The Centers for Disease Control and Prevention recommends new covid-19 booster vaccines for all — but many who need them most won’t get them.
About 75% of people in the United States appear to have skipped last year’s bivalent booster, and nothing suggests uptake will be better this time around.
“Urging people to get boosters has really only worked for Democrats, college graduates, and people making over $90,000 a year,” said Gregg Gonsalves, an epidemiologist at Yale University.
Last summer, Eloise Reynolds paid the bill for her husband’s final stay in the hospital. In February 2022, doctors said that Kent, her husband of 33 years, was too weak for the routine chemotherapy that had kept his colon cancer at bay since 2018. He was admitted to Barnes-Jewish Hospital in St. Louis, not far from their home in Olivette, Missouri. Doctors discovered a partial blockage of his bowel, Reynolds said, but she remained hopeful that his treatment would soon resume. “I remember calling our kids and saying, ‘OK, this is all really good news. We just need to get him kind of bolstered b...
When I’laysia Vital got accepted to Texas Southern University, a historically Black university in Houston, she immediately began daydreaming about the sense of freedom that would come with living on her own, and the sense of belonging she would feel studying in a thriving Black community. Then, a nurse at her high school’s health clinic in Oakland, California, explained the legal landscape of her new four-year home in Texas — where abortion is now fully banned. Vital watched TikTok videos of protesters harassing women outside clinics in other states. She realized her newfound freedoms would co...
When the topic of abortion came up during the first Republican primary presidential debate this week, Florida Gov. Ron DeSantis shared a perplexing anecdote about a woman he’d met who he said had survived the procedure. “I know a lady in Florida named Penny,” DeSantis said. “She survived multiple abortion attempts. She was left discarded in a pan. Fortunately, her grandmother saved her and brought her to a different hospital.” Some accused the governor of fabricating the story. “Let me see if I understand this correctly. Doctors tried to abort ‘Penny’ multiple times and discarded her in a pan,...
Juan Campos has been working to save at-risk teens from gun violence for 16 years. As a street outreach worker in Oakland, California, he has seen the pull and power of gangs. And he offers teens support when they’ve emerged from the juvenile justice system, advocates for them in school, and, if needed, helps them find housing, mental health services, and treatment for substance abuse. But, he said, he’s never confronted a force as formidable as social media, where small boasts and disputes online can escalate into deadly violence in schoolyards and on street corners. Teens post photos or vide...
If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing “988,” or the Crisis Text Line by texting “HOME” to 741741. After her teenage daughter attempted suicide and began to cycle through emergency rooms and mental health programs during the past three years, Sarah Delarosa noticed her own health also declined. She suffered from mini strokes and stomach bleeding, the mother of four in Corpus Christi, Texas, said. To make things worse, her daughter’s failing behavioral and mental health caused Delarosa to miss hours from her jo...
As more than $50 billion makes its way to state and local governments to compensate for the opioid epidemic, people with high hopes for the money are already fighting over a little-known bureaucratic arm of the process: state councils that wield immense power over how the cash is spent.
In 14 states, these councils have the ultimate say on the money, which comes from companies that made, distributed, or sold opioid painkillers, including Purdue Pharma, Johnson & Johnson, and Walmart. In 24 other states, plus Washington, D.C., the councils establish budget priorities and make recommendations. Those will affect whether opioid settlement funds go, for example, to improve addiction treatment programs and recovery houses or for more narcotics detectives and prisons.
KFF Health News, along with Johns Hopkins University and Shatterproof, a national nonprofit focused on the addiction crisis, gathered and analyzed data on council members in all states to create the first database of its kind.
The data shows that councils are as unique as states are from one another. They vary in size, power, and the amount of funds they oversee. Members run the gamut from doctors, researchers, and county health directors to law enforcement officers, town managers, and business owners, as well as people in recovery and parents who’ve lost children to addiction.
“The overdose crisis is incredibly complex, and it demands more than just money,” said Rollie Martinson, a policy associate with the nonprofit Community Education Group, which is tracking settlement spending across Appalachia. “We also need the right people in charge of that money.”
