Shame and blame can create barriers to vaccination
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Understanding the stigma surrounding infectious diseases like HIV and mpox may help community health workers break down barriers that hinder access to care.
Looking back in history can provide valuable lessons to confront stigma in health care today, especially toward Black, Latine, LGBTQ+, and other historically underserved communities disproportionately affected by COVID-19 and HIV.
Public Good News spoke with Sam Brown, HIV prevention and wellness program manager at Civic Heart, a community-based organization in Houston’s historic Third Ward, to understand the effects of stigma around sexual health and vaccine uptake.
Brown shared more about Civic Heart’s efforts to provide free confidential testing for sexually transmitted infections, counseling and referrals, and information about COVID-19, flu, and mpox vaccinations, as well as the lessons they’re learning as they strive for vaccine equity.
Here’s what Brown said.
[Editor’s note: This content has been edited for clarity and length.]
PGN: Some people on social media have spread the myth that vaccines cause AIDS or other immune deficiencies when the opposite is true: Vaccines strengthen our immune systems to help protect against disease. Despite being frequently debunked, how do false claims like these impact the communities you serve?
Sam Brown: Misinformation like that is so hard to combat. And it makes the work and the path to overall community health hard because people will believe it. In the work that we do, 80 percent of it is changing people’s perspective on something they thought they knew.
You know, people don’t even transmit AIDS. People transmit HIV. So, a vaccine causing immunodeficiency doesn’t make sense.
With the communities we serve, we might have a person that will believe the myth, and because they believe it, they won’t get vaccinated. Then later, they may test positive for COVID-19.
And depending on social determinants of health, it can impact them in a whole heap of ways: That person is now missing work, they’re not able to provide for their family—if they have a family. It’s this mindset that can impact a person’s life, their income, their ability to function.
So, to not take advantage of something like a vaccine that’s affordable, or free for the most part, just because of misinformation or a misunderstanding—that’s detrimental, you know.
For example, when we talk to people in the community, many don’t know that they can get mpox from their pet, or that it’s zoonotic—that means that it can be transferred between different species or different beings, from animals to people. I see a lot of surprise and shock [when people learn this].
It’s difficult because we have to fight the misinformation and the stigma that comes with it. And it can be a big barrier.
People misunderstand. [They] think that “this is something that gay people or the LGBTQ+ community get,” which is stigmatizing and comes off as blaming. And blaming is the thing that leads us to be misinformed.
PGN: In the last couple years, your organization’s HIV Wellness program has taken on promoting COVID-19, flu, and mpox vaccines to the communities you serve. How do you navigate conversations between sexual health and infectious diseases? Can you share more about your messaging strategies?
S.B.: As we promoted positive sexual health and HIV prevention, we saw people were tired of hearing about HIV. They were tired of hearing about how PrEP works, or how to prevent HIV.
But, when we had an outbreak of syphilis in Houston just last year, people were more inclined to test because of the severity of the outbreak.
So, what our team learned is that sometimes you have to change the message to get people what they need.
We changed our message to highlight more syphilis information and saw that we were able to get more people tested for HIV because we correlated how syphilis and HIV are connected and how a person can be susceptible to both.
Using messages that the community wants and pairing them with what the community needs has been better for us. And we see that same thing with COVID-19, the flu, and RSV. Sometimes you just can’t be married to a message. We’ve had to be flexible to meet our clients where they are to help them move from unsafe practices to practices that are healthy and good for them and their communities.
PGN: You’ve mentioned how hard it is to combat stigma in your work. How do you effectively address it when talking to people one-on-one?
S.B.: What I understand is that no one wants to feel shame. What I see people respond to is, “Here’s an opportunity to do something different. Maybe there was information that you didn’t know that caused you to make a bad decision. And now here’s an opportunity to gain information so that you can make a better decision.”
People want to do what they want to do; they want to live how they want to live. And we all should be able to do that as long as it’s not hurting anyone, but also being responsible enough to understand that, you know, COVID-19 is here.
So, instead of shaming and blaming, it’s best to make yourself aware and understand what it is and how to treat it. Because the real enemy is the virus—it’s the infection, not the people.
