The U.S. Latino HIV Crisis PERS PE C T IV E Steinhardt School of Culture, Education, and Human Development, New York Uni‑ versity (A.B.) — both in New York. This article was published on October 9, 2024, at NEJM.org. 1. Centers for Disease Control and Preven- tion. NCHHSTP AtlasPlus (https://gis.­cdc.­gov/ ­ rasp/­nchhstpatlas/­main.­html). g 2. Guilamo-Ramos V, Thimm-Kaiser M, Ben- zekri A, et al. The invisible US Hispanic/Latino HIV crisis: addressing gaps in the national response. Am J Public Health 2020;110:27-31. 3. Guilamo-Ramos V, Thimm-Kaiser M, Benzekri A. Community-engaged Mpox vaccination provides lessons for equitable health care in the United States. Nat Med 2023;29:2160-1. 4. Kimball D, Rivera D, Gonzales M IV, Blashill AJ. Medical mistrust and the PrEP cascade among Latino sexual minority men. AIDS Behav 2020;24:3456-61. 5. Federal Register. Proposed data collection submitted for public comment and recommendations:a notice by the Centers for Disease Control and Prevention. February 27, 2024 (https://www.­federalregister.­gov/­documents/ ­2024/­02/­27/­2024-­03884/­proposed-­data -­collection-­submitted-­for-­public-­comment-­and -­recommendations). DOI: 10.1056/NEJMp2406595 Copyright © 2024 Massachusetts Medical Society. The U.S. Latino HIV Crisis Reframing Cerebral Palsy as a Lifelong Physical Disability Mark D. Peterson, Ph.D. T Reframing Cerebral Palsy as a Lifelong Disability here is a growing body of literature on the health care needs of adults living with cerebral palsy (CP).1 Nonetheless, the vast majority of CP-related research and clinical infrastructure is focused on early detection and intervention, and less effort has been dedicated to addressing issues that affect people throughout the life course. The Centers for Disease Control and Prevention defines CP as “a group of disorders that affect a person’s ability to move and maintain balance and posture” and refers to the condition as “the most common motor disability in childhood.” This definition was adapted from one proposed in 2006.2 Yet there are currently more adults than children living with CP in the United States. Advances in pediatric health care have meant that the majority of children with CP survive to adulthood, and the life expectancy for people with mild impairment is similar to that of the general population.3 Despite an increased risk for the early onset of secondary conditions such as osteoporosis, hypertension, and metabolic disease among people with CP,4 patients often face gaps in clinical follow-up after 1668 they transition from pediatric to adult health care, and there are insufficient data to assess clinical outcomes in this population over time. Various definitions for CP have been proposed over the years.2 Efforts to establish an operational definition have considered the type of motor impairment (e.g., gait disturbance or lack of postural control), the severity of motor impairment, the CP subtype (e.g., hemiplegic or athetoid), the type of neurologic insult (e.g., congenital malformation or periventricular white-matter injury), the cause of the neurologic insult (e.g., hypoxic–ischemic encephalopathy or bacterial infection), and cooccurring deficits (e.g., sensory, communication, or intellectual impairments) that often arise during childhood. More recently, there has been debate about what clinical features must be present to warrant a diagnosis of CP, given that genetic causes are now known to account for a sizable proportion of cases in children, both those with and those without abnormal neuroimaging.5 Previous attempts to define CP have generally focused on children. Many adults with the condition have expressed n engl j med 391;18 nejm.org their sense that these definitions result in their being viewed through an ableist clinical lens and largely ignore their experience of living and aging with CP. For example, one patient reported, “My doctor told me that I couldn’t have cerebral palsy because I am no longer a child.” Another explained, “Things I took for granted as a kid — physical therapy consistently covered by insurance, an understanding of how CP would affect my life, and an assumption that all of my CP-related questions had answers — were totally upended in my 30s.” A third described “a medical support structure carefully built over decades, gone in a minute.” My colleagues and I, along with various organizations (e.g., the Cerebral Palsy Foundation, the Weinberg Family Cerebral Palsy Center, the Cerebral Palsy Research Network, and the Cerebral Palsy Alliance Research Foundation) have therefore adopted a new definition of CP as a condition that affects people throughout the life course and describe it as “the most common lifelong physical disability.” Accurate definitions are fundamental to the practice of medicine. November 7, 2024 The New England Journal of Medicine is produced by NEJM Group, a division of the Massachusetts Medical Society. Downloaded from nejm.org on February 26, 2026. Copyright © 2024 Massachusetts Medical Society. All rights reserved, including those for text and data mining, AI training, and similar technologies. Reframing Cerebral Palsy as a Lifelong Disability PE R S PE C T IV E Clear criteria are important for identifying, categorizing, diagnosing, and managing diseases, as well as for understanding patients’ needs. They help standardize diagnostic practices, ensure continuity between pediatric and adult care, and reduce variability in care. For example, the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, text revision (DSM-5-TR) provides operational definitions for psychiatric disorders, thereby facilitating reliable diagnosis and appropriate treatment selection. There are currently no comprehensive clinical practice guidelines specific to adults with CP. An important reason for this gap is the lack of clinical and epidemiologic research on the health care needs of people with CP throughout the life course. There is wide variation in functioning and health status among people with CP. But care for adults remains siloed in subspecialties carried over from pediatrics, which results in a focus on individual body parts for addressing issues such as spasticity, joint contractures, pain, and musculoskeletal disorders. In part because of this lack of comprehensive care, people with CP may develop other noncommunicable diseases early in adulthood,4 which can contribute to accelerated aging and premature death. Furthermore, cooccurring cognitive impairment in some patients can make the transition to adult primary care more complicated for the patient, the care team, and caregivers. Precise operational definitions are also needed for conducting rigorous research. In clinical trials and observational studies, standardized criteria enhance the validity and reliability of results by supporting consistency in participant selection, disease classification, and outcome measurement. Robust operational definitions enable researchers to accurately assess disease prevalence, risk factors, and treatment efficacy, thereby advancing scientific knowledge and informing evidence-based practice. People with lifelong disabilities meet the exclusion criteria for most clinical trials, but inclusion in research is a necessary first step toward ensuring appropriate health care for adults with CP. Knowledge transfer and translation will also be essential. In spite of new policies supporting the rights of people living with neurodevelopmental conditions, there remains a culture of exclusion and ableism, and barriers to care are common. Accurate definitions also play a crucial role in public health surveillance. Standardized criteria facilitate monitoring of disease trends and implementation of preventive measures. Operational definitions from the National Institutes of Health (NIH) enable national surveillance and coordinated responses to health threats. The NIH’s National Institute of Neurological Disorders and Stroke (NINDS) defines CP as “a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination,” adding that “although CP diagnosis and treatment often focuses on children and adolescents, adults with CP can develop unique physical and mental health challenges that may increase in severity with age.” This definition acknowledges the lifelong implications of CP and could create opportunities for considering it and other childhoodonset neurodevelopmental conditions in epidemiologic surveillance studies focused on aging adults and for including adults with CP in clinical trials that might otherwise exclude people with such diagnoses. n engl j med 391;18 nejm.org Finally, clear definitions can inform policy decisions regarding resource allocation, reimbursement, and quality-improvement initiatives, thereby shaping the delivery of health care services. Substantial research efforts and enhanced federal funding are needed to support improved understanding and treatment of CP over the life course. In 2017, the NINDS and the National Institute of Child Health and Human Development issued a strategic plan for CP research, informed by workshops involving scientists, clinicians, and patient advocates. One recommendation was that “research and healthcare delivery efforts should facilitate the transition from childhood to adulthood, addressing concerns such as employment, pain management, cognitive impairment, aging, women’s health and quality of life.” In 2022, the institutes sponsored a follow-up workshop to discuss progress that could inform new directions for CP research, including research throughout the life course. The NIH has reported a roughly 15% increase in CP-related funding, from $26 million in fiscal year (FY) 2017 to $30 million in FY 2021, since the 2017 priorities were established. Yet funding for life-course–based initiatives remains insufficient (less than 3% of total CP funding per year). There has been a similar maldistribution of funding for lifecourse–based initiatives for autism spectrum disorder (ASD); by comparison, however, NIH funding for research on ASD now exceeds $300 million per year — a discrepancy that cannot be explained by differences in prevalence alone. Having an accurate operational definition for CP is critical for facilitating diagnosis, continuity of care throughout the life course, November 7, 2024 1669 The New England Journal of Medicine is produced by NEJM Group, a division of the Massachusetts Medical Society. Downloaded from nejm.org on February 26, 2026. Copyright © 2024 Massachusetts Medical Society. All rights reserved, including those for text and data mining, AI training, and similar technologies. Reframing Cerebral Palsy as a Lifelong Disability PERS PE C T IV E validity of trial results, public health surveillance, and funding. I believe CP should be recognized for what it is: the most common lifelong physical disability in the world. Disclosure forms provided by the author are available at NEJM.org. From the Department of Physical Medicine and Rehabilitation and the Institute for Healthcare Policy and Innovation, Michigan Medicine, University of Michigan, Ann Arbor. This article was published on November 2, 2024, at NEJM.org. 1. Peterson MD, Hurvitz EA. Cerebral palsy grows up. Mayo Clin Proc 2021;96:1404-6. 2. Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl 2007;109:8-14. 3. Blair E, Langdon K, McIntyre S, Lawrence D, Watson L. Survival and mortality in cerebral palsy: observations to the sixth decade from a data linkage study of a total population register and National Death Index. BMC Neurol 2019;19:111. 4. Whitney DG, Hurvitz EA, Ryan JM, et al. Noncommunicable disease and multimorbidity in young adults with cerebral palsy. Clin Epidemiol 2018;10:511-9. 5. Lewis SA, Shetty S, Wilson BA, et al. Insights from genetic studies of cerebral palsy. Front Neurol 2021;11:625428. DOI: 10.1056/NEJMp2403366 Copyright © 2024 Massachusetts Medical Society. Reframing Cerebral Palsy as a Lifelong Disability I Am Nothing Hemal N. Sampat, M.D. I Am Nothing I ask my 84-year-old Lithuanian patient how to say his last name, and he says, “Oh, you’ll never be able to say it. Just call me Big G!” I’m not expecting what sounds like a rapper nickname from the ill, older man in front of me. He holds out a shaky hand, battered by time and chemotherapy. His body is living its final 2 weeks, but his handshake is still firm with conviction and connection. He holds court in his hospital room, with his two sons, daughter, and granddaughter scattered on the couch and chairs that encircle his bed. His ruddy, sunbeaten face is surrounded by wisps of gray hair and wears a smile that brings gentle warmth to a room flooded with the glare of fluorescent lights and the smell of antiseptics. I tell him I’m the procedure doctor, that I’ve come to do a “paracentesis,” to take some pressure off his belly, ease some pain, maybe even help him eat a little better. When your body is riddled with stomach cancer, even a small 1670 improvement is big. I give him the consent spiel I’ve given several other patients already that day: I’ll use an ultrasound to see inside and then I’ll numb you up and then I’ll use a large needle to drain the fluid and the risks are blah and the benefits are blah-blah and the alternatives are blah-blah-blah. He signs the form. He has no questions. His family would like to stay and watch. I don gloves, pour cold ultrasound jelly on his abdomen, and press the probe to his skin, watching the living black-and-white image on the screen. I see the bowels dance in and out of view as he breathes. As I look for the large empty areas of black that are fluid, he asks me a question. “So, where you from, doctor?” I’ve heard the question many times in my life. My usual answer is “Maryland,” denying satisfaction to people who hear my name and assume I’m not a natural-born American. This time, though, I somehow understand that’s not what he’s asking me. I tell him the story of my fam- n engl j med 391;18 nejm.org ily’s journey, so he can compare it with his own. I was born in America, my parents were born in Africa, but my ancestors are Indian. “India!” he says with excitement, “I love India!” “Have you been?” I ask. Maybe he’s about to tell me how much he liked visiting Jaipur — it’s always Jaipur — or how much he likes Indian food. “No,” he says. “But in my country we watch lots of movies from India!” Bollywood, I know, was quite popular behind the Iron Curtain. I smile and nod, glancing quickly at his face but then back to my screen. “I remember this one movie, my favorite,” he continues. “It has man who says, ‘I am nothing. I am nobody.’ Such great movie.” I am nothing. I am nobody. As my probe continues searching for a pocket of fluid, my mind starts searching its archive of Hindi films for this line. “He sing. He sing that he is nothing, he is nobody. Big song. Very famous.” November 7, 2024 The New England Journal of Medicine is produced by NEJM Group, a division of the Massachusetts Medical Society. Downloaded from nejm.org on February 26, 2026. Copyright © 2024 Massachusetts Medical Society. 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