That’s the $50 billion question: Are the right people steering the decisions? Already, criticism of the councils has been rife, with stakeholders pointing out shortcomings, from overrepresentation to underrepresentation and many issues in between. For example:
Council membership doesn’t always align with the states’ hardest-hit populations — by race or geography.
Heavy presence of specific professional groups — treatment providers, health care executives, or law enforcement officials, for example — might mean money gets directed to those particular interests at the expense of others.
Few seats are reserved for people who’ve dealt with a substance use disorder themselves or supported a family member with one.
Admittedly, no one can design a perfect council. There’s no agreement on what that would even look like. But when a pile of money this big is at stake, everyone wants in on the action.
More than $3 billion of opioid settlement funds has already landed in government coffers, with installments to come through 2038. The money is meant as restitution for the hundreds of thousands of Americans who have died from drug overdoses in recent decades.
But what restitution looks like depends on whom you ask. People running syringe service programs might suggest spending money immediately on the overdose reversal medication naloxone, while hospital officials might advocate for longer-term investments to increase staffing and treatment beds.
“People naturally want money to go toward their own field or interest,” said Kristen Pendergrass, vice president of state policy at Shatterproof.
And that can trigger hand-wringing.
In many parts of the country, for instance, people who support syringe service programs or similar interventions worry that councils with high numbers of police officers and sheriffs will instead direct large portions of the money to buy squad cars and bulletproof vests. And vice versa.
In most states, though, law enforcement and criminal justice officials make up fewer than one-fifth of council members. In Alaska and Pennsylvania, for instance, they’re not represented at all.
Outliers exist, of course. Tennessee’s 15-member council has two sheriffs, one current and one former district attorney general, a criminal court judge, and a special agent from the state Bureau of Investigation. But like many other councils, it hasn’t awarded funds to specific groups yet, so it’s too soon to tell how the council makeup will influence those decisions.
Pendergrass and Johns Hopkins researcher Sara Whaley, who together compiled the list of council members, say criticism of councils drawing too heavily from one field, geographic area, or race is not just a matter of political correctness, but of practicality.
“Having diverse representation in the room is going to make sure there is a balance on how the funds are spent,” Pendergrass said.
To this end, Courtney Gary-Allen, organizing director for the Maine Recovery Advocacy Project, and her colleagues chose early on to ensure their state’s 15-member council included people who support what’s known as harm reduction, a politically controversial strategy that aims to minimize the risks of using drugs. Ultimately, this push led to the appointment of six candidates, including Gary-Allen, to the panel. Most have personal experience with addiction.
“I feel very strongly that if these six folks weren’t on the council, harm reduction wouldn’t get a single dollar,” she said.
Others are starting to focus on potential lost opportunities.
In New Jersey, Elizabeth Burke Beaty, who is in recovery from substance use disorder, has noticed that most members of her state’s council represent urban enclaves near New York City and Philadelphia. She worries they’ll direct money to their home bases and exclude rural counties, which have the highest rates of overdose deaths and unique barriers to recovery, such as a lack of doctors to treat addiction and transportation to faraway clinics.
Natalie Hamilton, a spokesperson for New Jersey Gov. Phil Murphy, a Democrat who appointed the members, said the council represents “a wide geographic region,” including seven of the state’s 21 counties.
But only two of those represented — Burlington and Hunterdon counties — are considered rural by the state’s Office of Rural Health needs assessment. The state’s hardest-hit rural counties lack a seat at the table.
Now that most of the council seats nationwide are filled, worries about racial equity are growing.
Louisiana, where nearly a third of the population is Black, has no Black council members. In Ohio, where Black residents are dying of overdoses at the highest rates, only one of the 29 council members is Black.
“There’s this perception that this money is not for people who look like me,” said Philip Rutherford, who is chief operating officer of Faces & Voices of Recovery and is Black. His group organizes people in recovery to advocate on addiction issues.
