Evangelical minister Eddie Hyatt believes in the healing power of prayer but “also the medical approach.” So on a February evening a week before scheduled prostate surgery, he had his sore throat checked out at an emergency room near his home in Grapevine, Texas.
A doctor confirmed that Hyatt had covid-19 and sent him to CVS with a prescription for the antiviral drug Paxlovid, the generally recommended medicine to fight covid. Hyatt handed the pharmacist the script, but then, he said, “She kept avoiding me.”
She finally looked up from her computer and said, “It’s $1,600.”
The generally healthy 76-year-old went out to the car to consult his wife about their credit card limits. “I don’t think I’ve ever spent more than $20 on a prescription,” the astonished Hyatt recalled.
That kind of sticker shock has stunned thousands of sick Americans since late December, as Pfizer shifted to commercial sales of Paxlovid. Before then, the federal government covered the cost of the drug.
The price is one reason Paxlovid is not reaching those who need it most. And patients who qualify for free doses, which Pfizer offers under an agreement with the federal government, often don’t realize it or know how to get them.
“If you want to create a barrier to people getting a treatment, making it cost a lot is the way to do it,” said William Schaffner, a professor at Vanderbilt University School of Medicine and spokesperson for the National Foundation for Infectious Diseases.
Public and medical awareness of Paxlovid’s benefits is low, and putting people through an application process to get the drug when they’re sick is a non-starter, Schaffner said. Pfizer says it takes only five minutes online.
It’s not an easy drug to use. Doctors are wary about prescribing it because of dangerous interactions with common drugs that treat cholesterol, blood clots, and other conditions. It must be taken within five days of the first symptoms. It leaves a foul taste in the mouth. In one study, 1 in 5 patients reported “rebound” covid symptoms a few days after finishing the medicine — though rebound can also occur without Paxlovid.
A recent JAMA Network study found that sick people 85 and older were less likely than younger Medicare patients to get covid therapies like Paxlovid. The drug might have prevented up to 27,000 deaths in 2022 if it had been allocated based on which patients were at highest risk from covid. Nursing home patients, who account for around 1 in 6 U.S. covid deaths, were about two-thirds as likely as other older adults to get the drug.
Shrunken confidence in government health programs is one reason the drug isn’t reaching those who need it. In senior living facilities, “a lack of clear information and misinformation” are “causing residents and their families to be reluctant to take the necessary steps to reduce covid risks,” said David Gifford, chief medical officer for an association representing 14,000 health care providers, many in senior care.
The anti-vaxxers spreading falsehoods about vaccines have targeted Paxlovid as well. Some call themselves anti-paxxers.
“Proactive and health-literate people get the drug. Those who are receiving information more passively have no idea whether it’s important or harmful,” said Michael Barnett, a primary care physician at Brigham and Women’s Hospital and an associate professor at Harvard, who led the JAMA Network study.
In fact, the drug is still free for those who are uninsured or enrolled in Medicare, Medicaid, or other federal health programs, including those for veterans.
That’s what rescued Hyatt, whose Department of Veterans Affairs health plan doesn’t normally cover outpatient drugs. While he searched on his phone for a solution, the pharmacist’s assistant suddenly appeared from the store. “It won’t cost you anything!” she said.
As Hyatt’s case suggests, it helps to know to ask for free Paxlovid, although federal officials say they’ve educated clinicians and pharmacists — like the one who helped Hyatt — about the program.
“There is still a heaven!” Hyatt replied. After he had been on Paxlovid for a few days his symptoms were gone and his surgery was rescheduled.
About that $1,390 list price
Pfizer sold the U.S. government 23.7 million five-day courses of Paxlovid, produced under an FDA emergency authorization, in 2021 and 2022, at a price of around $530 each.
Under the new agreement, Pfizer commits to provide the drug for the beneficiaries of the government insurance programs. Meanwhile, Pfizer bills insurers for some portion of the $1,390 list price. Some patients say pharmacies have quoted them prices of $1,600 or more.
How exactly Pfizer arrived at that price isn’t clear. Pfizer won’t say. A Harvard study last year estimated the cost of producing generic Paxlovid at about $15 per treatment course, including manufacturing expenses, a 10% profit markup, and 27% in taxes.
Pfizer reported $12.5 billion in Paxlovid and covid vaccine sales in 2023, after a $57 billion peak in 2022. The company’s 2024 Super Bowl ad, which cost an estimated $14 million to place, focused on Pfizer’s cancer drug pipeline, newly reinforced with its $43 billion purchase of biotech company Seagen. Unlike some other recent oft-aired Pfizer ads (“If it’s covid, Paxlovid”), it didn’t mention covid products.
Connecting with patients
The other problem is getting the drug where it is needed. “We negotiated really hard with Pfizer to make sure that Paxlovid would be available to Americans the way they were accustomed to,” Department of Health and Human Services Secretary Xavier Becerra told reporters in February. “If you have private insurance, it should not cost you much money, certainly not more than $100.”
Yet in nursing homes, getting Paxlovid is particularly cumbersome, said Chad Worz, CEO of the American Society of Consultant Pharmacists, specialists who provide medicines to care homes.
If someone in long-term care tests positive for covid, the nurse tells the physician, who orders the drug from a pharmacist, who may report back that the patient is on several drugs that interact with Paxlovid, Worz said. Figuring out which drugs to stop temporarily requires further consultations while the time for efficacious use of Paxlovid dwindles, he said.
His group tried to get the FDA to approve a shortcut similar to the standing orders that enable pharmacists to deliver anti-influenza medications when there are flu outbreaks in nursing homes, Worz said. “We were close,” he said, but “it just never came to fruition.” “The FDA is unable to comment,” spokesperson Chanapa Tantibanchachai said.
Los Angeles County requires nursing homes to offer any covid-positive patient an antiviral, but the Centers for Medicare & Medicaid Services, which oversees nursing homes nationwide, has not issued similar guidance. “And this is a mistake,” said Karl Steinberg, chief medical officer for two nursing home chains with facilities in San Diego County, which also has no such mandate. A requirement would ensure the patient “isn’t going to fall through the cracks,” he said.
While it hasn’t ordered doctors to prescribe Paxlovid, CMS on Jan. 4 issued detailed instructions to health insurers urging swift approval of Paxlovid prescriptions, given the five-day window for the drug’s efficacy. It also “encourages” plans to make sure pharmacists know about the free Paxlovid arrangement.
Current covid strains appear less virulent than those that circulated earlier in the pandemic, and years of vaccination and covid infection have left fewer people at risk of grave outcomes. But risk remains, particularly among older seniors, who account for most covid deaths, which number more than 13,500 so far this year in the U.S.
Steinberg, who sees patients in 15 residences, said he orders Paxlovid even for covid-positive patients without symptoms. None of the 30 to 40 patients whom he prescribed the drug in the past year needed hospitalization, he said; two stopped taking it because of nausea or the foul taste, a pertinent concern in older people whose appetites already have ebbed.
Steinberg said he knew of two patients who died of covid in his companies’ facilities this year. Neither was on Paxlovid. He can’t be sure the drug would have made a difference, but he’s not taking any chances. The benefits, he said, outweigh the risks.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Researchers of a recent study published in the British Journal of Sports Medicine investigated the relationship between daily step count and cardiovascular disease and mortality. They also investigated whether prolonged sedentary behavior affects the ideal number of daily steps.
Healthcare specialists urge increasing daily steps to minimize mortality and morbidity since prolonged sedentary behavior is related to an increased risk of death and cardiovascular disease. However, present research on daily stepping is limited and does not address whether sedentary time influences the relationship between mortality and CVD. With the emergence of wearable devices, simplified health information may assist individuals in self-monitoring and setting objectives.
In the present device-based cohort study, researchers investigated the effect of prolonged sedentary behavior on the dose-response of daily steps linked to any-cause mortality and CVD risk.
The researchers used United Kingdom Biobank data from individuals aged 40 to 69 years recruited from 2006 to 2010 to perform a dose-response assessment of total steps each day across high (≥10.50 hours per day) and low (less than 10.50 hours per day) inactive period (as described by the inflection point for the absolute risk of inactivity time with the study outcomes). They ascertained new-onset cardiovascular disease and mortality through October 31, 2021.
Participants completed digital questionnaires and underwent physical examinations. The researchers excluded individuals with prior CVD or cancer diagnoses, missing covariate data, or events within a year of accelerometer assessments. Between 2013 and 2015, 103,684 participants wore accelerometers on their wrists for ≥16 hours each day for ≥3.0 days to assess physical activity, classified using accelerometer-based machine learning models.
The researchers followed Welsh and English participants through September 30, 2021, and Scottish participants through October 31, 2021, using mortality data from the NHS National Records and Central Register of Scotland and NHS Digital of Wales and England. They obtained hospitalization data from the Hospital Episode Statistics (HES) database.
The researchers determined the dose-response risk for any-cause mortality and new-onset cardiovascular disease per 10,000 individual years using Cox proportional hazards regression models to estimate the hazard ratios (HRs). Study covariates included age, gender, educational level, ethnicity, smoking habits, alcohol intake, vegetable and fruit intake, parental cardiovascular disease and cancer history, and medications. In sensitivity analyses, they included clinical variables like glycated hemoglobin, waist circumference, low- and high-density lipoprotein, blood pressure, and triglyceride levels. They also performed joint association evaluations using 2,200 daily steps as the reference.
Results
Over seven years, the study of 72,174 individuals found 1,633 deaths and 6,190 cardiovascular disease events. High inactivity duration increased the likelihood of smoking, hypertension, cholesterol medication use, and waist circumference. Daily step counts among individuals with low and high sedentary times were 8,362 and 4,829, respectively. Compared to the reference of 2,200 steps per day, the optimum dose for any-cause mortality varied from 9,000 to 10,500 daily steps for the high (HR, 0.6) and low (HR, 0.7) sedentary periods.
