AHCJ | Association of Health Care Journalists | Covering Health
The Association of Health Care Journalists is an independent, nonprofit organization dedicated to advancing public understanding of health care issues. Its mission is to improve the quality, accuracy, and visibility of health care reporting, writing, and editing.
In the years since the passage of the Affordable Care Act (ACA), California has employed Medicaid expansion and the state health insurance marketplace – Covered California – to dramatically increase health care coverage.
Still, roughly 3 million state residents, many of them vulnerable, poor, young, old and/or undocumented remain medically uninsured. And more – far more – are dentally uninsured.
The resulting lack of access to dental care exacts a particular kind of suffering, report Yesenia Amaro and Nicole Hayden in a recent story, one of more than two dozen articles so far that are part of a series called Uncovered California.
The project, led by the University of Southern California Center for Health Journalism News Collaborative, offers reporters from news outlets across the state the chance to focus on the plight of the uninsured.
“The severe pain struck when Christian Ortega’s lower left molars decayed, causing one molar to break,” they write. “The pain was so bad that one day he had to skip his shift as a cook.”
Ortega, who did not have dental insurance, scheduled an appointment at a local dental office but decided to forgo treatment after concluding that he could not afford to pay the $4,000 estimated bill.
“I was dealing with pain because I had no money to go and get it taken care of,” said Ortega. He eventually found services at a free clinic in Fresno.
The 32-year-old father’s experience serves as a reminder of a far larger need in the state.
An estimated 5.2 million Californians, representing 14% of the state population, lack dental benefits, report Amaro and Hayden. Some are workers whose employers do not offer dental benefits. Many more are elders, covered by Medicare, which has never included routine dental coverage.
“One of the state’s 2.5 million seniors without dental insurance is Kai Kingsley of Palm Springs, a 72-year-old veteran who lives off Social Security and some money from selling his paintings,” Amaro and Hayden write.
Like Ortega, Kingsley obtained care at a free clinic but not before experiencing hurt and fear.
“It was so painful and worrisome knowing I needed care but couldn’t afford (it) no matter how much I saved up,” he said. He was so grateful to find the services he donated one of his paintings to the clinic that served him.
And while last year, California restored adult dental benefits to its Medicaid program for poor residents, some of the beneficiaries are not aware that they now have coverage. Others face difficulties finding dentists who participate in Medicaid, Amaro and Hayden write.
The Uncovered California project includes participants from newspapers from the McClatchy Corp., Gannett Co., Southern California News Group, and La Opinion, as well as broadcasters at Univision and Capital Public Radio. For more of the collaborative’s coverage, including a new story on how improvised school health clinics are bringing routine and preventive medical and dental care to California children, regardless of their legal status, see this link.
How old is too old to practice medicine? That’s a question without a definitive answer, but one of concern to health systems, patients and clinicians.
Normal age-related physical or cognitive issues don’t mean physicians or nurses should stop practicing by a certain age, but according to this new tip sheet from reporter Cheryl Clark, many doctors are seeing patients, and even performing delicate surgical procedures well into their 80s … or even 90s. On the one hand, these doctors may be the only ones available in rural or lower-income areas; they’re helping alleviate the workforce shortage. On the other hand, there’s concern they could they be putting some patients, or themselves, at risk.
Clark takes a look at some of the issues that journalists may want to tackle as they report out this story locally. And she warns, “This is not an easy story to tackle. But regardless of where you live or who your readers are, it’s an important one that could impact the supply of providers in your area. “
The American Medical Association estimates that roughly a quarter of all practicing physicians (26.6%) were over age 65 in 2017. Clark points out the rise of hospitalists as a stand-alone specialty means that community physicians have less interaction with the health systems— some may no longer even venture into a facility. That means decline, whether physical or cognitive, can be more difficult for their peers to notice.
Surgeons and other specialists may perform invasive procedures in their office or clinic, away from more obvious professional oversight. Many doctors don’t want or can’t afford, to retire. And according to Clark, they feel their years of experience often make up for any lag in cognitive function or physical slow-down.