In several states, residents have lamented the lack of council members with firsthand knowledge of addiction, who can direct settlement dollars based on personal experiences with the treatment and criminal justice systems. Instead, councils are saturated with treatment providers and health care organizations.
And this, too, raises eyebrows.
“Service providers are going to have a monetary interest,” said Tracie M. Gardner, who leads policy advocacy at the New York-based Legal Action Center. Although most are good people running good treatment programs, they have an inherent conflict with the goal of making people well and stable, she said.
“That is work to put treatment programs out of business,” Gardner said. “We must never forget the business model. It was there for HIV, it was there for covid, and it’s there for the overdose epidemic.”
Councils in South Carolina and New York have already seen some controversy in this vein — when organizations associated with members pursued or were awarded funding. It’s not a particularly surprising occurrence, since the members are chosen for their prominent work in the field.
Both states’ councils have robust conflict-of-interest policies, requiring members to disclose professional and financial connections. New York also has a law precluding council members from using their position for financial gain, and South Carolina uses a rubric to objectively score applications.
That these situations cause alarm regardless shows how much hope and desperation is tied up in this money — and the decisions over who controls it.
“This is the biggest infusion of funding into the addiction treatment field in at least 50 years,” said Gardner. “It’s money coming into a starved system.”
Database Methodology
The list of council members’ names used to build the database was compiled by Johns Hopkins University’s Sara Whaley and Henry Larweh and Shatterproof’s Kristen Pendergrass and Eesha Kulkarni. All council members, even those without voting power, were listed.
Although many states have councils to address the opioid crisis generally, the database focused specifically on councils overseeing the opioid settlement funds. A council’s scope of power was classified as “decision-making” if it directly controls allocations. “Advisory” means the council provides recommendations to another body, which makes final funding decisions.
The data is current as of June 9, 2023.
KFF Health News’ Aneri Pattani, Colleen DeGuzman, and Megan Kalata analyzed the data to determine which categories council members represent, based on the following rules:
— Each council member can be counted in only one category. There is no duplication.
— People should be given the most descriptive categorization possible. For example, attorneys general are “elected officials,” but it is more specific to say they are “law enforcement and criminal justice” officials.
— A “government representative” is typically a government employee who is not elected and does not fit into any other descriptive category — for example, a non-elected county manager.
— People who provide direct services to patients or clients, such as physicians, nurses, therapists, and social workers, are classified as “medical and social service providers.” People with more administrative roles are typically classified as “public” or “private health and human services,” based on their organization’s public or private affiliation.
— “Lived or shared experience” refers to someone who has personally experienced a substance use disorder, has a family member with one, or has lost a loved one to the disease. Because people’s addiction experiences are not always public, only individuals explicitly appointed because of their firsthand connection or to fill a seat reserved for someone with that experience were categorized as such.
KFF Health News’ Colleen DeGuzman and Megan Kalata contributed to this report.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News' free Morning Briefing.
In recent months ominous ads about prescription drugs have flooded the TV airwaves. Perhaps by design, it’s not always clear who’s sponsoring the ads or why. Or, for that matter, why now? The short answer is that Congress is paying attention. House and Senate members from both parties have launched at least nine bills, parts of which may be packaged together this fall, that take aim at pharmacy benefit managers, companies that channel prescription drugs to patients. Here’s a primer to help you decipher what’s happening. What are pharmacy benefit managers? Known as PBMs, these companies were cr...
LORIMOR, Iowa — Babe the goat is trendier than she looks. Babe lives a quiet life on a hillside farm in southern Iowa, where she grazes on grass with a small herd of fellow goats. Her owner, Stacy Wistock, milks her twice a day. Wistock takes precautions to keep the milk clean, but she rarely pasteurizes it. Until recently, she gave it away to family and friends. Now, she’ll make a little money off it. Iowa legislators decided this spring to join dozens of other states in allowing small producers to sell unpasteurized milk from cows, goats, and sheep. Public health authorities and major dairy ...
