When the Indian Health Service can’t provide medical care to Native Americans, the federal agency can refer them elsewhere. But each year, it rejects tens of thousands of requests to fund those appointments, forcing patients to go without treatment or pay daunting medical bills out of their own pockets.

In theory, Native Americans are entitled to free health care when the Indian Health Service foots the bill at its facilities or sites managed by tribes. In reality, the agency is chronically underfunded and understaffed, leading to limited medical services and leaving vast swaths of the country without easy access to care.

Its Purchased/Referred Care program aims to fill gaps by paying outside providers for services patients might be unable to get through an agency-funded clinic or hospital, such as cancer treatment or pregnancy care. But resource shortages, complex rules, and administrative fumbles severely impede access to the referral program, according to patients, elected officials, and people who work with the agency.

The Indian Health Service, part of the Department of Health and Human Services, serves about 2.6 million Native Americans and Alaska Natives.

Native Americans qualify for the referred-care program if they live on tribal land — only 13% do — or within their nation’s “delivery area,” which usually includes surrounding counties. Those who live in another tribe’s delivery area are eligible in limited cases, while Native Americans who live beyond such borders are excluded.

Eligible patients aren’t guaranteed funding or timely help, however. Some of the Indian Health Service’s 170 service units exhaust their annual pool of money or reserve it for the most serious medical concerns.

Referred-care programs denied or deferred nearly $552 million in spending for about 120,000 requests from eligible patients in fiscal year 2022.

As a result, Native Americans might forgo care, increasing the risk of death or serious illness for people with preventable or treatable medical conditions.

The problem isn’t new. Federal watchdog agencies have reported concerns with the program for decades.

Connie Brushbreaker, a member of the Rosebud Sioux Tribe, has been denied or waitlisted for funding at least 14 times since 2018. She said it doesn’t make sense that the agency sometimes refuses to pay for treatment that will later be approved once a health problem becomes more serious and expensive.

“We try to do this preventative stuff before something gets to the point where you need surgery,” said Brushbreaker, who lives on her tribe’s reservation in South Dakota.

Many Native Americans say the U.S. government is violating its treaties with tribal nations, which often promised to provide for the health and welfare of tribes in return for their land.

“I keep having my elders here saying, ‘There’s treaty rights that say they’re supposed to be able to provide these services to us,’” said Lyle Rutherford, a council member for the Blackfeet Nation in northwestern Montana who said he also worked at the Indian Health Service for 11 years.

Native Americans have high rates of diseases compared with the general population, and a median age of death that’s 14 years younger than that of white people. Researchers who have studied the issue say many problems stem from colonization and government policies such as forcing Indigenous people into boarding schools and isolated reservations and making them give up healthy traditions, including bison hunting and religious ceremonies. They also cite an ongoing lack of health funding.

Congress budgeted nearly $7 billion for the Indian Health Service this year, of which roughly $1 billion is set aside for the referred-care program. A committee of tribal health and government leaders has long made funding recommendations that far exceed the agency’s budget. Its latest report says the Indian Health Service needs $63 billion to cover patients’ needs for fiscal year 2026, including $10 billion for referred care.

Brendan White, an agency spokesperson, said improving the referred-care program is a top goal of the Indian Health Service. He said about 83% of the health units it manages have been able to approve all eligible funding requests this year.

White said the agency recently improved how referred-care programs prioritize such requests and it is tackling staff shortages that can slow down the process. An estimated third of positions within the referred-care program were unfilled as of June, he said.

The Indian Health Service also recently expanded some delivery areas to include more people and is studying whether it can afford to create statewide eligibility in the Dakotas.

Jonni Kroll of the Little Shell Tribe of Chippewa Indians of Montana doesn’t qualify for the referred-care program because she lives in Deer Park, Washington, nearly 400 miles from her tribe’s headquarters.

She said tying eligibility to tribal lands echoes old government policies meant to keep Indigenous people in one place, even if it means less access to jobs, education, and health care.

Kroll, 58, said she sometimes worries about the medical costs of aging. Moving to qualify for the program is unrealistic.

“We have people that live all across the nation,” she said. “What do we do? Sell our homes, leave our families and our jobs?”

People applying for funding face a system so complicated that the Indian Health Service created flowcharts outlining the process.

Misty and Adam Heiden, of Mandan, North Dakota, experienced that firsthand. Their nearest Indian Health Service hospital no longer offers birthing services. So, late last year, Misty Heiden asked the referred-care program to pay for the delivery of their baby at an outside facility.

Heiden, 40, is a member of the Sisseton-Wahpeton Oyate, a South Dakota-based tribe, but lives within the Standing Rock Sioux Tribe’s delivery area. Native Americans who live in another tribe’s area, as she does, are eligible if they have close ties. Even though she is married to a Standing Rock tribal member, Heiden was deemed ineligible by hospital staff.

Now, the family has had to cut into its grocery budget to help pay off more than $1,000 in medical debt.

“It was kind of a slap in the face,” Adam Heiden said.

White, the Indian Health Service spokesperson, said many providers offer educational materials to help patients understand eligibility. But the Standing Rock rules, for example, aren’t fully explained in its brochure.

When patients are eligible, their needs are ranked using a medical priority list.

Connie Brushbreaker’s doctor at the Indian Health Service hospital in Rosebud, South Dakota, said she needed to see an orthopedic surgeon. But hospital staffers said the unit covers only patients at imminent risk of dying.

She said that, at one point, a worker at the referred-care program told her she could handle her pain, which was so intense she had to limit work duties and rely on her husband to put her hair in a ponytail.

“I feel like I am being tossed aside, like I do not matter,” Brushbreaker wrote in an appeal letter. “I am begging you to reconsider.”

The 55-year-old was eventually approved for funding and had surgery this July, two years after injuring her shoulder and four months after her referral.

Patients said they sometimes have trouble reaching referred-care departments due to staffing problems.

Patti Conica, a member of the Standing Rock Sioux Tribe, needed emergency care after developing a serious infection in June 2023. She said she applied for funding to cover the cost but has yet to receive a decision on her case despite repeated phone calls to referred-care staffers and in-person visits.

“I’ve been given the runaround,” said Conica, 58, who lives in Fort Yates, North Dakota, her tribe’s headquarters.

She now faces more than $1,500 in medical bills, some of which have been turned over to a collection agency.

Tyler Tordsen, a Republican state lawmaker and member of the Sisseton-Wahpeton Oyate in South Dakota, says the referred-care program needs more funding but officials could also do a “better job managing their finances.”

Some service units have large amounts of leftover funding. But it’s unclear how much of this money is unspent dollars versus earmarked for approved cases going through billing.

