
The Alzheimer’s Gene That Varies By Race & Sex
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
The Alzheimer’s Gene That Varies By Race & Sex
You probably know that there are important genetic factors that increase or decrease Alzheimer’s Risk. If you’d like a quick refresher before we carry on, here are two previous articles on this topic:
- Genetic Testing: Health Benefits & Methods (about personal genomics and health, including Alzheimer’s)
- The Surprising Link Between Type 2 Diabetes & Alzheimer’s (about the APOE-ε4 allele that is implicated in both)
A Tale of Two Alleles
It has generally been understood that APOE-ε2 lowers Alzheimer’s disease risk, and APOE-ε4 increases it.
However, for reasons beyond the scope of this article, research populations for genetic testing are overwhelmingly white. If you, dear reader, are white, you may be thinking “well, I’m white, so this isn’t a problem for me”, you might still want to read on…
An extensive new study, published days ago, by Dr. Belloy et al., looked at how these correlations held out per race and sex. They found:
- The “APOE-ε2 lowers; APOE-ε4 increases” dictum held out strongest for white people.
- In the case of Hispanic people, there was only a small correlation on the APOE-ε4 side of things, and none on the APOE-ε2 side of things per se.
- East Asians also saw no correlation with regard to APOE-ε2 per se.
- But! Hispanic and East Asian people had a reduced risk of Alzheimer’s if and only if they had both APOE-ε2 and APOE-ε4.
- Black people, meanwhile, saw a slight correlation with regard to the protective effect of APOE-ε2, and as for APOE-ε4, if they had any European ancestry, increased European ancestry meant a higher increased risk factor if they had APOE-ε4. African ancestry, on the other hand, had a protective effect, proportional to the overall amount of that ancestry.
And as for sex…
- Specifically for white people with the APOE-ε3/ε4 genotype, especially in the age range of 60–70, the genetic risk for Alzheimer’s was highest in women.
If you’d like to read more and examine the data for yourself:
APOE Genotype and Alzheimer Disease Risk Across Age, Sex, and Population Ancestry
Want to reduce your Alzheimer’s risk?
We have just the thing for you:
How To Reduce Your Alzheimer’s Risk: It’s Never Too Early To Do These 11 Things
Take care!
Don’t Forget…
Did you arrive here from our newsletter? Don’t forget to return to the email to continue learning!
Recommended
Learn to Age Gracefully
Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails:
-
Slow-Cooker Moroccan Tagine
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
Tagine (طاجين) (tā-jīn) is a traditional dish named after, well, the traditional dish that it’s cooked in. Here’s an example tagine pot on Amazon. It’s a very nifty bit of kit, and while it’s often used for cooking over charcoal, one of its features is that if you have a hot sunny day, you can just leave it out in the sun and it will cook the contents nicely. Today though, we’re going to assume you don’t have one of these, and are going to give instructions for cooking a tagine-style dish with a slow cooker, which we’re going to assume you do have.
You will need
- 2 large red onions, finely chopped
- 2 large red peppers, cut into 1″ chunks
- 2 large zucchini, cut into ½” chunks
- 1 large eggplant, cut into ½” chunks
- 3 cups tomato passata
- 2 cups cooked chickpeas
- 16 pitted Medjool dates, chopped
- ½ bulb garlic, finely chopped
- 1 tbsp ras el-hanout
- A little extra virgin olive oil
Method
(we suggest you read everything at least once before doing anything)
1) Let your slow cooker heat up while you chop the things that need chopping
2) Add a splash of olive oil to the slow cooker; ensure the base is coated and there’s a little oil spare in there too; a thin coat to the base plus a couple of tbsp should do it nicely.
3) Add the onions and garlic, and leave for an hour.
4) Add the passata, dates, ras el-hanout, stir it and leave for an hour.
5) Add the chickpeas, peppers, and eggplant; stir it and leave for an hour.
6) Add the zucchini, stir it and leave for an hour.
7) Serve—it goes great with its traditional pairing of wholegrain couscous, but if you prefer, you can use our tasty versatile rice. In broader culinary terms, serving it with any carb is fine.