In the high inactive duration category, fewer than 4,000 steps per day were related to a 5.4% crude death risk, whereas a step count exceeding 8,000 steps per day yielded a crude risk of 3.1%. The comparable risk for individuals with low sedentary times was 3.7% and 2.3%, respectively. Among highly inactive individuals, the curve bottom was observed at 9,000 steps per day (HR, 0.6), compared to 2,200. The minimum dosage was 4,100 steps per day (HR, 0.8).
The researchers found an attenuated step-per-day dosage-response relationship among subjects with low inactive periods, with the curve nadir at 10,300 daily steps (HR, 0.7) and the least at 4,400 steps/day. The combined dose-response evaluation revealed consistent curve nadir and least dosage values across sedentary durations, with comparable mortality risk from 6,000 to 9,500 steps per day.
For new-onset cardiovascular disease, the researchers found the least risk at 9,700 steps per day for both high (HR, 0.8) and low (HR, 0.7) sedentary times. They discovered that low-sedentary individuals had a reduced CVD risk for similar steps per day to very sedentary individuals. The lowest step count was 4,300 steps per day for low and high inactivity hours, with HRs of 0.86 and 0.9. When the daily step count exceeded 3,700, the combined dose-response analysis revealed less inactive time linked to a lower CVD and mortality risk for a similar daily step count as high inactivity time. In a cause-specific investigation, the optimal dosage was around 9600 steps per day for high-sedentary time and 9,800 steps daily for low inactive duration.
The study findings showed that doing more than 2,200 steps daily reduces mortality and cardiovascular disease risk in high- and low-sedentary individuals. Steps of 9,000 to 10,500 per day had the least mortality risk, regardless of the period of inactivity. Low inactive duration resulted in a 10% decrease in risk for the same number of daily steps. The study underlines the importance of increasing daily steps, particularly among very sedentary individuals, and determined that the optimal dosage to reduce mortality and CVD risk is between 9000 and 10,500 steps per day.
Journal reference:
Matthew Ahmadi, Rezende, Gerson Ferrari, Borja Cruz, I-Min Lee, and Emmanuel Stamataki. Leandro. Do the associations of daily steps with mortality and incident cardiovascular disease differ by sedentary time levels? A device-based cohort study, DOI: 10.1136/bjsports-2023-107221, https://bjsm.bmj.com/content/early/2024/01/24/bjsports-2023-107221
A new approach to menopause that better prepares and supports women during midlife is needed – going beyond medical treatments, to empower women using high-quality information on symptoms and treatments, empathic clinical care and workplace adjustments as required, says a new four paper Series published in The Lancet.
The misconception of menopause as always being a medical issue which consistently heralds a decline in physical and mental health should be challenged across the whole of society. Many women live rewarding lives during and after menopause, contributing to work, family life and the wider society. Changing the narrative to view menopause as part of healthy aging may better empower women to navigate this life stage and reduce fear and trepidation amongst those who have yet to experience it.”
Martha Hickey, Series Co-Author, Professor, University of Melbourne and Royal Women’s Hospital, Melbourne
She continues, “The experience of menopause differs for every person. Our Series calls for an individualized approach where women are empowered with accurate, consistent and impartial information to make informed decisions which are right for them over the menopause transition. This may include taking menopause hormone therapy (aka HRT) for symptoms such as hot flushes and night sweats, which can range from mild to extremely debilitating, after a discussion with their doctor about the risks and benefits. Whilst some women may also choose psychological therapies such as cognitive behavioral therapy to reduce the psychological impact of hot flushes and night sweats and improve sleep.”
Menopause as a part of healthy aging
In many societies the topic of menopause has long been a taboo subject. Now, countries such as the UK, the USA and Australia are experiencing a ‘menopause moment’, with more open discussion across politics, workplaces and the media.
Whilst welcoming the increase in awareness of menopause, the Series’ authors raise concern about the media’s tendency to focus on extreme negative experiences of menopause, depicting it as an unfortunate and distressing experience heralding a critical downturn in women’s health which can only be solved by hormone replacement.
“Whilst it’s certainly the case that some women have extremely negative experiences of menopause and benefit from hormone therapies, that isn’t the whole picture. The reality is much more complex and varied, with some women reporting neutral experiences and others highlighting good aspects, such as freedom from menstruation and menstrual pain. Menopause is having a cultural moment, and this is an opportunity for it to be recognised as a natural part of healthy ageing for women which, with the right preparation and support, is not something to fear,” says Dr Lydia Brown, University of Melbourne.
There is a widely held belief that menopause is associated with poor mental health, however a review of 12 studies, published as part of the Series, which investigates the association between the menopause transition and depression does not confirm this. Two of the 12 studies report increased depressive symptoms over menopause, but three found no such increase and the remaining seven studies report mixed results. After reviewing these studies and others, the Series’ experts conclude there is no robust evidence that risk of anxiety, bipolar disorder, psychosis or suicide increases for all women over the menopause transition.
Empowered women with support across society
The Series calls for healthcare professionals, researchers, workplaces, and wider society to support the empowerment of women during menopause, ensuring they have the knowledge and self determination to make informed decisions and can seek effective help if needed.
Healthcare workers can support their patients by validating their experiences and providing balanced and consistent information about symptoms and treatment options if required, encouraging women to discuss their individual preferences to reach shared decisions.
A review of evidence on menopause symptoms highlights that hot flushes and/or night sweats affect up to 80% of women, with over a third (38%) describing these symptoms as moderate to severe at age 50 years.
The most effective treatment for hot flushes and night sweats is hormone therapy – often referred to as Menopausal Hormone Therapy (MHT) or Hormone Replacement Therapy (HRT). Treating hot flushes may also improve sleep and mood and MHT prevents fractures in weak bones. However, evidence on the benefit of menopause hormone therapy on other symptoms associated with menopause and ageing in women is lacking.
“There are several medications for menopause symptoms available as prescriptions that can be crucial tools in helping some women manage hot flushes and night sweats, possibly also leading to improved sleep and quality of life. These include menopause hormone therapy and non-hormonal alternatives, including newer agents targeting the neurokinin receptor such as fezolinetant. Information about these treatments, their benefits, risks, and comparative effectiveness should be made readily available to women seeking medication with the support of healthcare professionals. MHT is the best-known medication and data suggests it’s slightly more effective than alternative medications for treating hot flushes and night sweats. However, no medication can reliably resolve all negative experiences during menopause and commercial interests have influenced how MHT is presented – overshadowing evidence-based alternative options,” says Dr Andrea La Croix, University of California San Diego Herbert Wertheim School of Public Health and Human Longevity Science.
“As well as menopausal hormone therapy, clinicians should discuss additional ways to manage some menopausal symptoms, such as cognitive behavior therapy for hot flushes and night sweats. CBT may also reduce stress and improve sleep and mood. Lifestyle changes addressing diet, smoking and exercise may additionally benefit sleep and mood and improve long-term health. Some don’t wish to take menopause hormone treatment unless their symptoms are severe and prefer to use other approaches. Our Series is all about increasing awareness of evidence-based options for women, so they can choose how they wish to navigate menopause, free from judgment and stigma,” adds Professor Myra Hunter, King’s College London.
Unfortunately, commercial interests, such as organizations who are marketing menopause products to consumers including pharmaceutical companies and private providers, have strongly influenced media messaging about menopause and MHT. In this messaging, across both news media and social media, the small but serious risks of MHT are often downplayed or ignored. This Series argues that women should have access to accurate and evidence-based information about menopause in a form they can understand, created without undue commercial influence, such as the NIH funded My Meno Plan website in the USA.
The authors also call for more research into aspects of menopause that are a priority for women. For example, a global Menopause Priority Setting Partnership is underway across more than 40 countries to develop a new, patient-focused research agenda.
Workplaces, by the creation of open, inclusive and supportive cultures, have a role to play in supporting women during menopause. According to the UK Health and Safety Executive, women aged 45-54 report more work-related stress than men or women of any other age group, associated with high job demands, lack of control and lack of support. A qualitative study of 137 women reported that women want their managers to be informed and empathetic about menopause and understand how the work environment might exacerbate their symptoms.
The authors highlight how, through resources such Menopause at Work, employers can implement evidence-based and practical policies to support their employees including via education, conversations and flexible working hours.
In addition to clinicians, researchers and workplaces, the authors highlight the need for a substantial societal shift in the views of midlife and older women, with a greater appreciation of their considerable contribution to society, their skills in the paid and unpaid workforce and how they often care for families across generations,
“There is a lot we can learn about attitudes to menopause and growing older in general from communities, such as many Asian cultures, where ageing in women confers respect and status, rather than stigma. Everyone can play a part in shifting society’s view of older women by engaging in conversation – such as those organized by the Menopause Cafe where people of all genders and ages gather to discuss menopause and share tips, questions and experiences,” says Rachel Weiss (not an author), founder of Menopause Cafe charity.
She continues, “The pendulum has swung from ‘put up and shut up’ about menopause to sensationalizing it. It’s good that we are talking more about menopause, now we need to swing the pendulum to the middle and normalize menopause, so that anyone who wants to talk about it can, so that people are not scared of it and so that a diverse experience of menopause is depicted in the media, not just celebrity horror stories.”
Some women need specific care
Globally, around 10% of women experience menopause prematurely (under age 40) or early (between the ages of 40 and 44). There are often delays in diagnosis and some women experience feelings of distress and isolation. There is also evidence to suggest women who enter premature or early menopause may have an increased risk of conditions such as cardiovascular disease, and osteoporosis (fragile bones). Use of MHT may reduce these risks.
