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‘I Try To Stay Strong’: Mom Struggles To Get Diagnosis for Son’s Developmental Problems

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Sejal Parekh
Wed, 12 Jun 2024 09:00:00 +0000

CASTRO VALLEY, Calif. — Four-year-old Ahmeir Diaz-Thornton couldn't sit still in class and rarely ate his lunch. While his preschool classmates spoke in perfect sentences, Ahmeir had trouble pronouncing words.

Ahmeir's preschool teacher relayed her concerns to his mother, Kanika Thornton, who was already worried about Ahmeir's refusal to eat anything but yogurt, Chef Boyardee spaghetti, oatmeal, and applesauce. He also sometimes hit himself and others to cope with the frustration of not being able to communicate, she said.

Thornton took her son, who is on Medi-Cal, California's Medicaid program, which covers low-income families, to his pediatrician. Then he was evaluated by a school district official, a speech therapist, and the pediatrician — again. Along the way, Thornton consulted teachers, case managers, and social service workers.

Ten months later, she still doesn't have an accurate diagnosis for Ahmeir.

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“I felt like I failed my child, and I don't want to feel that,” said Thornton, 30, who has been juggling Ahmeir's behavior and appointments on top of her pregnancy and caring for her two other children.

“Some days I don't eat because he doesn't eat,” said Thornton from her home in Alameda County in the San Francisco Bay Area. “I don't want to hurt my unborn child. So I try to eat some crackers and cheese and stuff, but I don't eat a meal because he doesn't eat a meal.”

Seeking a diagnosis for a child's behavioral problems can be challenging for any family as they navigate complicated medical and educational systems that don't communicate effectively with parents, let alone each other.

A common obstacle families face is landing an appointment with one of a limited number of developmental specialists. It is particularly difficult for families with Medi-Cal, whose access to specialists is even more restricted than for patients with private insurance.

As they await their turn, they boomerang among counselors, therapists, and school officials who address isolated symptoms, often without making progress toward an overall diagnosis.

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Obtaining a timely diagnosis for autism, anxiety, attention-deficit/hyperactivity disorder, or other behavioral disorders is important for children and their parents, said Christina Buysse, a clinical associate professor in developmental and behavioral pediatrics at Stanford University.

“Parent stress levels go down when a child is diagnosed early,” because they learn how to manage their child's behaviors, she said.

Intervening early can also help retrain a child's brain quickly and avoid lifelong consequences of developmental delays, said Adiaha Spinks-Franklin, president of the Society for Developmental and Behavioral Pediatrics.

“A speech and language delay at the age of 2 can put a child at risk of reading comprehension problems in the third grade,” she said.

Buysse is likely the right type of medical specialist for Ahmeir. As a developmental-behavioral pediatrician, she can often unify different symptoms into one diagnosis, and she knows what kind of therapy or medication patients need.

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The Society for Developmental and Behavioral Pediatrics reports that there are only 706 actively certified developmental specialists in the nation.

“There just aren't enough of us,” Buysse said, and some developmental specialists don't accept Medicaid patients because they believe the reimbursement rates aren't adequate.

Thornton didn't know her son needed to see a developmental specialist, and he had never been referred to one, despite his many medical appointments. Once she learned about this type of specialist in May, she asked his pediatrician for a referral.

Alameda System, which provides Ahmeir's primary care, “does not have a developmental-behavioral pediatrician on staff at this time,” said Porshia Mack, the system's associate chief medical officer of ambulatory services.

“We have made efforts to hire them, but recruiting and retaining pediatric subspecialists is difficult for all health systems, and public safety-net systems in particular,” she said.

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Karina Rivera, a spokesperson for the Alameda Alliance for Health, Thornton's Medi-Cal managed care plan, provided a list of nine developmental-behavioral pediatricians she said are in the plan's network.

However, the only two in Alameda County work for Kaiser Permanente, which “is a closed system,” acknowledged Donna Carey, interim chief medical officer of the Alameda Alliance. In practice, that means “even if they have a developmental pediatrician, we don't have access to that pediatrician,” she said.