Enjoy!
Want to learn more?
For those interested in some of the science of what we have going on today:
- Level-Up Your Fiber Intake! (Without Difficulty Or Discomfort)
- What Matters Most For Your Heart? Eat More (Of This) For Lower Blood Pressure
- Our Top 5 Spices: How Much Is Enough For Benefits?
Take care!
Share This Post
-
The Exercises That Can Fix Sinus Problems (And More)
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
Who nose what benefits you will gain today?
This is James Nestor, a science journalist and author. He’s written for many publications, including Scientific American, and written a number of books, most notably Breath: The New Science Of A Lost Art.
Today we’ll be looking at what he has to share about what has gone wrong with our breathing, what problems this causes, and how to fix it.
What has gone wrong?
When it comes to breathing, we humans are the pugs of the primate world. In a way, we have the opposite problem to the squashed-faced dogs, though. But, how and why?
When our ancestors learned first tenderize food, and later to cook it, this had two big effects:
- We could now get much more nutrition for much less hunting/gathering
- We now did not need to chew our food nearly so much
Getting much more nutrition for much less hunting/gathering is what allowed us to grow our brains so large—as a species, we have a singularly large brain-to-body size ratio.
Not needing to chew our food nearly so much, meanwhile, had even more effects… And these effects have become only more pronounced in recent decades with the rise of processed food making our food softer and softer.
It changed the shape of our jaw and cheekbones, just as the size of our brains taking up more space in our skull moved our breathing apparatus around. As a result, our nasal cavities are anatomically ridiculous, our sinuses are a crime against nature (not least of all because they drain backwards and get easily clogged), and our windpipes are very easily blocked and damaged due to the unique placement of our larynx; we’re the only species that has it there. It allowed us to develop speech, but at the cost of choking much more easily.
What problems does this cause?
Our (normal, to us) species-wide breathing problems have resulted in behavioral adaptations such as partial (or in some people’s cases, total or near-total) mouth-breathing. This in turn exacerbates the problems with our jaws and cheekbones, which in turn exacerbates the problems with our sinuses and nasal cavities in general.
Results include such very human-centric conditions as sleep apnea, as well as a tendency towards asthma, allergies, and autoimmune diseases. Improper breathing also brings about a rather sluggish metabolism for how many calories we consume.
How are we supposed to fix all that?!
First, close your mouth if you haven’t already, and breathe through your nose.
In and out.
Both are important, and unless you are engaging in peak exercise, both should be through your nose. If you’re not used to this, it may feel odd at first, but practice, and build up your breathing ability.
Six seconds in and six seconds out is a very good pace.
If you’re sitting doing a breathing exercise, also good is four seconds in, four seconds hold, four seconds out, four seconds hold, repeat.
But those frequent holds aren’t practical in general life, so: six seconds in, six seconds out.
Through your nose only.
This has benefits immediately, but there are other more long-term benefits from doing not just that, but also what has been called (by Nestor, amongst many others), “Mewing”, per the orthodontist, Dr. John Mew, who pioneered it.
How (and why) to “mew”:
Place your tongue against the roof of your mouth. It should be flat against the palate; you’re not touching it with the tip here; you’re creating a flat seal.
Note: if you were mouth-breathing, you will now be unable to breathe. So, important to make sure you can breathe adequately through your nose first.
This does two things:
- It obliges nose-breathing rather than mouth-breathing
- It creates a change in how the muscles of your face interact with the bones of your face
In a battle between muscle and bone, muscle will always win.
Aim to keep your tongue there as much as possible; make it your new best habit. If you’re not eating, talking, or otherwise using your tongue to do something, it should be flat against the roof of your mouth.
You don’t have to exert pressure; this isn’t an exercise regime. Think of it more as a postural exercise, just, inside your mouth.
Quick note: read the above line again, because it’s important. Doing it too hard could cause the opposite problems, and you don’t want that. You cannot rush this by doing it harder; it takes time and gentleness.
Why would we want to do that?