Meanwhile, more tribes are managing their health care facilities — an arrangement that still uses agency money — to try new ways to improve services.

Many also try to help patients receive outside care in other ways. That can include offering free transportation to appointments, arranging for specialists to visit reservations, or creating tribal health insurance programs.

For Brushbreaker, begging for funding “felt like I had to sell my soul to the IHS gods.”

“I’m just tired of fighting the system,” she said.

Have you had an experience navigating the Indian Health Service’s Purchased/Referred Care program that you’d like to share with KFF Health News for our reporting? Tell us here.

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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Christina Kashiwada was traveling for work during the summer of 2018 when she noticed a small, itchy lump in her left breast.

She thought little of it at first. She did routine self-checks and kept up with medical appointments. But a relative urged her to get a mammogram. She took the advice and learned she had stage 3 breast cancer, a revelation that stunned her.

“I’m 36 years old, right?” said Kashiwada, a civil engineer in Sacramento, California. “No one’s thinking about cancer.”

About 11,000 Asian American and Pacific Islander women were diagnosed with breast cancer in 2021 and about 1,500 died. The latest federal data shows the rate of new breast cancer diagnoses in Asian American and Pacific Islander women — a group that once had relatively low rates of diagnosis — is rising much faster than that of many other racial and ethnic groups. The trend is especially sharp among young women such as Kashiwada.

About 55 of every 100,000 Asian American and Pacific Islander women under 50 were diagnosed with breast cancer in 2021, surpassing the rate for Black and Hispanic women and on par with the rate for white women, according to age-adjusted data from the National Institutes of Health. (Hispanic people can be of any race or combination of races but are grouped separately in this data.)

The rate of new breast cancer cases among Asian American and Pacific Islander women under 50 grew by about 52% from 2000 through 2021. Rates for AAPI women 50 to 64 grew 33% and rates for AAPI women 65 and older grew by 43% during that period. By comparison, the rate for women of all ages, races, and ethnicities grew by 3%.

Researchers have picked up on this trend and are racing to find out why it is occuring within this ethnically diverse group. They suspect the answer is complex, ranging from cultural shifts to pressure-filled lifestyles — yet they concede it remains a mystery and difficult for patients and their families to discuss because of cultural differences.

Helen Chew, director of the Clinical Breast Cancer Program at UC Davis Health, said the Asian American diaspora is so broad and diverse that simple explanations for the increase in breast cancer aren’t obvious.

“It’s a real trend,” Chew said, adding that “it is just difficult to tease out exactly why it is. Is it because we’re seeing an influx of people who have less access to care? Is it because of many things culturally where they may not want to come in if they see something on their breast?”

There’s urgency to solve this mystery because it’s costing lives. While women in most ethnic and racial groups are experiencing sharp declines in breast cancer death rates, about 12 of every 100,000 Asian American and Pacific Islander women of any age died from breast cancer in 2023, essentially the same death rate as in 2000, according to age-adjusted, provisional data from the Centers for Disease Control and Prevention. The breast cancer death rate among all women during that period dropped 30%.

The CDC does not break out breast cancer death rates for many different groups of Asian American women, such as those of Chinese or Korean descent. It has, though, begun distinguishing between Asian American women and Pacific Islander women.

Nearly 9,000 Asian American women died from breast cancer from 2018 through 2023, compared with about 500 Native Hawaiian and Pacific Islander women. However, breast cancer death rates were 116% higher among Native Hawaiian and Pacific Islander women than among Asian American women during that period.

Rates of pancreatic, thyroid, colon, and endometrial cancer, along with non-Hodgkin lymphoma rates, have also recently risen significantly among Asian American and Pacific Islander women under 50, NIH data show. Yet breast cancer is much more common among young AAPI women than any of those other types of cancer — especially concerning because young women are more likely to face more aggressive forms of the disease, with high mortality rates.

“We’re seeing somewhere almost around a 4% per-year increase,” said Scarlett Gomez, a professor and epidemiologist at the University of California-San Francisco’s Helen Diller Family Comprehensive Cancer Center. “We’re seeing even more than the 4% per-year increase in Asian/Pacific Islander women less than age 50.”

Gomez is a lead investigator on a large study exploring the causes of cancer in Asian Americans. She said there is not yet enough research to know what is causing the recent spike in breast cancer. The answer may involve multiple risk factors over a long period of time.

“One of the hypotheses that we’re exploring there is the role of stress,” she said. “We’re asking all sorts of questions about different sources of stress, different coping styles throughout the lifetime.”

It’s likely not just that there’s more screening. “We looked at trends by stage at diagnosis and we are seeing similar rates of increase across all stages of disease,” Gomez said.

Veronica Setiawan, a professor and epidemiologist at the Keck School of Medicine of the University of Southern California, said the trend may be related to Asian immigrants adopting some lifestyles that put them at higher risk. Setiawan is a breast cancer survivor who was diagnosed a few years ago at the age of 49.

“Asian women, American women, they become more westernized so they have their puberty younger now — having earlier age at [the first menstrual cycle] is associated with increased risk,” said Setiawan, who is working with Gomez on the cancer study. “Maybe giving birth later, we delay childbearing, we don’t breastfeed — those are all associated with breast cancer risks.”

Moon Chen, a professor at the University of California-Davis and an expert on cancer health disparities, added that only a tiny fraction of NIH funding is devoted to researching cancer among Asian Americans.

Whatever its cause, the trend has created years of anguish for many patients.

Kashiwada underwent a mastectomy following her breast cancer diagnosis. During surgery, doctors at UC Davis Health discovered the cancer had spread to lymph nodes in her underarm. She underwent eight rounds of chemotherapy and 20 sessions of radiation treatment.

Throughout her treatments, Kashiwada kept her ordeal a secret from her grandmother, who had helped raise her. Her grandmother never knew about the diagnosis. “I didn’t want her to worry about me or add stress to her,” Kashiwada said. “She just would probably never sleep if she knew that was happening. It was very important to me to protect her.”

Kashiwada moved in with her parents. Her mom took a leave from work to help take care of her.

Kashiwada’s two young children, who were 3 and 6 at the time, stayed with their dad so she could focus on her recovery.

“The kids would come over after school,” she said. “My dad would pick them up and bring them over to see me almost every day while their dad was at work.”

Kashiwada spent months regaining strength after the radiation treatments. She returned to work but with a doctor’s instruction to avoid lifting heavy objects.

Kashiwada had her final reconstructive surgery a few weeks before COVID lockdowns began in 2020. But her treatment was not finished.