When we do our work, we want to make sure that we come from a strengths-based approach. We always look at what a client can do, what that client has. We want to make sure that we’re empowering them from that point. So, even if they choose not to prioritize our message right now, we can’t take that personally. We’ll just use it as a chance to try a new way of framing it to help people understand what we’re trying to say.
And sometimes that can be difficult, even for organizations. But getting past that difficulty comes with a greater opportunity to impact someone else.
This article first appeared on Public Good News and is republished here under a Creative Commons license.
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The FIRST Program: Fighting Insulin Resistance with Strength Training – by Dr. William Shang
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A lot of advice about fighting insulin resistance focuses on diet. And, that’s worthwhile! How we eat does make a huge difference to our insulin responses (as does fasting). But, we expect our regular 10almonds readers either know these things now, or can read one of several very good books we’ve already reviewed about such.
This one’s different: it focuses, as the title promises, on fighting insulin resistance with strength training. And why?
It’s because of the difference that our body composition makes to our metabolism. Now, our body fat percentage is often talked about (or, less usefully but more prevalently, even if woefully misleadingly, our BMI), but Dr. Shang makes the case for it being our musculature that has the biggest impact; because of how it hastens our metabolism, and because of how it is much healthier for the body to store glycogen in muscle tissue, than just cramming whatever it can into the liver and visceral fat. It becomes relevant, then, that there’s a limit to how much glycogen can be stored in muscle tissue, and that limit is how much muscle you have.
This is not, however, 243 pages to say “lift some weights, lazybones”. Rather, he explains the relevant pathophysiology (we will be more likely to adhere to things we understand, than things we do not), and gives practical advice on exercising the different kinds of muscle fibers, arguing that the whole is greater than the sum of its parts, as well as outlining an exercise program for the gym, plus a chapter on no-gym exercises too.
The style is quite dense, which may be offputting for some, but it suffices to take one’s time and read thoughtfully; the end result is worth it.
Bottom line: if you’d like to keep insulin resistance at bay, this book is an excellent extra tool for that.
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The Philosophy Gym – by Dr. Stephen Law
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If you’d like to give those “little gray cells” an extra workout, this book is a great starting place.
Dr. Stephen Law is Director of Philosophy at the Department of Continuing Education, University of Oxford. As such, he’s no stranger to providing education that’s both attainable and yet challenging. Here, he lays out important philosophical questions, and challenges the reader to get to grips with them in a systematic fashion.
Each of the 25 questions/problems has a chapter devoted to it, and is ranked:
- Warm-up
- Moderate
- More Challenging
But, he doesn’t leave us to our own devices, nor does he do like a caricature of a philosopher and ask us endless rhetorical questions. Instead, he looks at various approaches taken by other philosophers over time, and invites the reader to try out those methods.
The real gain of this book is not the mere enjoyment of reading, but rather in taking those thinking skills and applying them in life… because most if not all of them do have real-world applications and/or implications too.
The book’s strongest point? That it doesn’t assume prior knowledge (and yet also doesn’t patronize the reader). Philosophy can be difficult to dip one’s toes into without a guide, because philosophers writing about philosophy can at first be like finding yourself at a party where you know nobody, but they all know each other.
In contrast, Law excels at giving quick, to-the-point ground-up summaries of key ideas and their progenitors.
In short: a wonderful way to get your brain doing things it might not have tried before!
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28-Day FAST Start Day-by-Day – by Gin Stephens
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We have previously reviewed Gin Stephens’ other book, “Fast. Feast. Repeat.”, so what’s so special about this one that it deserves reviewing too?
This one is all about troubleshooting the pitfalls that many people find when taking up intermittent fasting.
To be clear: the goal here is not a “28 days and yay you did it, put that behind you now”, but rather “28 days and you are now intermittently fasting easily each day and can keep it up without difficulty”. As for the difficulties that may arise early in the 28 days…
Not just issues of willpower, but also the accidental breaks. For example, some artificial sweeteners, while zero-calorie, trigger an insulin response, which breaks the fast on the metabolic level (avoiding that is the whole point of IF). Lots of little tips like that peppered through the book help the reader to stop accidentally self-sabotaging their progress.
