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Your Vitamins are Obsolete: The Vitamer Revolution – by Dr. Sheldon Zablow
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First, what this is not:a book to tell you “throw out your vitamins and just eat these foods”.
This book focuses mainly on two vitamins in which deficiencies are common especially as we get older: B9 and B12.
So, what does the title mean? It’s not so much that your vitamins are obsolete—that would imply that they were more useful previously, which is not the case. Rather, the most common forms of vitamins B9 and B12 provided in supplements are folic acid and cyanocobalamin, respectively, which as he demonstrates with extensive research to back up his claims, cannot be easily absorbed or used especially well.
About those vitamers: a vitamer is simply a form of a vitamin—most vitamins we need can arrive in a variety of forms. In the case of vitamins B9 and B12, he advocates for ditching vitamers folic acid and cyanocobalamin, cheap as they are, and springing for bioactive vitamers L-methylfolate, methylcobalamin, and adenosylcobalamin.
He also discusses (again, just as well-evidenced as the above things) why we might struggle to get enough from our diet after a certain age. For example, if trying to get these vitamins from meat, 50% of people over 50 cannot manufacture enough stomach acid to break down that protein to release the vitamins.
And as for methyl-B12 vitamers, you might expect you can get those from meat, and technically you can, but they don’t occur in all animals, just in one kind of animal. Specifically, the kind that has the largest brain-to-body ratio. However, eating the meat of this animal can result in protein folding errors in general and Creutzfeldt–Jakob disease in particular, so the author does not recommend eating humans, however nutritionally convenient that would be.
All this means that supplementation after a certain age really can be a sensible way to do it—but do it wisely, and pick the right vitamers.
The style of the book is informationally dense, but very readable even for a layperson provided one starts at the beginning and reads forwards, as otherwise one will find oneself in a mire of terms whose explanations one missed when they were first introduced.
Bottom line: if you are over 50 and/or have any known or suspected issues with vitamins B9 and/or B12, this book becomes very important reading.
Click here to check out Your Vitamins Are Obsolete, and get your body what it needs!
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Homeopathy: Evidence So Tiny That It’s Not there?
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Homeopathy: Evidence So Tiny That It’s Not There?
Yesterday, we asked you your opinions on homeopathy. The sample size of responses was a little lower than we usually get, but of those who did reply, there was a clear trend:
- A lot of enthusiasm for “Homeopathy works on valid principles and is effective”
- Near equal support for “It may help some people as a complementary therapy”
- Very few people voted for “Science doesn’t know how it works, but it works”; this is probably because people who considered voting for this, voted for the more flexible “It may help some people as a complementary therapy” instead.
- Very few people considered it a dangerous scam and a pseudoscience.
So, what does the science say?
Well, let us start our investigation by checking out the position of the UK’s National Health Service, an organization with a strong focus on providing the least expensive treatments that are effective.
Since homeopathy is very inexpensive to arrange, they will surely want to put it atop their list of treatments, right?
❝Homeopathy is a “treatment” based on the use of highly diluted substances, which practitioners claim can cause the body to heal itself.
There’s been extensive investigation of the effectiveness of homeopathy. There’s no good-quality evidence that homeopathy is effective as a treatment for any health condition.❞
The NHS actually has a lot more to say about that, and you can read their full statement here.
But that’s just one institution. Here’s what Australia’s National Health and Medical Research Council had to say:
❝There was no reliable evidence from research in humans that homeopathy was effective for treating the range of health conditions considered: no good-quality, well-designed studies with enough participants for a meaningful result reported either that homeopathy caused greater health improvements than placebo, or caused health improvements equal to those of another treatment❞
You can read their full statement here.
The American FDA, meanwhile, have a stronger statement:
❝Homeopathic drug products are made from a wide range of substances, including ingredients derived from plants, healthy or diseased animal or human sources, minerals and chemicals, including known poisons. These products have the potential to cause significant and even permanent harm if they are poorly manufactured, since that could lead to contaminated products or products that have potentially toxic ingredients at higher levels than are labeled and/or safe, or if they are marketed as substitute treatments for serious or life-threatening diseases and conditions, or to vulnerable populations.❞
You can read their full statement here.
Homeopathy is a dangerous scam and a pseudoscience: True or False?
