Republicans in Congress are “trying to wipe out federal funding to end the HIV epidemic.”

President Joe Biden on Oct. 14, 2023, in remarks at the 2023 Human Rights Campaign National Dinner.

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Are Republicans threatening to stop spending federal money to end one of the world’s most pressing public health epidemics? That’s what President Joe Biden said during a dinner hosted by an LGBTQ+ advocacy group.

“In the United States Congress, extreme MAGA Republicans are trying to undo virtually every bit of progress we’ve made,” Biden said Oct. 14 at the Human Rights Campaign event. “They’re trying to wipe out federal funding to end the HIV epidemic.”

Programs to treat HIV and fight its spread have enjoyed bipartisan funding support in recent years, experts said, so Biden’s portrayal signals a significant departure.

When we asked the White House what Biden was referring to, it pointed us to reports of budget recommendations from House Republicans that call for large cuts to the Ending the HIV Epidemic initiative, a Trump administration-era program designed to reduce new HIV infections in the U.S., as well as other programs.

The Senate Appropriations Committee passed a separate spending plan. The recommendations will be subject to negotiation as the House and Senate face a Nov. 17 deadline to pass another spending bill.

We found that although Republicans are recommending significant cuts to HIV prevention efforts across a number of public health agencies, the proposal keeps core funding intact. Meanwhile, political differences are eroding bipartisan support for global HIV-prevention funding.

Despite great strides in prevention and treatment since HIV was first reported in the U.S. in the 1980s, HIV remains at epidemic levels in the U.S. today, with approximately 1.2 million people living with HIV and around 30,000 to 35,000 new infections each year. Experts said cases are rising in the South and in rural areas, and new infection statistics show it is disproportionately affecting Black and Hispanic populations.

What Are the Proposed Cuts?

The AIDS Budget and Appropriations Coalition, a group of more than 100 public health advocacy organizations that track changes in HIV-related federal spending, said a majority of the proposed cuts to domestic HIV funding stem from House Republicans’ effort to eliminate the Ending the HIV Epidemic initiative.

The program started in 2019 with the goal of reducing new HIV infections in the U.S. by 75% by 2025 and 90% by 2030. The program so far worked regionally, targeting areas that have the highest rates of HIV cases for funding.

In 2023, about $573 million was allocated for the program across various agencies, according to KFF’s funding tracker.

• $220 million to the Centers for Disease Control and Prevention.
• $165 million to the Ryan White HIV/AIDS program. (It was named for a 13-year-old diagnosed with HIV in 1984 and is overseen by the Health Resources and Services Administration.)
• $5 million to the Indian Health Service.
• $26 million to the National Institutes of Health for research.
• $157.3 million to community health centers, which have treated around 200,000 HIV patients annually.

The program lags its goals as it approaches the 2025 benchmark. “It’s well designed, well planned, it has targets that makes sense,” said Jeffrey Sturchio, a lead researcher on a Center for Strategic and International Studies report.

Sturchio said the problem is not a fault of design, but funding, adding, “Congress has never fully funded the initiative.”

Sturchio pointed to a range of local and state “bureaucratic hurdles.” Jurisdictions that have pulled together sufficient resources have seen “tremendous progress,” he said, and overall indicators seem to be moving in the right direction.

But COVID-19 reduced HIV testing and may have diverted public health efforts, CDC administrators said. KFF Health News reported in April that stakeholders saw progress but worried that it won’t be enough to make the 2030 deadline.

Democrats appear to share this concern. The spending bill proposed by the Democratic-controlled Senate Appropriations Committee maintained or slightly increased funding levels to all HIV-related programs. The committee requested more data about the program, describing its “lack of quantifiable data showing outcomes.”

The House has not yet passed the bill out of committee. We know of some proposed cuts from the bill, which the Republican-led House Appropriations Subcommittee released in July.

It outlines a $1.6 billion cut to the CDC, including a $220 million reduction in “HIV/AIDS, viral hepatitis, sexually transmitted diseases, and tuberculosis prevention” and a $238.5 million cut from the Ryan White HIV/AIDS program. The Ryan White program provides medical care and support services to low-income HIV patients and serves more than half of those diagnosed in the U.S.

The bill also proposes cutting funding to the Minority HIV/AIDS fund by more than half — from $60 million to $28 million. According to HIV.gov, the fund supports prevention and care projects targeting disparities that affect communities of color.

Additional details about how these cuts could affect programs are detailed in a committee report that has not been made public. PolitiFact and some advocacy organizations obtained copies of the report, but the House Appropriations Committee did not respond to questions about it. The report we saw recommended cutting all funding for the Ending the HIV Epidemic initiative.