The author does talk about psychological issues too, and also how it will feel different at first while the liver is adapting, than later when it has already depleted its glycogen reserves and the body must burn body fat instead. Information like that makes it easier to understand that some initial problems (hunger, getting “hangry”, feeling twitchy, or feeling light-headed) will last only a few weeks and then disappear.
So, understanding things like that makes a big difference too.
The style of the book is simple and clear pop-science, with lots of charts and bullet points and callout-boxes and the like; it makes for very easy reading, and very quick learning of all the salient points, of which there are many.
Bottom line: if you’ve tried intermittent fasting but struggled to make it stick, this book can help you get to where you want to be.
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Navigating the health-care system is not easy, but you’re not alone.
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Hello, dear reader!
This is my first column for Healthy Debate as a Patient Navigator. This column will be devoted to providing patients with information to help them through their journey with the health-care system and answering your questions.
Here’s a bit about me: I have been a patient partner at The Ottawa Hospital and Ottawa Hospital Research Institute since 2017, and have joined a variety of governance boards that work on patient and caregiver engagement such as the Patient Advisors Network, the Ontario Health East Region Patient and Family Advisory Council and the Equity in Health Systems Lab.
My journey as a patient partner started much before 2017 though. When I was a teenager, I was diagnosed with a cholesteatoma, a rare and chronic disease that causes the development of fatty tumors in the middle ear. I have had multiple surgeries to try to fix it but will need regular follow-ups to monitor whether the tumor returns. Because of this, I also live with an invisible disability since I have essentially become functionally deaf in one ear and often rely on a hearing aid when I navigate the world.
Having undergone three surgeries in my adolescent years, it was my experience undergoing surgery for an acute hand and wrist injury following a jet ski accident as an adult that was the catalyst for my decision to become a patient partner. There was an intriguing contrast between how I was cared for at two different health-care institutions, my age being the deciding factor at which hospital I went to (a children’s hospital or an adult one).
The most memorable example was how, as a teenager or child, you were never left alone before surgery, and nurses and staff took all the time necessary to comfort me and answer my (and my family’s) questions. I also remember how right before putting me to sleep, the whole staff initiated a surgical pause and introduced themselves and explained to me what their role was during my surgery.
None of that happened as an adult. I was left in a hallway while the operating theater was prepared, anxious and alone with staff walking by not even batting an eye. My questions felt like an annoyance to the care team; as soon as I was wheeled onto the operating room table, the anesthetist quickly put me to sleep. I didn’t even have the time to see who else was there.
Now don’t get me wrong: I am incredibly appreciative with the quality of care I received, but it was the everyday interactions with the care teams that I felt could be improved. And so, while I was recovering from that surgery, I looked for a way to help other patients and the hospital improve its care. I discovered the hospital’s patient engagement program, applied, and the rest is history!
Since then, I have worked on a host of patient-centered policy and research projects and fervently advocate that surgical teams adopt a more compassionate approach with patients before and after surgery.
I’d be happy to talk a bit more about my journey if you ask, but with that out of the way … Welcome to our first patient navigator column about patient engagement.
Conceptualizing the continuum of Patient Engagement
In the context of Canadian health care, patient engagement is a multifaceted concept that involves active collaboration between patients, caregivers, health-care providers and researchers. It involves patients and caregivers as active contributors in decision-making processes, health-care services and medical research. Though the concept is not new, the paradigm shift toward patient engagement in Canada started around 2010.
I like to conceptualize the different levels of patient engagement as a measure of the strength of the relationship between patients and their interlocutors – whether it’s a healthcare provider, administrator or researcher – charted against the duration of the engagement or the scope of input required from the patient.
Defining different levels of Patient Engagement
Following the continuum, let’s begin by defining different levels of patient engagement. Bear in mind that these definitions can vary from one organization to another but are useful in generally labelling the level of patient engagement a project has achieved (or wishes to achieve).
Patient involvement: If the strength of the relationship between patients and their interlocutors is minimal and not time consuming or too onerous, then perhaps it can be categorized as patient involvement. This applies to many instances of transactional engagement.