False and True, respectively, mostly.
That may be a confusing answer, so let’s elaborate:
- Is it dangerous? Mostly not; it’s mostly just water. However, two possibilities for harm exist:
- Careless preparation could result in a harmful ingredient still being present in the water—and because of the “like cures like” principle, many of the ingredients used in homeopathy are harmful, ranging from heavy metals to plant-based neurotoxins. However, the process of “ultra-dilution” usually removes these so thoroughly that they are absent or otherwise scientifically undetectable.
- Placebo treatment has its place, but could result in “real” treatment going undelivered. This can cause harm if the “real” treatment was critically needed, especially if it was needed on a short timescale.
- Is it a scam? Probably mostly not; to be a scam requires malintent. Most practitioners probably believe in what they are practising.
- Is it a pseudoscience? With the exception that placebo effect has been highly studied and is a very valid complementary therapy… Yes, aside from that it is a pseudoscience. There is no scientific evidence to support homeopathy’s “like cures like” principle, and there is no scientific evidence to support homeopathy’s “water memory” idea. On the contrary, they go against the commonly understood physics of our world.
It may help some people as a complementary therapy: True or False?
True! Not only is placebo effect very well-studied, but best of all, it can still work as a placebo even if you know that you’re taking a placebo… Provided you also believe that!
Science doesn’t know how it works, but it works: True or False?
False, simply. At best, it performs as a placebo.
Placebo is most effective when it’s a remedy against subjective symptoms, like pain.
However, psychosomatic effect (the effect that our brain has on the rest of our body, to which it is very well-connected) can mean that placebo can also help against objective symptoms, like inflammation.
After all, our body, directed primarily by the brain, can “decide” what immunological defenses to deploy or hold back, for example. This is why placebo can help with conditions as diverse as arthritis (an inflammatory condition) or diabetes (an autoimmune condition, and/or a metabolic condition, depending on type).
Here’s how homeopathy measures up, for those conditions:
(the short answer is “no better than placebo”)
Homeopathy works on valid principles and is effective: True or False?
False, except insofar as placebo is a valid principle and can be effective.
The stated principles of homeopathy—”like cures like” and “water memory”—have no scientific basis.
We’d love to show the science for this, but we cannot prove a negative.
However, the ideas were conceived in 1796, and are tantamount to alchemy. A good scientific attitude means being open-minded to new ideas and testing them. In homeopathy’s case, this has been done, extensively, and more than 200 years of testing later, homeopathy has consistently performed equal to placebo.
In summary…
- If you’re enjoying homeopathic treatment and that’s working for you, great, keep at it.
- If you’re open-minded to enjoying a placebo treatment that may benefit you, be careful, but don’t let us stop you.
- If your condition is serious, please do not delay seeking evidence-based medical treatment.
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Can We Side-Step Age-Related Alienation?
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When The World Moves Without Us…
We’ve written before about how reduced social engagement can strike people of all ages, and what can be done about it:
How To Beat Loneliness & Isolation
…but today we’re going to talk more about a specific aspect of it, namely, the alienation that can come with old age—and other life transitions too, but getting older is something that (unless accident or incident befall us first) all of us will definitely do.
What’s the difference?
Loneliness is a status, alienation is more of a process. It can be the alienation in the sense of an implicit “you don’t belong here” message from the world that’s geared around the average person and thus alienates those who are not that (a lack of accessibility to people with disabilities can be an important and very active example of this), and it can also be an alienation from what we’ve previously considered our “niche” in the world—the loss of purpose many people feel upon retirement fits this bill. It can even be a more generalized alienation from our younger selves; it’s easy to have a self-image that doesn’t match one’s current reality, for instance.
Read more: Estranged by Time: Alienation in the Aging Process
So, how to “un-alienate”?
To “un-alienate”, that is to say, to integrate/reintegrate, can be hard. Some things may even be outright impossible, but most will not be!
Consider how, for example, former athletes become coaches—or for that matter, how former party-goers might become party-hosts (even if the kind of “party” might change with time, give or take the pace at which we like to live our lives).
What’s important is that we take what matters the most to us, and examine how we can realistically still engage with that thing.
This is different from trying to hold on grimly to something that’s no longer our speed.