SUFFOLK, Va. — When Kristie Fields was undergoing treatment for breast cancer nine years ago, she got some unsolicited advice at the hospital: Share your story on the local news, a nurse told her. Viewers would surely send money.
Fields, a Navy veteran and former shipyard worker, was 37 and had four kids at home. The food processing plant where her husband worked had just closed. And Fields’ medical care had left the family thousands of dollars in debt.
It was a challenging time, said Fields, who has become an outspoken advocate for cancer patients in her community. But Fields and her husband, Jermaine, knew they wouldn’t go public with their struggles. “We just looked at each other like, ‘Wait. What?’” Fields recalled. “No. We’re not doing that.”
It was partly pride, she said. But there was another reason, too. “A lot of people have misperceptions and stereotypes that most African American people will beg,” explained Fields, who is Black. “You just don’t want to be looked at as needy.”
Health care debt now burdens an estimated 100 million people in the U.S., according to a KFF Health News-NPR investigation. And Black Americans are 50% more likely than white Americans to go into debt for medical or dental care.
But while people flock to crowdfunding sites like GoFundMe seeking help with their medical debts, asking strangers for money has proven a less appealing option for many patients.
Black Americans use GoFundMe far less than white Americans, studies show. And those who do typically bring in less money.
The result threatens to deepen long-standing racial inequalities.
“Our social media is inundated with stories of campaigns that do super well and that are being shared all over the place,” said Nora Kenworthy, a health care researcher at the University of Washington in Bothell who studies medical crowdfunding. “Those are wonderful stories, and they’re not representative of the typical experience.”
In one recent study, Kenworthy and other researchers looked at 827 medical campaigns on GoFundMe that in 2020 had raised more than $100,000. They found only five were for Black women. Of those, two had white organizers.
GoFundMe officials acknowledge that the platform is an imperfect way to finance medical bills and that it reaches only a fraction of people in need. But for years, health care has been the largest category of campaigns on the site. This year alone, GoFundMe has recorded a 20% increase in cancer-related fundraisers, said spokesperson Heidi Hagberg. As Fields learned, some medical providers even encourage their patients to turn to crowdfunding.
The divergent experience of Black patients with this approach to medical debt may reflect the persistent wealth gap separating Black and white Americans, Kenworthy said. “Your friends tend to be the same race as you,” she said. “And so, when you turn to those friends through crowdfunding for assistance, you are essentially tapping into their wealth and their income.”
Nationally, the median white family now has about $184,000 in assets such as homes, savings, and retirement accounts, according to an analysis by the Federal Reserve Bank of St. Louis. The assets of the median Black family total just $23,000.
But there is another reason Black Americans use crowdfunding less, Fields and others said: a sensitivity about being judged for seeking help.
Fields is the daughter of a single mom who worked fast-food jobs while going to school. The family never had much. But Fields said her mother gave her and her brother a strict lesson: getting a hand from family and friends is one thing. Asking strangers is something else.
“In the Black community, a lot of the older generation do not take handouts because you are feeding into the stereotype,” Fields said.
Her mother, whom Fields said never missed paying a bill, refused to seek assistance even after she was diagnosed with late-stage cancer that drove her into debt. She died in 2019.
Confronting the stereotypes can be painful, Fields said. But her mother left her with another lesson. “You can’t control people’s thoughts,” Fields said at a conference in Washington, D.C., organized by the National Coalition for Cancer Survivorship. “But you can control what you do.”
Fields said she was fortunate that she and her husband could rely on a tight network of relatives and friends during her cancer treatment.
“I have a strong family support system. So, one month my mom would take the car payment, and his aunt would do the groceries or whatever we needed. It was always someone in the family that said, ‘OK, we got you.’”
That meant she didn’t have to turn to the local news or to a crowdfunding site like GoFundMe.
UCLA political scientist Martin Gilens said Fields’ sensitivity is understandable. “There’s a sort of a centuries-long suspicion of the poor, a cynicism about the degree of true need,” said Gilens, the author of “Why Americans Hate Welfare.”