Patient advisory/consulting: Right in the middle of our continuum, patients can find themselves engaging in patient advisory or consulting work, where projects are limited in scope and duration or complexity, and the relationship is not as profound as a partnership.
Patient partnership: The stronger the relationship is between the patient and their interlocutor, and the longer the engagement activity lasts or how much input the patient is providing, the more this situation can be categorized as patient partnership. It is the inverse of patient involvement.
Examples of the different levels of Patient Engagement
Let’s pretend you are accompanying a loved one to an appointment to manage a kidney disease, requiring them to undergo dialysis treatment. We’ll use this scenario to exemplify what label could be used to describe the level of engagement.
Patient involvement: In our case, if your loved one – or you – fills out a satisfaction or feedback survey about your experience in the waiting room and all that needed to be done was to hand it back to the clerk or care team, then, at a basic level, you could likely label this interaction as a form of patient involvement. It can also involve open consultations around a design of a new look and feel for a hospital, or the understandability of a survey or communications product. Interactions with the care team, administrators or researchers are minimal and often transactional.
Patient advisory/consulting: If your loved one was asked for more detailed information about survey results over the course of a few meetings, this could represent patient advisory/consulting. This could mean that patients meet with program administrators and care providers and share their insights on how things can be improved. It essentially involves patients providing advice to health-care institutions from the perspective of patients, their family members and caregivers.
Patient advisors or consultants are often appointed by hospitals or academic institutions to offer insights at multiple stages of health-care delivery and research. They can help pilot an initiative based on that feedback or evaluate whether the new solutions are working. Often patient advisors are engaged in smaller-term individual projects and meet with the project team as regularly as required.
Patient partnership: Going above and beyond patient advisory, if patients have built a trusting relationship with their care team or administrators, they could feel comfortable enough to partner with them and initiate a project of their own. This could be for a project in which they study a different form of treatment to improve patient-centered outcomes (like the time it takes to feel “normal” following a session); it could be working together to identify and remove barriers for other patients that need to access that type of care. These projects are not fulfilled overnight, but require a collaborative, longstanding and trusting relationship between patients and health-care providers, administrators or researchers. It ensures that patients, regardless of severity or chronicity of their illness, can meaningfully contribute their experiences to aid in improving patient care, or develop or implement policies, pilots or research projects from start to finish.
It is leveraging that lived and living experience to its full extent and having the patient partner involved as an equal voice in the decision-making process for a project – over many months, usually – that the engagement could be labeled a partnership.
Last words
The point of this column will be to answer or explore issues or questions related to patient engagement, health communications or even provide some thoughts on how to handle a particular situation.
I would be happy to collect your questions and feedback at any time, which will help inform future columns. Just email me at [email protected] or connect with me on social media (Linked In, X / Twitter).
It’s not easy to navigate our health-care systems, but you are not alone.
This article is republished from healthydebate under a Creative Commons license. Read the original article.
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Screaming at Screens?
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I Screen, You Screen, We All Screen For…?
Dr. Kathryn Birkenbach is a postdoctoral research fellow in the Department of Neuroscience at Columbia University, and Manager of Research at Early Medical in New York.
Kathryn has things to tell us about kids’ neurological development, and screen time spent with electronic devices including phones, tablets, computers, and TVs.
From the 1960s criticism of “the gogglebox” to the modern-day critiques of “iPad babies” as a watchword of parental neglect, there’s plenty people can say against screen time, but Dr. Birkenbach tells us the that the reality is more nuanced:
Context Is Key
On a positive note”: consistent exposure to age-appropriate educational material results in quicker language acquisition than media that’s purely for entertainment purposes, or not age-appropriate.
Contrary to popular belief, children do not in fact learn by osmosis!
Interaction Is Far More Valuable Than Inaction
Kathryn advises that while adults tend to quite easily grasp things from instructional videos, the same does not go for small children.
This means that a lot of educational programming can be beneficial to small children if and only if there is an adult with them to help translate the visual into the practical!
