
How Neglecting Minorities in Medical Research Has Led to Deadly Outcomes - blaurenceclark
https://www.hdphealth.com/how-neglecting-minorities-in-medical-research-has-led-to-deadly-outcomes-solving-a-1t-problem-1318
======
mcguire
" _Not only do minorities get asthma at a higher rate, but [UCSF]
pulmonologist Dr. Esteban Burchard ... has found that ethnicity is the most
important factor in determining if a patient will respond to asthma therapy.
Unfortunately, for the most most commonly prescribed asthma medication,
Albuterol, 67 percent of Puerto Ricans and 47 percent of African-Americans
show no improvement when taking it, yet Albuterol works therapeutically for
the vast majority of Caucasian patients._ "

I did not know that. It's horrifying.

~~~
tzs
It sounds horrifying, but actually is kind of meaningless as written.

Imagine two worlds:

World #1 (the horrible world): medical research neglects black people. They
only bothered to develop an asthma treatment that works on white people.

World #2 (the reasonable world): medical research is careful to make sure they
cover all groups. They developed several asthma drugs. None works well across
all ethnic groups, but there is a good one available for each ethnic group.

In both of these worlds the most commonly prescribed asthma drug will be one
that works on the vast majority of white people and does not work well on
black people.

What they need to include to make the point they are trying to make is how the
less commonly prescribed asthma drugs do on different ethnic groups.

~~~
blaurenceclark
Your assumption in #2 is incorrect. What actually happens often is the doctor
doesn't know what to prescribe the patient and the patients quality of life
suffers. As well as stated in my article, one of those alternative treatments
"For another type of asthma treatment, long-acting bronchodilators, blacks are
4 times more likely than whites to die or experience serious complications
when using them."

And that's not the only one.

[https://www.medicine.wisc.edu/asthmanet/bard](https://www.medicine.wisc.edu/asthmanet/bard)

------
blaurenceclark
I'm the founder of HDP Health, if you have any questions or want
clarifications please ask away!

~~~
m1el
Do you find the opening statement "With more than 50 percent of the population
estimated to be a minority by 2044" ridiculous? When did we start ignoring
what words mean? That's not what the word "minority" means.

There's many ways you can rephrase it and still be correct, mind you.

~~~
scott_s
It’s not ridiculous. It means that by 2044, estimates are that over 50% of the
population will be part of a minority group, and the largest single group
(whites) will no longer be a majority of the population. The minority groups
will individually still be smaller than the largest group.

~~~
burfog
This is a very US-centric view of things. Worldwide, whites are the smallest
minority, and they are the only group to be shrinking. The largest group is of
course Asian.

~~~
scott_s
Yes, it is a very US-centric view, because we're talking about the US.

------
PaulHoule
Part of it is a lack of financial incentives on the part of the drug
companies. Most pharmaceutical research is aimed at marketing drugs.

Take the example of hypertension, which is more prevalent among blacks than
whites. At the moment, all of the major antihypertensive families are
available as generic drugs. The best way to help black people quickly is to do
a comparative study of drugs already on the market. No drug company is going
to do that because they won't be able to capture the value if the drugs are
generic.

Maybe a drug company could try to develop a drug which is particularly good
for blacks, but it will take a decade, may not work, won't sell as well (fewer
people), and then it will be an expensive new drug and people will complain
about the cost.

~~~
blaurenceclark
That's 100% true, I'm not saying we have to create a new drug, but define what
is the best treatments available, as well as take that into account when the
treatments are being made. Especially as there become more black people if
there is a treatment just for that minority it may be a quite profitable route
for them.

Further down in the comments somewhere I posted another comment where it's as
simple as certain chemo's cause toxicity levels in Asians where they don't in
white Americans. So simply lowering the dosage would fix the problem but
because that wasn't involved in the original research it wasn't known for
quite sometime and Asian populations suffered.

When I say "focus on minorities for research" working any solution is fine,
simple or not.

------
gumby
At least on the commercial side the FDA requires that your approval population
(“treatment group”) be “representative” of the population who will receive the
drug if it’s approved. So you can’t get away with, say, doing your study
solely in Chad or Norway as their population distribution (except perhaps by
sex) won’t match that of the USA.

------
confuseddesi
I did find the line at the top "With more than 50 percent of the population
estimated to be a minority by 2044..." funny - doesn't that make them a
majority?