Right now, there’s no national policy that requires physicians to be screened or evaluated past a certain age. Some AMA members think its best the organization develops its own evidenced-based policy around age issues, before one is imposed on them. There’s concern health systems could use mandatory age screenings to “get rid of” older (and higher salaried) doctors in favor of younger staff. Clark reports it’s already happening in some practices and specialties in Southern California and elsewhere. Paula Span also reported in The New York Times that some hospitals are starting to implement age cutoffs.
Reuters reported last year that more doctors are starting to agree that some kind of cognitive and physical testing, depending on specialty, is useful, but at what age? This Washington Post essay by a practicing physician in Maryland discusses his own experiences with aging, and offers some advice for patients who may have concerns.
Clark’s tip sheet walks reporters through the steps they can take to put a local spin on this issue. Number one is “get the numbers.” She provides an excellent list of resources, sources, and ideas on how to flesh out a story, along with examples of her own coverage of the issue.
One additional resource you may want to explore is this blog post from James Allen, M.D., which has numerous links to professional associations and can help you gather age-related data by specialty.
Amy Maxmen, a San-Francisco-based science reporter for Nature magazine, travels the world to cover global health topics. In 2018, her work took her to Cambodia, Myanmar and Thailand to cover the rising number of malaria deaths in Southeast Asia.
Her story “Malaria’s Ticking Time Bomb,” won first place in AHCJ’s 2018 Awards for Excellence in Health Care Journalism for a public health story published in the small market category. The article deftly blended plain English with scientific jargon to tell the story of scientists and public health workers efforts to eliminate malaria in Southeast Asia, as they contend with volatile political situations.
In the piece, Maxmen quickly gets to the point of why people should care about malaria in Southeast Asia. She says that malaria remains one of the biggest killers in low-income countries, and malaria in the region is becoming resistant to all drug treatments, stoking fears that malaria could surge globally.
About a half million people die from malaria annually, and many are children younger than five. With climate change, international travel, deforestation and urban population growth, the geography of mosquito-borne diseases is expanding and diseases like malaria threaten a growing the number of people. If more malaria parasites become resistant to treatment, more people are likely to die of the disease.
Among the scientists and public health workers that are working in the region and highlighted by Maxmen is Myaing Nyunt. She is a scientist and political dissident who fled from Myanmar’s military government in 1988, and is now a malaria researcher at Duke Global Health Institute in Durham, N.C. She returned to Myanmar to work with the Myanmar Vector-Borne Disease Control department, because of the imperative of preventing malaria. She is refreshingly frank with Maxmen and talks about the challenges of working with Myamar’s government.
Because Maxmen was on the ground in Myanmar, she was able to spend time with Nyunt and her team and see how they were trying to address malaria. In Cambodia, she was able to meet with health workers stationed in rural villages. She also met with a molecular biologist in Thailand who is working on new diagnostic tools to screen for malaria.
Her story illustrated how close the world might be to a bigger malaria outbreak.
“What I found worried me,” Maxmen told AHCJ in her awards submission. “Researchers recently discovered that diagnostic tests only detect a small fraction of symptomatic cases.”
Maxmen talked more about her story in this new “How I Did It” piece and she offers advice for those traveling on a reporting assignment.
“Make plans, but expect them to change,” she says. “If the reporting is going badly, move on. If it’s going well, stay longer.”
Meanwhile, Maxmen continues to travel. This month, she traveled to the Democratic Republic of Congo to meet with World Health Organization officials as they assessed the Ebola outbreak that had killed more than 2,000 since 2018. See her story: “Meet the Ebola workers battling the virus in a war zone.”
What do depression, diabetes, dyslexia, prosthetics, hearing loss, obesity and heart disease all have in common? All are considered disabilities or associated with increased risk of disability. About a quarter of American adults have some type of disability, according to the US Centers for Disease Control and Prevention, including two in five adults over age 65 have a disability.
Leading individual risk factors associated with disability in the U.S. include obesity, smoking, heart disease and diabetes, and rates are highest overall in the South (which also has the highest rates of those risk factors).
The majority of medical studies journalists cover involve conditions that are either considered disabilities in and of themselves or else increase the likelihood of disability. It’s therefore helpful to be familiar with resources for data on disability, whether your story is focused specifically on disability or not. Stats can also come in handy when writing about politics and policy that directly or indirectly affects people with disabilities (which is probably a lot more policy and legislation than most people realize).