The result, over time, will tend to be much healthier breathing, better sinus health, freer airways, reduced or eliminated sleep apnea, and, as a bonus, what is generally considered a more attractive face in terms of bone structure. We’re talking more defined cheekbones, straighter teeth, and a better mouth position.
Want to learn more?
This is the “Mewing” technique that Nestor encourages us to try:
Share This Post
-
What Most People Don’t Know About Hearing Aids
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
Dr. Juliëtte Sterkens, a doctor of audiology, makes things clearer in this TEDx talk:
The sound of the future
Half of all adults experience hearing loss by the age of 75, and by 85, that goes up to two thirds. Untreated hearing loss leads to depression, social isolation, cognitive decline, and even an increased fall risk.
It’s not just about reduced volume though; Dr. Sterkens points out that for many (like this writer!) it’s more a matter of unequal pitch perception and difficulty in speech clarity. Most hearing aids just amplify sound, and don’t fully restore clarity, especially beyond a short range.
However, technology keeps marching forwards there have been improvements in the move from analog to digital, and today’s bluetooth-enabled hearing aids often do a lot better, especially in the case of things like TV transmitters and clip-on microphones.
Out and about, you might see signs sometimes saying “Hearing Loop Enabled”, and those transmit sound directly to telecoil-equipped hearing aids—venues with public address systems are legally required to provide hearing accommodations like this. Many hearing aids include telecoils, but users often aren’t informed or don’t have them activated, which is unfortunate, because telecoils improve hearing dramatically in loop-enabled venues.
Dr. Sterkens makes a plea for us to, as applicable,
- Activate telecoils and insist on them in new hearing aids.
- Advocate for assistive listening systems in public venues.
- Use available resources like the Hearing Loss Association of America for tools and information.
- Familiarize ourselves with accessibility laws and report non-compliance.
- Aim to make the world more accessible for people with hearing loss through advocacy, technology, and awareness.
For more on all of this, enjoy:
Click Here If The Embedded Video Doesn’t Load Automatically!
Want to learn more?
You might also like to read:
Take care!
Share This Post
Related Posts
-
Junk Food Turns Public Villain as Power Shifts in Washington
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
The new Trump administration could be coming for your snacks.
For years, the federal government has steered clear of regulating junk food, fast food, and ultra-processed food.
Now attitudes are changing. Some members of President-elect Donald Trump’s inner circle are gearing up to battle “Big Food,” or the companies that make most of the food and beverages consumed in the United States. Nominees for top health agencies are taking aim at ultra-processed foods that account for an estimated 70% of the nation’s food supply. Based on recent statements, a variety of potential politically charged policy options to regulate ultra-processed food may land on the Trump team menu, including warning labels, changes to agribusiness subsidies, and limits on which products consumers can buy with government food aid.
The push to reform the American diet is being driven largely by conservatives who have taken up the cause that has long been a darling of the left. Trump supporters such as Robert F. Kennedy Jr., whose controversial nomination to lead the Department of Health and Human Services still faces Senate confirmation, are embracing a concept that champions natural foods and alternative medicine. It’s a movement they’ve dubbed “MAHA,” or Make America Healthy Again. Their interest has created momentum because their goals have fairly broad bipartisan support even amid a bitterly divided Congress in which lawmakers from both sides of the aisle focused on the issue last year.
It’s likely to be a pitched battle because the food industry wields immense political influence and has successfully thwarted previous efforts to regulate its products or marketing. The category of “food processing and sales companies,” which includes Tyson Foods and Nestle SA, tallied $26.7 million in spending on lobbying in 2024, according to OpenSecrets. That’s up from almost $10 million in 1998.
“They have been absolutely instrumental and highly, highly successful at delaying any regulatory effectiveness in America,” said Laura Schmidt, a health policy professor at the University of California-San Francisco. “It really does feel like there needs to be a moment of reckoning here where people start asking the question, ‘Why do we have to live like this?’”
“Ultra-processed food” is a widely used term that means different things to different people and is used to describe items ranging from sodas to many frozen meals. These products often contain added fats, starches, and sugars, among other things. Researchers say consumption of ultra-processed foods is linked — in varying levels of intensity — to chronic conditions like diabetes, cancer, mental health problems, and early death.