People with cancer are more likely to experience early menopause or menopause symptoms due to treatment. For example, endocrine therapy for breast cancer can cause hot flushes and/or night sweats that may be more severe and prolonged than natural menopause. Women with cancer often report a lack of centralised care and access to safe and effective treatments for their menopause symptoms.
Menopause does not usually cause mental health problems, but those with severe hot flushes/night sweats, previous clinical depression or recent stressful life events are at an increased risk of depression. There should be greater awareness and support for this group. Whilst MHT helps with hot flushes and night sweats, it is not a treatment for depression and clinicians should offer evidence-based treatments depending on severity and patient preference.
Greater awareness, better understanding of mechanisms, new treatments and additional support for people who experience early menopause, menopause after cancer treatment and/or who are at a higher risk of depression over the menopause transition, is urgently needed.
The Series concludes all women should have access to realistic and balanced information about menopause and possible experiences, effective treatment as needed and shared decision-making to better equip them to navigate this life stage.
In this Gulf Coast city, addiction medicine doctor Stephen Loyd announced at a January event what he called “a game-changer” for state and local governments spending billions of dollars in opioid settlement funds.
The money, which comes from companies accused of aggressively marketing and distributing prescription painkillers, is meant to tackle the addiction crisis.
But “how do you know that the money you’re spending is going to get you the result that you need?” asked Loyd, who was once hooked on prescription opioids himself and has become a nationally known figure since Michael Keaton played a character partially based on him in the Hulu series “Dopesick.”
Loyd provided an answer: Use statistical modeling and artificial intelligence to simulate the opioid crisis, predict which programs will save the most lives, and help local officials decide the best use of settlement dollars.
Loyd serves as the unpaid co-chair of the Helios Alliance, a group that hosted the event and is seeking $1.5 million to create such a simulation for Alabama.
The state is set to receive more than $500 million from opioid settlements over nearly two decades. It announced $8.5 million in grants to various community groups in early February.
Loyd’s audience that gray January morning included big players in Mobile, many of whom have known one another since their school days: the speaker pro tempore of Alabama’s legislature, representatives from the city and the local sheriff’s office, leaders from the nearby Poarch Band of Creek Indians, and dozens of addiction treatment providers and advocates for preventing youth addiction.
Many of them were excited by the proposal, saying this type of data and statistics-driven approach could reduce personal and political biases and ensure settlement dollars are directed efficiently over the next decade.
But some advocates and treatment providers say they don’t need a simulation to tell them where the needs are. They see it daily, when they try — and often fail — to get people medications, housing, and other basic services. They worry allocating $1.5 million for Helios prioritizes Big Tech promises for future success while shortchanging the urgent needs of people on the front lines today.
“Data does not save lives. Numbers on a computer do not save lives,” said Lisa Teggart, who is in recovery and runs two sober living homes in Mobile. “I’m a person in the trenches,” she said after attending the Helios event. “We don’t have a clean-needle program. We don’t have enough treatment. … And it’s like, when is the money going to get to them?”
The debate over whether to invest in technology or boots on the ground is likely to reverberate widely, as the Helios Alliance is in discussions to build similar models for other states, including West Virginia and Tennessee, where Loyd lives and leads the Opioid Abatement Council.
New predictive promise?
The Helios Alliance comprises nine nonprofit and for-profit organizations, with missions ranging from addiction treatment and mathematical modeling to artificial intelligence and marketing. As of mid-February, the alliance had received $750,000 to build its model for Alabama.
The largest chunk — $500,000 — came from the Poarch Band of Creek Indians, whose tribal council voted unanimously to spend most of its opioid settlement dollars to date on the Helios initiative. A state agency chipped in an additional $250,000. Ten Alabama cities and some private foundations are considering investing as well.
Stephen McNair, director of external affairs for Mobile, said the city has an obligation to use its settlement funds “in a way that is going to do the most good.” He hopes Helios will indicate how to do that, “instead of simply guessing.”
Rayford Etherton, a former attorney and consultant from Mobile who created the Helios Alliance, said he is confident his team can “predict the likely success or failure of programs before a dollar is spent.”
The Helios website features a similarly bold tagline: “Going Beyond Results to Predict Them.”
To do this, the alliance uses system dynamics, a mathematical modeling technique developed at the Massachusetts Institute of Technology in the 1950s. The Helios model takes in local and national data about addiction services and the drug supply. Then it simulates the effects different policies or spending decisions can have on overdose deaths and addiction rates. New data can be added regularly and new simulations run anytime. The alliance uses that information to produce reports and recommendations.
Etherton said it can help officials compare the impact of various approaches and identify unintended consequences. For example, would it save more lives to invest in housing or treatment? Will increasing police seizures of fentanyl decrease the number of people using it or will people switch to different substances?
And yet, Etherton cautioned, the model is “not a crystal ball.” Data is often incomplete, and the real world can throw curveballs.
Another limitation is that while Helios can suggest general strategies that might be most fruitful, it typically can’t predict, for instance, which of two rehab centers will be more effective. That decision would ultimately come down to individuals in charge of awarding contracts.
Mathematical models vs. on-the-ground experts
To some people, what Helios is proposing sounds similar to a cheaper approach that 39 states — including Alabama — already have in place: opioid settlement councils that provide insights on how to best use the money. These are groups of people with expertise ranging from addiction medicine and law enforcement to social services and personal experience using drugs.
Even in places without formal councils, treatment providers and recovery advocates say they can perform a similar function. Half a dozen advocates in Mobile told KFF Health News the city’s top need is low-cost housing for people who want to stop using drugs.
“I wonder how much the results” from the Helios model “are going to look like what people on the ground doing this work have been saying for years,” said Chance Shaw, director of prevention for AIDS Alabama South and a person in recovery from opioid use disorder.
But Loyd, the co-chair of the Helios board, sees the simulation platform as augmenting the work of opioid settlement councils, like the one he leads in Tennessee.
Members of his council have been trying to decide how much money to invest in prevention efforts versus treatment, “but we just kind of look at it, and we guessed,” he said — the way it’s been done for decades. “I want to know specifically where to put the money and what I can expect from outcomes.”
Jagpreet Chhatwal, an expert in mathematical modeling who directs the Institute for Technology Assessment at Massachusetts General Hospital, said models can reduce the risk of individual biases and blind spots shaping decisions.
If the inputs and assumptions used to build the model are transparent, there’s an opportunity to instill greater trust in the distribution of this money, said Chhatwal, who is not affiliated with Helios. Yet if the model is proprietary — as Helios’ marketing materials suggest its product will be — that could erode public trust, he said.
Etherton, of the Helios Alliance, told KFF Health News, “Everything we do will be available publicly for anyone who wants to look at it.”
Urgent needs vs. long-term goals
Helios’ pitch sounds simple: a small upfront cost to ensure sound future decision-making. “Spend 5% so you get the biggest impact with the other 95%,” Etherton said.
To some people working in treatment and recovery, however, the upfront cost represents not just dollars, but opportunities lost for immediate help, be it someone who couldn’t find an open bed or get a ride to the pharmacy.
“The urgency of being able to address those individual needs is vital,” said Pamela Sagness, executive director of the North Dakota Behavioral Health Division.
Her department recently awarded $7 million in opioid settlement funds to programs that provide mental health and addiction treatment, housing, and syringe service programs because that’s what residents have been demanding, she said. An additional $52 million in grant requests — including an application from the Helios Alliance — went unfunded.
Back in Mobile, advocates say they see the need for investment in direct services daily. More than 1,000 people visit the office of the nonprofit People Engaged in Recovery each month for recovery meetings, social events, and help connecting to social services. Yet the facility can’t afford to stock naloxone, a medication that can rapidly reverse overdoses.
At the two recovery homes that Mobile resident Teggart runs, people can live in a drug-free space at a low cost. She manages 18 beds but said there’s enough demand to fill 100.
Hannah Seale felt lucky to land one of those spots after leaving Mobile County jail last November.
“All I had with me was one bag of clothes and some laundry detergent and one pair of shoes,” Seale said.
Since arriving, she’s gotten her driver’s license, applied for food stamps, and attended intensive treatment. In late January, she was working two jobs and reconnecting with her 4- and 7-year-old daughters.
After 17 years of drug use, the recovery home “is the one that’s worked for me,” she said.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Medical diagnostics expert, doctor’s assistant, and cartographer are all fair titles for an artificial intelligence model developed by researchers at the Beckman Institute for Advanced Science and Technology.
Their new model accurately identifies tumors and diseases in medical images and is programmed to explain each diagnosis with a visual map. The tool’s unique transparency allows doctors to easily follow its line of reasoning, double-check for accuracy, and explain the results to patients.
The idea is to help catch cancer and disease in its earliest stages -; like an X on a map -; and understand how the decision was made. Our model will help streamline that process and make it easier on doctors and patients alike.”
Sourya Sengupta, study’s lead author and graduate research assistant at the Beckman Institute
This research appeared in IEEE Transactions on Medical Imaging.
Cats and dogs and onions and ogres
First conceptualized in the 1950s, artificial intelligence -; the concept that computers can learn to adapt, analyze, and problem-solve like humans do -; has reached household recognition, due in part to ChatGPT and its extended family of easy-to-use tools.
Machine learning, or ML, is one of many methods researchers use to create artificially intelligent systems. ML is to AI what driver’s education is to a 15-year-old: a controlled, supervised environment to practice decision-making, calibrating to new environments, and rerouting after a mistake or wrong turn.