Letting go of the only thing we’ve known will always be scary; sometimes it’s for the best, and sometimes what we really need is just more of a pivot, like the examples above. The crux lies in knowing which:
- Is our relationship with the thing (whatever it may be) still working for us, or is it just bringing strife now?
- If it’s not working for us, is it because of a specific aspect that could be side-stepped while keeping the rest?
- If we’re going to drop that thing entirely (or be dropped by it, which, while cruel, also happens in life), then where are we going to land?
This latter is one where foresight is a gift, because if we bury our heads in the sand we’re going to land wherever we’re dropped, whereas if we acknowledge the process, we can make a strategic move and land on our feet.
Here’s a good pop-science article about this—it’s aimed at people around retirement age, but honestly the advice is relevant for people of all ages, and facing all manner of life transitions, e.g. career transitions (of which retirement is of course the career transition to end all career transitions), relationship transitions (including B/B/B/B: births, betrothals/break-ups, and bereavements) health transitions (usually: life-changing illnesses and/or disabilities—which again, happens to most of us if something doesn’t get us first), etc. So with all that in mind, this becomes more of a “how to reassess your life at those times when it needs reassessing”:
How to Reassess Your Life in Retirement
But that doesn’t mean that letting go is always necessary
Sometimes, the opposite! Sometimes, the age-old advice to “lean in” really is all the situation calls for, which means:
- Be ready to say “yes” to things, and if nobody’s asking, be ready to “hey, do you wanna…?” and take a “build it and they will come” approach. This includes with people of different ages, too! Intergenerational friendships can be very rewarding for all concerned, if done right. Communities that span age-ranges can be great for this—they might be about special interests (this writer has friends ranging through four generations from playing chess, for instance), they could be religious communities if we be religious, LGBT groups if that fits for us, even mutual support groups such as for specific disabilities or chronic illness if we have such—notice how the very things that might isolate us can also bring us together!
- Be open-minded to new experiences; it’s easy to get stuck in a rut of “I’ve never done that” and mistake that self-assessment for an uncritical assumption of “I’m not the kind of person who does that”. Sometimes, you really won’t be! But at least think about it and entertain the possibility, before dismissing it out of hand. And, here’s a life tip: it can be really good to (within the realms of safety, and one’s personal moral principles, of course) take an approach of “try anything once”. Even if we’re almost certain we won’t like it, and even if we then turn out to indeed not like it, it can be a refreshing experience—and now we can say “Yep, tried that, not doing that again” from a position of informed knowledge. That’s the only way we get to look back on a richly lived life of broad experiences, after all, and it is never too late for such.
- Be comfortable prioritizing quality over quantity. This goes for friends, it goes for activities, it goes for experiences. The topic of “what’s the best number of friends to have?” has been a matter of discussion since at least ancient Greek times (Plato and Aristotle examined this extensively), but whatever number we might arrive at, it’s clear that quality is the critical factor, and quantity after that is just a matter of optimizing.
In short: make sure you’re investing—in your relationships, in your areas of interest, in your community (whatever that may mean for you personally), and most of all, and never forget this: in yourself.
Take care!
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Reduce Caffeine’s Impact on Kidneys
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.
It’s Q&A Day at 10almonds!
Have a question or a request? You can always hit “reply” to any of our emails, or use the feedback widget at the bottom!
In cases where we’ve already covered something, we might link to what we wrote before, but will always be happy to revisit any of our topics again in the future too—there’s always more to say!
As ever: if the question/request can be answered briefly, we’ll do it here in our Q&A Thursday edition. If not, we’ll make a main feature of it shortly afterwards!
So, no question/request too big or small
❝Avid coffee drinker so very interested in the results Also question Is there something that you could take or eat that would prevent the caffeine from stimulating the kidneys? I tried to drink decaf from morning to night not a good result! Thanks❞
That is a good question! The simple answer is “no” (but keep reading, because all is not lost)
There’s no way (that we yet know of) to proof the kidneys against the stimulating effect of caffeine. This is especially relevant because part of caffeine’s stimulating effect is noradrenergic, and that “ren” in the middle there? It’s about the kidneys. This is just because the adrenal gland is situated next to them (actually, it’s pretty much sitting on top of them), hence the name, but it does mean that the kidneys are about the hardest thing in the body to have not effected by caffeine.