Nutrition and health leaders are optimistic that a reckoning is already underway. Kennedy has pledged to remove processed foods from school lunches, restrict certain food additives such as dyes in cereal, and shift federal agricultural subsidies away from commodity crops widely used in ultra-processed foods.
The intensifying focus in Washington has triggered a new level of interest on the legal front as lawyers explore cases to take on major foodmakers for selling products they say result in chronic disease.
Bryce Martinez, now 18, filed a lawsuit in December against almost a dozen foodmakers such as Kraft Heinz, The Coca-Cola Co., and Nestle USA. He developed diabetes and non-alcoholic fatty liver disease by age 16, and is seeking to hold them accountable for his illnesses. According to the suit, filed in the Philadelphia Court of Common Pleas, the companies knew or should have known ultra-processed foods were harmful and addictive.
The lawsuit noted that Martinez grew up eating heavily advertised, brand-name foods that are staples of the American diet — sugary soft drinks, Cheerios and Lucky Charms, Skittles and Snickers, frozen and packaged dinners, just to name a few.
Nestle, Coca-Cola, and Kraft Heinz didn’t return emails seeking comment for this article. The Consumer Brands Association, a trade association for makers of consumer packaged goods, disputed the allegations.
“Attempting to classify foods as unhealthy simply because they are processed, or demonizing food by ignoring its full nutrient content, misleads consumers and exacerbates health disparities,” said Sarah Gallo, senior vice president of product policy, in a statement.
Other law firms are on the hunt for children or adults who believe they were harmed by consuming ultra-processed foods, increasing the likelihood of lawsuits.
One Indiana personal injury firm says on its website that “we are actively investigating ultra processed food (UPF) cases.” Trial attorneys in Texas also are looking into possible legal action against the federal regulators they say have failed to police ultra-processed foods.
“If you or your child have suffered health problems that your doctor has linked directly to the consumption of ultra-processed foods, we want to hear your story,” they say on their website.
Meanwhile, the FDA on Jan. 14 announced it is proposing to require a front-of-package label to appear on most packaged foods to make information about a food’s saturated fat, sodium, and added sugar content easily visible to consumers.
And on Capitol Hill, Sens. Bernie Sanders (I-Vt.), Ron Johnson (R-Wis.), and Cory Booker (D-N.J.) are sounding the alarm over ultra-processed food. Sanders introduced legislation in 2024 that could lead to a federal ban on junk food advertising to children, a national education campaign, and labels on ultra-processed foods that say the products aren’t recommended for children. Booker cosigned the legislation along with Sens. Peter Welch (D-Vt.) and John Hickenlooper (D-Colo.).
The Senate Committee on Health, Education, Labor and Pensions held a December hearing examining links between ultra-processed food and chronic disease during which FDA Commissioner Robert Califf called for more funding for research.
Food companies have tapped into “the same neural circuits that are involved in opioid addiction,” Califf said at the hearing.
Sanders, who presided over the hearing, said there’s “growing evidence” that “these foods are deliberately designed to be addictive,” and he asserted that ultra-processed foods have driven epidemics of diabetes and obesity, and hundreds of billions of dollars in medical expenses.
Research on food and addiction “has accumulated to the point where it’s reached a critical mass,” said Kelly Brownell, an emeritus professor at Stanford who is one of the editors of a scholarly handbook on the subject.
Attacks from three sides — lawyers, Congress, and the incoming Trump administration, all seemingly interested in taking up the fight — could lead to enough pressure to challenge Big Food and possibly spur better health outcomes in the U.S., which has the lowest life expectancy among high-income countries.
“Maybe getting rid of highly processed foods in some things could actually flip the switch pretty quickly in changing the percentage of the American public that are obese,” said Robert Redfield, a virologist who led the Centers for Disease Control and Prevention during the previous Trump administration, in remarks at a December event hosted by the Heritage Foundation, a conservative think tank.
Claims that Big Food knowingly manufactured and sold addictive and harmful products resemble the claims leveled against Big Tobacco before the landmark $206 billion settlement was reached in 1998.