Her doctors had told her that estrogen fed her cancer, so they gave her medicine to put her through early menopause. The treatment was not as effective as they had hoped. Her doctor performed surgery in 2021 to remove her ovaries.

More recently, she was diagnosed with osteopenia and will start injections to stop bone loss.

Kashiwada said she has moved past many of the negative emotions she felt about her illness and wants other young women, including Asian American women like her, to be aware of their elevated risk.

“No matter how healthy you think you are, or you’re exercising, or whatever you’re doing, eating well, which is all the things I was doing — I would say it does not make you invincible or immune,” she said. “Not to say that you should be afraid of everything, but just be very in tune with your body and what your body’s telling you.”

Phillip Reese is a data reporting specialist and an associate professor of journalism at California State University-Sacramento.

This article was produced by KFF Health News , which publishes California Healthline , an editorially independent service of the California Health Care Foundation . Supplemental support comes from the Asian American Journalists Association-Los Angeles through The California Endowment.

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

But this time, he was seeking to benefit others, too.

“In these last 10 years, I went through a divorce, I moved, and just had a lot of personal stuff that I went through,” Scott said. “So turning 50 feels kind of more reflective. I wanted to do something big, but I wanted to do it in a way where I could give back.”

So now, Scott is riding his bicycle 588 miles across Virginia — and raising money for charity — to celebrate his 50 years.

It all began in early 2023, when Scott — a former college English teacher who now runs a fledgling business called Fennario Coffee Roasters — began talking to one of his new customers at the Farmer’s Market in Hilton Village.

That customer, Caroline Dutle, is the director of development at THRIVE Peninsula, a nonprofit that provides food and financial, housing and utilities assistance for those in need.

When THRIVE received a large whole-bean coffee donation a few months later, Dutle thought of her “coffee guy” and asked Scott if he’d be willing to grind the beans down before it’s given away.

“Most of our clients can’t afford coffee, let alone a coffee grinder,” Dutle said. “So a donation isn’t too helpful if it’s in bean form.”

Scott immediately said yes.

“He came to check out our facility, and has been really active and involved in supporting us ever since,” Dutle said. “So it all started with coffee beans.”

Scott took the beans home, ground them up and returned them in packages, ready for distribution. Though most consider coffee a staple, she said, for others it’s a “luxury item.”

“Any time we can provide things beyond the necessities, it’s a real treat for our clients,” Dutle said.

THRIVE Peninsula was founded 50 years ago by several churches in Newport News’ Denbigh section, and still considers itself a Christian-based organization. But Scott said he was drawn to the fact that the nonprofit helps people of all faiths — or no faith.

“I am sensitive to people telling me what to do or trying to evangelize me,” Scott said. “But (faith) doesn’t affect who gets help or who doesn’t get help. The only thing that you have to do is qualify financially.”

“And once I saw how selfless and giving these people are, the volunteers, I was like, ‘Man, I’ve got to be involved in this somehow.’ ”

THRIVE has a pantry where people can come once a month by appointment and get about a week’s worth of groceries. It also offers financial assistance and coaching.

So when it came time for Scott to mark his 50th birthday, he decided he wanted THRIVE to be the recipient of a charity event. He came to Dutle with a concept: He’d bike 500 miles to raise $5,000 and 500 pounds of food — all multiples of 50 — to benefit the organization.

Dutle liked the idea, and helped him put the plan — and the fundraising mechanisms — into action.

It began Saturday morning at Breaks Interstate Park near the Kentucky and Virginia border. Scott will then trek the Virginia portion of the TransAmerica Trail — 588 miles — over nine days. That’s about 65 miles a day.

The route will take him south to Damascus, then northeast to Radford, Christiansburg and Lexington. He will hit the Blue Ridge Parkway, then Charlottesville, Ashland and Richmond before heading back to Hampton Roads.

Scott can be followed online in real time — at www.tinyurl.com/heathwatch — as he makes his way through the commonwealth.

Though Scott has done lengthy rides in the past, this will be the longest. He said the first several days — where the route is most mountainous — will be the most challenging.

Luckily, Scott is no stranger to physical exertion. He has been an ultra distance runner in the past. And over the past couple years, his coffee business includes a guarantee to deliver the java the next day anywhere in Newport News by bike. That also ensures he’s getting in his daily rides.

“Rain and snow doesn’t stop me,” he said. “I had a broken rib last year, and was out delivering on the bike … so it’s gonna take a lot to stop me.”

THRIVE, for one, is appreciative.

“I think it’s just such a superhuman feat that Heath is taking on, and this is just an amazing opportunity for us to be recognized in this way,” Dutle said Friday. “He’s really garnered a lot of support within the community, and it’s been very helpful to THRIVE.”

Scott will carry a tent and sleeping bag, and plans to camp on his route. It’ll be a mixture of “stealth camping” — finding a spot in wooded areas along the way — and campgrounds, and a hotel for his night in Richmond.

He’ll bring a couple days’ worth of trail food with plans to replenish in small towns along the way.

“It’s all back roads, and you’re never more than an hour or two ride from any kind of convenience store,” Scott explained.

A friend plans to meet him Thursday at the Blue Ridge Parkway to help him resupply and offer moral support. Scott’s wife, Woodside High School art teacher Heidi Compton, will meet him in the evenings starting that same night.

He plans to be back on or about Sept. 15 — his 50th birthday.

Road construction on the Capital Trail will prevent Scott from finishing at the end of the cross-country TransAmerica trail in Yorktown. So he plans to end the route at the THRIVE building on Nettles Drive in Newport News, likely arriving by way of Warwick Boulevard.

Scott has already surpassed his initial $5,000 fundraising goal. That’s in large part because of Priority Bicycles, the New York-based company that makes the bike he’s riding, a belt-driven Priority 600.

“I’ve seen them do charitable work, on everything from suicide prevention to getting kids on bikes,” Scott said of the company. “I sent them a letter explaining what I was doing, and they didn’t hesitate. They got back to me within 24 hours and said, ‘We’d love to help out.’ ”

Scott asked Priority to donate a less expensive bicycle than the $2,500 one that Scott will be riding. “And they came right back and said, ‘No, let’s do the Priority 600,’ They completely donated it, no strings attached.'”

The bike will be raffled off as part of the fundraising effort. Tickets are selling for $25 apiece or five for $100, with all proceeds counting toward the $5,000 goal. And last week, an anonymous local family kicked in $2,630 — at the time just enough to hit the $5,000 mark.

“Their anonymity will be respected, but we can assure you that they are one of the most wonderful families we’ve had had the honor to get to know,” Scott wrote on his coffee company’s Instagram page. “They are true models of how to be a good human.”