And House Democrats, advocacy organizations, and KFF Health News have each reported that the Ryan White program and CDC cuts result from a plan to eliminate the Ending the HIV Epidemic initiative.

“If they cut funding, it’s going to have a dramatic and draconian impact on the ability of all of the people who are working in these jurisdictions to improve public health,” said Sturchio, the researcher.

Although the cuts would be dramatic, experts said, they would not eliminate all domestic HIV funding.

“There is certainly a demonstration and a commitment to some of the core HIV programs, but there are millions of dollars of proposed cuts in other areas,” said Lindsey Dawson, associate director for HIV policy at KFF. “These cuts would have a meaningful impact on the ability of programs to provide lifesaving interventions for both HIV care and treatment, as well as prevention.”

The cuts would mean a 16% cut to the CDC’s division of STD prevention, a 9% cut to the Ryan White HIV/AIDS program, and a 53% cut to the Minority HIV/AIDS Fund from fiscal year 2023 to 2024.

These funding cuts are only proposals. They require a vote from the full appropriations committee and would have to pass the House and be negotiated with a Democratic-controlled Senate.

“We’ve heard for a long time that HIV is a bipartisan issue. But what some people forget, is that that bipartisanship was hard fought for over the first decade of the HIV epidemic,” said Dawson.

Other Challenges to HIV/AIDS Spending

The U.S. commitment to global HIV prevention, meanwhile, is also under scrutiny. Rep. Chris Smith, R-N.J., challenged reauthorizing the President’s Emergency Plan for AIDS Relief, also known as PEPFAR, without first making some changes. Started in 2003 by President George W. Bush, the program distributes funds in more than 50 countries for HIV testing, prevention, treatment, and medications. It also strengthens health care systems to fight AIDS.

Funding for the program has grown over the past 20 years, totaling more than $110 billion. The program reported 25 million lives saved by medical intervention.

Smith, who chairs the House Foreign Affairs subcommittee on Global Health, has expressed concerns that money is being given to nongovernmental organizations that support abortion rights and access.

U.S. law prohibits the direct use of overseas funding to provide abortions or to lobby for access to abortions. This has been the case since 1973. However, organizations that receive U.S. funding can do so with their own non-U.S. funding.

An official from the State Department, which runs the program, confirmed to PolitiFact that PEPFAR is legally restricted from funding abortion or lobbying for abortion access; the official cited the training of staff and partners and the monitoring of procedures to ensure compliance.

Other anti-abortion groups have favored a“Mexico City Policy,’‘ which has required foreign nongovernmental organizations to certify that they would not perform or promote abortion with funds from any source to be eligible for U.S. government funding. Trump applied the policy to PEPFAR, but Biden rescinded it.

The failure to reauthorize PEPFAR would not eliminate the program, and Congress can continue to fund the program without reauthorization, but it could cause some provisions to lapse over the next few years.

The lack of a reauthorization would have significant symbolic impact, said Kellie Moss, KFF’s associate director of global health and HIV policy. “It could make the program more vulnerable during funding discussions without a clear signal of bipartisan support.”

Although reauthorization is being held up, funding has progressed. On Sept. 28, the House passed a State Department and Foreign Operations Appropriations bill, which would fund PEPFAR for another year but implement a Mexico City-like policy provision on all global health funding. This bill would also extend the lapsing provisions for another year.

Our Ruling

Biden said that Republicans in Congress are “trying to wipe out federal funding to end the HIV epidemic.”

A subcommittee of House Republicans has proposed cutting some HIV prevention programs anywhere from 53% to 9% in fiscal 2024, depending on the program.

A committee’s draft report cited by advocacy and policy groups shows these cuts stem from the elimination of the Trump-era Ending the HIV Epidemic initiative, although the committee did not respond to questions about that.

Taken together, these cuts would not eliminate — or “wipe out” — all federal domestic HIV spending, but they do represent a significant cut.

Meanwhile, the House has not moved ahead to reauthorize PEPFAR, which supplies U.S. dollars for global HIV prevention, over Republican concerns about where organizations that receive the money stand on abortion access. But the House has passed one year of PEPFAR funding with some conditions about how it is distributed, which it can do without reauthorizing the program.

Biden’s statement is partially accurate in that significant funding cuts have been proposed by House Republicans, but he exaggerates by saying these efforts would “wipe out” federal funding.

We rate this claim Half True.

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(KFF Health News, formerly known as Kaiser Health News (KHN), 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.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

A proposed federal policy aims to protect older Americans from contracting HIV by offering free preventive medication, the latest effort to catch up to much of Europe and Africa in stemming the spread of the virus.

