Search

At any one time, at least 30,000 people in the U.S. are living with amyotrophic lateral sclerosis (ALS), a rapidly progressive, fatal neurological disease affecting individuals, caregivers, at-risk genetic carriers, and others. In 2022, Congress directed the National Institutes of Health to commission a National Academies committee of experts to recommend key actions public, private, and nonprofit sectors should take to make ALS a livable disease within the next 10 years. The resulting report, Living with ALS, focuses on an integrated ALS multidisciplinary care and research system to help facilitate earlier diagnosis and connections to specialty care.

Approximately 7.4 million people in the United States live with an intellectual or developmental disability (IDD), defined by the Centers for Disease Control and Prevention as'a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person's lifetime.'Individuals with IDD and their caretakers face exceptional barriers to staying healthy and accessing appropriate health services. Among these barriers are difficulty finding care providers that are adequately trained in meeting their specialized needs, unwieldy payment structures, and a lack of coordination between the various systems of care with which patients with IDD may interact (e.g., education, social work, various segments of the health care system). The National Academies of Sciences, Engineering, and Medicine hosted a workshop to discuss promising innovations in (1) workforce development, (2) financing and payment, and (3) care coordination; and to share visions for improved systems of care. Participants noted that while many existing approaches could serve as models for improving care, large changes will need to be made in these 3 facets of the care system in order to make them accessible to all IDD patients. This publication summarizes the presentations and discussions of the workshop.

Since the late 1960s, the survival rate in children and adolescents diagnosed with cancer has steadily improved, with a corresponding decline in the cancer-specific death rate. Although the improvements in survival are encouraging, they have come at the cost of acute, chronic, and late adverse effects precipitated by the toxicities associated with the individual or combined use of different types of treatment (e.g., surgery, radiation, chemotherapy). In some cases, the impairments resulting from cancer and its treatment are severe enough to qualify a child for U.S. Social Security Administration disability benefits. At the request of Social Security Administration, Childhood Cancer and Functional Impacts Across the Care Continuum provides current information and findings and conclusions regarding the diagnosis, treatment, and prognosis of selected childhood cancers, including different types of malignant solid tumors, and the effect of those cancers on children's health and functional capacity, including the relative levels of functional limitation typically associated with the cancers and their treatment. This report also provides a summary of selected treatments currently being studied in clinical trials and identifies any limitations on the availability of these treatments, such as whether treatments are available only in certain geographic areas.

There have always been homeless people in the United States, but their plight has only recently stirred widespread public reaction and concern. Part of this new recognition stems from the problem's prevalence: the number of homeless individuals, while hard to pin down exactly, is rising. In light of this, Congress asked the Institute of Medicine to find out whether existing health care programs were ignoring the homeless or delivering care to them inefficiently. This book is the report prepared by a committee of experts who examined these problems through visits to city slums and impoverished rural areas, and through an analysis of papers written by leading scholars in the field.

The loss of hearing - be it gradual or acute, mild or severe, present since birth or acquired in older age - can have significant effects on one's communication abilities, quality of life, social participation, and health. Despite this, many people with hearing loss do not seek or receive hearing health care. The reasons are numerous, complex, and often interconnected. For some, hearing health care is not affordable. For others, the appropriate services are difficult to access, or individuals do not know how or where to access them. Others may not want to deal with the stigma that they and society may associate with needing hearing health care and obtaining that care. Still others do not recognize they need hearing health care, as hearing loss is an invisible health condition that often worsens gradually over time. In the United States, an estimated 30 million individuals (12.7 percent of Americans ages 12 years or older) have hearing loss. Globally, hearing loss has been identified as the fifth leading cause of years lived with disability. Successful hearing health care enables individuals with hearing loss to have the freedom to communicate in their environments in ways that are culturally appropriate and that preserve their dignity and function. Hearing Health Care for Adults focuses on improving the accessibility and affordability of hearing health care for adults of all ages. This study examines the hearing health care system, with a focus on non-surgical technologies and services, and offers recommendations for improving access to, the affordability of, and the quality of hearing health care for adults of all ages.

Evidence from the public health sector demonstrates that health care is only one of the determinants of health, which also include genes, behavior, social factors, and the built environment. These contextual elements are key to understanding why health care organizations are motivated to focus beyond their walls and to consider and respond in unprecedented ways to the social needs of patients, including transportation needs. In June 2016 the National Academies of Sciences, Engineering, and Medicine held a joint workshop to explore partnerships, data, and measurement at the intersection of the health care and transportation sectors. This publication summarizes the presentations and discussions from the workshop.