The fundraiser is now up to $5,370 and counting, with 100% of the proceeds going to THRIVE.

Canned goods and other non-perishables are being collected at THRIVE (12749 Nettles Drive) or Village Bicycles (9913 Warwick Blvd.). Both are in Newport News.

“I’m just really excited,” he said Friday before leaving for the Kentucky border. “I’m pretty humbled by the outpouring of support from folks and the interest from folks. I was doing this as a kind of a small way to help try and raise some money, and the swell of support that I’ve gotten from the community, it’s just been unbelievable.”

THRIVE will host a community day Sept. 22 with Scott, featuring refreshments, a mobile coffee bar and an opportunity to learn more about the organization’s mission. That’s also when the donated bicycle will be raffled off.

To contribute or buy a raffle ticket for the bike, go to the donation website, “50 to 5000: Heath’s Trans-Virginia Birthday Ride for THRIVE,” at givebutter.com/HeathsRide4THRIVE.

“Trading river views for mountains tomorrow,” Scott wrote Thursday on Instagram, with a picture of his bicycle near the James River. “Who knows what adventures lay ahead?”

Peter Dujardin, 757-897-2062, pdujardin@dailypress.com

LOS ANGELES — In April, a group of Orange County parents flew to Sacramento to attend a conference hosted by Disability Voices United, an advocacy group for people with disabilities and their families.

They wanted to emphasize three issues to state officials at the event: the paucity of mental health care for children with developmental disabilities, the confusing mess of government systems meant to help them, and the gaps in availability of day-to-day caregiving.

Among them was Christine LyBurtus, a single mom living in Fullerton. Last fall, after repeated rounds of 911 calls and emergency hospitalizations, she had made the agonizing decision to move her son, Noah, who is autistic, into a state-operated facility for at least a year.

LyBurtus had struggled to find the support she needed to keep him at home. “Families are being forced to give up their children to group homes and treatment centers over 12 hours from their homes … or out of the state of California entirely,” she told the crowd at the conference.

“I beg you to hear us,” she said to state officials before turning from the microphone.

Despite the growing diagnosis of autism, which has been estimated to affect more than 2 million children and teens across the country, experts and advocates have bemoaned glaring gaps in services to meet the mental health needs of autistic youth.

Some researchers have estimated that upward of 90% of autistic youth have overlapping conditions like anxiety, depression or ADHD. Many have suffered alarming levels of trauma.

Yet “there are very few specialized facilities in the country that meet the unique needs of individuals with autism and co-occurring mental health conditions,” especially in crisis situations, said Cynthia Martin, senior clinical psychologist at the Child Mind Institute, which is based in New York.

Between 2020 and 2021, the number of California children and teens served by the state developmental disability system who were deemed to have “complex needs” — a state term for those who needed a range of crisis services or landed in a locked psychiatric ward — rose from 536 to 677, according to a report released last year by the California Department of Developmental Services.

California has been working to build more facilities to house and support such youth, including STAR homes that provide “crisis stabilization” for roughly a year, like the one into which Noah moved. But the state has seen an uptick in the number of people in need of such programs, as well as more former residents boomeranging back for “further stabilization,” the state report said.

As of this summer, the STAR homes could accommodate only 15 teens across the state; the one that accepted Noah budgets for more than $1 million per resident annually.

There are other community facilities where developmentally disabled youth in crisis can be placed, but “there remains a critical need for a ‘can’t say no’ option for individuals whom private sector vendors cannot or will not serve,” the state report concluded.

Autistic people and their families have also lamented that they cannot find adequate help in their communities before they reach a crisis point. Researchers have found that mental health workers are often unprepared to work with people with intellectual or developmental disabilities or may chalk up symptoms to their disabilities, rather than overlapping needs.

“It’s pretty common for a mental health practitioner to turn away someone with a developmental disability or say, ‘I don’t serve that population,’” said Zoe Gross, director of advocacy for the Autistic Self Advocacy Network.

Alison D. Morantz, director of the Stanford Intellectual and Developmental Disabilities Law and Policy Project, called it a “scandal” that amid a scarcity of psychiatric beds for youth, “if a family member discloses that their child is on the autistic spectrum, they can say, ‘No thank you.’”

“It puts parents in impossible situations,” she said.

The biggest challenges for many families of autistic youth often surround aggression, which isn’t a core feature of autism, but the symptom of other issues that need to be uncovered, child and adolescent psychiatrist Dr. Matthew Siegel told a federal committee last year.

“You have to look underneath or in front of that … for what could be contributing or what is driving this aggression,” said Siegel, founder of the Autism and Developmental Disorders Inpatient Research Collaborative. He and other researchers have seen promising results from specialized units at hospitals, but few exist — “not even one per state.”

“Even specialized clinics that can work on these challenges are quite rare,” he said.

The Supreme Court has ruled that institutionalizing people with disabilities who could live in the community is discriminatory if a community placement “can be reasonably accommodated.” Federal investigations have, at times, faulted states for failing to provide needed services for people to stay in their homes or communities.

The law “requires that services are provided in the most integrated setting appropriate to the needs of a person with a disability,” according to the U.S. Department of Health and Human Services.

But the struggle to find needed services can end up pushing autistic people with mental health needs out of their communities. Bonnie Ivers, director of clinical services for the Regional Center of Orange County, said last year that “more and more families are having to review options that are outside of our county.”

Some Californians even go outside the state: As of June 2022, there were 49 youth with “complex needs” getting services outside of California, and an additional 33 “at risk of being referred to out-of-state resources,” according to the developmental services department.

In the following year, that number grew to 57 youth out of state — and an additional 64 who might be at risk of joining them. The numbers may actually be higher: The state agency says it learns about out-of-state placements only when families inform the regional centers that coordinate developmental disability services.

Nancy Bargmann, director of the California Department of Developmental Services, said their goal is to provide “a continuum of supports” so that families “don’t need to make that really hard decision of having their child not live at home.”

California has launched more than a dozen teams focused on crisis prevention, called START teams, which it says have helped keep people in their homes. Their services include connecting different systems that assist families, such as mental health providers and disability services.

But they do not yet exist everywhere in the state. California also has mobile “Crisis Assessment Stabilization Teams” — or CAST — that are meant for people who have exhausted other kinds of help or are at risk of having to move into more restrictive settings. There were three of them as of this spring, according to the developmental services department.

Judy Mark, president of the advocacy group Disability Voices United, argued it is counterproductive to try to stabilize a child away from his or her family. If at all possible, she said, California should be ensuring constant support in the home, which she argued would also be less costly than caring for a child in a STAR facility.

