The Washington Post - USA (2020-07-27)

A6 eZ re the washington post.monday, july 27 , 2020

a few months.

“It’s much faster to take the

path of least resistance and sign

up the people who have access to

health care and everything —

they have cars, they can pay for

parking,” marrazzo said.

The irony is that people who

are following every update of

vaccine development and have

time to learn about the nuances of

medical research often have priv-

ileges that protect them from the

virus. And people willing to par-

ticipate in vaccine trials funda-

mentally trust that the system

will work for them, a feeling often

absent in the communities that

could benefit most from a safe

and effective vaccine.

one recruitment tool depends

on portals or apps that people use

to check their electronic health

record, which could alert them

about the opportunity to enroll in

a trial. But people in minority

communities are less likely to

have a primary care doctor or

health insurance, meaning they

wouldn’t h ave easy access to med-

ical records.

“It almost feels like we should

have started 400 years ago and

not four months ago,” said Utibe

r. Essien, an assistant professor

of medicine at the University of

Pittsburgh School of medicine.

a legacy of inequities

roshon Green of Law-

renceville, Ga., plans to wait until

vaccine trials are done to get a

shot of protection — and perhaps

longer. She’s not alone.

far from having a fear of sci-

ence, Green, 50, is a diversity

educator for a health plan. She

knows the depressing medical

literature on racial disparities all

too well. Health disparities affect

every stage and facet of life: high-

er rates of obesity in the black

community, b lack women’s r isk of

dying during childbirth, hesi-

tance to treat black people’s pain.

In a country that has tolerated

those inequities for centuries,

suspicions flare when pharma-

ceutical executives, philanthro-

pist billionaires and government

leaders talk high-mindedly about

the need for black people to step

forward as test subjects and line

up for shots.

“Now, all of a sudden, you come

up with the vaccination and it’s

supposed to work, and work well,

and you want to try it on us? You

haven’t paid attention to us for

years,” Green said. “You never

care about us, and all of a sudden,

you have a vaccination and you

want to save us? No way.”

Green thinks it’s possible that

researchers and scientists could

build trust in the vaccine and the

research effort. But it’s a huge

task. They will need to communi-

cate more openly, draw o n leaders

the black community trusts and

acknowledge the layers of inequi-

ty exposed by the pandemic.

“If there’s this great vaccina-

tion, something that can remote-

ly help someone, and you’re se-

cure in it, why are you seeking out

the African American communi-

ty? Why aren’t you getting more

of the 1 percenters? Give it to Bill

Gates. Give it to Donald Trump,”

Green said. “Someone like me,

regular old people, everyday try-

ing-to-make-it people will wait.”

[email protected]

of the pandemic have made it

difficult to start those conversa-

tions in depth and early because

so many trial details are being

finalized.

“I don’t even have a script yet.

It’s about education, and I don’t

want to call people and say we

have a study that’s upcoming

soon and blah blah blah — I need

to have a concrete plan,” said

Anthony Johnson, a community

affairs specialist at the University

of Illinois at Chicago, working on

recruitment for a trial of a corona-

virus vaccine made by the compa-

ny moderna. “They’re interested.

They’re nervous. A whole lot of

them have been impacted by

covid-19, in different ways.”

Willing, but maybe not ideal

In the first 24 hours that a

national website went online al-

lowing people to volunteer to be

considered for vaccine trials,

30,000 people registered. In a

pandemic, research trials are of-

ten easier to fill. But making sure

participants are people truly at

risk for the disease will be a

fundamental tension, given the

need to go fast.

Jeanne marrazzo, an infectious

diseases physician at the Univer-

sity of Alabama at Birmingham,

said the HIV community has

learned how to do the hard work

of bringing minority communi-

ties in to trials. But she is worried

diversity could be sacrificed amid

competitive pressures between

companies jockeying to be the

first to develop a coronavirus

vaccine. And there are concerns

about researchers lacking experi-

ence with vulnerable communi-

ties and trying to meet aggressive

timelines to deliver results within

with representation from minori-

ty communities, a job that often

comes down to human interac-

tion and time. That task is all the

more complicated now, with face-

to-face interactions limited by the

pandemic, community gather-

ings presenting a risk for virus

spread and a rush to recruit. And

it’s happening against the back-

drop of a nation grappling with

systemic racism.