“These companies allegedly use the tobacco industry’s playbook to target children, especially Black and Hispanic children, with integrated marketing tie-ins with cartoons, toys, and games, along with social media advertising,” Rene Rocha, one of the lawyers at Morgan & Morgan representing Martinez, told KFF Health News.
The 148-page Martinez lawsuit against foodmakers draws from documents made public in litigation against tobacco companies that owned some of the biggest brands in the food industry.
Similar allegations were made against opioid manufacturers, distributors, and retailers before they agreed to pay tens of billions of dollars in a 2021 settlement with states.
The FDA ultimately put restrictions on the labeling and marketing of tobacco, and the opioid epidemic led to legislation that increased access to lifesaving medications to treat addiction.
But the Trump administration’s zeal in taking on Big Food may face unique challenges.
The ability of the FDA to impose regulation is hampered in part by funding. While the agency’s drug division collects industry user fees, its division of food relies on a more limited budget determined by Congress.
Change can take time because the agency moves at what some critics call a glacial pace. Last year, the FDA revoked a regulation allowing brominated vegetable oil in food products. The agency determined in 1970 that the additive was not generally recognized as safe.
Efforts to curtail the marketing of ultra-processed food could spur lawsuits alleging that any restrictions violate commercial speech protected by the First Amendment. And Kennedy — if he is confirmed as HHS secretary — may struggle to get support from a Republican-led Congress that champions less federal regulation and a president-elect who during his previous term served fast food in the White House.
“The question is, will RFK be able to make a difference?” said David L. Katz, a doctor who founded True Health Initiative, a nonprofit group that combats public health misinformation. “No prior administration has done much in this space, and RFK is linked to a particularly anti-regulatory administration.”
Meanwhile, the U.S. population is recognized as among the most obese in the world and has the highest rate of people with multiple chronic conditions among high-income countries.
“There is a big grassroots effort out there because of how sick we are,” said Jerold Mande, who served as deputy undersecretary for food safety at the Department of Agriculture from 2009 to 2011. “A big part of it is people shouldn’t be this sick this young in their lives. You’re lucky if you get to 18 without a chronic disease. It’s remarkable.”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
This article first appeared on KFF Health News and is republished here under a Creative Commons license.
Don’t Forget…
Did you arrive here from our newsletter? Don’t forget to return to the email to continue learning!
Learn to Age Gracefully
Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails:
-
Long-Covid Patients Are Frustrated That Federal Research Hasn’t Found New Treatments
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
Erica Hayes, 40, has not felt healthy since November 2020 when she first fell ill with covid.
Hayes is too sick to work, so she has spent much of the last four years sitting on her beige couch, often curled up under an electric blanket.
“My blood flow now sucks, so my hands and my feet are freezing. Even if I’m sweating, my toes are cold,” said Hayes, who lives in Western Pennsylvania. She misses feeling well enough to play with her 9-year-old son or attend her 17-year-old son’s baseball games.
Along with claiming the lives of 1.2 million Americans, the covid-19 pandemic has been described as a mass disabling event. Hayes is one of millions of Americans who suffer from long covid. Depending on the patient, the condition can rob someone of energy, scramble the autonomic nervous system, or fog their memory, among many other http://symptoms.in/ addition to the brain fog and chronic fatigue, Hayes’ constellation of symptoms includes frequent hives and migraines. Also, her tongue is constantly swollen and dry.
“I’ve had multiple doctors look at it and tell me they don’t know what’s going on,” Hayes said about her tongue.
Estimates of prevalence range considerably, depending on how researchers define long covid in a given study, but the Centers for Disease Control and Prevention puts it at 17 million adults.
Despite long covid’s vast reach, the federal government’s investment in researching the disease — to the tune of $1.15 billion as of December — has so far failed to bring any new treatments to market.
This disappoints and angers the patient community, who say the National Institutes of Health should focus on ways to stop their suffering instead of simply trying to understand why they’re suffering.