Starting in the 1960s, that cynicism was reinforced by the growing view that poverty was a Black problem, even though there are far more white Americans living in poverty, according to census data. “The discourse on poverty shifted in a much more negative direction,” Gilens explained, citing a rise in critical media coverage of Black Americans and poor urban neighborhoods that helped drive a backlash against government assistance programs in the 1980s and ’90s.
Fields, whose cancer is in remission, resolved that she would help others sidestep this stigma.
After finishing treatment, she and her family began delivering groceries, gas cards, and even medical supplies to others undergoing cancer treatment.
Fields is still working to pay off her medical debt. But this spring, she opened what she calls a cancer care boutique in a strip mall outside downtown Suffolk. PinkSlayer, as it’s called, is a nonprofit store that offers wigs, prosthetics, and skin lotions, at discounted prices.
“The one thing my mom always said was, ‘You fight whatever spirit that you don’t want near you,’” Fields said as she cut the ribbon on the store at a ceremony attended by friends and relatives. “We are fighting this cancer thing.”
In one corner of her small boutique, Fields installed a comfortable couch under a mural of pink and red roses. “When someone is in need, they don’t want to be plastered all over your TV, all over Facebook, Instagram,” Fields explained recently after opening the store. “They want to feel loved.”
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News' free Morning Briefing.
For support, call Trans Lifeline at 877-565-8860 or The Trevor Project at 866-488-7386; or text to 678-678.
Josie had put off packing long enough. The high school sophomore in St. Augustine, Florida, sat on her bed while her mom, Sarah, pulled clothes from her closet.
It held a trove of good memories — like the red dress Josie wore to the winter homecoming dance and a pink cover-up she sported at a friend’s pool party. Good times like these have felt scarce lately. Josie, who’s transgender, no longer feels welcome in Florida.
Her family requested they be identified by their first names only, fearing retaliation in a state where Republican Gov. Ron DeSantis and other officials have proposed, politicized, and passed policies in health care and education that limit identity expression, access to certain school activities, and accommodations for trans people.
The ACLU is tracking bills it calls an “attack on LGBTQ rights, especially transgender youth.” State legislation has forced some residents like Josie to rethink where they want to call home.
Josie moved more than a thousand miles from St. Augustine — and her parents — to start a new life in Rhode Island and stay with her aunt and uncle, who live outside Providence.
Preparing her for the move, Josie’s mom held up outfits and asked, “Staying or going?”
The formal dress could stay behind. Cardigans and overalls went in the suitcase. At one point, the family dog, Reesie, crawled past the luggage to snuggle up to Josie.
“She has a sense when I’m sad, and just comes running in,” said Josie, 16.
Moving to Rhode Island had been Plan B for some time, but Josie said she never thought it would happen. Much has changed in the past year.
Florida is one of more than a dozen states that have passed bans on gender-affirming medical treatments for minors, such as puberty blockers, hormone therapy, and certain surgeries.
Florida’s medical boards began debating those bans last summer. For months, Josie was terrified she would lose access to hormones she takes to help her body align with her identity.
Board members argued gender-affirming treatments were “experimental” and, in March, barred doctors from prescribing them to minors. They allowed children who had already started care to continue. But Josie didn’t trust that her access would last.
This spring, the legislature considered forcing all trans youth to stop treatment by Dec. 31, part of a bill to bolster restrictions on transgender care.
“I thought that they would realize what they’ve done wrong and repeal some things,” Josie said. “But they just kept going. It just became, like, too real, too fast.”
Lawmakers ended up stripping that provision just before the session ended this month, allowing young people like Josie to stay in treatment.
But she had already made her decision to move out of state. School has been challenging at times since Josie came out as trans in eighth grade. Some childhood friends rejected her.
Josie wanted to play on the girls tennis team, but Florida law bans trans girls and women from competing on school teams meant for athletes assigned female at birth.