But disability services providers say that getting such caregivers has continued to be a challenge, with state rates for such workers outstripped by what they can earn elsewhere. Increases in those provider rates have been slowly phased in over time, with the next bump slated for January.

In many cases, “what you’d want to see is somebody, 24 hours a day, in the home helping the parent,” said Larry Landauer, executive director of the Regional Center of Orange County. But “that’s where we have been just drastically short on staffing.”

All the gaps in the system can come to a head when young people with developmental disabilities hit puberty, especially if they face “the inability to communicate in such a complex and confusing time,” said California Commission on Disability Access member Hector Ramírez, who is autistic and lives in the San Fernando Valley.

If autistic teens and their families cannot get the support they need, Ramírez said, it “has compounding consequences that result in people just getting worse — when they shouldn’t be getting worse.”

©2024 Los Angeles Times. Visit at latimes.com. Distributed by Tribune Content Agency, LLC.

Many would agree with you. We often hear people asking, “Where has the time gone? It just seems like yesterday.” 

Can you remember sitting through a boring lecture? Five minutes may have felt like an hour. Or how about a boring sermon? That hour may have seemed like it was forever. Contrast that sense of time to being at a party. Time sprints by when having a good time, working on something you love and being engaged in new experiences. 

We know time does not slow down, it’s our perception of it that does. This is not a new concept. Psychologist William James wrote about the phenomenon of time perception in his Principles of Psychology in 1890. 

Here are some theories that affect our perception of time: 

Theory No. 1: Years are relatively smaller. As we age, each year is a smaller proportion of our time. For a 10-year-old, that birthday represents 1/10 of life which is a big portion. For an 80-year-old, University of Michigan psychology professor Cindy Lustig told the Huffington Post, that birthday is 1/80 of life which is a smaller portion that contributes to the feeling that it went by quickly. Each year feels shorter compared to the total time we have lived and therefore seems to go by faster. 

Theory No. 2: Theory of firsts. When we’re young, Diana Raab wrote in a Psychology Today piece, we encounter a lot of “firsts.” They might be our first kiss, our first love, getting our first car or the first day of college. It might be learning to swim or falling off a bike. We pay attention to the details of our unique and memorable experiences. The more details we can recall, the better we remember them. As we age, we have similar experiences over and over again, perceived time goes more quickly. 

Theory No. 3: Brain function. This helps explain the theory of firsts. Our brain lumps time together when the days or weeks are similar. So, for an 80-year-old who may be doing the same or similar things daily, time gets blended together in one’s mind, making it feel like it went by quickly. What seems new and exciting in a single day is what makes a day or month feel different, slowing our sense of time. (Note: Many 80-year-olds also experience new and familiar experiences daily). 

Theory No. 3a: More on brain function. Adrian Bejan, professor of mechanical engineering at Duke University, has a theory based on neural signal processing. With age, he notes the rate we process visual information slows down, contributing to our experience of time speeding up. In other words, “time does not go faster, we just go slower, cognitively speaking,” as quoted in a 2024 Huffington Post piece. 

So how to live a life where time moves more slowly?

• Fill your time with new experiences. It’s a way to counteract routine. A research study published in the Journal of Experimental Psychology found the perception of time is shorter when engaged in routine activities. So, accept challenges, learn new skills and ask questions. Just step outside the norm. 
• Make meaningful progress. Time passes quickly when we do not take action. Increasing productivity and making progress on projects and goals slows one’s perception of time and builds motivation. 
• Practice mindfulness. That means focusing on the present moment and being aware of what you are doing and where you are. It’s paying attention to details of an experience, incorporating all senses in the process. And make sure to take a few breaths. 
• Go outside to nature. Take time to observe the trees and clouds in the sky; listen to the birds and watch the dolphins and waves in the ocean. This magically slows down time and is calming, writes Raab in Psychology Today. 
• Take time for reflection. Consider journaling. This can be memories of one’s youth, a gratitude list or events of a vacation or just a day. One can also recall details of experiences and share them with others through conversation, photos or in writing.

So, yes, time seems to go by quickly with age. But that can change by filling our lives with new activities, learning something new, being reflective, enjoying nature and doing something that makes us feel useful and productive. Then we will not be going through the motions of life; rather we will savor our moments, days and months with satisfaction and pleasure. 

Thank you, D.L., happy birthday and thank you for your good question. Time is our gift. Let’s use it well. And let’s all make kindness the norm. 

Helen Dennis is a nationally recognized leader on issues of aging and the new retirement with academic, corporate and nonprofit experience. Contact Helen with your questions and comments at Helendenn@gmail.com. Visit Helen at HelenMdennis.com and follow her on facebook.com/SuccessfulAgingCommunity

WASHINGTON — State and federal health agencies are gearing up to respond to a new strain of mpox — the virus formerly known as monkeypox — if the new strain spreads to the United States.

But this time, they are doing so with fewer resources.

Both an mpox public health emergency declaration and federal pandemic preparedness law were still in effect in 2022, the last time the U.S. faced a widespread mpox outbreak. That gave the federal government and state health departments more resources and flexibility than it has now to deal with an outbreak.

Last month, the World Health Organization declared a public health emergency of international concern, the highest alarm under international health law, over the new mpox strain. The strain, known as clade 1b, has been rapidly circulating in central Africa and has been detected in Sweden and Thailand.

The new strain differs from the 2022 world outbreak of the clade IIb mpox strain, which U.S. officials treated with two doses of the JYNNEOS mpox vaccine. Much like the COVID-19 vaccines, the mpox shot JYNNEOS prevents severe infection, hospitalization and death from mpox, but doesn’t fully prevent transmission, according to the Centers for Disease Control and Prevention.

Clade 1b is endemic in the Democratic Republic of Congo, and the strain is more widespread than any other outbreak. Clade 1b usually causes a higher percentage of people with mpox to get severely sick and die, compared to clade IIb, according to the CDC.

While clade 1b has not yet been detected in the U.S., state and federal health officials are gearing up for what could be a potentially worse outbreak than in 2022 by leaning on the lessons it learned two years ago.

“It’s a different ballgame than in 2022, in some ways that are better and in some ways that are TBD,” Jen Kates, senior vice president and director of global health and HIV policy at KFF, said. She noted that public health jurisdictions today are already armed with mpox vaccines and treatments, unlike in 2022.

Budgeting for vaccines

The State Department says it’s been preparing for clade 1b’s emergence in the U.S. since December 2023 through increased monitoring of wastewater and other surveillance systems. But access to public health surveillance systems has waned since the COVID-19 public health emergency ended.

