The NEW ENGLA ND JOURNAL of MEDICINE

Perspective August 12, 2021

Confronting Our Next National Health Disaster

— Long-Haul Covid
Steven Phillips, M.D., M.P.H., and Michelle A. Williams, Sc.D.​​

N
ow that more than half of U.S. adults have care system, in light of the com-
Confronting Our Next National Health Disaster

been vaccinated against SARS-CoV-2, mask- plex and ambiguous clinical pre-
sentation and “natural history”
ing and distancing mandates have been re- of long Covid. There is currently
laxed, and Covid-19 cases and deaths are on the de- no clearly delineated consensus
definition for the condition; in-
cline, there is a palpable sense trol and Prevention (CDC) esti- deed, it is easier to describe what
that life can return to normal. mates that more than 114 mil- it is not than what it is.
Though most Americans may be lion Americans had been infected Long Covid is not a condition
able to do so, restoration of nor- with Covid-19 through March for which there are currently ac-
mality does not apply to the 10% 2021. Factoring in new infections cepted objective diagnostic tests
to 30% of those who are still ex- in unvaccinated people, we can or biomarkers. It is not blood
periencing debilitating symptoms conservatively expect more than clots, myocarditis, multisystem in-
months after being infected with 15 million cases of long Covid flammatory disease, pneumonia,
Covid-19.1 Unfortunately, current resulting from this pandemic. or any number of well-character-
numbers and trends indicate that And though data are still emerg- ized conditions caused by Covid-19.
“long-haul Covid” (or “long Covid”) ing, the average age of patients Rather, according to the CDC,
is our next public health disaster with long Covid is about 40, long Covid is “a range of symp-
in the making. which means that the majority toms that can last weeks or
What form will this disaster are in their prime working years. months . . . [that] can happen to
take, and what can we do about Given these demographics, long anyone who has had Covid-19.”
it? To understand the landscape, Covid is likely to cast a long The symptoms may affect a num-
we can start by charting the shadow on our health care sys- ber of organ systems, occur in
scale and scope of the problem tem and economic recovery. diverse patterns, and frequently
and then apply the lessons of past The cohort of patients with get worse after physical or men-
failures in approaching postinfec- long Covid will face a difficult and tal activity.
tion chronic disease syndromes. tortuous experience with our mul- No one knows what the time
The Centers for Disease Con- tispecialty, organ-focused health course of long Covid will be or