Under the plan from the Biden administration, Medicare would cover patients’ full cost of preexposure prophylaxis drugs, which prevent HIV transmission. The drugs, known by the shorthand “PrEP,” would be free in pill form and — for the first time — as long-acting injectables through the government insurance program designed for those 65 and older. Those 50 and over make up half of all people in the U.S. already living with HIV.

The proposed policy change represents a big shift because it means that even new long-acting injectable versions of PrEP drugs, which can cost more than $20,000 a year in the U.S., would be covered fully, without requiring patients to kick in copayments. It is not yet clear what the plan would mean for taxpayers, though, either in paying for the medications or in offsetting the costs of caring for fewer Medicare patients with HIV in the future.

The final green light for the plan was expected Oct. 10, but the Centers for Medicare & Medicaid Services announced it is still working out details of how to transition coverage for patients already taking the drugs.

The U.S. is decades behind nations in Europe and Africa that are on track to end new HIV infections by 2030. But while the proposal should bring down infections in older Americans, it highlights remaining inequities: Many people under age 65 will still struggle to pay for PrEP. And, at the same time, Republican congressional leaders have threatened to cut funding for a federal HIV prevention effort championed by the Trump administration that is intended to help all at risk.

“We’ve done a very poor job in the U.S. of assuring that people who could most benefit from PrEP have access to it,” said Justin Smith, who directs the Campaign to End AIDS at Positive Impact Health Centers in the Atlanta area.

Though PrEP has been embraced by gay and trans Americans, it is prescribed less often to heterosexuals over 50 or women of any age. In the first three months of this year, just 8% of the more than 300,000 people receiving PrEP in the U.S. were women, according to the Centers for Disease Control and Prevention. The racial gap is large, too: While 66% of white people eligible for PrEP got prescriptions for it in that period, only 8% of eligible Black people and 17% of eligible Hispanic people did.

Broadening access for gay and bisexual men of color, as well as straight and cisgender women of color — particularly Black women, who represent the majority of women with HIV in the U.S. as well as the majority of new infections among women — is critical for the nation to catch up to the rest of the world, Smith said.

PrEP, a Key HIV Prevention Tool, Isn’t Reaching Black WomenNew HIV infections occur disproportionately among Black women, but exclusionary marketing, fewer treatment options, and provider wariness have limited uptake of preexposure prophylaxis, or PrEP, drugs, which reduce the risk of contracting the virus.

Leisha McKinley-Beach, a national HIV consultant and CEO of the Black Public Health Academy, which prepares Black health department employees for leadership positions, noted that the Medicare proposal to cover the cost of injectable PrEP could help many women because a shot given every two months can be easier to manage than a daily pill.

But it’s just a start. She and others are lobbying for a national PrEP plan that would build on momentum from the recent Medicare proposal to expand free access to other age groups, much as with covid-19 vaccinations. McKinley-Beach also wants the U.S. government to expand the message that anyone can get HIV, encourage drug companies to advertise more on TV to women of color, and fund outreach to dispel medical mistrust in communities of color.

“Gay white men have had a narrative of dignity and respect with regards to HIV treatment, and I would never want to change that narrative,” she said. “But the message needs to be broadened. Forty-two years into the HIV epidemic, the current HIV prevention model is detrimental to Black women who could benefit from PrEP.”

Though the U.S. was the first nation to approve PrEP, in 2012, it now trails the rest of the world in equitable access. That’s mostly due to the cost of laboratory tests and medical visits. While the cost of the generic form of Truvada, an oral form of PrEP, can be as low as about $30 a month in the U.S., a study by University of Virginia researchers reported the cost of starting PrEP is typically about $2,670 for uninsured patients, including about $1,000 for lab tests and medical visits. The new Medicare proposal would cover up to seven counseling visits every 12 months for HIV risk assessment and reduction.

Meanwhile, PrEP pills are free for people in the United Kingdom and European Union nations including France, Germany, Sweden, and Denmark. Those nations don’t yet cover the more expensive shots, although the U.K. is leading a small test on injectable PrEP in people who cannot take it in tablet form.

The U.S. also lags Western Europe and some nations in Africa in overall HIV treatment and prevention. For example, just 57% of HIV-positive Americans have attained viral suppression, according to the U.S. government website HIV.gov, meaning they regularly take medications to make them unable to transmit the virus. That makes PrEP, which is for people who don’t have the virus, all the more important for Americans to stay negative, according to HIV experts.

In Africa, by contrast, Botswana, Eswatini (formerly Swaziland), Rwanda, Tanzania, and Zimbabwe have already achieved the United Nations’ “95-95-95” targets set for 2025 — 95% of people with HIV know their HIV status, 95% of people with diagnosed HIV infection receive sustained antiretroviral therapy, and 95% of people receiving antiretroviral therapy have achieved viral suppression, or the virus is undetectable in their blood — according to the U.N.