However! The effects of caffeine in general can be softened a little with l-theanine (found in tea, or it can be taken as a supplement). It doesn’t stop it from working, but it makes the curve of the effect a little gentler, and so it can reduce some unwanted side effects.
You can read more about l-theanine here:
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He Thinks His Wife Died in an Understaffed Hospital. Now He’s Trying to Change the Industry.
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For the past year, police Detective Tim Lillard has spent most of his waking hours unofficially investigating his wife’s death.
The question has never been exactly how Ann Picha-Lillard died on Nov. 19, 2022: She succumbed to respiratory failure after an infection put too much strain on her weakened lungs. She was 65.
For Tim Lillard, the question has been why.
Lillard had been in the hospital with his wife every day for a month. Nurses in the intensive care unit had told him they were short-staffed, and were constantly rushing from one patient to the next.
Lillard tried to pitch in where he could: brushing Ann’s shoulder-length blonde hair or flagging down help when her tracheostomy tube gurgled — a sign of possible respiratory distress.
So the day he walked into the ICU and saw staff members huddled in Ann’s room, he knew it was serious. He called the couple’s adult children: “It’s Mom,” he told them. “Come now.”
All he could do then was sit on Ann’s bed and hold her hand, watching as staff members performed chest compressions, desperately trying to save her life.
A minute ticked by. Then another. Lillard’s not sure how long the CPR continued — long enough for the couple’s son to arrive and take a seat on the other side of Ann’s bed, holding her other hand.
Finally, the intensive care doctor called it and the team stopped CPR. Time of death: 12:37 p.m.
Lillard didn’t know what to do in a world without Ann. They had been married almost 25 years. “We were best friends,” he said.
Just days before her death, nurses had told Lillard that Ann could be discharged to a rehabilitation center as soon as the end of the week. Then, suddenly, she was gone. Lillard didn’t understand what had happened.
Lillard said he now believes that overwhelmed, understaffed nurses hadn’t been able to respond in time as Ann’s condition deteriorated. And he has made it his mission to fight for change, joining some nursing unions in a push for mandatory ratios that would limit the number of patients in a nurse’s care. “I without a doubt believe 100% Ann would still be here today if they had staffing levels, mandatory staffing levels, especially in ICU,” Lillard said.
Last year, Oregon became the second state after California to pass hospital-wide nurse ratios that limit the number of patients in a nurse’s care. Michigan, Maine, and Pennsylvania are now weighing similar legislation.
But supporters of mandatory ratios are going up against a powerful hospital industry spending millions of dollars to kill those efforts. And hospitals and health systems say any staffing ratio regulations, however well-intentioned, would only put patients in greater danger.
Putting Patients at Risk
By next year, the United States could have as many as 450,000 fewer nurses than it needs, according to one estimate. The hospital industry blames covid-19 burnout, an aging workforce, a large patient population, and an insufficient pipeline of new nurses entering the field.
But nursing unions say that’s not the full story. There are now 4.7 million registered nurses in the country, more than ever before.
The problem, the unions say, is a hospital industry that’s been intentionally understaffing their units for years in order to cut costs and bolster profits. The unions say there isn’t a shortage of nurses but a shortage of nurses willing to work in those conditions.
The nurse staffing crisis is now affecting patient care. The number of Michigan nurses who say they know of a patient who has died because of understaffing has nearly doubled in recent years, according to a Michigan Nurses Association survey last year.
Just months before Ann Picha-Lillard’s death, nurses and doctors at the health system where she died had asked the Michigan attorney general to investigate staffing cuts they believed were leading to dangerous conditions, including patient deaths, according to The Detroit News.
But Lillard didn’t know any of that when he drove his wife to the hospital in October 2022. She had been feeling short of breath for a few weeks after she and Lillard had mild covid infections. They were both vaccinated, but Ann was immunocompromised. She suffered from rheumatoid arthritis, a condition that had also caused scarring in her lungs.
To be safe, doctors at DMC Huron Valley-Sinai Hospital wanted to keep Ann for observation. After a few days in the facility, she developed pneumonia. Doctors told the couple that Ann needed to be intubated. Ann was terrified but Lillard begged her to listen to the doctors. Tearfully, she agreed.