She said living in Florida was also especially painful after the state passed the Parental Rights in Education law, which “prohibits classroom discussion about sexual orientation or gender identity in certain grade levels.” Critics call it the “Don’t Say Gay” law and said it has had a chilling effect on some teachers. Josie noticed stickers signifying that areas were “safe spaces” for LGBTQ+ people had been taken down at school.
“Which is just ridiculous, like you want your students to be comfortable and safe,” she said.
The new laws and anti-trans rhetoric are hurting kids across Florida, said Jennifer Evans, a clinical psychologist at the University of Florida’s Youth Gender Program in Gainesville.
“I’m seeing more anxiety, more depression,” Evans said. “Things I hear patients say are, ‘The government doesn’t want me to exist.’ They don’t feel safe.”
States are pushing measures on all sorts of gender-related issues — not just health care, but what schools can teach or which bathrooms people can use.
Bills don’t have to pass to cause harm, said Evans, who is queer.
“It’s a lot to feel like enough people in this country don’t agree with your existence — which actually isn’t affecting them — that people want to shut down other people’s access to living complete and affirmed lives,” she said. “It’s painful to see that.”
Four families who sought care at Evans’ clinic have already left Florida, she said, while another 10 plan to move this year. Some older teens she treats also want to get out when they turn 18.
But moving isn’t easy for many families.
“Just financially, it’s difficult to uproot what we’ve set up,” Josie’s dad, Eric, said.
They’ve owned their home in St. Augustine for a long time. Eric recently started a new job. Josie’s mom, Sarah, works at a private college that offers a benefit that allows Josie and her older sister to get reduced tuition at some colleges around the country.
So her parents decided that, at least for now, Josie would go live with her aunt and uncle and they would stay behind.
The choice was devastating.
“It was just terror in my heart, like you could just feel that cold burst in my chest just going all throughout my body,” said Sarah. “Josie is part of everything I do.”
Josie will finish her sophomore year in Rhode Island before returning to St. Augustine for summer break. Her family sees it as a trial run for what could be years of separation.
One night before Josie left, she invited friends over for a going-away party. The teens played a dance video game, laughing as they performed a hip-hop routine.
Sarah brought out a Black Forest cake. “We love you Josie” was piped in frosting along the platter, framed by two hearts.
It was a simple but powerful send-off from the support system Josie has relied on in Florida. A few days later, she and her mom flew north to get Josie settled. Leaving her daughter in Rhode Island was “agony,” Sarah said.
“I was a mess,” she said. “I cried the whole way to the airport. I just felt I was going the wrong way.”
Sarah is still adjusting to life without Josie at home, but they talk every day. And Josie is getting used to her new environment. Her aunt and uncle have been great, she said, and she’s making friends at school.
Her new school is a little smaller than her old one and in a community that feels more liberal-minded, the family said. Josie said she loves seeing pride flags in the halls and plans to join the Gender and Sexuality Alliance Club. It all feels like a “bombardment of support.”
“It was just, like, such a shock to me — like, not a bad shock, but, like, just shocked that this is how schools can be,” Josie said. “It’s just that Florida’s choosing not to be like that.”
DeSantis’ office did not respond to several requests for comment to address concerns of families like Josie’s.
Since Josie moved to Rhode Island in April, DeSantis has signed four bills that would curb health care and gender expression of trans people.
Josie’s parents said they’ll keep their pride flag waving in the front yard and advocate for equality while she’s away.
Josie said she thinks about the trans kids who can’t leave and urged them not to give up hope. But right now, she needs to move on.
This article is from a partnership that includes WUSF, NPR, and KFF Health News.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News' free Morning Briefing.
Catherine Reitzel’s multiple sclerosis medication costs nearly $100,000 a year. Kris Garcia relies on a drug for a blood-clotting disorder that runs $10,000 for a three-day supply. And Mariana Marquez-Farmer would likely die within days without her monthly $300 vial of insulin.
At best, a Colorado panel of medical and pharmacy experts seeking to cut the costs of expensive drugs will be able to help only one of them.