There’s a story that does the rounds on the Internet: a young boy wanted to train his puppy, but didn’t know how. He asked, and was told “search for puppy training on YouTube”. His parents came back later and found him with his iPad, earnestly showing the training videos to the puppy.
We can laugh at the child’s naïvety, knowing that’s not how it works and the puppy will not learn that way, so why make the same mistake in turn?
❝The phenomenon known as the “video deficit effect” can be overcome, when an on-screen guide interacts with the child or a parent is physically present and draws the child’s attention to relevant information.
In other words, interaction with others appears to enhance the perceived salience of on-screen information, unlocking a child’s ability to learn from a medium which would otherwise offer no real-world benefit.❞
Screens Can Supplement, But Can’t Replace, Live Learning & Play
Sci-fi may show us “education pods” in which children learn all they need to from their screen… but according to our most up-to-date science, Dr. Birkenbach says, that simply would not work at all.
Screen time without adult interactions will typically fail to provide small children any benefit.
There is one thing it’s good at, though… attracting and keeping attention.
Thus, even a mere background presence of a TV show in the room will tend to actively reduce the time a small child spends on other activities, including live learning and exploratory play.
The attention-grabbing abilities of TV shows don’t stop at children, though! Adult caregivers will also tend to engage in fewer interactions with their children… and the interactions will be shorter and of lower quality.
In Summary:
- Young children will tend not to learn from non-interactive screen time
- Interactive screen time, ideally with a caregiver, can be educational
- Interactive screen time, not with a carer, can be beneficial (but a weak substitute)
- Interactive screen time refers to shows such as Dora The Explorer, where Dora directly addresses the viewer and asks questions…But it’s reliant on the child caring to answer!
- It can also mean interactive educational apps, provided the child does consciously interact!
- Randomly pressing things is not conscious interaction! The key here is engaging with it intelligently and thoughtfully
- A screen will take a child’s time and attention away from non-screen things: that’s a genuine measurable loss to their development!
Absolute Bottom Line:
Screens can be of benefit to small children, if and only if the material is:
- Age-Appropriate
- Educational
- Interactive
If it’s missing one of those three, it’ll be of little to no benefit, and can even harm, as it reduces the time spent on more beneficial activities.
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Montana Eyes $30M Revamp of Mental Health, Developmental Disability Facilities
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HELENA, Mont. — As part of a proposed revamping of the state’s behavioral health system, Republican Gov. Greg Gianforte’s administration is looking into moving a facility for people with developmental disabilities, beefing up renovations at the Montana State Hospital, and creating a Helena unit of that psychiatric hospital.
The changes, backers say, would fill gaps in services and help people better prepare for life outside of the locked, secure setting of the two state facilities before they reenter their own communities.
“I think part of the theme is responsibly moving people in and out of the state facilities so that we create capacity and have people in the appropriate places,” state Sen. Dave Fern (D-Whitefish) said of the proposed capital projects during a recent interview.
Fern served on the Behavioral Health System for Future Generations Commission, a panel created by a 2023 law to suggest how to spend $300 million to revamp the system. The law set aside the $300 million for improving state services for people with mental illness, substance abuse disorders, and developmental disabilities.
Gianforte’s proposed budget for the next two years would spend about $100 million of that fund on 10 other recommendations from the commission. The capital projects are separate ideas for using up to $32.5 million of the $75 million earmarked within the $300 million pool of funds for building new infrastructure or remodeling existing buildings.
The state Department of Public Health and Human Services and consultants for the behavioral health commission presented commission members with areas for capital investments in October. In December, the commission authorized state health department director Charlie Brereton to recommend the following projects to Gianforte:
- Move the 12-bed Intensive Behavior Center for people with developmental disabilities out of Boulder, possibly to either Helena or Butte, at an estimated cost of up to $13.3 million.
- Establish a “step-down” facility of about 16 beds, possibly on the campus of Shodair Children’s Hospital in Helena, to serve adults who have been committed to the Montana State Hospital but no longer need the hospital’s intensive psychiatric services.
- Invest $19.2 million to upgrade the Montana State Hospital’s infrastructure and buildings at Warm Springs, on top of nearly $16 million appropriated in 2023 for renovations already underway there in an effort to regain federal certification of the facility.