Deep learning -; machine learning’s wiser and worldlier relative -; can digest larger quantities of information to make more nuanced decisions. Deep learning models derive their decisive power from the closest computer simulations we have to the human brain: deep neural networks.
These networks -; just like humans, onions, and ogres -; have layers, which makes them tricky to navigate. The more thickly layered, or nonlinear, a network’s intellectual thicket, the better it performs complex, human-like tasks.
Consider a neural network trained to differentiate between pictures of cats and pictures of dogs. The model learns by reviewing images in each category and filing away their distinguishing features (like size, color, and anatomy) for future reference. Eventually, the model learns to watch out for whiskers and cry Doberman at the first sign of a floppy tongue.
But deep neural networks are not infallible -; much like overzealous toddlers, said Sengupta, who studies biomedical imaging in the University of Illinois Urbana-Champaign Department of Electrical and Computer Engineering.
“They get it right sometimes, maybe even most of the time, but it might not always be for the right reasons,” he said. “I’m sure everyone knows a child who saw a brown, four-legged dog once and then thought that every brown, four-legged animal was a dog.”
Sengupta’s gripe? If you ask a toddler how they decided, they will probably tell you.
“But you can’t ask a deep neural network how it arrived at an answer,” he said.
The black box problem
Sleek, skilled, and speedy as they may be, deep neural networks struggle to master the seminal skill drilled into high school calculus students: showing their work. This is referred to as the black box problem of artificial intelligence, and it has baffled scientists for years.
On the surface, coaxing a confession from the reluctant network that mistook a Pomeranian for a cat does not seem unbelievably crucial. But the gravity of the black box sharpens as the images in question become more life-altering. For example: X-ray images from a mammogram that may indicate early signs of breast cancer.
The process of decoding medical images looks different in different regions of the world.
“In many developing countries, there is a scarcity of doctors and a long line of patients. AI can be helpful in these scenarios,” Sengupta said.
When time and talents are in high demand, automated medical image screening can be deployed as an assistive tool -; in no way replacing the skill and expertise of doctors, Sengupta said. Instead, an AI model can pre-scan medical images and flag those containing something unusual -; like a tumor or early sign of disease, called a biomarker -; for a doctor’s review. This method saves time and can even improve the performance of the person tasked with reading the scan.
These models work well, but their bedside manner leaves much to be desired when, for example, a patient asks why an AI system flagged an image as containing (or not containing) a tumor.
Historically, researchers have answered questions like this with a slew of tools designed to decipher the black box from the outside in. Unfortunately, the researchers using them are often faced with a similar plight as the unfortunate eavesdropper, leaning against a locked door with an empty glass to their ear.
“It would be so much easier to simply open the door, walk inside the room, and listen to the conversation firsthand,” Sengupta said.
To further complicate the matter, many variations of these interpretation tools exist. This means that any given black box may be interpreted in “plausible but different” ways, Sengupta said.
“And now the question is: which interpretation do you believe?” he said. “There is a chance that your choice will be influenced by your subjective bias, and therein lies the main problem with traditional methods.”
Sengupta’s solution? An entirely new type of AI model that interprets itself every time -; that explains each decision instead of blandly reporting the binary of “tumor versus non-tumor,” Sengupta said.
No water glass needed, in other words, because the door has disappeared.
Mapping the model
A yogi learning a new posture must practice it repeatedly. An AI model trained to tell cats from dogs studying countless images of both quadrupeds.
An AI model functioning as doctor’s assistant is raised on a diet of thousands of medical images, some with abnormalities and some without. When faced with something never-before-seen, it runs a quick analysis and spits out a number between 0 and 1. If the number is less than .5, the image is not assumed to contain a tumor; a numeral greater than .5 warrants a closer look.
Sengupta’s new AI model mimics this setup with a twist: the model produces a value plus a visual map explaining its decision.
The map -; referred to by the researchers as an equivalency map, or E-map for short -; is essentially a transformed version of the original X-ray, mammogram, or other medical image medium. Like a paint-by-numbers canvas, each region of the E-map is assigned a number. The greater the value, the more medically interesting the region is for predicting the presence of an anomaly. The model sums up the values to arrive at its final figure, which then informs the diagnosis.
“For example, if the total sum is 1, and you have three values represented on the map -; .5, .3, and .2 -; a doctor can see exactly which areas on the map contributed more to that conclusion and investigate those more fully,” Sengupta said.
This way, doctors can double-check how well the deep neural network is working -; like a teacher checking the work on a student’s math problem -; and respond to patients’ questions about the process.
“The result is a more transparent, trustable system between doctor and patient,” Sengupta said.
X marks the spot
The researchers trained their model on three different disease diagnosis tasks including more than 20,000 total images.
First, the model reviewed simulated mammograms and learned to flag early signs of tumors. Second, it analyzed optical coherence tomography images of the retina, where it practiced identifying a buildup called Drusen that may be an early sign of macular degeneration. Third, the model studied chest X-rays and learned to detect cardiomegaly, a heart enlargement condition that can lead to disease.
Once the mapmaking model had been trained, the researchers compared its performance to existing black-box AI systems -; the ones without a self-interpretation setting. The new model performed comparably to its counterparts in all three categories, with accuracy rates of 77.8% for mammograms, 99.1% for retinal OCT images, and 83% for chest x-rays compared to the existing 77.8%, 99.1%, and 83.33.%
These high accuracy rates are a product of the deep neural network, the non-linear layers of which mimic the nuance of human neurons.
To create such a complicated system, the researchers peeled the proverbial onion and drew inspiration from linear neural networks, which are simpler and easier to interpret.
“The question was: How can we leverage the concepts behind linear models to make non-linear deep neural networks also interpretable like this?” said principal investigator Mark Anastasio, a Beckman Institute researcher and the Donald Biggar Willet Professor and Head of the Illinois Department of Bioengineering. “This work is a classic example of how fundamental ideas can lead to some novel solutions for state-of-the-art AI models.”
The researchers hope that future models will be able to detect and diagnose anomalies all over the body and even differentiate between them.
“I am excited about our tool’s direct benefit to society, not only in terms of improving disease diagnoses, but also improving trust and transparency between doctors and patients,” Anastasio said.
Sengupta, S., et al. (2024) A Test Statistic Estimation-based Approach for Establishing Self-interpretable CNN-based Binary Classifiers. IEEE Transactions on Medical Imaging. doi.org/10.1109/TMI.2023.3348699.
In a recent study published in the journal Nature Medicine, an international team of scientists identified the best large language models and adaptation methods for clinically summarizing large amounts of electronic health record data and compared the performance of these models to that of medical experts.
A laborious but essential aspect of medical practice is the documentation of patient medical health records containing progress reports, diagnostic tests, and treatment history across specialists. Clinicians often spend a substantial portion of their time compiling vast amounts of textual data, and even with very experienced physicians, this process presents a possibility of introducing errors, which can translate to serious medical and diagnostic problems.
The transition from paper records to electronic health records only seems to have expanded the workload of clinical documentation, and reports suggest that clinicians spend approximately two hours each documenting the clinical data from their interactions with one patient. Nurses spend close to 60% of their time in clinical documentation, and the temporal demands of this process often result in considerable stress and burnout, decreasing job satisfaction among clinicians and eventually resulting in worse patient outcomes.
Although large language models present an excellent option for the summarization of clinical data, and these models have been evaluated for general natural language processing tasks, their efficiency and accuracy in summarizing clinical data have not been evaluated extensively.
About the study
In the present study, the researchers evaluated eight large language models across four clinical summarization tasks, namely, patient questions, radiology reports, dialogue between doctor and patient, and progress notes.
They first used quantitative natural language processing metrics to determine which model and adaptation method performed the best across the four summarization tasks. Ten physicians then conducted a clinical reader study where they compared the best summaries from the large language models with those from medical experts along parameters such as conciseness, correctness, and completeness.
Finally, the researchers assessed the safety aspects to determine the challenges, such as the fabrication of information and the potential for medical harm present in the summarization of clinical data by medical experts and large language models.
Two broad language-generation approaches — autoregressive and seq2seq models — were used to evaluate the eight large language models. Training seq2seq models requires paired datasets as they use an encoder-decoder architecture that maps the input to the output. These models perform efficiently in tasks involving summarization and machine translation.
On the other hand, autoregressive models do not require paired datasets, and these models are suitable for tasks such as dialogue and question-answer interactions and text generation. The study evaluated open-sourced autoregressive and seq2seq large language models, as well as some proprietary autoregressive models and two techniques for adapting the general-purpose, pre-trained large language models to perform domain-specific tasks.
The four areas of tasks used to evaluate the large language models consisted of summarization of radiology reports using detailed data of radiology analyses and results, summarization of questions from patients into condensed queries, using progress notes to produce a list of medical problems and diagnoses, and summarizing interactions between the doctor and patient into a paragraph on the assessment and plan.
Results
The results showed that 45% of the summaries from the best-adapted large language models were equivalent to and 36% of them were superior to those from medical experts. Furthermore, in the clinical reader study, the large language model summaries scored higher than the medical expert summaries across all three parameters of conciseness, correctness, and completeness.
Furthermore, the scientists found that ‘prompt engineering’ or the process of tuning or modifying the input prompts greatly improved the performance of the model. This was apparent, especially along the conciseness parameter, where specific prompts instructing the model to summarize patient questions into queries of specific word counts were helpful in meaningfully condensing the information.
Radiology reports were the one aspect where the conciseness of the large language model summaries was lower than that of medical experts, and the scientists predicted that this could be due to the vagueness of the input prompt since the prompts for summarizing the radiology reports did not specify the word limit. However, they also believe that incorporating checks from other large language models or model ensembles, as well as from human operators, can greatly improve the accuracy of this process.
