blaurenceclark

Love this!

The fully explored answer to that is an article (or book) in and of itself, I can't cover every single outcome but highlight some prominent ones in a 2000 word article.

I 100% disagree with everything you say here. For one, that is not a PR disaster as the headline you're using is one no one would ever use as it is insensitive. In fact what would happen is "New cancer treatment found to be more effective for minorities than previous treatments being test" would be a fabulous headline that would garner tons of support.

Saying "steer clear of minorities" shows complete "superiority" complex and is indicative of why the problem exists.

Well you’d have to do basic research, come up with a hypothesis, then run a clinical trial to test that hypothesis. And hopefully find useful information although clinical trials do fail.

There is actually a push here (ignoring mandated public funded trials) because the Minority populations are becoming large enough that if a diabetes drug that was better in black people existed there’s a massive underserved customer base. Follow the money...

We don’t because no one has run a clinical trial to find out why :(

That only happens for certain drugs, typically treatment naive diabetes, IBD and other chronic disease patients where in the US there’s a standard treatment the patients receive right away so they have to go overseas to find untreated patients. That being said often those treatments will still have to come back to the US to run trials later on for approval on the population here.

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.

I could write a whole other article on this as well. The pregnant women part actually fits extremely well in this context even more so, they aren't neglected, they are specifically left out because researchers don't want to have to explain their outliers. I'm a proponent of that, but the sponsors have to front the costs to make it happen, without a government mandate that gets very tricky.

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.

More minority volunteers, and having clinical trials where minorities go to for care. Great example is most of the well funded academic institutions that run research are in affluent, mostly white neighborhoods, so if a (for assumption) poor minority wanted to participate, its not likely that the clinical trial would be available near them.

* All Minorities, not one minority, and technically I believe all funded research should reflect the populations that exist rather than focusing on one, and take the various genetic backgrounds into account when developing treatments.

If I were to cover every one of the points you called out in detail (which are all valid) I'd end up with an entire book haha.

Thank you!!

Your assumption seemed to be that genetics didn't tie to ethnicity, which it is hence I restated it.

110% agree. The government has actually had a mandate out for publicly funded research since 1993, but only have enforcement rules been enacted and we have yet to see if they will be followed through on.

For research done by private institutions (Pharma, Biotech, etc.) there is no mandate and it's on the researcher to make it a thing.

It would mean that if a drug was inefficient on an African American of Zimbabwe descent, the same drug would be unlikely to be efficient on the black people Zimbabwe. There are measurable genetic traits these can be attributed to, although unfortunately they are less understood for minority populations.

Honestly I have no idea which would have a better outcome, but I know both would have a great impact. My assumption would be the second one if I had to pick though, for example as an African American I have a sickle-cell trait and thus I shouldn't have kids with someone who also has that trait, and African American's in general have a higher likelihood of that trait. This is fortunately one of the well understood minority cases and therefore I can take action on it, but for many other genetic/ethnic dispositions to harm, they are quite unknown.

If I ever figure out which would be better I'll let you know! Or if someone else chimes in.

Attacks from everywhere haha. I'll keep educating anyone I can on this until the day I die!

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

I'm going to quote what someone said below because this is blatantly false

"This is not only false, but dangerously false. We are in the process of discovering that certain classes of popularly-prescribed drugs (eg ACE inhibitors for blacks, certain chemotherapy drugs for Asians) are ineffective or even toxic for populations not represented in the relevant drug development research cohorts. It's not identity politics to note that pharmacokinetics can differ between individuals and populations. These differences do not explain all of the population-level morbidity and mortality differences between ethnicities, but they are significant when investigating differences between groups on the same course of treatment."

You completely missed the point. I specifically put statistics in my article to refute this.

In many clinical trials African Americans that contract various conditions at the same rate or higher than White Americans represent only 1% of the clinical trial versus 15% of the population. While 95% of the trial are White Americans but they are only 60% of the population. There is clearly a disparity here.

I also use the word "Neglect" they haven't recently purposefully ignored minorities (although in the past they did), But the people that want to run the trials put the trials in the neighborhoods (read mostly white populations) that they have worked with before and want to cover. Therefore trials aren't being run where Minorities live.

This is where the "systemic racism" comes into play.

It is an indirect correlation. BMI is a factor related to the likelihood of having diabetes, and what's considered a safe range for white people is an unsafe range for Asians. Thus if you have a white person at a 25 BMI and an Asian person at 25 BMI, the Asian person has a higher likelihood of getting diabetes.

"The educated [Asian] population knows that they're getting diabetes and hypertension and all these things at a much lower BMI, but if you're in a culture where everybody's really fat and you're thin, you tend to go around and think, 'Well, I'm protected,'"

Actually the AI portion of our product is mostly for making clinical trial recruitment more efficient, although we consciously add demographic tweaks to our algorithms to help identify specific patient populations that many researchers simply don't think about.

What we are also working on to make things more fair is helping open critical clinical trials in areas where there is a higher density of minority populations, as well as using demographic data in identifying where minority patients exist that match up to the latest clinical trials to prove to pharma companies that opening them in those areas is not only a moral improvement, but a financial one as well. (Disclaimer we do all of this de-identified).

Would definitely be great to have a larger discussion on this topic!

When you're main concern is "What is a minority" rather than "minorities are dying" that is very indicative of the problem still existing

Actually environmental factors are a big portion of clinical research. Most people think of just the precision medicine approach, but often taking in environmental factors and developing treatment plans that take that into account are a big part of clinical research, and most of the envioronmental/cultural focus on this has been toward white american culture.

While we "focus on medical" clinical research isn't just testing new drugs, it's determining if one diet is better than other, it's finding prevention mechanisms and much much more. We work with any center that is running any type of research. And while we focus mostly on cancer treatments (70% of research dollars are spent here) we're building technology and want to expand to cover all types of clinical research as we grow.

Then why is asthma medication less effective on Latino's and African Americans? And why did my friend have to visit 5 doctors and it wasn't until he found the Black doctor that his skin condition (which is common to only African Americans regardless of weight) was properly diagnosed and treated?

I'm not saying weight is not a problem, I come from a black family where unhealthy diets are a tradition (but that leads back to the fact that traditional african american diets come from the slave food which was unhealthy but taken in as cultural meals, much longer discussion there), but that does not mean that taking out weight in this discussion solves all or even most of the issues at hand.

As well using your same logic, why do Asians who typically have a lower BMI than white individuals have higher incidences of Diabetes? It's not one size fits all

https://health.usnews.com/wellness/articles/2016-03-11/asian...

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.

No single group that is currently a "minority" would overtake the white population, therefore every other population in the US would still be considered a Minority until there is an equal or more number of a single minority than there are white Americans.

Incorrect, the actual definition is "Majority minority" https://en.wikipedia.org/wiki/Majority_minority and yes those of us that are currently Minorities, would still be considered minorities in such a case.