Starting this summer, the state’s Prescription Drug Affordability Board will choose up to 18 high-cost drugs for review over the next three years to determine if the medications are unaffordable and whether to cap what health plans and consumers pay for them.
But with hundreds of expensive drugs to choose from, the board members face tough decisions about who will get help now and who will have to wait.
Do they tackle drugs with extremely high costs taken by only a handful of patients, or drugs with merely very high costs taken by a larger group? Should they consider only out-of-pocket costs paid by consumers, such as for insulin, whose copays Colorado caps at $50 a month, or the total cost of the drug to the health system? Will they weigh only drug prices, or will they try to right social wrongs with their choices?
And what does “affordable” even mean?
“That question alone is a lot harder to answer than it might seem at face value,” said Jennifer Reck, project director for the National Academy for State Health Policy’s Center for State Prescription Drug Pricing. “You immediately get into how utterly complex our drug supply chain is, how opaque it is, how many different prices there are,” she said.
Maryland was the first state to establish a drug affordability board in 2019, but funding challenges and the pandemic have slowed its progress. Colorado passed a bill creating its board in 2021 and has already moved ahead of Maryland in the process. Washington followed in 2022 but is still in its early phases of implementation.
Maine, New Hampshire, Ohio, and Oregon have also established boards, but they lack the power to limit drug payments. And at the federal level, the Inflation Reduction Act of 2022 included a provision requiring the Health and Human Services secretary to negotiate prices with drug companies for a small number of the most costly medications covered by Medicare.
It’s taken years for the Colorado and Maryland board members to create all the rules and regulations to govern their work before getting to the point of looking at specific drugs.
“It’s just a long, tortuous government process to get things up and running,” said Gerard Anderson, a professor of health policy and management at Johns Hopkins University, and a member of Maryland’s board. “You basically have to dot every ‘i’ and cross every ‘t’ in order not to get sued.”
Setting Priorities
On May 12, Colorado released its first list of hundreds of drugs eligible for review, mostly because they each cost more than $30,000 for a course of treatment. Next month, they’ll release a dashboard ranking those drugs according to the board’s priorities. The dashboard can also be used to examine which drugs have the highest price tags, which have had the largest increases in price, and which the state spends the most on. That would allow the board to begin affordability reviews this summer and set payment limits for the first four to eight drugs sometime in 2024. But board members will first have to set their priorities, and those could change from year to year.
“Maybe one year we focus on the impact to the system, and another year we focus on out-of-pocket costs, and one year we focus on a lifesaving drug that has smaller utilization,” said Lila Cummings, director of the Colorado board.
Such approaches could pit one group of patients against others looking for cost relief. But Cummings said not all groups are eager to see payment limits.
“Some of them said, ‘We want the board to focus on our drugs,’ and others said, ‘Please leave us alone,’” she said.
That reluctance likely reflects the close ties that some patient groups have with the manufacturers of their medications, including receiving funding from the drugmakers.
“We have seen cases in public hearings — it seems counterintuitive or surprising — where a patient group, instead of being thrilled that they might have access to the drugs at a lower price, instead are arguing against upper payment limits,” Reck said. “But in most cases, there’s a pretty clear financial connection to drug manufacturers.”
Maryland has also received input from patient groups as it finalizes its regulations.
“So far it has not been, ‘Pick me! Pick me! Pick me!’” Anderson said. But that could change once the Maryland board begins its affordability reviews this fall.
The drug that Garcia, 47, of Denver, takes did not make the board’s list. Diagnosed with four bleeding disorders, including von Willebrand disease, he needs the medication Humate-P, made by CSL Behring, to replace one of the clotting factors missing in his blood. This winter, driving home from his job at the airport, Garcia hit a patch of black ice, spun out, and careened into a concrete barrier at 75 mph. He needed the expensive medication every day for the first five days after the accident, and then every other day for a full month.
“It’s not like I can just sit there and say no to this medication, because my bleeds get so bad,” he said.