A new entry in the data section of the Medical Studies Core Topic contains a wealth of resources on disability data and statistics, including sources such as the U.S. Department of Labor and Bureau of Labor Statistics, the U.S. Census Bureau, the VA, the CDC, the Social Security Disability Insurance program, Pew Research and several independent or university-based organizations.
In recent years, as medical devices have become more connected, cybersecurity experts have sounded the alarm on their vulnerabilities.
A panel at Health Journalism 2018 covered the topic, with experts encouraging reporters to ask their local hospitals about plans to safeguard medical devices from cyber threats.
Now, the Food and Drug Administration (FDA) is warning patients and health care providers that certain Medtronic MiniMed insulin pumps are being recalled due to potential cybersecurity risks. To date, there are no confirmed reports of patient harm, the FDA said.
Meanwhile, the FDA will hold a public discussion on medical device cybersecurity on Sept. 10 at its Patient Engagement Advisory Committee meeting. The committee is expected to make recommendations on what factors to consider when informing the public about cybersecurity risks.
Recommendations will also “address concerns patients have about changes to their devices to reduce cybersecurity risks as well as the role of other stakeholders such as health care providers in communicating cybersecurity risks to patients,“ according to the FDA.
The insulin pumps affected by the recall connect wirelessly to the patient’s glucose meter and a continuous glucose monitoring system, which track’s the patient’s glucose levels throughout the day. The concern is that an unauthorized person could change the insulin pump settings remotely and deliver too much or too little insulin to the patient, causing harm.
Suzanne Schwartz, M.D., deputy director of the Office of Strategic Partnerships and Technology Innovation and acting division director for All Hazards Response, Science and Strategic Partnerships in the FDA’s Center for Devices and Radiological Health, said in a statement that “any medical device connected to a communications network, like Wi-Fi, or public or home Internet, may have cybersecurity vulnerabilities that could be exploited by unauthorized users.”
Schwartz added “at the same time, it’s important to remember that the increased use of wireless technology and software in medical devices can also offer safer, more convenient, and timely health care delivery.”
The potential for harm in these examples should be clear: avoiding an induction when it’s the safer route, or skipping a highly effective form of birth control for fear of developing depression. But the final example I want to discuss is my favorite case study because it took years to recognize that maybe it’s okay to relieve the pain of infants and toddlers without putting their lungs at risk a decade later.
In the 2000s and 2010s, study after study found an unsettling link between children’s use of acetaminophen (the ingredient in Tylenol) and later childhood asthma symptoms. The issue came on my radar around my first child’s birth when my husband showed me a New York Times article about the link. (I looked for the specific article, but there were a half dozen, almost none of which included the context of other research and only one of which addressed the research countering the others.)
In short, multiplestudies found children given acetaminophen before age 1 were 2-3 times more likely to develop asthma between ages 5-9. There appeared to be a dose-response relationship too: the more acetaminophen they had, the higher their risk. Several studies concluded “that exposure to paracetamol [what acetaminophen is called in Europe, Australia and New Zealand] might be a risk factor for the development of asthma in childhood.” Otherstudies began suggesting a similar link with antibiotic use in infancy.
These studies showed a clear pattern. But it took several more years, and many more studies, before researchers started asking the question they should have asked a lot sooner: what if the reason babies needing asthma or acetaminophen was itself a risk factor for asthma? Something like, say, respiratory infections?
Indeed, as researchers revisited data sets, conducted more studies, and did meta-analyses, it emerged that the same children who took more acetaminophen and antibiotics as infants and toddlers were the same ones having more frequent respiratory infections than their peers — and respiratory infections early in life are known risk factors for asthma. And when researchers controlled for respiratory infections, the association between acetaminophen and later asthma risk vanished.
In 2013, a systematic review of 64 studies finding a link between childhood asthma and use of acetaminophen and/or antibiotics in infancy concluded, “The weight of evidence of the collected studies in our review strongly suggests that the association of antibiotics with childhood asthma reflects various forms of bias, the most prominent of which is confounding by indication.” (Researchers also began suggesting confounding by indication biased studies on use of acetaminophen during pregnancy and childhood asthma.)