The state Architecture & Engineering Division is reviewing the health department’s cost estimates and developing a timeline for the projects so the information can be sent to the governor. Gianforte ultimately must approve the projects.
Health department officials have said they plan to take the proposals to legislative committees as needed. “With Commission recommendation and approval from the governor, the Department believes that it has the authority to proceed with capital project expenditures but must secure additional authority from the Legislature to fund operations into future biennia,” said department spokesperson Jon Ebelt.
The department outlined its facility plans to the legislature’s health and human services budget subcommittee on Jan. 22 as part of a larger presentation on the commission’s work and the 10 noncapital proposals in the governor’s budget. Time limits prevented in-depth discussion and public comment on the facility-related ideas.
One change the commission didn’t consider: moving the Montana State Hospital to a more populated area from its rural and relatively remote location near Anaconda, in southwestern Montana, in an attempt to alleviate staffing shortages.
“The administration is committed to continuing to invest in MSH as it exists today,” Brereton told the commission in October, referring to the Montana State Hospital.
The hospital provides treatment to people with mental illness who have been committed to the state’s custody through a civil or criminal proceeding. It’s been beset by problems, including the loss of federal Medicaid and Medicare funding due to decertification by the federal government in April 2022, staffing issues that have led to high use of expensive traveling health care providers, and turnover in leadership.
State Sen. Chris Pope (D-Bozeman) was vice chair of a separate committee that met between the 2023 and 2025 legislative sessions and monitored progress toward a 2023 legislative mandate to transition patients with dementia out of the state hospital. He agreed in a recent interview that improving — not moving — MSH is a top priority for the system right now.
“Right now, we have an institution that is failing and needs to be brought back into the modern age, where it is located right now,” he said after ticking off a list of challenges facing the hospital.
State Sen. John Esp (R-Big Timber) also noted at the October commission meeting that moving the hospital was likely to run into resistance in any community considered for a new facility.
Fern, the Whitefish senator, questioned in October whether similar concerns might exist for moving the Intensive Behavior Center out of Boulder. For more than 130 years, the town 30 miles south of Helena has been home, in one form or another, to a state facility for people with developmental disabilities. But Brereton said he believes relocation could succeed with community and stakeholder involvement.
The 12-bed center in Boulder serves people who have been committed by a court because their behaviors pose an immediate risk of serious harm to themselves or others. It’s the last residential building for people with developmental disabilities on the campus of the former Montana Developmental Center, which the legislature voted in 2015 to close.
Drew Smith, a consultant with the firm Alvarez & Marsal, told the commission in October that moving the facility from the town of 1,300 to a bigger city such as Helena or Butte would provide access to a larger labor pool, possibly allow a more homelike setting for residents, and open more opportunities for residents to interact with the community and develop skills for returning to their own communities.
Ideally, Brereton said, the center would be colocated with a new facility included in the governor’s proposed budget, for crisis stabilization services to people with developmental disabilities who are experiencing significant behavioral health issues.
Meanwhile, the proposed subacute facility with up to 16 beds for state hospital patients would provide a still secure but less structured setting for people who no longer need intensive treatment at Warm Springs but aren’t yet ready to be discharged from the hospital’s care. Brereton told the commission in October the facility would essentially serve as a less restrictive “extension” of the state hospital. He also said the agency would like to contract with a company to staff the subacute facility.
Health department officials don’t expect the new facility to involve any construction costs. Brereton has said the agency believes an existing building on the Shodair campus would be a good spot for it.
The state began leasing the building Nov. 1 for use by about 20 state hospital patients displaced by the current remodeling at Warm Springs — a different purpose than the proposed subacute facility.
Shodair CEO Craig Aasved said Shodair hasn’t committed to having the state permanently use the building as the step-down facility envisioned by the agency and the commission.
But Brereton said the option is attractive to the health department now that the building has been set up and licensed to serve adults.
“It seems like a natural place to start,” he told the commission in December, “and we don’t mind that it’s in our backyard here in Helena.”
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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This article first appeared on KFF Health News and is republished here under a Creative Commons license.
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