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PERS PE C T IV E
what proportion of patients will
recover or have long-term symp-
toms. It is a frustratingly perplex-
ing condition.
The pathophysiology is also un-
known, though there are hypoth-
eses involving persistent live virus,
autoimmune or inflammatory se-
quelae, or dysautonomia, all of
which have some “biological plau-
sibility.”2 Intriguing links between
long Covid and postural ortho-
static tachycardia syndrome (POTS)
have also been made. But con-
ventional evidence connecting pos-
sible causes to outcomes is cur-
rently lacking.
To understand why long Covid
represents a looming catastrophe,
we need look no further than the
historical antecedents: similar
postinfection syndromes. Expe-
rience with conditions such as
myalgic encephalomyelitis/chronic
fatigue syndrome (ME/CFS), fibro-
myalgia, post-treatment Lyme dis-
ease syndrome, chronic Epstein–
Barr virus, and even the
19th-century diagnosis of neuras-
thenia could foreshadow the suf-
fering of patients with long Covid
in the months and years after in-
fection.
The health care community,
the media, and most people with
long Covid have treated this syn-
drome as an unexpected new
phenomenon. But given the long
arc and enigmatic history of
“new” postinfection syndromes,
the emergence of long Covid
should not be surprising.
Equally unsurprising has been
the medical community’s ambiv-
alence about recognizing long
Covid as a legitimate disease or
syndrome. Extrapolating from the
experience with other postinfec-
tion syndromes, the varied ele-
ments of the biomedical and
media ecosystems are coalescing
578
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Confronting Our Next National Health Disaster
into two familiar polarized camps.
One camp believes that long
Covid is a new pathophysiological
syndrome that merits its own
thorough investigation. The other
believes it is likely to have a non-
physiological origin. Some com-
mentators have characterized it
as a mental illness, and those
embracing this psychogenic par-
adigm are reluctant to endorse a
substantial societal focus on re-
search or to follow traditional
organ-specific clinical pathways
to addressing patients’ concerns.
All of which augurs poorly for
many people with long Covid. If
the past is any guide, they will
be disbelieved, marginalized, and
shunned by many members of the
medical community. Such a re-
sponse will leave patients feeling
misunderstood, aggrieved, and dis-
satisfied. Because of a lack of sup-
port from the medical commu-
nity, patients with long Covid
and activists have already formed
online support groups. One such
organization, the Body Politic
Covid-19 Support Group, has at-
tracted more than 25,000 members.
Some of the disregard can be
attributed to the fact that long
Covid has disproportionately af-
fected women. Our medical sys-
tem has a long history of mini-
mizing women’s symptoms and
dismissing or misdiagnosing their
conditions as psychological.
Women of color with long Covid,
in particular, have been disbe-
lieved and denied tests that their
White counterparts have received.3,4
What needs to be done to help
these patients and competently
address this surge? Unless we
proactively develop a health care
framework and strategy based on
unified, patient-centric, supportive
principles, we will leave millions
of patients in the turbulent breach.
n engl j med 385;7  nejm.org  August 12, 2021
The New England Journal of Medicine
The majority will be women;
many will have chronic, incapaci-
tating conditions and will bounce
around the health care system for
years. The media will continue to
report extensively on the travails
and heroics of the long-haul
phenomenon that lacks apparent
remedy or end.
There is, therefore, an urgent
need for coordinated national
health policy action and response,
which we believe should be built
on five essential pillars. The first
is primary prevention. As many as
35% of eligible Americans may
ultimately choose not to be vac-
cinated against Covid-19. Vaccine
education campaigns should em-
phasize the avoidable scourge of
long Covid and target high-risk,
hesitant populations with cultur-
ally attuned messaging.
Second, we need to continue
to build out a formidable, well-
funded domestic and interna-
tional research agenda to identify
causes, mechanisms, and ultimate-
ly means for prevention and treat-
ment of long Covid. This effort is
already under way. In February,
the National Institutes of Health
(NIH) launched a $1.15 billion,
multiyear research initiative, in-
cluding a prospective cohort of
patients with long Covid who
will be followed to study the tra-
jectory of their symptoms and
long-term effects. The World
Health Organization (WHO) is
working to harmonize global re-
search efforts, including the de-
velopment of standard terminol-
ogy and case definitions.5 Many
countries and research institu-
tions have identified long Covid
as a priority and launched ambi-
tious clinical and epidemiologic
studies.
Third, there are valuable les-
sons to apply from extensive pri-
PE R S PE C T IV E Confronting Our Next National Health Disaster