Yet for years, headlines about these studies may have frightened parents out of using acetaminophen when their child was in pain or had a fever, lest they increase their child’s risk of asthma.
After three case studies, I think I can safely stop beating this drum, but just to underscore the key point: when writing about observational studies that suggest unexpected negative effects from a medication or intervention, consider what else might contribute to those effects — including the very reasons for the medication or intervention in the first place.
What can journalists learn from reading the comments that health care professionals send to federal agencies that propose new rules for health insurers? The short answer is: quite a lot.
Last year, Noam N. Levey poured over about 10,000 comments from health care provider organizations and other groups submitted to federal agencies about their concerns regarding the Trump Administration’s plans to revise the rules for short-term health insurance plans and association health plans. What Levey found was almost unanimous opposition to both proposals. In a new tip sheet, Levey explained what he found while reviewing the comments on both proposals and offered ideas that may be useful for other journalists considering doing a similar review.
The federal Department of Labor’s Employee Benefits Security Administration issued the first of the two proposals. On Jan. 5, 2018, the administration published a proposed rule for association health plans designed to make it easier for self-employed Americans and small businesses to band together to form association health plans. The federal Department of Health and Human Services published the second proposal on Feb. 21, 2018, allowing short-term, limited-duration health insurance coverage for any period of less than 12 months.
It would stretch the truth to say that Levey, who covers national health policy for the Los Angeles Times, could predict the future, but consider what happened since those two proposals became formal rules.
Since April, journalists have reported that short-term plans have harmed consumers and that some of those consumers have sued the companies issuing those plans. Levey reported, for example, that Health Insurance Innovations Inc., a company in Tampa, Fla., that promoted short-term plans, agreed to pay $3.4 million to settle a 43-state investigation of the company’s sales and marketing practices. On April 2, the LA Times published that article, “Skimpy health plans touted by Trump bring back familiar woes for consumers.”
Two months later, lawyers with the firm Levine Kellogg Lehman Schneider + Grossman in Miami and with The Doss Firm in Atlanta filed a class-action lawsuit against Health Insurance Innovations and Health Plan Intermediaries Holdings in what the lawyers alleged was a fraudulent insurance scheme. The lawsuit alleged that hundreds of thousands of consumers were defrauded because they were led to believe that their limited benefit indemnity plans and medical discount plans were major medical insurance that complied with ACA.
Reed Abelson reported for The New York Times that such complaints highlight the flaws with some types of lower-cost health insurance plans. The Association for Community Affiliated Plans and the National Alliance on Mental Illness has sued the Trump administration over relaxation of rules for these plans, she added.
Also this spring, association health plans have faced a legal challenge. In March, Katie Keith reported for Health Affairs that Judge John Bates of the federal District Court for the District of Washington, D.C., ruled that the DOL’s 2018 final rule on association health plans was unlawful. One month later, the DOL filed an appeal of the ruling.
Note that the article Levey wrote based on his deep and thorough analysis of comments from individuals and interest groups was published on May 30, 2018. It carried this headline, “Trump’s new insurance rules are panned by nearly every healthcare group that submitted formal comments.”
The oral arguments in the Texas v. United States lawsuit aiming to overturn the Affordable Care Act did not go well for backers of the health law on Tuesday. Two of the three judges on the Fifth Circuit Court of Appeals seemed ready to scrap at least pivotal chunks of the ACA. (Here’s a wrap from AP.)
But what comes next – or when it happens – is still a guessing game.
The court could strike all of the ACA, strike none of the ACA, strike portions of the ACA (including protections for pre-existing conditions), or throw the whole case out. Under almost any imaginable scenario, there will be an appeal, perhaps to the full Fifth Circuit, and to the Supreme Court. This will go on a while, quite possibly until the end of the Supreme Court session in late June 2020 – just in time for the presidential nomination conventions.
If you want to hear the full oral arguments, here’s the link. (Here and here are our two most relevant overview blog posts on the case. )
The oral arguments were covered widely, but here’s one really interesting take from Noam Levey of the Los Angeles Times. Writing just before the New Orleans proceedings, Levey noted that the Trump administration is telling “one court Obamacare is failing and another it’s thriving.” He wrote:
As they push a federal court to repeal the Affordable Care Act, Trump administration lawyers are arguing the law is no longer workable because Congress eliminated a penalty on people who don’t have health insurance.