~~~
dragonwriter
Nope. Because it's not all the same minority.

There will be no majority, and whites will (initially, at least) be a
plurality.

------
burfog
Suppose this wasn't the case. The news headlines would of course be
"Experimental drugs being tested on minorities". That would be a PR disaster.
It's safer to steer clear of minorities.

Essentially, the drug companies can't win. People will find something to
complain about. Either minorities are getting neglected, or they are being
abused as lab subjects.

~~~
harlanji
Life is full of these catch 22s and we've cultivated a society where being
offended gets more utility than actally getting helped in some cases. People
don't always know why they act, but coi bono examinations show that outrage
wins for invisible people. 15 minutes of twitter fame vs forming an opinion
and having to defend it hmmmmmmm

------
dbdriscoll
Great post, Brian, keep being awesome!

------
citricsquid
[https://www.propublica.org/article/nothing-protects-black-
wo...](https://www.propublica.org/article/nothing-protects-black-women-from-
dying-in-pregnancy-and-childbirth)

This is a longer article on the subject of poorer health outcomes for
minorities, covering the situation for black women and one family's
experience, which is very much worth reading, but here are the key points:

Statistics:

* A black woman is 22% more likely to die from heart disease than a white woman

* ...71 percent more likely to perish from cervical cancer

* ...243 percent more likely to die from pregnancy- or childbirth-related causes

Reasons:

* Black women are more likely to be uninsured outside of pregnancy, when Medicaid kicks in, and thus more likely to start prenatal care later and to lose coverage in the postpartum period.

* The hospitals where they give birth are often the products of historical segregation, lower in quality than those where white mothers deliver, with significantly higher rates of life-threatening complications.

* [Black women] are more likely to have chronic conditions such as obesity, diabetes, and hypertension that make having a baby more dangerous.

* Black expectant and new mothers frequently told us that doctors and nurses didn’t take their pain seriously [...] numerous studies that show pain is often undertreated in black patients for conditions from appendicitis to cancer.

* An expanding field of research shows that the stress of being a black woman in American society can take a significant physical toll during pregnancy and childbirth.

* Black women are 49 percent more likely than whites to deliver prematurely (and, closely related, black infants are twice as likely as white babies to die before their first birthday).

~~~
pkaye
But this seems to be different situation from what the article is talking
about which is the inadequate involvement of minorities in drug trials. You
are highlighting the lack of adequate health coverage which is a different
issue in the US. But this bring up a question if blacks and other minorities
have the poorer health outcomes in other countries? Japan, China, South Korea
for example does their own drug testing and development so would they find
that a particular drug doesn't work on their population at all? What about the
black population in UK or France? Do they also have poorer health outcomes?

~~~
blaurenceclark
We haven't done extensive research in populations outside of the United
States, but for the last 50-100 years the US (and Europe) has been leading the
charge, but in both these locations, Minorities have been a low percentage
participation in research.

As well, many of these outcomes he mentioned are the indirect result of years
of research. Think of diabetes, 100 years of research was 99% spent on a white
population and that contains prevention, diagnosis, and treatment. Populations
that aren't white begin to see detrimental effects that add up over time.

~~~
pkaye
So none of the asian countries (for example SK or Japan) retest the drugs on
their own population before approval for use?

~~~
blaurenceclark
There is a much longer answer to that question. SK and Japan only make up 5%
of the asian population, many parts of asia are not well tested for these
drugs. We're actually in the process of working with a large pharmaceutical
company on a multi-country diabetes prevention trial in Asia because
traditionally they have not been tested on as much as necessary. As well the
companies there will run many of their trials in the US as well as Asia but
our larger population (as well as running the trials in mostly white
continents such as Australia and Europe) still causes quite a large
discrepancy. We could do a whole other article on this topic.

------
yipopov
Good luck defending this as long as it's deemed political wrongthink to say
there are any biological differences between races.

If everyone is the same, why bother with diverse studies?

~~~
petroseskinder
There's a lot of baggage with "race related medical research."

At least within the US, it is currently deemed wrong think for a number of
reasons.

First, how are you defining race? The current American definitions of race are
imprecise and sociologically constructed. Since the founding of America, the
definition of white has expanded to include various groups that were
previously excluded (e.g. Polish, Irish, Jewish people, Italians, Greek) [0].

As far as black/African Americans, the current definition (one drop rule) has
its limitations. Sub-saharan Africa is not a monolith. It has been found that
the genetic diversity between Sub-saharan African ethnicity groups exceeds
other regions of the world [1]. Even as far as physical differences, there is
a noticeable physical difference between a Tutsi from Rwanda, a Luhya from
Kenya, an Amhara from Ethiopia, and a Yoruba from Nigeria. A very noticeable
difference. I can't speak for their "genetic difference." However, it's large
enough to warrant further investigation on what categories are used. This
distinction is important moving forward. Since 1970, voluntary immigration
from Africa has surged from the aforementioned regions [2], with many becoming
first, and second generation Americans [3], the current racial assumptions and
definitions are a tad archaic.

This is just one racial group within the US. I didn't really even mention how
ludicrous bucketing 60% of the world's population as "Asian" is.

Second, and most importantly, the US does not have a great track record with
biological research targeting black people, Native Americans, and other
minority groups. There is a long history of medical abuse where researchers
conduct experiments without the knowledge or consent of black patients. A few
notable examples in recent history are the Tuskagee Syphilis Experiments
between 1932 and 1972 [3] and DoD's non-consensual whole body radiation
experiments on black cancer patients between 1960 and 1971 [4][5]. Even today,
this sort of non-consensual racial medical experimentation has not stopped. As
recently as 2013, Ethiopian Jews (immigrating from Ethiopia) in Israel were
coerced into agreeing to injections of long acting birth control drugs by
Israeli medical officials [6]. The apprehension is very much justified.

> If everyone is the same, why bother with diverse studies?

You're tone suggests that you don't understand why people are "dancing" around
the subject and trying to be politically correct or whatever. I am under the
impression that the American medical research community has, through its
actions, fostered distrust in "racial" based medical research. Now, it's stuck
in a bind, as a direct consequence of its actions.

[0]
[https://en.wikipedia.org/wiki/Definitions_of_whiteness_in_th...](https://en.wikipedia.org/wiki/Definitions_of_whiteness_in_the_United_States)

[1] cshperspectives.cshlp.org/content/6/7/a008524.full

[2] [http://www.pewresearch.org/fact-tank/2017/02/14/african-
immi...](http://www.pewresearch.org/fact-tank/2017/02/14/african-immigrant-
population-in-u-s-steadily-climbs/)

[3] [https://www.bloomberg.com/view/articles/2015-10-13/it-
isn-t-...](https://www.bloomberg.com/view/articles/2015-10-13/it-isn-t-just-
asian-immigrants-who-excel-in-the-u-s-)

[4]
[https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment](https://en.wikipedia.org/wiki/Tuskegee_syphilis_experiment)

[5]
[http://www.nytimes.com/2007/01/23/health/23book.html](http://www.nytimes.com/2007/01/23/health/23book.html)

[6] [https://goo.gl/BbpdhX](https://goo.gl/BbpdhX)

[7]
[https://www.forbes.com/sites/eliseknutsen/2013/01/28/israel-...](https://www.forbes.com/sites/eliseknutsen/2013/01/28/israel-
foribly-injected-african-immigrant-women-with-birth-control/#57e3fc9367b8)

~~~
blaurenceclark
Totally agree, "bucketing" is certainly hard, but to define every possible
bucket would have me writing an entire book. This piece is meant to get the
discussion started and open peoples eyes to the existing problem and
consciously start to work on solutions. My African ancestry is all sub-saharan
African (at least according to my 23andMe) so I'm quite familiar with those
statistics you're providing.