With Ann on a ventilator in the ICU, it seemed clear to Lillard that nurses were understaffed and overwhelmed. One nurse told him they had been especially short-staffed lately, Lillard said.
“The alarms would go off for the medications, they’d come into the room, shut off the alarm when they get low, run to the medication room, come back, set them down, go to the next room, shut off alarms,” Lillard recalled. “And that was going on all the time.”
Lillard felt bad for the nurses, he said. “But obviously, also for my wife. That’s why I tried doing as much as I could when I was there. I would comb her hair, clean her, just keep an eye on things. But I had no idea what was really going on.”
Finally, Ann’s health seemed to be stabilizing. A nurse told Lillard they’d be able to discharge Ann, possibly by the end of that week.
By Nov. 17, Ann was no longer sedated and she cried when she saw Lillard and her daughter. Still unable to speak, she tried to mouth words to her husband “but we couldn’t understand what she was saying,” Lillard said.
The next day, Lillard went home feeling hopeful, counting down the days until Ann could leave the hospital.
Less than 24 hours later, Ann died.
Lillard couldn’t wrap his head around how things went downhill so fast. Ann’s underlying lung condition, the infection, and her weakened state could have proved fatal in the best of circumstances. But Lillard wanted to understand how Ann had gone from nearly discharged to dying, seemingly overnight.
He turned his dining room table into a makeshift office and started with what he knew. The day Ann died, he remembered her medical team telling him that her heart rate had spiked and she had developed another infection the night before. Lillard said he interviewed two DMC Huron Valley-Sinai nurse administrators, and had his own doctor look through Ann’s charts and test results from the hospital. “Everybody kept telling me: sepsis, sepsis, sepsis,” he said.
Sepsis is when an infection triggers an extreme reaction in the body that can cause rapid organ failure. It’s one of the leading causes of death in U.S. hospitals. Some experts say up to 80% of sepsis deaths are preventable, while others say the percentage is far lower.
Lives can be saved when sepsis is caught and treated fast, which requires careful attention to small changes in vital signs. One study found that for every additional patient a nurse had to care for, the mortality rate from sepsis increased by 12%.
Lillard became convinced that had there been more nurses working in the ICU, someone could have caught what was happening to Ann.
“They just didn’t have the time,” he said.
DMC Huron Valley-Sinai’s director of communications and media relations, Brian Taylor, declined a request for comment about the 2022 staffing complaint to the Michigan attorney general.
Following the Money
When Lillard asked the hospital for copies of Ann’s medical records, DMC Huron Valley-Sinai told him he’d have to request them from its parent company in Texas.
Like so many hospitals in recent years, the Lillards’ local health system had been absorbed by a series of other corporations. In 2011, the Detroit Medical Center health system was bought for $1.5 billion by Vanguard Health Systems, which was backed by the private equity company Blackstone Group.
Two years after that, in 2013, Vanguard itself was acquired by Tenet Healthcare, a for-profit company based in Dallas that, according to its website, operates 480 ambulatory surgery centers and surgical hospitals, 52 hospitals, and approximately 160 additional outpatient centers.
As health care executives face increasing pressure from investors, nursing unions say hospitals have been intentionally understaffing nurses to reduce labor costs and increase revenue. Also, insurance reimbursements incentivize keeping nurse staffing levels low. “Hospitals are not directly reimbursed for nursing services in the same way that a physician bills for their services,” said Karen Lasater, an associate professor of nursing in the Center for Health Outcomes and Policy Research at the University of Pennsylvania. “And because hospitals don’t perceive nursing as a service line, but rather a cost center, they think about nursing as: How can we reduce this to the lowest denominator possible?” she said.
Lasater is a proponent of mandatory nurse ratios. “The nursing shortage is not a pipeline problem, but a leaky bucket problem,” she said. “And the solutions to this crisis need to address the root cause of the issue, which is why nurses are saying they’re leaving employment. And it’s rooted in unsafe staffing. It’s not safe for the patients, but it’s also not safe for nurses.”
A Battle Between Hospitals and Unions
In November, almost one year after Ann’s death, Lillard told a room of lawmakers at the Michigan State Capitol that he believes the Safe Patient Care Act could save lives. The health policy committee in the Michigan House was holding a hearing on the proposed act, which would limit the amount of mandatory overtime a nurse can be forced to work, and require hospitals to make their staffing levels available to the public.