The other seven specialists are in surrounding counties, which could pose transportation challenges for Thornton and other patients.

The Alameda Alliance for Health met state requirements for patient access to specialists in the most recent review of its network, in 2022, said Department of Health Care Services spokesperson Griselda Melgoza. The plan “was found compliant with all time or distance standards,” she said.

However, after learning from California Healthline that the plan considers Kaiser Permanente specialists part of its network, the department contacted the insurer to inquire, and will work with it “to ensure member-facing materials accurately represent their current network,” Melgoza said.

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A month after starting preschool in fall 2023, Ahmeir was evaluated for speech delay through his school district. His pediatrician also began ordering tests to understand his eating habits.

But Thornton believes Ahmeir's symptoms aren't isolated problems that can be addressed in a piecemeal fashion. “It's just something else. It's his development,” she said. “I know a tantrum, but he doesn't get tantrums. He will hit people. That's a no-go.”

In addition to addressing medical concerns, a developmental specialist could help parents like Thornton understand what school districts offer and how to expedite school evaluations, Spinks-Franklin said. Ahmeir faces a six- to eight-month wait for a comprehensive evaluation through his school district for additional services, Thornton said.

It's common for parents to get confused about what a school district can and can't do for kids with developmental disabilities, said Corina Samaniego, who works at Family Resource Navigators, an organization that helps parents like Thornton in Alameda County. For instance, Samaniego said, school districts cannot provide medical diagnoses of autism, nor the therapy to address it.

Ahmeir has made significant improvement with speech therapy provided through the school district, Thornton said, and now speaks in full sentences more often. But she remains frustrated that she does not have a diagnosis that explains his persistent symptoms, especially his reluctance to eat and difficulty expressing emotions.

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Thornton believes she has done everything she can to help him. She has even created elaborate food landscapes for Ahmeir with dinosaur-shaped chicken nuggets, mashed potato volcanoes, gravy lava, and broccoli trees — only to have him turn his head away.

As of late May, she continued to seek advice from teachers and counselors while she waited for an appointment with a specialist.

“I try to stay strong for my son and do the best I can and be there for him, talk to him, teach him things,” she said. “It's been really tough.”

This article is part of “Faces of Medi-Cal,” a California Healthline series exploring the impact of the state's safety-net health program on enrollees.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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——————————
By: Sejal Parekh
Title: ‘I Try To Stay Strong': Mom Struggles To Get Diagnosis for Son's Developmental Problems
Sourced From: kffhealthnews.org//article/alameda-county-california-mom-diagnosis-child-behavioral-issues/
Published Date: Wed, 12 Jun 2024 09:00:00 +0000

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Kaiser Health News

How to Find a Good, Well-Staffed Nursing Home

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Jordan Rau, KFF
Fri, 12 Jul 2024 09:45:00 +0000

Few people want to go into a nursing home, but doing so can be the right choice if you or a loved one is physically or cognitively disabled or recovering from surgery. Unfortunately, homes vary greatly in quality, and many don't have enough nurses and aides to give residents the care they need.

Q: How do I find nursing homes worth considering?

Start with Medicare's online comparison tool, which you can search by city, state, ZIP code, or home name. Ask for advice from people designated by your state to help people who are older or have disabilities search for a nursing home. Every state has a “no wrong door” contact for such inquiries.

You can also reach out to your local area agency on aging, a public or nonprofit resource, and your local long-term care ombudsman, who helps residents resolve problems with their nursing home.

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Find your area agency on aging and ombudsman through the federal government's Eldercare Locator website or by calling 1-800-677-1116. Identify your ombudsman through the National Consumer Voice for Quality Long-Term Care, an advocacy group. Some people use private placement agencies, but they may refer you only to homes that pay them a referral fee.

Q: What should I find out before visiting a home?

Search online for news coverage and for reviews posted by residents or their families.

Call the home to make sure beds are available. Well-regarded homes can have long waiting lists.