Interim Report of the Committee on Geographic Variation in Health Care Spending and Promotion of High-Value Health Care: Preliminary Committee Observations is designed to provide the committee's preliminary observations for the 113th Congress as it considers further Medicare reform. This report contains only key preliminary observations related primarily to the committee's commissioned analyses of Medicare Parts A (Hospital Insurance program), B (Supplementary Medical Insurance program) and D (outpatient prescription drug benefit), complemented by other empirical investigations. It does not contain any observations related to the committee's commissioned analyses of the commercial insurer population, Medicare Advantage, or Medicaid, which will be presented in the committee's final report after completion of quality-control activities. This interim report excludes conclusions or recommendations related to the committee's consideration of the geographic value index or other payment reforms designed to promote highvalue care. Additional analyses are forthcoming, which will influence the committee's deliberations. These analyses include an exploration of how Medicare Part C (Medicare Advantage) and commercial spending, utilization, and quality vary compared with, and possibly are influenced by, Medicare Parts A and B spending, utilization, and quality. The committee also is assessing potential biases that may be inherent to Medicare and commercial claims-based measures of health status. Based on this new evidence and continued review of the literature, the committee will confirm the accuracy of the observations presented in this interim report and develop final conclusions and recommendations, which will be published in the committee's final report.

In this book, the IOM makes recommendations for permitting independent practice for mental health counselors treating patients within TRICARE—the DOD's health care benefits program. This would change current policy, which requires all counselors to practice under a physician's supervision without regard to their education, training, licensure or experience.

The IOM held a workshop on July 28, 2008, to examine strategies for discussing health disparities in ways that engage the public and motivate change. Speakers focused on health disparities in California, which continues to see dramatic demographic shifts.

According to the Census Bureau, in 2003 more than 43 million Americans lacked health insurance. Being uninsured is associated with a range of adverse health, social, and economic consequences for individuals and their families, for the health care systems in their communities, and for the nation as a whole. This report is the sixth and final report in a series by the Committee on the Consequences of Uninsurance, intended to synthesize what is known about these consequences and communicate the extent and urgency of the issue to the public. Insuring America's Health recommends principles related to universality, continuity of coverage, affordability to individuals and society, and quality of care to guide health insurance reform. These principles are based on the evidence reviewed in the committee's previous five reports and on new analyses of past and present federal, state, and local efforts to reduce uninsurance. The report also demonstrates how those principles can be used to assess policy options. The committee does not recommend a specific coverage strategy. Rather, it shows how various approaches could extend coverage and achieve certain of the committee's principles.

We know more about cancer prevention, detection, and treatment than ever before—yet not all segments of the U.S. population have benefited to the fullest extent possible from these advances. Some ethnic minorities experience more cancer than the majority population, and poor people—no matter what their ethnicity—often lack access to adequate cancer care. This book provides an authoritative view of cancer as it is experienced by ethnic minorities and the medically underserved. It offers conclusions and recommendations in these areas: Defining and understanding special populations, and improving the collection of cancer-related data. Setting appropriate priorities for and increasing the effectiveness of specific National Institutes of Health (NIH) research programs, to ensure that special populations are represented in clinical trials. Disseminating research results to health professionals serving these populations, with sensitivity to the issues of cancer survivorship. The book provides background data on the nation's struggle against cancer, activities and expenditures of the NIH, and other relevant topics.

Americans are accustomed to anecdotal evidence of the health care crisis. Yet, personal or local stories do not provide a comprehensive nationwide picture of our access to health care. Now, this book offers the long-awaited health equivalent of national economic indicators. This useful volume defines a set of national objectives and identifies indicators—measures of utilization and outcome—that can'sense'when and where problems occur in accessing specific health care services. Using the indicators, the committee presents significant conclusions about the situation today, examining the relationships between access to care and factors such as income, race, ethnic origin, and location. The committee offers recommendations to federal, state, and local agencies for improving data collection and monitoring. This highly readable and well-organized volume will be essential for policymakers, public health officials, insurance companies, hospitals, physicians and nurses, and interested individuals.

America's Children is a comprehensive, easy-to-read analysis of the relationship between health insurance and access to care. The book addresses three broad questions: How is children's health care currently financed? Does insurance equal access to care? How should the nation address the health needs of this vulnerable population? America's Children explores the changing role of Medicaid under managed care; state-initiated and private sector children's insurance programs; specific effects of insurance status on the care children receive; and the impact of chronic medical conditions and special health care needs. It also examines the status of'safety net'health providers, including community health centers, children's hospitals, school-based health centers, and others and reviews the changing patterns of coverage and tax policy options to increase coverage of private-sector, employer-based health insurance. In response to growing public concerns about uninsured children, last year Congress voted to provide $24 billion over five years for new state insurance initiatives. This volume will serve as a primer for concerned federal policymakers and regulators, state agency officials, health plan decisionmakers, health care providers, children's health advocates, and researchers.