“It’s unconscionable that more than four years since this began, we still don’t have one FDA-approved drug,” said Meighan Stone, executive director of the Long COVID Campaign, a patient-led advocacy organization. Stone was among several people with long covid who spoke at a workshop hosted by the NIH in September where patients, clinicians, and researchers discussed their priorities and frustrations around the agency’s approach to long-covid research.
Some doctors and researchers are also critical of the agency’s research initiative, called RECOVER, or Researching COVID to Enhance Recovery. Without clinical trials, physicians specializing in treating long covid must rely on hunches to guide their clinical decisions, said Ziyad Al-Aly, chief of research and development with the VA St Louis Healthcare System.
“What [RECOVER] lacks, really, is clarity of vision and clarity of purpose,” said Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress.
Now the NIH is starting to determine how to allocate an additional $662 million of funding for long-covid research, $300 million of which is earmarked for clinical trials. These funds will be allocated over the next four http://years.at/ the end of October, RECOVER issued a request for clinical trial ideas that look at potential therapies, including medications, saying its goal is “to work rapidly, collaboratively, and transparently to advance treatments for Long COVID.”
This turn suggests the NIH has begun to respond to patients. This has stirred cautious optimism among those who say that the agency’s approach to long covid has lacked urgency in the search for effective treatments.Stone calls this $300 million a down payment. She warns it’s going to take a lot more money to help people like Hayes regain some degree of health.“There really is a burden to make up this lost time now,” Stone said.
The NIH told KFF Health News and NPR via email that it recognizes the urgency in finding treatments. But to do that, there needs to be an understanding of the biological mechanisms that are making people sick, which is difficult to do with post-infectious conditions.
That’s why it has funded research into how long covid affects lung function, or trying to understand why only some people are afflicted with the condition.
Good Science Takes Time
In December 2020, Congress appropriated $1.15 billion for the NIH to launch RECOVER, raising hopes in the long-covid patient community.
Then-NIH Director Francis Collins explained that RECOVER’s goal was to better understand long covid as a disease and that clinical trials of potential treatments would come later.
According to RECOVER’s website, it has funded eight clinical trials to test the safety and effectiveness of an experimental treatment or intervention. Just one of those trials has published results.
On the other hand, RECOVER has supported more than 200 observational studies, such as research on how long covid affects pulmonary function and on which symptoms are most common. And the initiative has funded more than 40 pathobiology studies, which focus on the basic cellular and molecular mechanisms of long covid.
RECOVER’s website says this research has led to crucial insights on the risk factors for developing long covid and on understanding how the disease interacts with preexisting conditions.
It notes that observational studies are important in helping scientists to design and launch evidence-based clinical trials.
Good science takes time, said Leora Horwitz, the co-principal investigator for the RECOVER-Adult Observational Cohort at New York University. And long covid is an “exceedingly complicated” illness that appears to affect nearly every organ system, she said.
This makes it more difficult to study than many other diseases. Because long covid harms the body in so many ways, with widely variable symptoms, it’s harder to identify precise targets for treatment.
“I also will remind you that we’re only three, four years into this pandemic for most people,” Horwitz said. “We’ve been spending much more money than this, yearly, for 30, 40 years on other conditions.”
NYU received nearly $470 million of RECOVER funds in 2021, which the institution is using to spearhead the collection of data and biospecimens from up to 40,000 patients. Horwitz said nearly 30,000 are enrolled so far.
This vast repository, Horwitz said, supports ongoing observational research, allowing scientists to understand what is happening biologically to people who don’t recover after an initial infection — and that will help determine which clinical trials for treatments are worth undertaking.
“Simply trying treatments because they are available without any evidence about whether or why they may be effective reduces the likelihood of successful trials and may put patients at risk of harm,” she said.
Delayed Hopes or Incremental Progress?
The NIH told KFF Health News and NPR that patients and caregivers have been central to RECOVER from the beginning, “playing critical roles in designing studies and clinical trials, responding to surveys, serving on governance and publication groups, and guiding the initiative.”But the consensus from patient advocacy groups is that RECOVER should have done more to prioritize clinical trials from the outset. Patients also say RECOVER leadership ignored their priorities and experiences when determining which studies to fund.