Figure out how you will pay for your stay. Most nursing home residents rely primarily on private long-term care insurance, Medicare (for rehabilitation stays) or Medicaid (for long-term stays if you have few assets). In some cases, the resident pays entirely out-of-pocket. If you're likely to run out of money or insurance coverage during your stay, make sure the home accepts Medicaid. Some won't admit Medicaid enrollees unless they start out paying for the care themselves.

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If the person needing care has dementia, make sure the home has a locked memory-care unit to ensure residents don't wander off.

Q: How can I tell if a home has adequate staffing?

Medicare's comparison tool gives each home a rating of one to five stars based on staffing, health inspection results, and measurements of resident care such as how many residents had pressure sores that worsened during their stay. Five is the highest rating. Below that overall rating is one specifically for staffing.

Be sure to study the annual staff turnover rate, at the bottom of the staffing page. Anything higher than the national rate — an appalling 52% — should give you pause.

You should also pay attention to the inspection star rating. The “quality” star rating is less reliable because homes self-report many of the results and have incentives to put a glossy spin on their performance.

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Q: Does a home with three, four, or five stars provide good care?

Not necessarily. Medicare's ratings compare the staffing of a home against that of other homes, not against an independent standard. The industry isn't as well staffed as many experts think it needs to be: About 80% of homes, even some with four and five stars, are staffed below the standards the Biden administration will be requiring homes to meet in the next five years.

Q: How many workers are enough?

There's no straightforward answer; it depends on how frail and sick a nursing home's residents are. Medicare requires homes to prominently post their staffing each day. The notices should show the number of residents, registered nurses, licensed vocational nurses, and nurse aides. RNs are the most skilled and manage the care. LVNs provide care for wounds and catheters and handle basic medical tasks. Nurse aides help residents eat, dress, and get to the bathroom.

Expert opinions vary on the ideal ratios of staffing. Sherry Perry, a Tennessee nursing assistant who is the chair of her profession's national association, said that preferably a nursing assistant should care for eight or fewer residents.

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Charlene Harrington, an emerita professor of nursing at the University of California-San Francisco, recommends that on the day shift there be one nurse aide for every seven residents who need help with physical functioning or have behavioral issues; one RN for every 28 residents; and one LVN for every 38 residents. Patients with complex medical needs will need higher staffing levels.

Staffing can be lower at night because most residents are sleeping, Harrington said.

Nursing home industry officials say that there's no one-size-fits-all ratio and that a study the federal government published last year found quality improved with higher staffing but didn't recommend a particular level.

Q: What should I look for when I visit a home?

Watch to see if residents are engaged in activities or if they are alone in their rooms or slumped over in wheelchairs in hallways. Are they still in sleeping gowns during the day? Do nurses and aides know the residents by name? Is food available only at mealtimes, or can residents get snacks when hungry? Watch a meal to see whether people are getting the help they need. You might visit at night or on weekends or holidays, when staffing is thinnest.

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Q: What should I ask residents and families in the home?

Are residents cared for by the same people or by a rotating cast of strangers? How long do they have to wait for help bathing or getting out of bed? Do they get their medications, physical therapy, and meals on time? Do aides come quickly if they turn on their call light? Delays are strong signs of understaffing.

Medicare requires homes to allow residents and families to form councils to address common issues. If there's a council, ask to speak to its president or an officer.

Ask what proportion of nurses and aides is on staff or from temporary staffing agencies; temp workers won't know the residents' needs and likes as well. A home that relies heavily on temporary staff most likely has trouble recruiting and keeping employees.

Q: What do I need to know about a home's leadership?

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Turnover at the top is a sign of trouble. Ask how long the home's administrator has been on the job; ideally it should be at least a year. (You can look up administrator turnover on the Medicare comparison tool: It's on the staffing page beneath staff turnover. But be aware the information may not be up to date.) You should also ask about the tenure of the director of nursing, the top clinical supervisor in a home.

During your tour, observe how admissions staff members treat the person who would be living there. “If you walk in to visit with your mom and they greeted you and didn't greet your mom or focused all their attention on you, go somewhere else,” advised Carol Silver Elliott, president of the Jewish Home Family, a nonprofit in Rockleigh, New Jersey.

