Issue 61

Diversity in clinical trials, the first ads for drugs, and grad students during the shutdown

Jan. 12, 2019

Hello friend! Welcome to Scrap Facts.

I'm a reporter covering health and science with insatiable curiosity. I love everything I learn, not all of which gets its own story. Each week, I'll bring you some of my favorite facts that I picked up on the job or while out living life.

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Poor representation in clinical trials means scientists have yet to know the details of Alzheimer’s disease.

Found while reporting: New Alzheimer’s research highlights the need for diversity in medical studies.

Clinical trials for Alzheimer’s research have overlooked people of color—particularly African Americans.

This means that black Americans—who make up roughly 13.4% of the population yet develop Alzheimer’s disease twice as often as white people—have not had the chance to benefit from any developments in Alzheimer’s medication.

John Morris, an Alzheimer’s researcher at Washington University in St. Louis, recently published work showing that Alzheimer’s may manifest itself differently in black people. He was disheartened by the historical lack of diversity, citing that for one clinical trial for a new Alzheimer’s drug, only about 2% of people who participated in a clinical trial for an Alzheimer’s drug were black. Another paper I found from 2007 suggested that only 3.6% of participants (paywall) in Alzheimer’s clinical trials were not white. This lack of diversity in clinical trials means that researchers have an incomplete picture of how the disease and potential treatments work in people of color.

There are a lot of reasons that people of color haven’t been well represented in Alzheimer’s research (and medical research as a whole). Largely, it’s because of the medical establishment’s history of racism and inadequate efforts to reach out to communities of color. People of color may also not have access to high-quality medical care, which means that they may not be properly diagnosed or referred to an open clinical trial.

As the researchers behind this recent paper discovered, it could be that Alzheimer’s has different chemical signatures in people of different races—which means that maybe, medical professionals may need different diagnostic criteria. More inclusive research needs to be done to see whether this is the case.

My hope is that it that more inclusion would also lead researchers to a much-needed breakthrough in the field. Alzheimer’s is a devastating and complicated disease, and is expected to be increasingly common as populations age. More diverse studies could lead to breakthroughs that would be impossible to find with homogenous participants.

The first drug advertisements in the US were for a vaccine and ibuprofen.

Found while reporting: Big Pharma spent an additional $9.8 billion on marketing in the past 20 years. It worked

If you’re reading this in the US, chances are you’ve seen an ad for a drug in the past week. Maybe it’s been in a magazine, or on TV, or on the internet, but you’ve seen one (even if you tune them out).

The US and New Zealand are the only two countries in the world where drug ads for consumers are perfectly legal. Drug companies usually say that that ads for their products increase medical literacy. Realistically, though, Big Pharma is looking out for themselves. Although advertisements don’t directly cause sales, it looks like ads have worked out pretty well for drug companies.

Drug ads to consumers have been legal in the US since 1969! The first ads weren’t run until the 1980s, and they were for an antipneumococcal vaccine (featured in Readers’ Digest). The second, featured on TV, was for brand-name ibuprofen called Rufen. Apparently, the commercial was boasting that it was cheaper than Motrin.

These ads were probably different from the ones you see today—they occurred before the FDA required drug companies to explain some of the risks in detail. However, ads now only have to contain a brief summary of these risks—which usually means we only hear about the major complications or common side effects. These two factors don’t paint the complete picture of how a pharmaceutical will affect you.

The FDA issued draft guidelines (paywall) late last year that would require drug companies to use absolute risks in their ads, and graphs where applicable (yay data viz!) but the comment period on those comments only closed last month. I’ll be on the lookout for any legal changes that happen this year.

Graduate students are also at risk of getting hurt by the government shutdown.

Found while reporting: The government shutdown leaves scientists without the means to research.

Yesterday was the first day that some federal employees missed a paycheck as a result of what is not the longest shutdown in US history. (They will hopefully be paid retroactively.)

The effects of the shutdown are everywhere—including the sciences.

Similar to the way we calculated the impact on national parks, (a woefully outdated figure now), we looked at all the grants from the National Science Foundation that were awarded this time last year compared to this year. Yesterday, that figure totaled over $103 million in awarded funding.

Although the NSF is one of several agencies that awards research grants to institutions, these grants can fund PhD candidates coming to work in a lab while they obtain their degree. Without assurance of funding, researchers may not be able to take on new grad students in 2019. Without grad students, a lot of research could be delayed.

In a way, it’s a good thing that US scientists get their funding from a diverse group of organizations. Some already have secured their funding, meaning that they can keep working as usual. But usually, teams of scientists get money from different sources. The shutdown effectively means that some key players have been removed from these teams, stalling research.

One of the biggest teams missing players right now? The group of scientists leading the Intergovernmental Panel on Climate Change’s sixth assessment report. Four of 20 primary researchers have been unable to participate in their working group.

This is just a snapshot of how the shutdown is harming science. While science is important, I’d argue that it’s more worrying that thousands of federal employees may struggle to pay bills, and access to food stamps are only guaranteed through February at this point.

Stuff I learned from others:

Plants take up carbon dioxide imperfectly, and scientists are genetically modifying them to help them out, from Zoë Schlanger for Quartz.

Americans are swapping out soda for seltzer, from Chase Purdy for Quartz.

Some birds rely on fruit in the winter for food. However, warm weather after a frost can cause these fruits to ferment—which means these birds may accidentally get drunk, from Ryan Mandelbaum via Twitter. Ryan is one of my favorite science writers, and I feel I personally have benefitted from their birding hobby.

Animal of the week: The dumbo octopus, or Grimpoteuthis.

This octopus lives far below where you or I can thrive; it’s typical range is 9800 to 13000 feet below sea level, but it’s been found at 23,000 feet deep. Usually, it’s only about a foot long, but scientists found one that was six feet (like, human-sized) once. Although not much is known about these creatures, scientists believe that females can lay eggs throughout the year. They seem to store packets of sperm from males to use whenever they please.

Shout out to the Monterey Bay Aquarium twitter (also another one of my favorite twitters) for reminding us that we (yes, you, dear friend!) are some of the first humans to see the wonderful creatures that live in the depths of the ocean.

Two medium-reads of the week: Although there are life-saving antiretroviral therapies that boost the immune systems of most people living with HIV, there are tens of thousands of people for whom those don’t work. Apoorva Mandavilli writes for STAT.

If you’re feeling burned out (and you may, no matter what generation you’re a part of if you participate in the global digital economy), try to harmonize your present self with your planning self. How? Focus on being present on each task at hand, and controlling your time. A tip from Ephrat Livini and Annabelle Timsit for Quartzy.

That’s all for now. Stay curious, friend! <3

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