RECOVER has scored some gains, said JD Davids, co-director of Long COVID Justice. This includes findings on differences in long covid between adults and kids.But Davids said the NIH shouldn’t have named the initiative “RECOVER,” since it wasn’t designed as a streamlined effort to develop treatments.
“The name’s a little cruel and misleading,” he said.
RECOVER’s initial allocation of $1.15 billion probably wasn’t enough to develop a new medication to treat long covid, said Ezekiel J. Emanuel, co-director of the University of Pennsylvania’s Healthcare Transformation Institute.
But, he said, the results of preliminary clinical trials could have spurred pharmaceutical companies to fund more studies on drug development and test how existing drugs influence a patient’s immune response.
Emanuel is one of the authors of a March 2022 covid roadmap report. He notes that RECOVER’s lack of focus on new treatments was a problem. “Only 15% of the budget is for clinical studies. That is a failure in itself — a failure of having the right priorities,” he told KFF Health News and NPR via email.
And though the NYU biobank has been impactful, Emanuel said there needs to be more focus on how existing drugs influence immune response.
He said some clinical trials that RECOVER has funded are “ridiculous,” because they’ve focused on symptom amelioration, for example to study the benefits of over-the-counter medication to improve sleep. Other studies looked at non-pharmacological interventions, such as exercise and “brain training” to help with cognitive fog.
People with long covid say this type of clinical research contributes to what many describe as the “gaslighting” they experience from doctors, who sometimes blame a patient’s symptoms on anxiety or depression, rather than acknowledging long covid as a real illness with a physiological basis.
“I’m just disgusted,” said long-covid patient Hayes. “You wouldn’t tell somebody with diabetes to breathe through it.”
Chimére L. Sweeney, director and founder of the Black Long Covid Experience, said she’s even taken breaks from seeking treatment after getting fed up with being told that her symptoms were due to her diet or mental health.
“You’re at the whim of somebody who may not even understand the spectrum of long covid,” Sweeney said.
Insurance Battles Over Experimental Treatments
Since there are still no long-covid treatments approved by the Food and Drug Administration, anything a physician prescribes is classified as either experimental — for unproven treatments — or an off-label use of a drug approved for other conditions. This means patients can struggle to get insurance to cover prescriptions.
Michael Brode, medical director for UT Health Austin’s Post-COVID-19 Program — said he writes many appeal letters. And some people pay for their own treatment.
For example, intravenous immunoglobulin therapy, low-dose naltrexone, and hyperbaric oxygen therapy are all promising treatments, he said.
For hyperbaric oxygen, two small, randomized controlled studies show improvements for the chronic fatigue and brain fog that often plague long-covid patients. The theory is that higher oxygen concentration and increased air pressure can help heal tissues that were damaged during a covid infection.
However, the out-of-pocket cost for a series of sessions in a hyperbaric chamber can run as much as $8,000, Brode said.
“Am I going to look a patient in the eye and say, ‘You need to spend that money for an unproven treatment’?” he said. “I don’t want to hype up a treatment that is still experimental. But I also don’t want to hide it.”
There’s a host of pharmaceuticals that have promising off-label uses for long covid, said microbiologist Amy Proal, president and chief scientific officer at the Massachusetts-based PolyBio Research Foundation. For instance, she’s collaborating on a clinical study that repurposes two HIV drugs to treat long covid.
Proal said research on treatments can move forward based on what’s already understood about the disease. For instance, she said that scientists have evidence — partly due to RECOVER research — that some patients continue to harbor small amounts of viral material after a covid infection. She has not received RECOVER funds but is researching antivirals.
But to vet a range of possible treatments for the millions suffering now — and to develop new drugs specifically targeting long covid — clinical trials are needed. And that requires money.
Hayes said she would definitely volunteer for an experimental drug trial. For now, though, “in order to not be absolutely miserable,” she said she focuses on what she can do, like having dinner with her http://family.at/ the same time, Hayes doesn’t want to spend the rest of her life on a beige couch.
RECOVER’s deadline to submit research proposals for potential long-covid treatments is Feb. 1.