According to Perry Jowsey, executive director of the National Hemophilia Foundation’s Colorado chapter, about 300 to 400 individuals are being treated for von Willebrand disease in Colorado. That’s far fewer than the roughly 10,000 Coloradans with MS or the 74,000 who manage their diabetes with insulin.
“In my shoes, I would target what would help the most people,” Garcia said. “You have to find a balance, especially starting out. You’re not going to be able to help everyone.”
The Colorado and Maryland boards will rely on data from state databases that show how much various public and private health plans pay for drugs. That data, however, doesn’t capture what uninsured patients pay, and it doesn’t give any insight into how much manufacturers pay for research and development.
“The goal is not to stifle innovation,” Anderson said. “But we can’t get any public data, so we have to ask the pharmaceutical industry, and they’re not required to give us the data.”
The boards want to ensure that patients like Reitzel still have access to new and better therapies. Reitzel, 38, of Highlands Ranch, was diagnosed with multiple sclerosis in 2008 and has switched medications several times seeking one whose side effects she could tolerate. “They’re all terrible in their own special way,” she said.
In 2021, she began taking a relatively new drug from Biogen and Alkermes called Vumerity, which was included on Colorado’s list of eligible drugs. But the cost of a three-month supply was nearly $24,000, including a copay of more than $7,000. Biogen provides up to $20,000 in annual copay assistance through a debit card she can use at the pharmacy. But now her health plan no longer credits those payments toward her deductible. It makes it almost impossible for her to meet the $25,000 out-of-pocket maximum under her plan.
“Primarily for this reason, I am no longer taking any medication,” Reitzel said, “and have to only hope my disease does not progress.”
Colorado legislators passed a bill to require health plans to count copay assistance programs toward patients’ deductibles for drugs with no generic equivalents, but that provision does not take effect until 2025.
Insulin as an Outlier?
Just a couple of years ago, insulin may have been a higher priority for drug affordability boards, but now it’s not so clear. Both Colorado and Maryland have established insulin copay caps that provide pocketbook relief, at least for patients with coverage. And manufacturers are making their own moves to lower insulin prices. That could prompt the boards to bypass insulin and concentrate their limited resources on other high-cost drugs.
Copay caps do not lower the actual cost of insulin but instead spread it among members of the health plan through higher premiums. The Colorado copay caps don’t help new state residents and initially did not help those without insurance, either. Both of those hurdles would have applied to Marquez-Farmer when she moved from California to Colorado Springs a couple of years ago.
“I got married to my husband during covid because I didn’t have insurance,” she said. “I loved him, and it all worked out, but a big reason for me to marry him was because I would not be able to afford insulin.”
Marquez-Farmer, 34, said that while insulin may not be the most expensive drug on the market, many Coloradans, particularly those from marginalized communities who have higher rates of diabetes, struggle to afford it.
“I’m not saying the other medicines are not important, because obviously they are,” she said. “The reality is there’s more people who are being affected by not being able to afford their insulin and a lot of people who are dying because of them rationing insulin.”
Andrew York, executive director of the Maryland board, said the payment limits should be viewed as a last resort, a tool that can be used when other cost-control measures haven’t worked.
“The goal is for folks to never be able to say that they can’t afford their insulin. And I think we may get there soon enough just because of how much is happening in that space,” he said. “So if that’s the case, then maybe boards don’t need to use the upper payment limit tool.”
At least one form of insulin was included on Colorado’s list of drugs eligible for review, but not the most commonly taken brand-name insulins. That precludes the Colorado board from addressing insulin costs more broadly.
The pharmaceutical industry has pushed back against the concept of payment limits, warning that drugmakers could pull out of states that set payment limits.
“The boards are acutely aware of this discussion point. The interest and the purpose of these boards is to increase access to the drugs, not decrease it,” York said. “But there’s kind of this game theory element of: How will manufacturers react?”
Reck discounted the notion that a payment limit would prompt a manufacturer to abandon a profitable market.
“Unfortunately, it’s kind of a scary message and it can be impactful on patients,” she said.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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