Most significantly, the bills would require hospitals to have mandatory, minimum nurse-to-patient ratios. For example: one nurse for every patient in the ICU; one for every three patients in the emergency room; a nurse for triage; and one nurse for every four postpartum birthing patients and well-baby care.
Efforts to pass mandatory ratio laws failed in Washington and Minnesota last year after facing opposition from the hospital industry. In Minnesota, the Minnesota Nurses Association accused the Mayo Clinic of using “blackmail tactics”: Mayo had told lawmakers it would pull billions of dollars in investment from the state if mandatory ratio legislation passed. Soon afterward, lawmakers removed nurse ratios from the legislation.
While Lillard waited for his turn to speak to Michigan lawmakers about the Safe Patient Care Act in November, members of the Michigan Nurses Association, which says it represents some 13,000 nurses, told lawmakers that its units were dangerously understaffed. They said critical care nurses were sometimes caring for up to 11 patients at a time.
“Last year I coded someone in an ICU for 10 minutes, all alone, because there was no one to help me,” said the nurses association president and registered nurse Jamie Brown, reading from another nurse’s letter.
“I have been left as the only specially trained nurse to take care of eight babies on the unit: eight fragile newborns,” said Carolyn Clemens, a registered nurse from the Grand Blanc area of Michigan.
Nikia Parker said she has left full-time emergency room nursing, a job she believes is her calling. After her friend died in the hospital where she worked, she was left wondering whether understaffing may have contributed to his death.
“If the Safe Patient Care Act passed, and we have ratios, I’m one of those nurses who would return to the bedside full time,” Parker told lawmakers. “And so many of my co-workers who have left would join me.”
But not all nurses agree that mandatory ratios are a good idea.
While the American Nurses Association supports enforceable ratios as an “essential approach,” that organization’s Michigan chapter does not, saying there may not be enough nurses in the state to satisfy the requirements of the Safe Patient Care Act.
For some lawmakers, the risk of collateral damage seems too high. State Rep. Graham Filler said he worries that mandating ratios could backfire.
“We’re going to severely hamper health care in the state of Michigan. I’m talking closed wards because you can’t meet the ratio in a bill. The inability for a hospital to treat an emergent patient. So it feels kind of to me like a gamble we’re taking,” said Filler, a Republican.
Michigan hospitals are already struggling to fill some 8,400 open positions, according to the Michigan Health & Hospital Association. That association says that complying with the Safe Patient Care Act would require hiring 13,000 nurses.
Every major health system in the state signed a letter opposing mandatory ratios, saying it would force them to close as many as 5,100 beds.
Lillard watched the debate play out in the hearing. “That’s a scare tactic, in my opinion, where the hospitals say we’re going to have to start closing stuff down,” he said.
He doesn’t think legislation on mandatory ratios — which are still awaiting a vote in the Michigan House’s health policy committee — are a “magic bullet” for such a complex, national problem. But he believes they could help.
“The only way these hospitals and the administrations are gonna make any changes, and even start moving towards making it better, is if they’re forced to,” Lillard said.
Seated in the center of the hearing room in Lansing, next to a framed photo of Ann, Lillard’s hands shook as he recounted those final minutes in the ICU.
“Please take action so that no other person or other family endures this loss,” he said. “You can make a difference in saving lives.”
Grief is one thing, Lillard said, but it’s another thing to be haunted by doubts, to worry that your loved one’s care was compromised before they ever walked through the hospital doors. What he wants most, he said, is to prevent any other family from having to wonder, “What if?”
This article is from a partnership that includes Michigan Public, 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.
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Cancer is increasingly survivable – but it shouldn’t depend on your ability to ‘wrangle’ the health system
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One in three of us will develop cancer at some point in our lives. But survival rates have improved to the point that two-thirds of those diagnosed live more than five years.
This extraordinary shift over the past few decades introduces new challenges. A large and growing proportion of people diagnosed with cancer are living with it, rather than dying of it.
In our recently published research we examined the cancer experiences of 81 New Zealanders (23 Māori and 58 non-Māori).
We found survivorship not only entailed managing the disease, but also “wrangling” a complex health system.