But for months, senior administration officials and lawyers have been making the exact opposite case in other settings, a review of government reports, court filings and public statements made by Trump appointees shows.
In fact administration officials, including White House economists, this year repeatedly have hailed the strength of insurance marketplaces created by the 2010 law.
And in stark contrast to their claims in federal court in New Orleans, they have stressed that the 2017 legislation eliminating the so-called mandate penalty has had little to no impact on markets and consumers, let alone on the broader healthcare law, often called Obamacare or the ACA.
HHS and the White House, accused by Democrats of “sabotaging” the ACA, have been citing fairly stable enrollment and lower premium increases in the ACA exchanges, and arguing that the elimination of the mandate penalty had scant impact. But in the Texas case, they’ve depicted zeroing out the mandate as the death knell for the health law. It’s a good, well-reported, well-documented easy read by Levey, one of the best health journalists in the business.
Half of the nation’s 40 million family caregivers are performing complicated medical/nursing tasks for their family members and friends, including giving injections, preparing special diets, managing tube feedings, and handling medical equipment, according to a recent report from AARP. Additionally, 70% of these caregivers are dealing with the stress of managing pain relief amid a national opioid crisis.
Home Alone Revisited: Family Caregivers Providing Complex Care, builds on the original 2012 Home Alone study, which provided the first national glimpse into the challenges family or friends face when caring for an aging or ill loved one. This latest report, released this spring during the American Society on Aging conference, takes a deeper dive into the daily medical tasks family caregivers must perform — often with little to no training.
An estimated 20 million family caregivers are performing tasks usually reserved for trained professionals, such as giving injections, managing medications, managing tube feedings and dealing with incontinence issues. Many of these caregivers say they weren’t shown how to perform these functions and are learning as they go, according to Susan Reinhard, R.N., Ph.D., senior vice president and director, AARP Public Policy Institute.
“About half of family caregivers are worried about making a mistake,” Reinhard said. “We need to do a lot more across the health care system — with providers and hospitals — to help support these family caregivers.”
Many of these tasks used to be the responsibility of health professionals, but with cost containment and other issues pushing people out of the hospital sooner, it’s often left to family members to pick up the slack. Most family caregivers who perform medical/nursing tasks feel they have no choice, according to the report. Many also admit to feeling socially isolated, which can lead to increased difficulty in performing complex care due to a lack of emotional and practical support.
“We also found an interesting correlation between social isolation and income,” Reinhard said. “The higher the income, the less socially isolated people felt.” The exception was among African-American caregivers, where issues of isolation were prevalent regardless of income level. This finding flies in the face of cultural stereotypes and needs further exploration, she added.
Stress, worry, financial concerns and feeling the need to be vigilant increase as complex care demands grow, according to the report. Despite these burdens, the more medical/nursing tasks they perform, the more caregivers feel they are keeping their family member out of a nursing home. Yet caregivers are often largely on their own in learning how to perform difficult tasks, such as managing incontinence and preparing special diets. Three out of five caregivers whose family members were hospitalized in the past year report that they received instruction on how to perform medical/nursing tasks, but more work needs to be done by hospitals to identify family caregivers and provide timely notification.
The report analyzed results from a nationally representative, population-based, online survey of 2,089 family caregivers and found:
A majority of family caregivers (82%) manage medications;
Almost half (48%) prepare special diets;
Half (51%) assist with canes, walkers, or other mobility devices;
Over a third (37%) deal with wound care;
Nearly one-third (30%) manage incontinence;
Seven out of 10 family caregivers who perform medical/nursing tasks face the practical and emotional strain of managing pain.
Tasks such as preparing special diets also turned out to be highly stressful for many caregivers, the analysis found. “You think, how hard can it be, but it ranks pretty high in worry and lack of instruction,” Reinhard said, noting that shopping, reading labels, changing a loved one’s eating habits and their food choices are stressful and gets to family caregivers.
“And remember one in four caregivers are millennials, who are more likely to be working while juggling all of this,” she added.
The report concluded that hospital discharge planners, care managers and clinicians need to be more sensitive to the burdens of family caregivers and at least make sure that whoever is taking care of the patient is informed and aware of the types of tasks they will face.
“You have to anticipate questions or concerns,” said Reinhard. Caregivers often don’t know what they don’t know. While the CARE Act (Caregiver Advise, Record, Enable Act) has helped improve communication between health professionals and family members as they prepare for complex care at home, implementation across the more than 40 states that have enacted the legislation varies widely.
While caregivers receive some instruction at discharge, most said they needed more. Uncertainty about performing complex medical/nursing care adds to stress and makes them more vulnerable to mental health issues, such as depression and anxiety, according to Reinhard.
The report concluded that caregivers must be included as valuable members of the health care team in decision making, feel comfortable voicing concerns and given appropriate instruction. Health systems, policymakers and employers must offer more support for family caregivers, Reinhard said.
It’s not a partisan issue — it’s a human one, she said.
Journalists may want to explore how hospitals, nursing homes and other facilities help prepare caregivers for the tasks ahead, particularly when more medically complex care is required. How much instruction or training does a family caregiver receive? Are there follow-up visits by a home health nurse or PA? Are there support services or programs available for respite? What about emotional and mental health support?
I wrote in a previous blog about the importance of understanding confounding by indication and being sure to ask researchers about it when covering observational studies that appear to suggest a particular treatment or intervention might contribute to a specific effect. I’m passionate about this type of study bias because not considering it — which happens a LOT — can lead people to decline otherwise helpful treatments or leave them experiencing more harm and pain because of unfounded fears.
In the previous example I discussed, a belief that induction of labor increases the risk of cesarean delivery — which much research has appeared to support — may lead a pregnant woman to avoid induction when, in fact, waiting for spontaneous labor might actually be the riskier choice. This isn’t a settled question in OBGYN research, but the possibility that common wisdom (inductions increase cesarean risk) is wrong has substantial implications for how labor and delivery are managed.
Ideally, conscientious researchers should be considering this in their study design and analysis already and including relevant discussion in their limitations section. All too often, however, they don’t. So journalists must — and must be prepared to push when researchers aren’t so willing to consider this type of bias. That happened to me when I covered a study a few years ago about the possible risks of depression from hormonal birth control.
In short, the study found a correlation between hormonal contraception prescriptions and antidepressant prescriptions, from which the author concluded hormonal contraception likely causes depression in some women. Though the paper discussed dose-responserelationships, they were inconsistent and led me to question whether the apparently increased risk of depression was actually related to the birth control. (If it was, then, in theory, higher doses of hormonal birth control should have correlated with a higher risk and possibly severity of depression, but the data did not show that.)
And it wasn’t hard to think of a half dozen possible factors that contributed to confounding by indication in this study: Common times when females begin using hormonal contraception include adolescence (for acne, normalizing menstrual cycles or beginning sexual activity) and major relationship changes (starting a new relationship, getting a divorce, re-entering the dating pool after a partner’s death, etc.). These also happen to be times when depression risk is heightened. Beginning birth control could also be associated with sexual assault, which is common enough that it might actually influence the findings of a correlation study like this.
So, I asked the researcher, what if the reason these women sought contraception prescriptions is the same reason they may be at higher risk for depression? His answer left my jaw on the floor: Since sex was fun and always associated with positive experiences, it didn’t make sense that starting to have sex could have anything to do with depression. (He appeared to think — though it was hard for me to tell — that sexual assault would not be common enough to be related.) I was so stunned that I asked the question again multiple ways and pressed him. (I admit to asking at one point whether he actually knew any women in real life. Maybe not a best practice, but neither is expecting that every woman enjoys sex in all circumstances.)
Needless to say, he didn’t see confounding by indication as a possible issue at all, and I would have felt I was neglecting my job as a journalist if I didn’t consider it and get outside perspectives on how it might factor into the findings. (My conclusion in that article: It’s complicated.)
My point, again, is that journalists need to give thought to confounding to indication even when — especially when — the researchers themselves have not. This is easier to do the better you know your topic, but even if you don’t, it’s worth adding to your regular questions of outside sources, “What else could have caused these outcomes?”