or experience with postinfection long Covid clinics. This integra- From the COVID Collaborative, Washing-
ton, DC (S.P.); and the Harvard T.H. Chan
syndromes. The relationship of tive patient care model should School of Public Health, Boston (M.A.W.).
long Covid to ME/CFS has been continue to be expanded.
This article was published on June 30, 2021,
brought into focus by the CDC, Fifth, the ultimate success of at NEJM.org.
the NIH, the WHO, and Anthony the research-and-development and
1. Logue JK, Franko NM, McCulloch DJ,
Fauci, the chief medical advisor clinical management agendas in et al. Sequelae in adults at 6 months after
to President Joe Biden and direc- ameliorating the impending catas- COVID-19 infection. JAMA Netw Open 2021;​
tor of the National Institute of trophe is critically dependent on 4(2):​e210830.
2. Altmann DM, Boyton RJ. Confronting
Allergy and Infectious Diseases. health care providers’ believing the pathophysiology of long Covid. The BMJ
Going forward, research may yield and providing supportive care to Opinion. December 9, 2020 (https://blogs​
complementary insights into the their patients. These beleaguered .­bmj​.­com/​­bmj/​­2020/​­12/​­09/​­confronting​-­t he​
-­pathophysiology​-­of​-­long​-­covid/​­).
causation and clinical manage- patients deserve to be afforded 3. Cooney E. Researchers fear people of
ment of both conditions. The CDC legitimacy, clinical scrutiny, and color may be disproportionately affected by
An audio interview has developed guide- empathy. long Covid. Stat. May 10, 2021 (https://www​
.­statnews​.­com/​­2021/​­05/​­10/​­w ith​-­long​-­covid​
with Dr. Phillips lines and resources Addressing this postinfection -­h istory​-­m ay​-­be​-­repeating​-­itself​-­a mong​
is available at NEJM.org on the clinical man- condition effectively is bound to -­people​-­of​-­color/​­).
agement of ME/CFS that may also be an extended and complex en- 4. Ducharme J. Black women are fighting
to be recognized as long COVID patients.
be applicable to patients with long deavor for the health care system Time. April 12, 2021 (https://time​ .­
com/​
Covid. and society as well as for affect- ­5954132/​­black​-­women​-­long​-­covid/​­).
Fourth, to respond holistically ed patients themselves. But taken 5. Expanding our understanding of post
COVID-19 condition. 1st webinar. World
to the complex clinical needs of together, these five interrelated Health Organization, February 9, 2021.
these patients, more than 30 U.S. efforts may go a long way toward (https://www​.­who​.­i nt/​­docs/​­default​-­source/​
hospitals and health systems — mitigating the mounting human ­coronaviruse/​­agenda_expanding​-­our​
-­u nderstanding​-­of​-­post​-­covid​-­19​-­condition​
including some of the most pres- toll of long Covid. -­agenda​-­f inal​.­pdf).
tigious centers in the country — Disclosure forms provided by the authors DOI: 10.1056/NEJMp2109285
have already opened multispecialty are available at NEJM.org. Copyright © 2021 Massachusetts Medical Society.
Confronting Our Next National Health Disaster

Criminalization of Gender-Affirming Care

Criminalization of Gender-Affirming Care — Interfering with

Essential Treatment for Transgender Children and Adolescents
Simona Martin, B.S., Elizabeth S. Sandberg, M.D., and Daniel E. Shumer, M.D., M.P.H.​​

O n April 6, 2021, the Arkan-

sas state legislature overrode
a veto by the governor to pass
legislation making it illegal for
medical professionals to provide
gender-affirming treatment to pa-
tients with gender dysphoria who
are younger than 18 or to refer
them to other clinicians for such
treatment. Several other states
have similar legislation pending.
As physicians and a physician-
in-training who provide gender-
affirming care, we are deeply con-
cerned that these political actions
threaten the health and well-
being of transgender children and
adolescents. We have found that
such young people are courageous
and resilient, yet profoundly vul-
nerable. Moreover, they already
have higher-than-average risk for
suicidality and are disproportion-
ately likely to experience violence.
Gender identity — the deeply
felt internal sense of oneself as
male, female, or somewhere else
on the gender spectrum — may
or may not align with the sex
one was assigned at birth. When
it does not align, the umbrella
term “transgender” is often used
to denote this incongruence. Al-
though not all transgender young
people feel distress related to
their gender identity, when dis-
tress is present and persistent, a
mental health professional with
experience in gender-identity eval-
uations may diagnose gender dys-
phoria.
Gender dysphoria can be treat-
ed with both nonmedical and
medical interventions. The for-
mer may include therapy, coming
out to loved ones, or using a cho-
sen name or pronouns and dress-
ing or grooming in a way that

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Copyright © 2021 Massachusetts Medical Society. All rights reserved.