Surviving disease or surviving the system
Our research focused on those who had lived longer than expected (four to 32 years since first diagnosis) with a life-limiting or terminal diagnosis of cancer.
Common to many survivors’ stories was the effort it took to wrangle the system or find others to advocate on their behalf, even to get a formal diagnosis and treatment.
By wrangling we refer to the practices required to traverse complex and sometimes unwelcoming systems. This is an often unnoticed but very real struggle that comes on top of managing the disease itself.
The common focus of the healthcare system is on symptoms, side effects of treatment and other biological aspects of cancer. But formal and informal care often falls by the wayside, despite being key to people’s everyday experiences.
Survival is often linked to someone’s social connections and capacity to access funds. Getty Images The inequities of cancer survivorship are well known. Analyses show postcodes and socioeconomic status play a strong role in the prevalence of cancer and survival.
Less well known, but illustrated in our research, is that survival is also linked to people’s capacity to manage the entire healthcare system. That includes accessing a diagnosis or treatment, or identifying and accessing alternative treatments.
Survivorship is strongly related to material resources, social connections, and understandings of how the health system works and what is available. For instance, one participant who was contemplating travelling overseas to get surgery not available in New Zealand said:
We don’t trust the public system. So thankfully we had private health insurance […] But if we went overseas, health insurance only paid out to $30,000 and I think the surgery was going to be a couple of hundred thousand. I remember Dad saying and crying and just being like, I’ll sell my business […] we’ll all put in money. It was really amazing.
Assets of survivorship
In New Zealand, the government agency Pharmac determines which medications are subsidised. Yet many participants were advised by oncologists or others to “find ways” of taking costly, unsubsidised medicines.
This often meant finding tens of thousands of dollars with no guarantees. Some had the means, but for others it meant drawing on family savings, retirement funds or extending mortgages. This disproportionately favours those with access to assets and influences who survives.
But access to economic capital is only one advantage. People also have cultural resources – often described as cultural capital.
In one case, a participant realised a drug company was likely to apply to have a medicine approved. They asked their private oncologist to lobby on their behalf to obtain the drug through a compassionate access scheme, without having to pay for it.
Others gained community support through fundraising from clubs they belonged to. But some worried about where they would find the money, or did not want to burden their community.
I had my doctor friend and some others that wanted to do some public fundraising. But at the time I said, “Look, most of the people that will be contributing are people from my community who are poor already, so I’m not going to do that option”.
Accessing alternative therapies, almost exclusively self-funded, was another layer of inequity. Some felt forced to negotiate the black market to access substances such as marijuana to treat their cancer or alleviate the side effects of orthodox cancer treatment.
Cultural capital is not a replacement for access to assets, however. Māori survivorship was greatly assisted by accessing cultural resources, but often limited by lack of material assets.
Persistence pays
The last thing we need when faced with the possibility of cancer is to have to push for formal diagnosis and care. Yet this was a common experience.
One participant was told nothing could be found to explain their abdominal pain – only to find later they had pancreatic cancer. Another was told their concerns about breathing problems were a result of anxiety related to a prior mental health history, only to learn later their earlier breast cancer had spread to their lungs.
Persistence is another layer of wrangling and it often causes distress.
Once a diagnosis was given, for many people the public health system kicked in and delivered appropriate treatment. However, experiences were patchy and variable across New Zealand.
Issues included proximity to hospitals, varying degrees of specialisation available, and the requirement of extensive periods away from home and whānau. This reflects an ongoing unevenness and lack of fairness in the current system.
When facing a terminal or life-limiting diagnosis, the capacity to wrangle the system makes a difference. We shouldn’t have to wrangle, but facing this reality is an important first step.
We must ensure it doesn’t become a continuing form of inequity, whereby people with access to material resources and social and cultural connections can survive longer.
Kevin Dew, Professor of Sociology, Te Herenga Waka — Victoria University of Wellington; Alex Broom, Professor of Sociology & Director, Sydney Centre for Healthy Societies, University of Sydney; Chris Cunningham, Professor of Maori & Public Health, Massey University; Elizabeth Dennett, Associate Professor in Surgery, University of Otago; Kerry Chamberlain, Professor of Social and Health Psychology, Massey University, and Richard Egan, Associate Professor in Health Promotion, University of Otago
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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