Conclusions
Overall, the study found that using large language models to summarize data on patient health records performed as well or better than the summarization of data by medical experts. Most of these large language models scored higher than human operators in the natural language processing metrics, concisely, correctly, and completely summarizing the data. This process can potentially be implemented with further modifications and improvements to help clinicians save valuable time and improve patient care.
Journal reference:
Veen, V., Uden, V., Blankemeier, L., Delbrouck, J., Aali, A., Bluethgen, C., Pareek, A., Polacin, M., Reis, E. P., Seehofnerová, A., Rohatgi, N., Hosamani, P., Collins, W., Ahuja, N., Langlotz, C. P., Hom, J., Gatidis, S., Pauly, J., & Chaudhari, A. S. (2024). Adapted large language models can outperform medical experts in clinical text summarization. Nature Medicine. DOI: 10.1038/s41591024028555, https://www.nature.com/articles/s41591-024-02855-5
Los Angeles anesthesiologist Marilyn Singleton was outraged about a California requirement that every continuing medical education course include training in implicit bias — the ways in which physicians’ unconscious attitudes might contribute to racial and ethnic disparities in health care.
Singleton, who is Black and has practiced for 50 years, sees calling doctors out for implicit bias as divisive, and argues the state cannot legally require her to teach the idea in her continuing education classes. She has sued the Medical Board of California, asserting a constitutional right not to teach something she doesn’t believe.
The way to address health care disparities is to target low-income people for better access to care, rather than “shaking your finger” at white doctors and crying “racist,” she said. “I find it an insult to my colleagues to imply that they won’t be a good doctor if a racially divergent patient is in front of them.”
The litigation is part of a national crusade by right-leaning advocacy and legal groups against diversity, equity, and inclusion, or DEI, initiatives in health care. The pushback is inspired in part by last year’s U.S. Supreme Court ruling barring affirmative action in higher education.
The California lawsuit does not dispute the state’s authority to require implicit-bias training. It questions only whether the state can require all teachers to discuss implicit bias in their continuing medical education courses. The suit’s outcome, however, could influence obligatory implicit-bias training for all licensed professionals.
Leading the charge is the Pacific Legal Foundation, a Sacramento-based organization that describes itself as a “national public interest law firm that defends Americans from government overreach and abuse.” Its clients include the activist group Do No Harm, founded in 2022 to fight affirmative action in medicine. The two groups have also joined forces to sue the Louisiana medical board and the Tennessee podiatry board for reserving board seats exclusively for racial minorities.
In their complaint against the California medical board, Singleton and Do No Harm, along with Los Angeles ophthalmologist Azadeh Khatibi, argue that the implicit-bias training requirement violates the First Amendment rights of doctors who teach continuing medical education courses by requiring them to discuss how unconscious bias based on race, ethnicity, gender identity, sexual orientation, age, socioeconomic status, or disability can alter treatment.
“It’s the government saying doctors must say things, and that’s not what our free nation stands for,” said Khatibi, who immigrated to the U.S. from Iran as a child. Unlike Singleton, Khatibi does believe implicit bias can unintentionally result in substandard care. But, she said, “on principle, I don’t believe in the government compelling speech.”
The lawsuit challenges the evidence of implicit bias in health care, saying there is no proof that efforts to reduce bias are effective. Interventions have thus far not demonstrated lasting effects, studies have found.
In December, U.S. District Judge Dale S. Fischer dismissed the suit but allowed the Pacific Legal Foundation to file an amended complaint. A hearing is scheduled for March 11 in federal court in Los Angeles.
In enacting the training requirement, the California legislature found that physicians’ biased attitudes unconsciously contribute to health care disparities. It also found that racial and ethnic disparities in health care outcomes are “remarkably consistent” across a range of illnesses and persist even after adjusting for socioeconomic differences, whether patients are insured, and other factors influencing care.
Black women are three to four times as likely as white women to die of pregnancy-related causes, are often prescribed less pain medication than white patients with the same complaints, and are referred less frequently for advanced cardiovascular procedures,the legislature found.
It also noted that women treated by female doctors were more likely to survive heart attacks than those treated by men. This month, the California legislature’s Black Caucus unveiled legislation requiring implicit-bias training for all maternal care providers in the state.
Khama Ennis, who teaches an implicit-bias class for Massachusetts doctors, sees only the best intentions in her fellow physicians. “But we’re also human,” she said in an interview. “And to not acknowledge that we are just as susceptible to bias as anybody else in any other field is unfair to patients.”
Ennis offered an example of her own bias in a training session. Preparing to treat a patient in a hospital emergency room, she noticed a Confederate flag tattoo on his forearm.
“As a Black woman, I had to have a quick chat with myself,” she said. “I needed to ensure that I provided the same standard of care for him that I would for anyone else.”
Ennis’ class meets the requirements of a Massachusetts law that physicians earn two hours of instruction in implicit bias to obtain or renew their licenses, as of 2022.
That same year, California began requiring that all accredited continuing medical education courses involving direct patient care include discussion of implicit bias. The state mandates 50 hours of continuing education every two years for doctors to maintain their licenses. Private institutions offer courses on an array of topics, and physicians generally teach them.
Teachers may tell students they do not believe implicit bias drives health care disparities, Fischer wrote in her December ruling. But the state, which licenses doctors, has the right to decide what must be included in the classes, the judge wrote.
Professionals who elect to teach courses “must communicate the information that the legislature requires medical practitioners to have,” the judge wrote. “When they do so, they do not speak for themselves, but for the state.”
Whether they speak for themselves or for the state is a pivotal question. While the First Amendment protects private citizens’ right to free speech, that protection does not extend to government speech. The content of public school curricula, for example, is the speech of state government, not the speech of teachers, parents, or students, courts have said. In 1988, the U.S. Supreme Court ruled that the First Amendment did not apply to student journalists when a principal censored articles they wrote as part of a school curriculum.
The Pacific Legal Foundation’s amended complaint aims to convince the judge that its clients teach as private citizens with First Amendment rights. If the judge again rules otherwise, lead attorney Caleb Trotter told KFF Health News, he plans to appeal the decision to the U.S. Court of Appeals for the 9th Circuit, and, if necessary, the Supreme Court.
“This is not government speech at all,” he said. “It’s private speech, and the First Amendment should apply.”
“Plaintiffs are plainly wrong,” lawyers for Rob Bonta, the state attorney general, responded in court papers. “There can be no dispute that the State shapes or controls the content of continuing medical education courses.”
The medical board declined to comment on the pending litigation.
From 2019 through July 2022, in addition to California and Massachusetts, four states enacted legislation requiring health care providers to be trained in implicit bias.
A landmark 2003 Institute of Medicine report, “Unequal Treatment,” found that limited access to care and other socioeconomic differences explain only part of racial and ethnic disparities in treatment outcomes. The expert panel concluded that clinicians’ prejudices could also contribute.
In the two decades since the report’s release, studies have documented that bias does influence clinical care and contribute to racial disparities, a 2022 report said.
But implicit-bias training might have no impact and might even worsen discriminatory care, the report found.
“There’s not really evidence that it works,” Khatibi said. “To me, addressing health care disparities is really important because lives are at stake. The question is, How do you want to achieve these ends?”
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Pharmaceutical companies that manufacture insulin made headlines last year when they voluntarily agreed to provide discount cards that lower the monthly cost of insulin for many people to $35.
But getting your hands on this card — and persuading a pharmacist to accept it — can be a hassle.
In this episode of “An Arm and a Leg,” producer Emily Pisacreta speaks with “insulin activists” and pharmaceutical experts to find out what this change in prices means for people with diabetes and why the fight for affordable insulin isn’t over yet.
Host and producer of “An Arm and a Leg.” Previously, Dan was a staff reporter for Marketplace and Chicago’s WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.
Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.
Dan: Hey there. Right after the holidays, I got an email from a listener named Brianna.It started, “Happy new year Dan! I was just reading the news about the price of insulin going down to $35! Is that for everyone?”
And I was like, Huh. I had a sense that there was some news about the price of insulin, but 35 dollars a month for everyone? That sounded like a BIG reduction. And big news.I googled the latest stories, and I was… not totally sure what I was seeing.
I was definitely seeing some new stories about people paying 35 bucks from here on out. And there seemed to be some federal law involved, and politicians were patting themselves on the back. But it just wasn’t totally clear: Was insulin now 35 dollars for everyone? Did the outrageous price of insulin get solved while I wasn’t looking?
And I mean, I’ve kinda been looking. We’ve done a couple of episodes about the price of insulin already — because insulin is iconic. It represents the wild cost of prescription drugs in this country. More than 8 million Americans take insulin to treat their diabetes – and for some, going without it could actually kill you.
And its price got jacked up so much — huge multiples over like ten years — — that one in four of those people who couldn’t go without… took to rationing: Seeing how much they could go without, short of actually dying.
So I asked our senior producer Emily Pisacreta to take the case.
Emily: I feel more like the senior insulin correspondent, which is fine with me as the resident type 1 diabetic! And a lot has happened since the last time we talked about insulin on this show. We really do need an update.
Dan: This is an “Arm and a Leg”, a show about why healthcare costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann, I’m a reporter and I like a challenge. So our job here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering and useful.
Today we have a question: what’s going on with insulin? Is it $35 now?
Emily: Well, there have been some BIG improvements — bigger than I thought when I started reporting. A lot of people can get their monthly supply of insulin for just $35. But it is oversimplified to say it just costs $35 now. And the people who have been fighting to lower the price of insulin over the past decade? They’re still very pissed. So let me walk you through what changed, what led to those changes, and what’s still unresolved.
Dan: OK!
Emily: For years now, there’s been a giant push from people with diabetes to get the federal government to do something about the high cost of insulin. In 2022, finally something came through. I’m talking about a provision in Inflation Reduction Act.
Dan: Yes– I remember this– the Inflation Reduction Act was a big infrastructure bill that included, like renewable energy subsidies, and– honestly, this is the reason that I remember the bill, because we did an episode about this part– letting medicare negotiate some drug prices?
Emily: Exactly. It said people on Medicare would be able to get a month’s supply of insulin for no more than $35 out of pocket. But of course that left a big gaping hole. BECAUSE that’s cool for people on Medicare, but what about the rest of us? And the pharma companies were feeling the heat. Here’s President Biden in his State of the Union last year:
President Biden: Big pharma has been unfairly charging people hundreds of dollars, four to $500 a month making record profits. Not anymore. Not anymore.
Emily: By the way, those pharma companies? There’s three of them who make insulin.
That’s the American company Eli Lilly, the Danish company Novo Nordisk, and the French company Sanofi. OK so: not long after Joe Biden talked about their record profits, the insulin makers were back in the news. …
Eli Lilly was the first to announce they were going to slash prices on several of their most popular insulins, and limit out of pocket spending to $35 a month.
Fox News: This is a big story.
Next, Novo Nordisk and Sanofi made similar announcements.
CNN: Millions of Americans are affected by this major news this morning for millions of people suffering from diabetes and high prescription drug costs.
Basically, the insulin manufacturers all said hey, you’re not covered by this Medicare thing? We’re going to bring your copay down to $35 ourselves. So if you have commercial insurance Print out this card, take it to the pharmacy, and your copay will be no more than $35 for a month’s supply of insulin.
Dan: And what if you’re uninsured?
Emily: Well, they have a card for that, too.
Dan: OK so what I’m hearing is you need a card.
DAN: Yes. How do you get one?
Emily: The insulin makers set special phone numbers you can call. Or you can visit their websites, fill out a little form, and download the card.
Dan: Sounds simple, unless I’m missing something?
Emily: In all honesty, I had no problem with those steps. But I wouldn’t assume that’s the case for everyone. And I’m also not rationing insulin right now.
Zoe Witt: When you are rationing insulin, maybe you aren’t even fully rationing insulin yet, but you don’t know how you’re going to get Your next prescription, your next fill of insulin…You are in crisis. Like, you, you do not have the capability to sift through these websites. It’s very confusing. It’s very overwhelming.
Emily: This is someone who frequently speaks to people struggling to afford insulin.
Zoe Witt: my name is Zoe Witt. I work with Mutual Aid Diabetes.
Emily: Mutual Aid Diabetes. That’s an all volunteer group that has banded together to help diabetics get what they need, when they need it. They help people with cash and with free diabetes supplies, including insulin, no questions asked. That means Zoe knows the ins and outs of every obstacle to getting insulin.
Zoe Witt: Our healthcare system is like a whack a mole from hell.
Emily: And Zoe reminds me: if you’re not taking enough insulin, you probably feel awful. Maybe not even thinking straight. And it can affect your eyes, making it hard to read.
Zoe Witt: It just is unmanageable
Emily: Zoe says they talk with people all the time who are too stressed out or too debilitated to download these cards and use them. Diabetes folks walk people through the process. And once someone has the card… Mutual Aid Diabetes gives people the 35 bucks, too, if they say they need it. Because $35 can be a barrier for a lot of people. And it’s actually $70 sometimes if you use 2 types of insulin at once, which lots of people do… myself included.
Dan: Wow. OK. But then once people have the cards they typically have no problem?
Emily: Well, your pharmacist has to know what they’re doing, too. So sometimes it means a patient having to educate their pharmacist– or even bring the doctor in to help troubleshoot — which is no picnic. And people with diabetes are always having to deal with insurance roadblocks at the pharmacy, so I don’t want to make anything sound simpler than it is.
Dan: It’s like a whack a mole from hell!
Emily: Exactly! And the cards don’t solve everything. Especially this: if you have insurance, these cards only apply to the insulin your insurance plan already covers. If you normally need a prior authorization to get the right insulin for you… that is still the case.
Dan: Right. Okay. like prior authorization is this roadblock to getting all kinds of treatment, that you and your doctor agree that you should have, and your insurance company can say, we disagree. We’re s not authorizing this. And then you’re stuck.
Emily: Right.
Dan:But in terms of what the pharma companies. can do to kind of offer you a deal. They’re basically doing it. Is that right?
Emily: I think that’s fair to say.
Dan: That’s super interesting. All right. So it’s not solved, but this is a big step forward. And what’s not solved is: some people are still on the hook for the list price for insulin — the price without any discounts or insurance or whatever. But you found big improvements there too, right?
Emily: Yes! When the companies announced all these discount cards, they announced a whole other big change, too. Slashing the list prices of a bunch of different insulins by up 75%. So a vial that once was north of $300 is now being listed at around $70.
Dan: OK, that sounds like a big improvement.
Emily: It’s a big, big deal. Actual price reductions are what diabetes advocates have been demanding all along. And… while these are still the highest prices in the world for these same insulins, to see them drop from triple to double digits, it’s wild.
Dan: I sense that there’s a “but” here.
Emily: Well, the Big Three didn’t lower the price of every type of insulin, only ones that have been around since the 1990s or early 2000s. Newer insulins that work faster or last longer are not included here.
Dan: And I’m guessing not all insulins work the same way.
Emily: Right. Some people can switch between types or brands of insulin easily. For other people, there can be allergies or one works better with their body with another kind. It’s complicated. It’s medicine! AND… there have been some issues with pharmacies actually stocking lower list price insulin. That is a whole ‘nother saga… an episode for another day. But the important thing is… a bunch of insulin is a lot cheaper now.
Dan: Wow. Emily, you said right at the top: The changes here are bigger and better than you realized before you started reporting.
Emily: Yes but there’s still a lot more to say.
Right. After the break, we’ll’ hear from you about why these changes happened NOW. And what it means for people with diabetes and really all of us…
[midroll]
So. We have seen some big changes in the last year — including DRUG COMPANIES expanding their discount programs and lowering the sticker prices on insulin, dramatically. Why now? I’m guessing this wasn’t because they had a big change of heart.
Emily: I can’t speak to what’s in pharma’s hearts. But I did talk to someone who knows a lot about pharma’s brain.
Ed Silverman: my name is Ed Silverman, and I work at Stat News, a health and life sciences website,
Emily: I’m a big fan of Stat News
Dan: Me too, man! Their reporting is great.
Emily: And Ed Silverman. He’s been covering the pharmaceutical industry for almost 30 years. He thinks activism from people with diabetes over the years created political pressure that played a big role in the decision to slash prices. But there was also something kind of hidden at work.
Ed Silverman: It’s not altruism, here was a real mechanism, government mechanism in place that helped change the equation and therefore the thinking back at the companies.
Dan: OK… what is he talking about?
Emily: So, Dan: do you remember the stimulus bill, the American Rescue Plan?
Dan: I’m starting to feel like this episode is a quiz on recent-ish legislation. And I think I’m gonna do pretty well here:.The American Rescue Plan was a trillion dollar stimulus that Joe Biden got passed right after he got into office– am I right?
Emily: OK, hotshot. Do you remember how in part 8 section 9816 they sunsetted the limit on the maximum rebate for single source drugs and innovator multiple source drugs?
Dan: Um, busted. No.
Emily: Ok so here’s the deal: it’s obviously kinda wonky so I’ll simplify– in that little section Congress made a tweak to Medicaid, basically raising penalties on drug-makers for jacking up prices too far, too fast. So if you’re a pharma company who has raised the price of a drug by a lot very quickly, which is true of insulin, and a lot of people on Medicaid use your drug, which is also true of insulin, then you have to pay a big penalty. In the case of insulin, that penalty would be more than you’d make selling the insulin to Medicaid. A LOT more: So, unless you bring the price back down, you’re going to owe Medicaid a lot of moolah. And those penalties were set to kick in January 1st 2024.
Dan: So you’re telling me: Part of what the pharma companies did here came right out of a small part of a giant federal law from 2021.
Emily: Yep. And there’s another big wheel turning in the background here. Novo Nordisk and Eli Lilly, two companies who really got their start by selling insulin, now make other diabetes drugs — drugs that are now increasingly used for weight loss. And it’s a bonanza.
GMA: It is literally the hottest drug in the country right now.
Fox News: all people are talking about these days is Ozempic, wegovy. Oh my gosh, this person lost 20 pounds. This person lost 50 pounds.
Ozempic Ad: [Jingle:] “Oh, Oh, Oh, Ozempic!
[Announcer:] Once weekly Ozempic is helping many people with type 2 diabetes like James lower their blood sugar.
Emily: Drugs like Ozempic, Wegovy, Mounjaro. They’ve been in super high demand. And there’s been a ton of hype about their various potential health benefits. For weight loss, for heart health. Scientists are even interested in whether it can help people with substance use disorders. Meanwhile, for Eli Lilly and Novo Nordisk, the returns on these drugs dwarf anything else they’re selling. Novo Nordisk even became the biggest company in Europe – for like a minute… but still.
Dan: OK, this is interesting, but what does it have to do with the price of insulin?
Emily: I’d wondered… maybe these companies can just better afford to buy some political peace by lowering insulin prices, because they are making so much bank on these new drugs, ? Ed Silverman had a take on that.
Ed Silverman: It makes perfect sense that these cash cows, these medicines that are used for diabetes and, weight loss are going to become increasingly important to their bottom line more than other medicines
Emily: More than insulin. And they’re selling so much so fast, they can hardly keep up with demand. Which could end up affecting people who need insulin.
Dan: Wait, how?
Emily: Look, for example, in November, Novo Nordisk said they were investing 3 and half billion dollars into ramping up production of injection pens for Wegovy, one of their top drugs in this category. Less than a week later, Novo announced they would be phasing out one of their insulin products from the US market – an insulin called Levemir. It’s one of the insulins whose prices they just dropped. And… coincidence… Levemir also comes in a pen.
Dan: So Novo Nordisk is phasing out an insulin pen so they can make more Wegovy pens?
Emily: Well, we don’t know that for sure. But Novo Nordisk did tell me that “manufacturing constraints” were part of why they’re dumping Levimir. They said it was one of several reasons and also wrote: “We made this decision after careful consideration and are confident that given the advanced notice, U.S. patients will have access to alternative treatments and can transition to other options.
Dan: Huh. OK.
Emily: But even if pulling this insulin Levemir off the market had nothing to do with their trouble meeting the demand for their big blockbuster drug… it brings to mind an important question about all the changes we talked about today — whether it’s the copay savings or the lowered list prices. Here’s Ed Silverman.
Ed Silverman there’s no guarantee that the companies will keep these in place. Maybe after time, some of the attention on insulin is diverted and maybe eighteen months from now, one company might quietly roll back some of the Benefits, if you want to use that word, there’s nothing requiring them to maintain the steps they’ve taken.
Emily: I asked all three insulin makers about this. None of them promised there would never be any backsies. Lilly wrote back “Lilly is committed to ensuring all patients can access any Lilly medicine they need” — and touted their efforts to date. Similarly, Sanofi wrote “We continually review our affordability offerings to support our aim that no one should struggle to pay for their insulin. Novo Nordisk’s response was “Novo Nordisk increases the price of some of our medicines each year, in response to changes in the healthcare system, market conditions, and the impact of inflation.”
Dan: Yeah, that especially does not sound like a pinky-swear, no-backsies kind of response.
Emily: AND that’s not much comfort for insulin activists. Folks like Shaina Kasper, who works for T1International. They’re a group that’s been at the forefront of this fight for years. I Asked her…
Emily-on-tape: So is this issue of high insulin prices just resolved now?
Shaina Kasper: No, it hasn’t been. It’s been really frustrating…
Emily Shaina and others are worried that the announcements from the manufacturers about savings cards and voluntary list price reductions will take the pressure off the government to do something more sweeping. Because for now…
Shaina: The manufacturers really hold all of the power here And if patients are counting on these programs to literally be able to survive, that has life and death consequences
Dan: This question about who holds the power, it reminds me of a story we did a few months ago… the one about how the writer John Green led a kind of online crusade targeting the drug-maker Johnson & Johnson. And how, even though the pressure campaign worked — J & J ended up allowing lower-priced versions of an important tuberculosis drug — activists who worked on the issue were like: It’s a problem that Johnson & Johnson has the power to say yes or no here..
Emily: Exactly. That which pharma giveth, pharma can taketh. At least the way things are set up now. Now I should say, all three companies told me they plan to continue their affordability offerings. But if insulin continues to be the poster child for high drug prices, prices virtually everyone in America agrees are too high…it does raise the question: are voluntary programs from pharmaceutical companies the solution we want? To Zoe from Mutual Aid Diabetes, the answer is no. They find these manufacturer savings cards kind of a bitter pill… no pun intended.
Zoe Witt: there’s certainly no justice in these programs,
Emily: And zoe for one would say that justice is overdue.
Zoe Witt: These companies have price gouged us. for years, making obscene amounts of money. Then, presumably, as, we’re often told is the justification for these ridiculous prices, they did research and development for more diabetes drugs, which are Ozempic, Monjoro, etc. And now, these companies, for, the next 15 years, are set to make, billions and billions of dollars, on these drugs,
Emily: I asked the big three insulin manufacturers about what Zoe said – about how angry folks like them are over the cost of insulin. Novo Nordisk said “we continually review and revise our offerings as well as work with diverse stakeholders to create solutions for differing patient needs. ” And Sanofi and Lily both said something very similar.
Emily: So… in the end– or at least for now– here’s the answer to our listener’s question…. There are more avenues than ever to get a month’s supply of insulin for $35. Great. It may be a lot easier to avoid rationing your insulin now than it was a couple years ago. That’s also really great. But people with diabetes do not think this fight is over.
Dan: So what DO they want?
Emily: Some people still want the federal government to just put a cap on what people pay for insulin, like by law.. Others are working to build alternatives to the existing pharmaceutical industry, like California’s CalRx program.
Dan: Cal Rx… now you’re calling back our story from the last time we talked about insulin.
Emily: Yep, Cal Rx is the state of California’s attempt to enter the insulin market, to introduce some low priced generics and sell them essentially at cost. Other states are joining in. Even if some of these specific plans fall apart — even if California somehow can’t get its government-sponsored insulin to market, even if Pharma rolls back some of the discounts…the past few years have been enormous for people with diabetes. Mostly because they’ve found each other.
Zoe Witt: I was rationing insulin in 2018, I didn’t even know that there was a term for it. I didn’t know other people were doing it. I know a lot of people died that year. And there were multiple occasions where I, in retrospect, definitely almost died. And the one good thing that has, that has happened between now and then is that people have been talking about it and People are now more comfortable telling others that they’re struggling, that they can’t get their insulin.
Emily: Connecting with Mutual Aid Diabetes or other networks to get or give help.
Zoe Witt: We’re all keeping each other alive, like to me, that’s the number one thing that has changed.
Emily: I think that’s a huge lesson here, and a takeaway that’s not new on this show. Keeping each other alive — or even just keeping each other from getting bankrupted by the medical system — is up to us. And while a mutual aid group modeled exactly like Mutual Aid Diabetes may not work for every disease or every drug, Zoe says they’re more than willing to talk to anyone who might be interested in trying.
Zoe Witt: I mean, we’ve even had people ask, like, is there like a mutual aid asthma or something like for inhalers?
Emily: Their advice?
Zoe Witt: I think that, you know, to start, you would want, like, probably at least, like, five to ten “ride-or dies,” like, people that are really willing to, like, go the extra mile,
Dan: Five to ten– that just does not sound like that many! (I mean, I think.) One thing I’m taking away is: This is a lot of activism over a long time, that eventually had a big effect. Another thing I’m taking away here? Sneaky policy changes — like lifting the Medicaid rebate cap — can make a huge difference. God bless whatever nerds are writing the next little bit of law to sneak into a giant bill, like a hacker with a virus.
Emily: Totally. OK. I gotta take a shot, and eat my lunch.
Dan: Go for it. We’ll be back with a new episode in a few weeks. Till then, take care of yourself.
This episode of an arm and a leg was produced by Emily Pisacreta and me, Dan Weissman and edited by Ellen Weiss.
Adam Raymonda is our audio wizard. Our music is by Dave Weiner and blue dot sessions.
Gabrielle Healy is our managing editor for audience. She edits the first aid kit newsletter.
Bea Bosco is our consulting director of operations. Sarah Ballama is our operations manager.
And Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in depth journalism about healthcare in America and a core program at KFF, an independent source of health policy research, polling and journalism.
Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show.
And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor, allowing us to accept tax exempt donations. You can learn more about INN at INN. org.
Finally, thanks to everybody who supports this show financially– you can join in any time at arm and a leg show dot com, slash, support — and thanks for listening.
“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.
Debra Prichard was a retired factory worker who was careful with her money, including what she spent on medical care, said her daughter, Alicia Wieberg. “She was the kind of person who didn’t go to the doctor for anything.”
That ended last year, when the rural Tennessee resident suffered a devastating stroke and several aneurysms. She twice was rushed from her local hospital to Vanderbilt University Medical Center in Nashville, 79 miles away, where she was treated by brain specialists. She died Oct. 31 at age 70.
One of Prichard’s trips to the Nashville hospital was via helicopter ambulance. Wieberg said she had heard such flights could be pricey, but she didn’t realize how extraordinary the charge would be — or how her mother’s skimping on Medicare coverage could leave the family on the hook.
Then the bill came.
The Patient: Debra Prichard, who had Medicare Part A insurance before she died.
Medical Service: An air-ambulance flight to Vanderbilt University Medical Center.
Service Provider: Med-Trans Corp., a medical transportation service that is part of Global Medical Response, an industry giant backed by private equity investors. The larger company operates in all 50 states and says it has a total of 498 helicopters and airplanes.
Total Bill: $81,739.40, none of which was covered by insurance.
What Gives: Sky-high bills from air-ambulance providers have sparked complaints and federal action in recent years.
For patients with private insurance coverage, the No Surprises Act, which went into effect in 2022, bars air-ambulance companies from billing people more than they would pay if the service were considered “in-network” with their health insurers. For patients with public coverage, such as Medicare or Medicaid, the government sets payment rates at much lower levels than the companies charge.
But Prichard had opted out of the portion of Medicare that covers ambulance services.
That meant when the bill arrived less than two weeks after her death, her estate was expected to pay the full air-ambulance fee of nearly $82,000. The main assets are 12 acres of land and her home in Decherd, Tennessee, where she lived for 48 years and raised two children. The bill for a single helicopter ride could eat up roughly a third of the estate’s value, said Wieberg, who is executor.
The family’s predicament stems from the complicated nature of Medicare coverage.
Prichard was enrolled only in Medicare Part A, which is free to most Americans 65 or older. That section of the federal insurance program covers inpatient care, and it paid most of her hospital bills, her daughter said.
But Prichard declined other Medicare coverage, including Part B, which handles such things as doctor visits, outpatient treatment, and ambulance rides. Her daughter suspects she skipped that coverage to avoid the premiums most recipients pay, which currently are about $175 a month.
Loren Adler, a health economist for the Brookings Institution who studies ambulance bills, estimated the maximum charge that Medicare would have allowed for Prichard’s flight would have been less than $10,000 if she’d signed up for Part B. The patient’s share of that would have been less than $2,000. Her estate might have owed nothing if she’d also purchased supplemental “Medigap” coverage, as many Medicare members do to cover things like coinsurance, he said.
Nicole Michel, a spokesperson for Global Medical Response, the ambulance provider, agreed with Adler’s estimate that Medicare would have limited the charge for the flight to less than $10,000. But she said the federal program’s payment rates don’t cover the cost of providing air-ambulance services.
“Our patient advocacy team is actively engaged with Ms. Wieberg’s attorney to determine if there was any other applicable medical coverage on the date of service that we could bill to,” Michel wrote in an email to KFF Health News. “If not, we are fully committed to working with Ms. Wieberg, as we do with all our patients, to find an equitable solution.”
The Resolution: In mid-February, Wieberg said the company had not offered to reduce the bill.
Wieberg said she and the attorney handling her mother’s estate both contacted the company, seeking a reduction in the bill. She said she also contacted Medicare officials, filled out a form on the No Surprises Act website, and filed a complaint with Tennessee regulators who oversee ambulance services. She said she was notified Feb. 12 that the company filed a legal claim against the estate for the entire amount.
Wieberg said other health care providers, including ground ambulance services and the Vanderbilt hospital, wound up waiving several thousand dollars in unpaid fees for services they provided to Prichard that are normally covered by Medicare Part B.
But as it stands, Prichard’s estate owes about $81,740 to the air-ambulance company.
The Takeaway: People who are eligible for Medicare are encouraged to sign up for Part B, unless they have private health insurance through an employer or spouse.
“If someone with Medicare finds that they are having difficulty paying the Medicare Part B premiums, there are resources available to help compare Medicare coverage choices and learn about options to help pay for Medicare costs,” Meena Seshamani, director of the federal Center for Medicare, said in an email to KFF Health News.
She noted that every state offers free counseling to help people navigate Medicare.
In Tennessee, that counseling is offered by the State Health Insurance Assistance Program. Its director, Lori Galbreath, told KFF Health News she wishes more seniors would discuss their health coverage options with trained counselors like hers.
“Every Medicare recipient’s experience is different,” she said. “We can look at their different situations and give them an unbiased view of what their next best steps could be.”
Counselors advise that many people with modest incomes enroll in a Medicare Savings Program, which can cover their Part B premiums. In 2023, Tennessee residents could qualify for such assistance if they made less than $1,660 monthly as a single person or $2,239 as a married couple. Many people also could obtain help with other out-of-pocket expenses, such as copays for medical services.
Wieberg, who lives in Missouri, has been preparing the family home for sale.
She said the struggle over her mother’s air-ambulance bill makes her wonder why Medicare is split into pieces, with free coverage for inpatient care under Part A, but premiums for coverage of other crucial services under Part B.
“Anybody past the age of 70 is likely going to need both,” she said. “And so why make it a decision of what you can afford or not afford, or what you think you’re going to use or not use?”
Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
Mary Delgado’s first pregnancy went according to plan, but when she tried to get pregnant again seven years later, nothing happened. After 10 months, Delgado, now 34, and her partner, Joaquin Rodriguez, went to see an OB-GYN. Tests showed she had endometriosis, which was interfering with conception. Delgado’s only option, the doctor said, was in vitro fertilization.
“When she told me that, she broke me inside,” Delgado said, “because I knew it was so expensive.”
Delgado, who lives in New York City, is enrolled in Medicaid, the federal-state health program for low-income and disabled people. The roughly $20,000 price tag for a round of IVF would be a financial stretch for lots of people, but for someone on Medicaid — for which the maximum annual income for a two-person household in New York is just over $26,000 — the treatment can be unattainable.
Expansions of work-based insurance plans to cover fertility treatments, including free egg freezing and unlimited IVF cycles, are often touted by large companies as a boon for their employees. But people with lower incomes, often minorities, are more likely to be covered by Medicaid or skimpier commercial plans with no such coverage. That raises the question of whether medical assistance to create a family is only for the well-to-do or people with generous benefit packages.
“In American health care, they don’t want the poor people to reproduce,” Delgado said. She was caring full-time for their son, who was born with a rare genetic disorder that required several surgeries before he was 5. Her partner, who works for a company that maintains the city’s yellow cabs, has an individual plan through the state insurance marketplace, but it does not include fertility coverage.
Some medical experts whose patients have faced these issues say they can understand why people in Delgado’s situation think the system is stacked against them.
“It feels a little like that,” said Elizabeth Ginsburg, a professor of obstetrics and gynecology at Harvard Medical School who is president-elect of the American Society for Reproductive Medicine, a research and advocacy group.
Whether or not it’s intended, many say the inequity reflects poorly on the U.S.
“This is really sort of standing out as a sore thumb in a nation that would like to claim that it cares for the less fortunate and it seeks to do anything it can for them,” said Eli Adashi, a professor of medical science at Brown University and former president of the Society for Reproductive Endocrinologists.
Yet efforts to add coverage for fertility care to Medicaid face a lot of pushback, Ginsburg said.
Over the years, Barbara Collura, president and CEO of the advocacy group Resolve: The National Infertility Association, has heard many explanations for why it doesn’t make sense to cover fertility treatment for Medicaid recipients. Legislators have asked, “If they can’t pay for fertility treatment, do they have any idea how much it costs to raise a child?” she said.
“So right there, as a country we’re making judgments about who gets to have children,” Collura said.
The legacy of the eugenics movement of the early 20th century, when states passed laws that permitted poor, nonwhite, and disabled people to be sterilized against their will, lingers as well.
“As a reproductive justice person, I believe it’s a human right to have a child, and it’s a larger ethical issue to provide support,” said Regina Davis Moss, president and CEO of In Our Own Voice: National Black Women’s Reproductive Justice Agenda, an advocacy group.
But such coverage decisions — especially when the health care safety net is involved — sometimes require difficult choices, because resources are limited.
Even if state Medicaid programs wanted to cover fertility treatment, for instance, they would have to weigh the benefit against investing in other types of care, including maternity care, said Kate McEvoy, executive director of the National Association of Medicaid Directors. “There is a recognition about the primacy and urgency of maternity care,” she said.
Medicaid pays for about 40% of births in the United States. And since 2022, 46 states and the District of Columbia have elected to extend Medicaid postpartum coverage to 12 months, up from 60 days.
Fertility problems are relatively common, affecting roughly 10% of women and men of childbearing age, according to the National Institute of Child Health and Human Development.
Traditionally, a couple is considered infertile if they’ve been trying to get pregnant unsuccessfully for 12 months. Last year, the ASRM broadened the definition of infertility to incorporate would-be parents beyond heterosexual couples, including people who can’t get pregnant for medical, sexual, or other reasons, as well as those who need medical interventions such as donor eggs or sperm to get pregnant.
The World Health Organization defined infertility as a disease of the reproductive system characterized by failing to get pregnant after a year of unprotected intercourse. It terms the high cost of fertility treatment a major equity issue and has called for better policies and public financing to improve access.
No matter how the condition is defined, private health plans often decline to cover fertility treatments because they don’t consider them “medically necessary.” Twenty states and Washington, D.C., have laws requiring health plans to provide some fertility coverage, but those laws vary greatly and apply only to companies whose plans are regulated by the state.
In recent years, many companies have begun offering fertility treatment in a bid to recruit and retain top-notch talent. In 2023, 45% of companies with 500 or more workers covered IVF and/or drug therapy, according to the benefits consultant Mercer.
But that doesn’t help people on Medicaid. Only two states’ Medicaid programs provide any fertility treatment: New York covers some oral ovulation-enhancing medications, and Illinois covers costs for fertility preservation, to freeze the eggs or sperm of people who need medical treatment that will likely make them infertile, such as for cancer. Several other states also are considering adding fertility preservation services.
In Delgado’s case, Medicaid covered the tests to diagnose her endometriosis, but nothing more. She was searching the internet for fertility treatment options when she came upon a clinic group called CNY Fertility that seemed significantly less expensive than other clinics, and also offered in-house financing. Based in Syracuse, New York, the company has a handful of clinics in upstate New York cities and four other U.S. locations.
Though Delgado and her partner had to travel more than 300 miles round trip to Albany for the procedures, the savings made it worthwhile. They were able do an entire IVF cycle, including medications, egg retrieval, genetic testing, and transferring the egg to her uterus, for $14,000. To pay for it, they took $7,000 of the cash they’d been saving to buy a home and financed the other half through the fertility clinic.
She got pregnant on the first try, and their daughter, Emiliana, is now almost a year old.
Delgado doesn’t resent people with more resources or better insurance coverage, but she wishes the system were more equitable.
“I have a medical problem,” she said. “It’s not like I did IVF because I wanted to choose the gender.”
One reason CNY is less expensive than other clinics is simply that the privately owned company chooses to charge less, said William Kiltz, its vice president of marketing and business development. Since the company’s beginning in 1997, it has become a large practice with a large volume of IVF cycles, which helps keep prices low.
At this point, more than half its clients come from out of state, and many earn significantly less than a typical patient at another clinic. Twenty percent earn less than $50,000, and “we treat a good number who are on Medicaid,” Kiltz said.
Now that their son, Joaquin, is settled in a good school, Delgado has started working for an agency that provides home health services. After putting in 30 hours a week for 90 days, she’ll be eligible for health insurance.
One of the benefits: fertility coverage.
This article was reprinted from khn.org, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF – the independent source for health policy research, polling, and journalism.