And the 2022 mpox public health emergency allowed the federal government to more easily free up resources to produce and distribute vaccines to high-risk groups at no cost.

The federal government ended the emergency declaration in 2023, but JYNNEOS vaccine maker Bavarian Nordic privatized the vaccine earlier this year. Now states must order it on the commercial market. State health officials said the budget is more of a concern now that vaccines are privatized.

Crystal La Tour Rambaud, the manager of the vaccine preventable disease program of the Pima County Health Department in Tucson, Ariz., said that between the mpox vaccine and new RSV vaccine, costs are adding up.

“It’s just added a lot onto the plate in just a couple years, where the budget hasn’t changed significantly,” La Tour Rambaud said.

As a result, the Pima County Health Department is reassessing whom they offer free vaccinations to, and in some cases, only offering free shots to the uninsured. Insured individuals can get vaccinated at commercial pharmacies, she said.

Under the current structure, those with public or private insurance can access the mpox shots without any cost barrier, because the CDC’s vaccine advisory panel has recommended the vaccine.

But the only way uninsured adults can get the shot at no cost is if their jurisdiction has used federal funds to purchase the vaccines.

Raynard Washington, the director of the public health department in Mecklenburg, N.C., said the department has been able to use some of STD and HIV funds for mpox response, but are still stretched too thin.

The pandemic preparedness law expired in September 2023, but Congress extended seven provisions of that law via the March government funding bill until the end of 2024. This included policies to help activate personnel during a public health emergency, among others.

The CDC recommends health departments report all mpox cases to the CDC within 24 hours and promote vaccination in their communities. Under a declared public health emergency, the government can waive certain authorities to streamline disease reporting, sending funds to jurisdictions, for example.

Even though there is no public health emergency in effect now, Washington said that in Mecklenburg, “overall, the system is probably better prepared now than we were in 2022” because they’ve dealt with mpox before. Public health departments already have vaccines on the ground and people in the community who have been vaccinated.

The Mecklenburg health department is pushing for the reauthorization of the federal pandemic preparedness law as well as giving CDC the authority it needs to collect data, from both health care systems and laboratories so it could share that information to jurisdictions.

But because there is a new strain of mpox, it’s possible they’ll have to change their response.

“We might be starting back at ground zero again, depending on how this all plays out,” Washington said.

©2024 CQ-Roll Call, Inc., All Rights Reserved. Visit cqrollcall.com. Distributed by Tribune Content Agency, LLC.

In the late 1980s, Linda Rose Frank began working with HIV-positive individuals at the University of Pittsburgh. At the time, those affected were mainly young men with a terrifying prognosis.

“There was not really anything to treat people,” she said. “We were watching people die.”

More than three decades later, Frank still works at the University of Pittsburgh in the care of those living with HIV. But now, the majority of HIV-positive people are over the age of 50 — and one focus of Frank’s work is how to best care for people aging with human immunodeficiency virus.

Frank is executive director and principal investigator of the MidAtlantic AIDS Education and Training Center. In the last few years, MAAETC has developed training materials specifically focusing on HIV and aging, such as a pocket training guide on “integrating geriatric principles in the HIV clinic.”

“Sometimes it’s difficult to ascertain whether or not what we are seeing is something related to HIV or a normal aging condition,” said Frank. “That requires a lot of assessment by experts.”

The Centers for Disease Control estimates that for its most recent year of data, 2022, there were about 596,000 people over the age of 50 living with HIV — about 53% of the total number. And while most of those people were diagnosed prior to turning 50, more than 2,600 people over the age of 55 were newly diagnosed with HIV that year.

“I think that people assume that older folks don’t engage in sexual relationships, but of course we know that’s not true,” said Frank, who is also a professor in the department of infectious disease at the University of Pittsburgh, as well as Pitt’s nursing and medical schools. “Or that we assume that it’s only young people who use substances — that’s also not true.”

Frank advocates for routine testing for HIV by primary care physicians regardless of age or risk factors. “Just like you need to know your blood pressure and cholesterol, you need to know your HIV status,” she said. “That’s the way to normalize it for everybody.”

Knowledge of HIV status is so important because medications and treatment are so effective, she said. One study last year in Lancet HIV found that for many patients who started their HIV drug regiments after 2015, life expectancy is similar to that of the non-HIV positive population.

One key to long-term health in HIV-positive individuals is ongoing monitoring, said Frank, and that can become even more important in the aging population.

“One of our concerns is that people get lost to care,” said Frank. “For somebody over 50, maybe their husband or wife died and they became depressed — sometimes they’ll drop out of care. Our goal is to do more research to find the people who dropped out of care and get them back in.”

Medication interactions also have to be carefully reviewed in an aging population, as do mental health and mobility concerns. These issues will only intensify as the population continues to age. For its most recent demographic report, the CDC added a “75 and above” category to its age tables. And one estimate predicts that by 2030, 70% of people with HIV will be older than 50.

“They got diagnosed and got treatment,” said Frank, “and now they are living to 50, 60, 70 and above.”

(c)2024 the Pittsburgh Post-Gazette. Visit the Pittsburgh Post-Gazette at www.post-gazette.com. Distributed by Tribune Content Agency, LLC.

When pediatrician Eric Ball opened a refrigerator full of childhood vaccines, all the expected shots were there — DTaP, polio, pneumococcal vaccine — except one.

“This is where we usually store our COVID vaccines, but we don’t have any right now because they all expired at the end of last year and we had to dispose of them,” said Ball, who is part of a pediatric practice in Orange County, California.

“We thought demand would be way higher than it was.”

Pediatricians across the country are pre-ordering the updated and reformulated COVID-19 vaccine for the fall and winter respiratory virus season, but some doctors said they’re struggling to predict whether parents will be interested. Providers like Ball don’t want to waste money ordering doses that won’t be used, but they need enough on hand to vaccinate vulnerable children.

The Centers for Disease Control and Prevention recommends that anyone 6 months or older get the updated COVID vaccination, but in the 2023-24 vaccination season only about 15% of eligible children in the U.S. got a shot.

Ball said it was difficult to let vaccines go to waste last year. It was the first time the federal government was no longer picking up the tab for the shots, and providers had to pay upfront for the vaccines. Parents would often skip the COVID shot, which can have a very short shelf life compared with other vaccines.

“Watching it sitting on our shelves expiring every 30 days, that’s like throwing away $150 repeatedly every day, multiple times a month,” Ball said.

This year, Ball slashed his fall vaccine order to the bare minimum to avoid another costly mistake.