Decades of outreach by HIV

researchers to gay men, transgen-

der people and communities of

color serve as a scaffold, but the

coronavirus affects a much

broader population. researchers

leading the vaccine effort are con-

vening community advisory

boards to understand how to tai-

lor messages and communicate

respectfully with a number of

at-risk groups, including Native

Americans, blacks, Latinos and

older people.

Small details will be critical.

Brochures or ads for clinical trials

must be available in multiple

languages. They must depict mi-

norities, but not just as test sub-

jects. materials prepared for trib-

al leaders and ethics specialists in

one Native American community

may need to answer different

questions than those prepared for

another, said michele Andrasik, a

senior staff scientist in the Vac-

cine and Infectious Disease Divi-

sion at the fred Hutchinson Can-

cer Center.

“We have to be incredibly

mindful of who we’re talking to,

and how we’re talking to them,”

Andrasik said.

Experts who work on research

trials and specialize in building

engagement with communities

said the swift arrival and spread

ments that deliberately infected

prisoners with sexually transmit-

ted diseases, have become cultur-

al touchstones for many people of

color, sowing deep distrust of

medical authorities. That mis-

trust — coupled with unequal

access to health care, information

barriers and racial bias — means

they are underrepresented in re-

search trials.

“Now, along comes the pan-

demic, and it’s more important

now than ever that we have mi-

norities included. We should be

jumping over mountains to try

and make this work,” said Con-

suelo H. Wilkins, vice president

for health equity research at Van-

derbilt University medical Cen-

ter.

In normal times, it can take

years of planning to create trials

Getting the science right

The race to create a coronavi-

rus vaccine has played out in the

arcane domain of biology. C an the

vaccine trigger the body’s im-

mune system to protect against

an infection? Which vaccine tech-

nology is more promising? How

long do virus-fighting antibodies

that are circulating in people’s

blood stick around?

The definitive answers to those

questions won’t come from labo-

ratory experiments, but from

large-scale human clinical tests

that have long struggled to in-

clude minority communities.

Unethical research abuses of

black and brown communities,

including the Tuskegee experi-

ments that withheld syphilis

treatments from African Ameri-

cans and Guatemalan experi-

studies?”
The unprecedented scientific
quest to end the novel coronavi-
rus pandemic with a vaccine now
faces one of its most crucial tests,
and nothing less than the success
of the entire endeavor is at stake.
A vaccine must work for everyone
— young and old, black, brown
and white. To prove that it does,
many of the 30,000 volunteers for
each trial must come from diverse
communities. It’s n ot only a scien-
tific necessity, but also a moral
imperative, as younger people of
color die of the virus at twice the
rate of white people, and black,
Hispanic and Native Americans
are hospitalized at four to five
times the rate of white people in
the same age groups.
“If this is a vaccine trial that
enrolls a bunch of 20-somethings
or white college graduates, it will
not give us the information we
need,” francis Collins, director of
the National Institutes of Health,
said in an interview.
Newells has experienced the
reality behind the grim statistics
within his family. A cousin in St.
Louis was on a ventilator for
three weeks in march. An aunt
and an uncle were hospitalized
with covid-19, the disease caused
by the virus. His professional
experience as a biomedical advo-
cate and executive director of the
AIDS Project of the East Bay has
taught him how crucial it is to
include minorities in trials, if a
treatment or drug is to succeed in
the real world.
A decade ago, a revolution oc-
curred in HIV, when the first pill
regimen to prevent HIV was
shown effective. But a trial in San
francisco was dominated by gay
white men, Newells said, and as
the drug became available
through an extension to the clini-
cal trial, it was those men and
their social circles who embraced
it.
“The black people in oakland
didn’t r eally know about it, hadn’t
been learning about it for a cou-
ple years,” Newells said. “We
know from that experience that
we have to engage people early in
the research end of it, so by the
time something gets approved,
it’s not something brand new. I
think it’s g oing to take time to talk
to people about vaccine research.

vaCCiNe from a

Building trust in research, vaccine is a key to helping ensure diversity in trials

Melina Mara/the Washington Post

With the first massive coronavirus vaccine trial in people set to start, the Rev. Rob Newells, pastor of a California church, is on the fence

about what to tell his colleagues, his community and his family. He is worried about a campaign that seems so narrowly focused on speed.

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