This article is from a partnership that includes NPR and KFF Health News.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
This article first appeared on KFF Health News and is republished here under a Creative Commons license.
Don’t Forget…
Did you arrive here from our newsletter? Don’t forget to return to the email to continue learning!
Learn to Age Gracefully
Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails:
-
Will there soon be a cure for HIV?
10almonds is reader-supported. We may, at no cost to you, receive a portion of sales if you purchase a product through a link in this article.
Human immunodeficiency virus, or HIV, is a chronic health condition that can be fatal without treatment. People with HIV can live healthy lives by taking antiretroviral therapy (ART), but this medication must be taken daily in order to work, and treatment can be costly. Fortunately, researchers believe a cure is possible.
In July, a seventh person was reportedly cured of HIV following a 2015 stem cell transplant for acute myeloid leukemia. The patient stopped taking ART in 2018 and has remained in remission from HIV.
Read on to learn more about HIV, the promise of stem cell transplants, and what other potential cures are on the horizon.
What is HIV?
HIV infects and destroys the immune system’s cells, making people more susceptible to infections. If left untreated, HIV will severely impair the immune system and progress to acquired immunodeficiency syndrome (AIDS). People living with untreated AIDS typically die within three years.
People with HIV can take ART to help their immune systems recover and to reduce their viral load to an undetectable level, which slows the progression of the disease and prevents them passing the virus to others.
How can stem cell transplants cure HIV?
Several people have been cured of HIV after receiving stem cell transplants to treat leukemia or lymphoma. Stem cells are produced by the spongy tissue located in the center of some bones, and they can turn into new blood cells.
A mutation on the CCR5 gene prevents HIV from infecting new cells and creates resistance to the virus, which is why some HIV-positive people have received stem cells from donors carrying this mutation. (One person was reportedly cured of HIV after receiving stem cells without the CCR5 mutation, but further research is needed to understand how this occurred.)
Despite this promising news, experts warn that stem cell transplants can be fatal, so it’s unlikely this treatment will be available to treat people with HIV unless a stem cell transplant is needed to treat cancer. People with HIV are at an increased risk for blood cancers, such as Hodgkin lymphoma and non-Hodgkin lymphoma, which stem cell transplants can treat.
Additionally, finding compatible donors with the CCR5 mutation who share genetic heritage with patients of color can be challenging, as donors with the mutation are typically white.
What are other potential cures for HIV?
In some rare cases, people who started ART shortly after infection and later stopped treatment have maintained undetectable levels of HIV in their bodies. There have also been some people whose bodies have been able to maintain low viral loads without any ART at all.
Researchers are studying these cases in their search for a cure.
Other treatment options researchers are exploring include:
- Gene therapy: In addition to stem cell transplants, gene therapy for HIV involves removing genes from HIV particles in patients’ bodies to prevent the virus from infecting other cells.
- Immunotherapy: This treatment is typically used in cancer patients to teach their immune systems how to fight off cancer. Research has shown that giving some HIV patients antibodies that target the virus helps them reach undetectable levels of HIV without ART.
- mRNA technology: mRNA, a type of genetic material that helps produce proteins, has been used in vaccines to teach cells how to fight off viruses. Researchers are seeking a way to send mRNA to immune system cells that contain HIV.
When will there be a cure for HIV?
The United Nations and several countries have pledged to end HIV and AIDS by 2030, and a 2023 UNAIDS report affirmed that reaching this goal is possible. However, strategies to meet this goal include HIV prevention and improving access to existing treatment alongside the search for a cure, so we still don’t know when a cure might be available.
How can I find out if I have HIV?
You can get tested for HIV from your primary care provider or at your local health center. You can also purchase an at-home HIV test from a drugstore or online. If your at-home test result is positive, follow up with your health care provider to confirm the diagnosis and get treatment.
For more information, talk to your health care provider.
This article first appeared on Public Good News and is republished here under a Creative Commons license.
Don’t Forget…
Did you arrive here from our newsletter? Don’t forget to return to the email to continue learning!
Learn to Age Gracefully
Join the 98k+ American women taking control of their health & aging with our 100% free (and fun!) daily emails: