Download as pdf or txt
Download as pdf or txt
You are on page 1of 4

PERS PE C T IV E Addressing the Challenge of Common Chronic Diseases

clear. Among drug trials conduct­ prohibiting the manufacture and This article was published on February 3,
2024, at NEJM.org.
ed between 2015 and 2019, 56% sale of menthol cigarettes and
of U.S. trial participants were fe­ flavored cigars, which are used at 1. Mossadeghi B, Caixeta R, Ondarsuhu D,
Luciani S, Hambleton IR, Hennis AJM. Mul­
male and 16% were Black — pro­ disproportionately high rates by timorbidity and social determinants of
portions that exceed representa­ young people and Black Ameri­ health in the US prior to the COVID-19 pan­
tion in the general population.5 cans and contribute to substantial demic and implications for health out­
comes: a cross-sectional analysis based on
The FDA has issued industry guid­ preventable morbidity and mor­ NHANES 2017-2018. BMC Public Health
ance with a goal of increasing tri­ tality. In addition, the FDA plans 2023;​23:​887.
al enrollment among older adults to propose reducing nicotine lev­ 2. Cross SH, Califf RM, Warraich HJ. Ru­
ral-urban disparity in mortality in the US
with multiple coexisting condi­ els in cigarettes to minimally ad­ from 1999 to 2019. JAMA 2021;​325:​2312-4.
tions, and we established the Pa­ dictive or nonaddictive levels. 3. Warraich HJ, Califf RM. Differences in
tient-Focused Drug Development The pervasiveness of common health outcomes between men and women:
biological, behavioral, and societal factors.
Program to ensure that patient chronic diseases requires a broad Clin Chem 2019;​65:​19-23.
perspectives are central in drug coalition, one that should include 4. Using artificial intelligence and ma­
development and evaluation. the biomedical and digital health chine learning in the development of drug
and biological products: discussion paper
In the area of nutrition, over industries, health systems, payers, and request for feedback. Silver Spring, MD:​
the past few years, the FDA re­ patients, patient advocates, policy­ Food and Drug Administration, May 11,
vised the Nutrition Facts label to makers, and other government 2023 (https://www​.­fda​.­gov/​­media/​­167973/​
­download).
include added sugars and issued agencies. The reward for such a 5. 2015-2019 drug trials snapshots sum­
industry guidance on voluntary so­ united front could be the realiza­ mary report: five-year summary and
dium reduction; we are now rede­ tion of a thriving and more equi­ analysis of clinical trial participation and
demographics. Silver Spring, MD:​Food
fining criteria for use of the table society. and Drug Administration, November 2020
“healthy” claim on food labeling Disclosure forms provided by the au­ (https://www​.­fda​.­gov/​­media/​­143592/​
on the basis of the latest nutri­ thors are available at NEJM.org. ­download).
tional science. Finally, in April From the Food and Drug Administration, DOI: 10.1056/NEJMp2313217
2022, the agency proposed rules Silver Spring, MD. Copyright © 2024 Massachusetts Medical Society.
Addressing the Challenge of Common Chronic Diseases

“The Saddest Waste”

“The Saddest Waste” — Disability, Heredity,


and the Artist’s Eye
Perri Klass, M.D.​​

J oaquín Sorolla triumphed at


the 1900 Universal Exposition
in Paris. The Spanish painter’s
already an established artist, and
this 1899 painting brought him
greater renown — yet he’s not as
durmiendo en la barca (Nap on the Boat,
1895) shows a barefoot boy in
rough clothing, asleep in the shade
¡Triste herencia! (Sad Inheritance!) well known today. of the sail, probably on a fishing
won both the Grand Prix and a “Master of Light,” a 2022 ex­ boat. Mediodía en la playa de Valen-
medal of honor. After getting hibition in Milan, aimed to ac­ cia (Midday at Valencia Beach, 1904)
him nominated to the French Le­ quaint the public with Sorolla’s features three children; its impres­
gion of Honor, it won another work. ¡Triste herencia!, a very large sionist treatment of light, shadow,
medal at the National Exhibition canvas, had a wall to itself. Small­ and reflection makes it uncertain
in Madrid a year later. Sorolla er paintings in the room show­ whether they are walking on sand
was 37 at the time. Originally cased Sorolla’s interest in captur­ or wading in water.
from Valencia, he had studied in ing juxtapositions of sunlight, But ¡Triste herencia!, which dom­
Madrid, Rome, and Paris. He was water, and children’s bodies. Niño inated the room, is quite differ­

492 n engl j med 390;6 nejm.org February 8, 2024

The New England Journal of Medicine


Downloaded from nejm.org by orlando mejia on February 7, 2024. For personal use only. No other uses without permission.
Copyright © 2024 Massachusetts Medical Society. All rights reserved.
PE R S PE C T IV E “The Saddest Waste”

ent (see image). Instead of a


peacefully sleeping lad, perhaps
worn out by hard work, or three
holiday-making children amusing
themselves, it shows a group of
more than 20 naked boys swim­
ming in the sea, supervised by a
black-cloaked monk. In the fore­
ground are boys who haven’t yet
entered the water, some clearly
disabled; two are using crutches
to navigate across the sand, and
another is apparently blind, hold­
ing out his hand for guidance. At
least one child in the water is
also using a crutch.
All the boys look sickly and
scrawny, their bodies pallid
against the golden brown sand. ¡Triste herencia!, Joaquín Sorolla, Valencia, 1899.
A 1901 critic, Aureliano de Beru­ Reproduced courtesy of Colección Fundación Bancaja.
ete, wrote, “We see in this can­
vas a brother from the Congrega­ ked boys in, and on the shore of paralysis for the first time!” He
tion of San Juan de Dios the sea, and watching over them described approvingly how the
accompanying as they bathe a the vigorous figure of a friar. It painter had captured “the wast­
multitude of degenerate children, seems that they were the residents ing of muscles of the thigh and
blind, crippled, lame, lepers, of the hospital of San Juan de calf” in the boy being assisted by
sick, in short, of all kinds; the Dios, the saddest waste of soci­ the monk, and commented that
dregs that society throws from ety: blind, crazy, crippled and “the excessive flexion of the right
its bosom and that charitable in­ lepers [el más triste desecho de la so- knee and the plantarflexed pos­
stitution collects and protects” ciedad: ciegos, locos, tullidos y lepro- ture of the right ankle with the
[multitud de niños degenerados, ciegos, sos]. I cannot explain to you how toes unable to clear a mound of
tullidos, cojos, leprosos, enfermos, en impressed I was, so much so that sand during the swing phase of
fin, de todo género; escoria que la socie- I did not waste time to obtain a gait indicate that the boy’s tibia­
dad arroja de su seno].1 Another crit­ permit to work in the field, and lis anterior is paralysed.”4
ic, William Starkweather, writing right there, next to the water’s But why “sad inheritance”? And
on the occasion of Sorolla’s 1909 edge, I made my painting.”2 why “dregs,” “waste,” “wretched
blockbuster New York exhibition, ¡Triste herencia! has appeared parents”? Joseph’s “unknowingly”
described the boys as “the off­ several times in the medical lit­ referred to Sorolla’s own misun­
cast children of wretched parents. erature. In 2012, Martínez-Lage derstanding of the pathophysiol­
Most of them are crippled, some et al. discussed it from a neuro­ ogy he depicted. Sorolla’s original
of them bear the stigmata of idi­ logic perspective in the journal title for the painting was Niños de
ocy, many are totally blind.”1 Child’s Nervous System, connecting placer (Children of Pleasure), and the
Beruete’s catalogue of misery it to “the sequels of the polio implication of both titles is that
echoes the words of Sorolla him­ epidemic that had struck the re­ these unhealthy, institutionalized
self, describing how he’d come gion of Valencia some years be­ children had been left disabled
to create the painting: “One day I fore.”3 In 2021, Joseph wrote in owing to the sins of their parents
was working hard on one of my the Journal of Pediatric Orthopaedics — that is, most likely, that they
studies of Valencian fishing, when that “Sorolla had unknowingly suffered from effects of congeni­
I discovered from afar a few na­ painted children with postpolio tal syphilis. Sorolla did not un­

n engl j med 390;6 nejm.org February 8, 2024 493


The New England Journal of Medicine
Downloaded from nejm.org by orlando mejia on February 7, 2024. For personal use only. No other uses without permission.
Copyright © 2024 Massachusetts Medical Society. All rights reserved.
PERS PE C T IV E “The Saddest Waste”

derstand that he was painting there might still have been some Sorolla was not wrong about
postpolio paralysis; he saw the protest against a society that cast the damage syphilis can do; un­
boys’ problem as a moral one. The off sick or disabled children, but treated congenital disease (and
“saddest waste of society” was heredity and wretched parents there was no effective treatment
indeed a social issue, the tragic would have had nothing to do at the time) can indeed cause
inheritance was the sins of the with it. Polio epidemics were rel­ skeletal damage, optic atrophy,
parents being visited on the sons. atively new in Europe and the blindness, and neurologic prob­
Sorolla’s contemporaries also United States in the late 19th lems including paralysis. Howev­
understood the painting as de­ and early 20th centuries, and the er, the patterns of muscle wasting
picting congenital syphilis. As the disease’s characteristics were just and paralysis Sorolla recorded re­
Newark Evening News described it being worked out. It wasn’t until veal more specific diagnostic in­
when the 1909 exhibition opened 6 years after the painting was formation to 21st century medi­
in New York, “A score or so of done that Dr. Ivar Wickman, in cal observers. Sorolla’s view of his
imbecile or crippled boys — the Stockholm, established that po­ subjects and his intended social
anatomical deformities are su­ lio was a contagious disease. protest remind us of the ways
perbly mastered — the cast-off Congenital syphilis, by contrast, that medicine has often assigned
children of depraved and un­ had long been understood to be blame to patients — or their par­
known parents, huddle about the inherited: Paracelsus had noted ents — over the centuries. The
good priest whose life is conse­ in 1529 that it passed from fa­ painting also suggests a larger
crated to the alleviation of the ther to son. The Norwegian art­ social moral about the marginal­
sufferings caused by the sins of ist Edvard Munch painted The In- ization of disabled children, “the
the parents.”1 heritance in 1897–99, depicting a dregs that society throws from its
Other Sorolla paintings con­ weeping mother holding an in­ bosom,” “the saddest waste.”
veyed social and political messag­ fant on her lap. Munch had ap­ Yet the painting allows those
es: Trata de blancas (White Slave parently studied a teaching col­ marginalized children a moment
Trade, 1894) showed four young lection of anatomical wax models of joy; however much the painter
prostitutes on a train, supervised in Paris, and represented the in­ might have suffered in recording
by an older woman; ¡Otra Margar- fant with hydrocephalus, frontal the moment, it is not a moment of
ita! (Another Marguerite!, 1892) was bossing, wasted limbs, and a skin suffering for the children. Even as
a woman in handcuffs, arrested eruption on his chest.5 Sorolla recorded the devastation of
for murdering her illegitimate Sorolla was painting patho­ the boys’ bodies, he was painting
child; ¡Aún dicen que el pescado es physiology from life, and he re­ those bodies as they made their
caro! (And They Still Say Fish Is Ex- corded it with sufficient fidelity way from the sandy beach into
pensive!, 1894) depicted a badly to impress an orthopedist. But the light-dappled water. He was
injured young man on a fishing his moral was based on a faulty capturing them during their rec­
boat. But with ¡Triste herencia!, he diagnostic theory. The children he reation, their time to be children,
felt finished with sad and difficult described and painted were out­ between the sea and the sky. He
subjects. In 1909, he said, accord­ casts: blind, crazy, crippled, lepers. may have meant to offer a pro­
ing to Starkweather, “I suffered He blamed their parents, who he found social statement, but he was
greatly. I shall never do another.”1 believed had committed immoral also painting a moment of grace.
Just as an orthopedist might sexual acts, leaving these “chil­ Disclosure forms provided by the author
celebrate the accuracy of Sorolla’s dren of pleasure” a heredity of are available at NEJM.org.

observation of muscular patho­ pain and suffering. Interestingly,


physiology and gait abnormali­ Sorolla had lost his own parents From the Department of Pediatrics, New
York University Grossman School of Medi-
ties, a pediatrician might wonder in 1865 when he was 2 years old, cine, and the Arthur L. Carter Journalism
whether the painter had any to cholera, another disease that Institute, New York University — both in
sense of polio as an infectious wasn’t then understood defini­ New York.

threat. If these boys had been tively to be traceable to an infec­ This article was published on February 3,
stricken in the polio epidemic, tious microorganism. 2024, at NEJM.org.

494 n engl j med 390;6 nejm.org February 8, 2024

The New England Journal of Medicine


Downloaded from nejm.org by orlando mejia on February 7, 2024. For personal use only. No other uses without permission.
Copyright © 2024 Massachusetts Medical Society. All rights reserved.
PE R S PE C T IV E “The Saddest Waste”

1. Bereute AD, Mauclair C, Rochefort H, et 3. Martínez-Lage JF, Pérez-Espejo MA, congenital syphilis behind The Inheritance
al. Eight essays on Joaquín Sorolla y Bastida, Galarza M. Portraying disease: Sorolla’s sad by Edvard Munch. JAMA Dermatol 2018;​154:​
followed by appreciations of the press. New legacy. Childs Nerv Syst 2012;​28:​959-61. 280.
York:​Hispanic Society of America, 1909. 4. Joseph B. Art and pediatric orthopae­
2. Sorolla J. ¡Triste herencia! Fundación dics: Sorolla and a sad inheritance. J Pediatr DOI: 10.1056/NEJMp2312346
Bancaja (https://www​.­f undacionbancaja​.­es/​ Orthop 2021;​41(7):​e590-e591. Copyright © 2024 Massachusetts Medical Society.
“The Saddest Waste”

­obra/​­t riste​-­herencia/​­).
A Treacherous Course 5. Perciaccante A, Coralli A. The history of

In Season 2 of the NEJM podcast “Not


Otherwise Specified,” Dr. Lisa Rosenbaum
delves into a burgeoning revolution in
medical training in discussions with
trainees, educators, and experts on evolving
cultural norms. Listen to the next episode
of “NOS Season 2: The Quiet Revolution
in Medical Training” at NEJM.org or
wherever you get your podcasts.

n engl j med 390;6 nejm.org February 8, 2024 495


The New England Journal of Medicine
Downloaded from nejm.org by orlando mejia on February 7, 2024. For personal use only. No other uses without permission.
Copyright © 2024 Massachusetts Medical Society. All rights reserved.

You might also like