Q: Does it matter who owns the home?

It often does. Generally, nonprofit nursing homes provide better care because they can reinvest revenue back into the home rather than paying some of it to owners and investors.

But there are some very good for-profit homes and some lousy nonprofits. Since most homes in this country are for-profit, you may not have a choice in your area. As a rule of thumb, the more local and present the owner, the more likely the home will be well run. Many owners live out of state and hide behind corporate shell companies to insulate themselves from accountability. If nursing home representatives can't give you a clear answer when you ask who owns it, think twice.

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Finally, ask if the home's ownership has changed in the past year or so or if a sale is pending. Stable, well-run nursing homes aren't usually the ones owners are trying to get rid of.

——————————
By: Jordan Rau, KFF
Title: How to Find a Good, Well-Staffed Nursing Home
Sourced From: kffhealthnews.org/news/article/nursing-home-shopping-staffing-resources-red-flags/
Published Date: Fri, 12 Jul 2024 09:45:00 +0000

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Lifesaving Drugs and Police Projects Mark First Use of Opioid Settlement Cash in California

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Aneri Pattani and Don Thompson
Fri, 12 Jul 2024 09:00:00 +0000

SACRAMENTO — Sonja Verdugo lost her husband to an opioid overdose last year. She regularly delivers medical supplies to people using drugs who are living — and dying — on the streets of Los Angeles. And she advocates at Los Angeles City Hall for policies to address addiction and homelessness.

Yet Verdugo didn't know that hundreds of millions of dollars annually are flowing to California communities to combat the opioid crisis, a payout that began in 2022 and continues through 2038.

The money comes from pharmaceutical companies that made, distributed, or sold prescription opioid painkillers and that agreed to pay about $50 billion nationwide to settle lawsuits over their role in the overdose epidemic. Even though a recent Supreme Court decision upended a settlement with OxyContin maker Purdue Pharma, many other companies have already begun paying out and will continue doing so for years.

California, the most populous state, is in line for more than $4 billion.

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“You can walk down the street and you see someone addicted on every corner — I mean it's just everywhere,” Verdugo said. “And I've never even heard of the funds. And to me, that's crazy.”

Across the nation, much of this windfall has been shrouded in secrecy, with many jurisdictions offering little transparency on how they're spending the money, despite repeated queries from people in recovery and families who lost loved ones to addiction.

Meanwhile, there's plenty of jockeying over how the money should be used. Companies are lobbying for spending on products that range from medication bottles that lock to full-body scanners to screen people entering jails. Local officials are often advocating for the fields they represent, whether it's treatment, prevention, or harm reduction. And some governments are using it to plug budget gaps.

In California, local governments must report how they spend settlement funds to the state's Department of Health Care Services, but there's no requirement that the reports be made public.

KFF obtained copies of the documents via a public records request and is now making available for the first time 265 spending reports from local governments for fiscal year 2022-23, the most recent reports filed.

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The reports provide a snapshot of the early spending priorities, and tensions.

Naloxone an Early Winner

As of June 2023, the bulk of opioid settlement funds controlled by California cities and counties — more than $200 million — had yet to be spent, the reports show. It's a theme echoed nationwide as officials take time to deliberate.

The city and county of Los Angeles accounted for nearly one-fifth of that unspent total, nearly $39 million, though officials say that since the report was filed they've begun allocating the money to recovery housing and programs to connect people who are homeless with residential addiction treatment.

Among local governments that did use the cash in the first fiscal year, the most popular object of spending was naloxone, a medication that reverses opioid overdoses and is often known by the brand name Narcan. The medication accounted for more than $2 million in spending across 19 projects.

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One of those projects was in Union City, in the San Francisco Bay Area. The community of about 72,000 residents had five suspected fentanyl overdoses, two of them fatal, within 24 hours in September.

The opioid settlement money “was invaluable,” Corina Hahn, the city's director of community and recreation services, said in her report. “Having these resources available helped educate, train and distribute the Narcan kits to parents, youth and school staff.”

Union City bought 500 kits, each containing two doses of naloxone. The kits cost about $13,500, with an additional $56,000 set aside for similar projects, including backpacks containing Narcan kits and training materials for high school students.

Union City also plans to expand its outreach to homeless people to fund drug education and recovery services, including addiction counseling.

Those are the sorts of lifesaving services that Verdugo, the Los Angeles advocate, said are desperately needed as deaths of people living on the streets pile up.

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She lost her 46-year-old husband, Jesse Baumgartner, in June of last year to an addiction that started after he was prescribed pain medications for a high school wrestling injury. He tried kicking his habit for six years using methadone, but each time prescribers lowered his dosage the cravings drove him back to illicit drugs.

“It was just this horrible roller coaster of him not being able to get off of it,” Verdugo said.

By then the couple had survived 4½ years of being homeless and had been in stable housing for about two years.

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Fentanyl use, particularly among homeless people, “is just rampant,” she said. People sometimes are initially exposed to the cheap, highly addictive substance unknowingly when it is mixed with something else.

“Once they start using it, it's like they just can't backtrack,” said Verdugo, who works as a community organizer for Ground Game LA.

So she leaves boxes of naloxone at homeless encampments in the hope of saving lives.

“They definitely use it, because it's needed right then — they can't wait for an ambulance to come out,” she said.

Cities Backtrack on Spending for Law Enforcement

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By contrast, the cities of Irvine and Riverside, both in Greater Los Angeles, listed plans to prioritize law enforcement by buying portable drug analyzers, though neither city did so in the first fiscal year, 2022-23. Their inclination mirrored patterns elsewhere in the country, with millions in settlement funds flowing to police departments and jails.

But such uses of the money have stirred controversy, and both cities backed away from the drug analyzer purchase after the Department of Health Care Services issued rules that opioid settlement funds may not be used for certain law enforcement efforts. The rules specifically excluded “equipment for the purpose of evidence gathering for prosecution, such as the TruNarc Handheld Narcotics Analyzer.”

In Hawthorne, also near Los Angeles, the police department had already spent about $25,000 of settlement funds on an initial installment to buy 80 BolaWraps, devices that shoot Kevlar tethers to wrap around a person's limbs or torso.

After the state said BolaWraps were not an allowable expense, the city said it would find other funding sources to pay the remaining installments.

Santa Rosa, in California's wine country, spent nearly $30,000 on police officer wellness and support.

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The funds allowed the police department to boost its contracted wellness coordinator from a part-time to a full-time position, and to buy a mobile machine to measure electrical activity in the brain, said Sgt. Patricia Seffens, a spokesperson.

The goal is to use the technology on police officers to help “assess the traumatic impact of responding to the increasing overdose calls,” Seffens said in an email.

In Dublin, east of San Francisco, officials are using part of their $62,000 in settlement cash for a D.A.R.E. program.

D.A.R.E., which stands for Drug Abuse Resistance Education, is a series of classes taught by police officers in schools to encourage students to resist peer pressure and avoid drugs. It was initially developed during the “Just Say No” campaign in the 1980s.

Studies have found inconsistent results from the program and no long-term effects on drug use, leading many researchers to dismiss it as “ineffective.”

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But on its website, D.A.R.E. cites studies since the program was updated in 2009, which found “a positive effect” on fifth graders and “statistically significant reductions” in drinking and smoking about four months after completing the program.

“The D.A.R.E. program when it first came out looks a lot, lot different than what it looks like right now,” said Nate Schmidt, the Dublin police chief.

Schmidt said additional settlement money will be used to distribute naloxone to residents and stock it at schools and city facilities.

Other local governments in California spent modest sums on a wide range of addiction-related measures. Ukiah, in Mendocino County, north of San Francisco, spent $11,000 for a new heating and air conditioning system for a local drug treatment center. Orange and San Mateo counties spent settlement funds in part on medication-assisted treatment for people incarcerated in their jails. The city of Oceanside spent $16,000 to showcase drug prevention art and made by middle school students in local movie theaters, in public spaces, and on buses and taxis.