“We took the number of flu vaccines that we order, and then we ordered 5% of that in COVID vaccines,” Ball said. “It’s a guess.”

That small vaccine order cost more than $63,000, he said.

Pharmacists, pharmacy interns, and techs are allowed to give COVID vaccines only to children age 3 and up, meaning babies and toddlers would need to visit a doctor’s office for inoculation.

It’s difficult to predict how parents will feel about the shots this fall, said Chicago pediatrician Scott Goldstein. Unlike other vaccinations, COVID shots aren’t required for kids to attend school, and parental interest seems to wane with each new formulation, he said. For a physician-owned practice such as Goldstein’s, the upfront cost of the vaccine can be a gamble.

“The cost of vaccines, that’s far and away our biggest expense. But it’s also the most important thing we do, you could argue, is vaccinating kids,” Goldstein said.

Insurance doesn’t necessarily cover vaccine storage accidents, which can put the practice at risk of financial ruin.

“We’ve had things happen like a refrigerator gets unplugged. And then we’re all of a sudden out $80,000 overnight,” Goldstein said.

South Carolina pediatrician Deborah Greenhouse said she would order more COVID vaccines for older children if the pharmaceutical companies that she buys from had a more forgiving return policy.

“Pfizer is creating that situation. If you’re only going to let us return 30%, we’re not going to buy much,” she said. “We can’t.”

Greenhouse owns her practice, so the remaining 70% of leftover shots would come out of her pocket.

Vaccine maker Pfizer will take back all unused COVID shots for young children, but only 30% of doses for people 12 and older.

Pfizer said in an Aug. 20 emailed statement, “The return policy was instituted as we recognize both the importance and the complexity of pediatric vaccination and wanted to ensure that pediatric offices did not have hurdles to providing vaccine to their young patients.”

Pfizer’s return policy is similar to policies from other drugmakers for pediatric flu vaccines, also recommended during the fall season. Physicians who are worried about unwanted COVID vaccines expiring on the shelves said flu shots cost them about $20 per dose, while COVID shots cost around $150 per dose.

“We run on a very thin margin. If we get stuck holding a ton of vaccine that we cannot return, we can’t absorb that kind of cost,” Greenhouse said.

Vaccine maker Moderna will accept COVID vaccine returns, but the amount depends on the individual contract with a provider. Novavax will accept the return of only unopened vaccines and doesn’t specify the amount they’ll accept.

Greenhouse wants to vaccinate as many children as possible but said she can’t afford to stock shots with a short shelf life. Once she runs out of the doses she’s ordered, Greenhouse said, she plans to tell families to go to a pharmacy to get older children vaccinated. If pediatricians around the country are making the same calculations, doses for very small children could be harder to find at doctors’ offices.

“Frankly, it’s not an ideal situation, but it’s what we have to do to stay in business,” she said.

Ball, the California pediatrician, worries that parents’ limited interest has caused pediatricians to minimize their vaccine orders, in turn making the newest COVID shots difficult to find once they become available.

“I think there’s just a misperception that it’s less of a big deal to get COVID, but I’m still sending babies to the hospital with COVID,” Ball said. “We’re still seeing kids with long COVID. This is with us forever.”

(KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling and journalism.)

©2024 KFF Health News. Distributed by Tribune Content Agency, LLC.

A crowd of more than 100 people — comprised of LGBTQ residents, activists, and elected representatives — gathered Thursday for a ribbon-cutting celebrating the nonprofit’s expansion. Christopher Reybrouck, the center’s senior director of strategy and operations, said the new location will be a “one-stop shop” for all of the nonprofit’s patients and “meet the needs of LGBTQ+ individuals while also protecting their rights and their dignity.”

At both the Norfolk and Hampton locations, the LGBT Life Center provides HIV and sexually transmitted infection testing, medication to prevent and treat HIV, medical help, counseling services, support groups, a food pantry, and housing assistance. CEO Stacie Walls said the nonprofit serves thousands of people each year.

Hours of operation for the new location are still being finalized. Staff are being phased into the new building this month and it should be fully up and running for patient visits by early October, according to spokesperson Corey Mohr.

While the opening of the Hampton Life Center is a welcome expansion, it comes as the organization is facing significant financial challenges — including recent cuts in state and federal funding that have led to some layoffs and reduction of prevention programming.

The new 10,000-square-foot building features a pharmacy and clinic, four exam rooms, a multipurpose community room, a staff lounge, a conference room, and a pantry. It will initially employ 10-12 staff members, at least five of whom are new hires. Walls said the building’s interior is soft and welcoming, while its exterior, which is adorned with rainbow colors, is meant to be “loud and proud” to promote visibility.

LGBT Life Center Board member LeeQuan “Quan” McLaurin, who described himself as a Black queer man, said when he moved to Hampton Roads, he was looking for affirming spaces and found that at the Life Center where he was welcomed with “nothing but smiling faces.” He said it’s a place where people can find community and “chosen family,” which he said is a strong mitigating factor against anxiety, depression and suicide ideation.

“This building stands for so much more,” McLaurin said, noting the disproportionately higher rates of HIV among Black men. “It stands for ensuring our further existence.”

Del. Marcia “Cia” Price, who describes herself as pansexual, shared that when she was young, violent rhetoric against LGBT people caused her to hide her sexual orientation.  She said it’s important to have welcoming spaces where LGBTQ people feel safe and said the Hampton center provides that space on the Peninsula.

The Norfolk Life Center opened at the height of the AIDS epidemic in 1989 under a different name to serve women and children with HIV across Hampton Roads. In the decades since, the center’s mission has dramatically expanded to more broadly serve the LGBTQ community.

But more recent financial troubles mean the center has had to scale back some of its work. Over the last 18 months, the LGBT Life Center has lost $1.3 million in state and federal funding, according to Mohr. The organization has “shifted staff where we could,” Mohr said but some staff and programming cuts have been made. The center also faces a $1.1 million lawsuit from a former pharmacy program partner. The center’s annual budget is nearly $14 million.

“Unfortunately, the reduction in funding will force us to scale back HIV and STI outreach across Hampton Roads, and we’ll also have to reduce the number of staff focused on outreach,” Mohr said in an email.

Walls echoed Mohr’s concerns, saying that a reduction in outreach services and staff members to provide testing will ultimately harm those in the community who need those services.

Mohr said the Life Center is actively seeking new funding through grants, fundraising, and donor outreach. He said the center relies on volunteers and donations and those who want to support it can give their “time, talent, and treasure.” Another way to support the center is to fill prescriptions at it’s pharmacy, Mohr said.

“A single prescription filled through our pharmacy can generate up to $10,000 a year for the center — an easy way to support our services without changing your routine,” he said.

