric pain, and pain in children. The physiological and pharmacological backgrounds to the various treatments are explained. |
financial help for sickle cell patients: Canadian Immunization Guide Canada. Comité consultatif national de l'immunisation, Canada. National Advisory Committee on Immunization, 2006 The seventh edition of the Canadian Immunization Guide was developed by the National Advisory Committee on Immunization (NACI), with the support ofthe Immunization and Respiratory Infections Division, Public Health Agency of Canada, to provide updated information and recommendations on the use of vaccines in Canada. The Public Health Agency of Canada conducted a survey in 2004, which confi rmed that the Canadian Immunization Guide is a very useful and reliable resource of information on immunization. |
financial help for sickle cell patients: Practical Pain Management C. David Tollison, John R. Satterthwaite, Joseph W. Tollison, 2002 Thoroughly revised to reflect contemporary diagnostics and treatment, this Third Edition is a comprehensive and practical reference on the assessment and management of acute and chronic pain. This edition features 14 new chapters and is filled with new information on invasive procedures...pharmacologic interventions...neuraxial pharmacotherapy...physical and occupational therapies...diagnostic techniques...pain in terminally ill patients...cancer pain...visceral pain...rheumatologic disorders...managed care...and medicolegal issues. Reorganized with two new sections focusing on diagnostics and cancer pain. A Brandon-Hill recommended title. |
financial help for sickle cell patients: Body and Soul Alondra Nelson, 2011 Alondra Nelson recovers a lesser-known aspect of The Black Panther Party's broader struggle for social justice: health care. Nelson argues that the Party's focus on health care was practical and ideological and that their understanding of health as a basic human right and its engagement with the social implications of genetics anticipated current debates about the politics of health and race. |
financial help for sickle cell patients: Managing Sickle Cell Disease Shirley Hill, 2010-05-18 Hill examines how low-income, African American mothers with children suffering from this hereditary, incurable, and chronically painful disease, react to the diagnosis and manage their family's health care. |
financial help for sickle cell patients: Ferguson Career Resource Guide for People with Disabilities, Third Edition, 2-Volume Set Facts On File, Incorporated, 2009 Each two-volume book contains four major sections: . - Introduction and Overview: Provides forewords by notables in the field and an outline of the book. - Essays: Features eight to 10 essays on topics such as workplace issues, financial aid, diversity, and more. - Directory: Contains descriptions and contact information for hundreds of organizations, schools, and associations, arranged by topic. - Further Resources/Indexes: Includes glossaries, appendixes, further reading, and indexes |
financial help for sickle cell patients: Sickle Cell Anemia United States. Congress. Senate. District of Columbia, 1971 |
financial help for sickle cell patients: Financial Accounting for Local and State School Systems , 1981 |
financial help for sickle cell patients: Iron Chelation Therapy Chaim Hershko, 2002 Within the last few years, iron research has yielded exciting new insights into the understanding of normal iron homeostasis. Such development, and the evolution of improved strategies of Iron Chelating Therapy require better understanding of the pathophysiology of iron toxicity and the mechanism of action of iron chelating drugs. The timeliness of the present volume is underlined by several significant developments in recent years. New insights have been gained into the molecular basis of aberrant iron handling in hereditary disorders and the pathophysiology of iron overload. This volume highlights the impact of long term Iron Celating Therapy using deferoxamine or the new, but controversial oral iron chelator deferiprone based on experience gained by multicenter trails, with special emphasis on survival, morbidity and drug toxicity; it reviews the development of the new and improved orally effective chelators suitable for clinical use in the near future and examines novel strategies of iron chelating treatment for the control of cell proliferation in malignant disease or malaria. |
financial help for sickle cell patients: The Medicare Handbook , 1988 |
financial help for sickle cell patients: Respite and Crisis Care , 1981 |
financial help for sickle cell patients: Sickle Cell Disease in Clinical Practice Jo Howard, Paul Telfer, 2015 This practical clinical handbook reveals that sickle cell disease (SCD) is an increasingly common condition to manage in Europe and North America. SCD demands clinical expertise and experience as well as sensitivity to its social and cultural context. This book is designed to broaden readers' knowledge in this challenging condition by describing the acute and long-term complications unique to SCD and that affect nearly every system of the body. Critically, it also details the significant recent advances in understanding the pathophysiology of SCD that are leading to novel treatment modalities. Sickle Cell Disease in Clinical Practice promotes higher quality care by outlining the clinical problems as they arise, and covering essential background information, including up-to-date research, and useful points to guide management. As such, the intended target audience is broad and includes general physicians, general practitioners, hematologists, pediatricians, emergency medicine physicians, surgeons, medical students, nurse specialists and commissioners. |
financial help for sickle cell patients: Genetic Disorders Among Arab Populations Ahmad S. Teebi, Talaat I. Farag, 1997 Few regions of the world have a more varied physiography or a richer ethnic, religious, social, and cultural mix than the Arab world. As a consequence, Arabs are genetically diverse despite their linguistic and religious cohesion. High but variable rates of inbreeding prevail in all Arab countries with numerous examples of isolates among them. These include some Bedouin groups, Nubians, Druze, Jews, and others. Arab populations have high frequencies of autosomal recessive disorders, homozygosity of autosomal dominant and X-linked traits, and a wealth of new syndromes and variants, the majority of which are autosomal recessive. Genetic disorders that cause major health problems include hemoglobinopathies, neurogenetic disorders, inherited metabolic diseases, and inborn error of morphogenesis. Because of their characteristically high prevalence, some of these disorders are considered markers for Arab populations. This book presents the unique profile of genetic disorders and variants in Arabs. In addition, it describes their unusual demographic pattern including fertility rates and other population dimensions, family structure, magnitude and effects of consanguineous marriages and indicators of health and disease. Genetic counseling and the distinctive cultural and religious attitudes towards various genetic issues are also presented. Disorders that have increased tribal occurrences or are limited to large kindreds, as well as small geographic or religious isolates, are highlighted to facilitate their recognition, study, and management. |
financial help for sickle cell patients: Sickle Cell Disease in Childhood Moira Dick, NHS Sickle Cell and Thalassaemia Screening Programme, Sickle Cell Society, 2010 |
financial help for sickle cell patients: Health Professions Student Loan Program , 1984 |
financial help for sickle cell patients: Federal Student Financial Aid Handbook United States. Department of Education. Office of Student Financial Assistance, 1994 |
financial help for sickle cell patients: Addressing Sickle Cell Disease National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, Board on Population Health and Public Health Practice, Committee on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, 2021-01-22 Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed. Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups. |
financial help for sickle cell patients: Sickle Cell Disease Olutayo Christopher Alebiosu, 2020-02-11 Since the first case of sickle cell disease was described in 1910, several efforts have been made to improve its management. However, it remains the leading scourge of our times, with a high level of morbidity and mortality in Sub-Saharan Africa, the Middle East and India. There have been few efforts by academia in developing countries towards contributing to in-depth knowledge of sickle cell disease. This volume rectifies this by providing a comprehensive review of sickle cell disease from a multidisciplinary point of view. Bringing together a number of experts in the field, the text highlights details of what is known and areas in which future work and advances are needed. The contributions contain comprehensive information on all aspects of the disease, and provides a solid foundation for future studies. |
financial help for sickle cell patients: Sickle Cell Anemia United States. Congress. Senate. Committee on the District of Columbia. Subcommittee on Public Health, Education, Welfare, and Safety, 1971 |
financial help for sickle cell patients: Financial Assistance by Geographic Area , 1988 |
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