The Department of Health Care Services said it plans to release a statewide report on how the funds were spent, as well as the individual city and county reports, by year's end.

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

——————————
By: Aneri Pattani and Don Thompson
Title: Lifesaving Drugs and Police Projects Mark First Use of Opioid Settlement Cash in California
Sourced From: kffhealthnews.org/news/article/drugs-police-projects-first-california-opioid-settlement-spending/
Published Date: Fri, 12 Jul 2024 09:00:00 +0000

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Kaiser Health News

KFF Health News’ ‘What the Health?’: GOP Platform Muddies Abortion Waters

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Thu, 11 Jul 2024 20:00:00 +0000

The Host

Julie Rovner
KFF


@jrovner


Read Julie's stories.

Julie Rovner is chief Washington correspondent and host of KFF ' weekly health policy news , “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

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Republicans released a draft party platform in advance of the GOP national convention next week, and while it is being described as softening the party's stance opposing abortion, support from major groups that oppose abortion suggests that claim may be something of a mirage.

Meanwhile, the Federal Trade Commission is taking on the pharmacy benefits management industry as it prepares to file suit charging that the largest PBMs engage in anticompetitive behavior that raises patients' drug costs.

This week's panelists are Julie Rovner of KFF Health News, Jessie Hellmann of CQ Roll Call, Shefali Luthra of The 19th News, and Sandhya Raman of CQ Roll Call.

Panelists

Jessie Hellmann
CQ Roll Call


@jessiehellmann

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Read Jessie's stories.

Shefali Luthra
The 19th


@shefalil


Read Shefali's stories.

Sandhya Raman
CQ Roll Call

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@SandhyaWrites


Read Sandhya's stories.

Among the takeaways from this week's episode:

  • For the first time in decades, the GOP presidential platform will not include a call for a national abortion ban. But Republicans are hardly soft-pedaling the issue: The new platform effectively asserts that abortion violates the 14th Amendment, which guarantees equal protection under the law for all citizens — including, under their reading, human embryos. Under that argument, abortion opponents may already have the constitutional justification they need to defend in court further restrictions on the procedure.
  • Lawmakers in Washington are making early progress on government spending bills, including for the Department of Health and Human Services. Some political issues, like access to gender-affirming care for service members and minors, are creating wrinkles. Congress will likely need to pass a stopgap spending measure to avoid a government shutdown this fall.
  • And a new report from the Federal Trade Commission illuminates the sweeping control of a handful of pharmacy benefits managers over most of the nation's prescription drugs. As the government eyes lawsuits against some of the major PBMs alleging anticompetitive behavior, the findings bolster the case that PBMs are inflating drug prices.

Also this week, Rovner interviews Jennifer Klein, director of the White House Gender Policy Council, about the Biden administration's policies to ensure access to reproductive health care.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: STAT News' “Troubled For-Profit Chains Are Stealthily Operating Dozens of Psychiatric Hospitals Under Nonprofits' Names,” by Tara Bannow.

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Jessie Hellmann: North Carolina Health News' “N.C. House Wants to Spend Opioid Money on Multiple Abstinence-Based Recovery Centers, While Experts Stress Access to Medication,” by Grace Vitaglione.

Shefali Luthra: The Washington Post's “These GOP Women Begged the Party to Abandon Abortion. Then Came Backlash,” by Caroline Kitchener.

Sandhya Raman: Roll Call's “For at Least One Abortion Clinic, Dobbs Eased Stressors,” by Sandhya Raman.

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Francis Ying
Audio producer

Emmarie Huetteman
Editor

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To hear all our click here.

And subscribe to KFF Health News' “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

——————————
Title: KFF Health News' ‘What the Health?': GOP Platform Muddies Abortion Waters
Sourced From: kffhealthnews.org/news/podcast/what-the-health-355-gop-platform-abortion-gender-july-11-2024/
Published Date: Thu, 11 Jul 2024 20:00:00 +0000

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