Josh Janney, joshua.janney@virginiamedia.com

In their ongoing quest to lower prescription drug prices, some states are forcing drugmakers to continue to sell cheaper medications to thousands of pharmacies through a federal drug-discount program.

Under the 32-year-old 340B program, pharmaceutical companies that participate in Medicaid must sell outpatient drugs at discounted prices to clinics, community health centers and hospitals that primarily serve low-income patients. The idea is that providers will use the money they save — between 20% and 50% off the normal price — to expand their services.

But many such facilities don’t have in-house pharmacies, so in 2010 the federal government expanded the 340B program to allow many more outside pharmacies — so-called contract pharmacies — to dispense the drugs to eligible patients on behalf of health centers and hospitals. Among the top four pharmacy chains (Walmart, CVS, Rite Aid and Walgreens), 71% of locations participate in the 340B program, according to a recent study by the University of Minnesota School of Public Health.

Drugmakers contend that the 340B program has grown far beyond its original intent, and that some hospitals are pocketing the savings instead of investing the money in more services. Some research supports that contention.

In 2020, seven major pharmaceutical manufacturers announced that they would restrict or halt 340B drug sales to contract pharmacies, since those sales aren’t required under federal law. As of last September, 25 drugmakers had imposed such restrictions, according to 340B Health, an advocacy group that represents more than 1,500 public and private nonprofit hospitals and health systems.

“We as an industry continue to provide those discounts, but we’re concerned that there’s no evidence patients are seeing any improved access or that they’re seeing lower costs,” said Nicole Longo, deputy vice president for public affairs at Pharmaceutical Research and Manufacturers of America, a trade group representing drugmakers.

States are pushing back. This year, Kansas, Maryland, Minnesota, Mississippi, Missouri and West Virginia have enacted laws requiring drugmakers that participate in Medicaid to sell discounted drugs to contract pharmacies. In 2021, Arkansas became the first state with such a law, and Louisiana followed in 2023. Other states, including New York, have considered similar bills this year.

“It’s very hard to maintain services and keep a hospital open. So, when 340B came into play, it was very helpful,” West Virginia Republican state Sen. Tom Takubo, the sponsor of the legislation in his state, told Stateline.

“They just unilaterally stopped delivering medications to those peripheral pharmacies,” Takubo said. “And so, we passed a bill that said you can’t do that. You gotta deliver out there. And if you don’t do it, we’re gonna fine you.”

340B expansion

One thing is certain: The 2010 expansion of the 340B program to many more contract pharmacies has dramatically expanded access to the discounted drugs. The number of retail pharmacies participating in the program grew from 789 in 2009 to 25,775 in 2022, according to a study published last year in JAMA Health Forum.

Patient spending on 340B discounted drugs also has increased significantly, from $6.6 billion in 2010 to $43.9 billion in 2021, according to the Congressional Budget Office.

Karen Mulligan, a research assistant professor at the Sol Price School of Public Policy at the University of Southern California, said there are valid arguments on both sides of the debate. The point of the 340B program is not to subsidize drugs for low-income patients, she said. Rather, it is to funnel financial support to struggling community health centers and rural hospitals.

The federal government began allowing those entities to use contract pharmacies because many of them did not have pharmacies in-house, Mulligan said. But she pointed out that the expansion of the 340B program also has brought in some hospitals that “make plenty of money without 340B.” And because the 340B reporting requirements for hospitals are lax, she said, it’s not clear that they are using the money they save to improve patient care.

The challenge, Mulligan said, is that efforts to rein in the program likely would harm all providers — those that need the savings to serve low-income patients and those that don’t.

“The program’s intention is not what the program looks like today, and that’s why you have so many different people on different sides,” Mulligan told Stateline.

A broad range of patients

Some critics of the 340B program claim the discounts end up flowing to hospitals located in wealthier neighborhoods.

But Joey Mattingly, an associate professor of pharmacy at the University of Utah who has been in pharmacy for more than two decades, said the health care providers that use contract pharmacies see a broad range of patients. And the revenue they get helps those hospitals stay open.

“When you lose the hospital and it’s no longer even available in your community, now you’ve got to drive farther to get to a hospital,” Mattingly told Stateline. “That’s not to say that if 340B went away tomorrow, you would lose a bunch of hospitals. But I think you’d see a lot of changes that would be dramatic.”

Mattingly said a lot of hospitals and clinics use the savings to create changes that are both economical and helpful to patients. For example, they may start offering free or subsidized drugs in-house that patients could get right away, increasing the likelihood that they will actually take the medicine and avoid a costly hospital readmission.

Aimee Kuhlman, vice president of advocacy at the American Hospital Association, said the 340B program generates tens of billions of dollars in savings that hospitals use to benefit patients.

“The reality is, Big Pharma doesn’t want to give discounts to hospitals or the patients these hospitals serve, they want to keep it for themselves,” Kuhlman told Stateline. “The fact is, 340B is a critical resource to eligible hospitals and the patients and communities they serve.”

Participation in Medicaid is optional, and pharmaceutical companies that don’t want to provide the 340B discounts can decline to be part of it, said Greg Havard, CEO of the 49-bed George Regional Health System in Lucedale, Mississippi, a city of a few thousand people close to the Gulf Coast.

“Pharmacy manufacturers have agreed to sell certain drugs to us at a lower price, and the 340B program is there to help us recoup costs on services or facilities that we operate to treat these folks and try to keep the doors open,” Havard told Stateline. “The reason we as a group wanted to pursue legislation is because pharmaceutical manufacturers, during the height of the worst pandemic in 100 years … stopped honoring our contract pharmacies that have been a practice in place for 15 years.”

Vacheria Keys, associate vice president of policy and regulatory affairs at the National Association of Community Health Centers, also argued that the facilities she represents invest 340B savings into patient care. Keys said the program is essential because the federal funding that community health centers receive “doesn’t stretch as far as it used to.”

Meanwhile, pharmaceutical companies are challenging the new state laws in court. Last month, for example, a federal judge denied a bid by drugmaker Novartis to halt Mississippi’s law. The company told Stateline it plans to appeal the decision.

Robert Dozier, executive director of the Mississippi Independent Pharmacies Association, hailed the new state law and the court’s ruling.

“We’re getting more brand-name drug manufacturers back on board,” Dozier told Stateline. “That gives us access to more medication to where we can help more people in the community.”

Stateline is part of States Newsroom, a national nonprofit news organization focused on state policy.

©2024 States Newsroom. Visit at stateline.org. Distributed by Tribune Content Agency, LLC.