In the U.K., 98% of HIV-positive people have achieved “undetectable” status via free antiretroviral medicines and treatment available through the country’s universal health care program, the National Health Service. Moreover, nearly anyone in the U.K. who is HIV-negative and wants to take PrEP can get it at no charge. The U.K. says it is now on a path to reduce new HIV infections by 80% by 2025.

The U.K. changed its PrEP approach after 2015, when Greg Owen founded “iwantprepnow.co.uk,” a website that ignited a PrEP movement by helping people in the U.K. and Europe self-source low-priced generic forms of Truvada, the first drug approved as PrEP, from pharmacies in Hong Kong and India.

“It became more affordable,” said Owen, now PrEP lead at one of the U.K.’s top HIV and sexual health charities, Terrence Higgins Trust. “Soon people demanded it for free on the NHS.”

In the U.S., Smith said, the lack of a national PrEP program that would make the drugs and associated bloodwork free and a heated political climate around health care have hindered HIV outreach.

“In rural areas of the South, especially in places like Georgia or Tennessee, there has been outright hostility toward accepting money from the CDC and expanding Medicaid to treat and prevent HIV,” Smith said. “People think it’s just politics, but this is having an impact on public health, on people’s lives.”

Anti-queer sentiment in many quarters also creates an environment of hostility around overall sexual health, said Richard Elion, director of clinical research at Washington Health Institute and a professor at George Washington University School of Medicine and Health Sciences. “There’s a chilling effect for everyone, not just queer Americans,” he said.

Elion said shame surrounding sex and the feeling of vulnerability that some people get from taking any medicine may also reduce PrEP uptake among older Americans. “Taking PrEP is actually very empowering, and that needs to be the message,” he said.

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(KFF Health News, formerly known as Kaiser Health News (KHN), 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.)

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

The National Institute on Aging provides some tips useful for everyone, regardless of age.

Floors, stairway and hallways: Handrails on both sides are ideal. If the handrail is only on one side – use it and carry what you need in the free hand. If needed, make a second trip. Also, no small throw rugs, even if they are heirlooms, worth a lot of money or add just the perfect touch to your floor or hallway. Carpets need to be fixed firmly to the floor. 

Bathrooms: This is one of the most dangerous rooms. According to the National Institute on Aging, 80 percent of older adult falls happen in the bathroom due to slippery floors and surfaces. Here are some tips: Place a non-slip mat inside and outside the tub. Plug in nightlights in and around the bathroom. Clean up puddles on the floor. Install grab bars by the toilet or near the shower and tub and keep shampoo, soap and other bath products high on a shelf to avoid bending over.

Bedrooms: Darkness is a hazard. Place nightlights and switches close to your bed and keep a flashlight close by in case of a power outage, particularly if you need to make a bathroom stop. Also, keep a well-charged phone or landline near your bed. 

Kitchen: Place pots, pans and utensils in a place that is easy to reach. That may involve rearranging your kitchen. Clean up spills immediately; they are falls waiting to happen. Be cautious of waxed floors; if possible, do without. Consider a non-slip mat in areas near common spills or water. 

Outdoor spaces: Make sure steps leading to your home are not broken. When visiting others, be aware that some older homes have concrete steps that are not deep which can affect one’s balance. If leaving your home during the day and plan to return when dark, turn on an outdoor light when leaving or have a programmed outdoor light. Also, consider a grab bar near your front door for balance as you lock the door. 

Other living areas: One may think, “Just this one time, I’ll stand on the chair to reach something high. Don’t. That one time could be the last time. Use a reach-stick or ask for help. If you use a step stool, make sure it’s steady and has a handrail on top. If you have a pet, know where it is when you are standing or walking. Keep electrical cords near walls and aways from walking paths. Make sure your sofas and chairs are the right height for you to get in and out easily. Finally, keep a list of emergency numbers in large print near your phone and save them under “favorites” on your mobile phone.  

Here are few other tips: Get eyes checked once a year and update eyeglasses as needed. Review medications periodically to check for side effects such as drowsiness or dizziness which could increase the risk for falling. And get your hearing checked since hearing plays an important role in balance. A Johns Hopkins study found that falls increase threefold with even a mild hearing loss. 

Fall prevention is not just about our environment; it’s about one’s level of fitness. To prevent or minimize injury from a fall, consider exercise. Regardless of one’s life stage, there are fitness programs that can suit each individual’s level for optimum functioning. Such exercises typically are designed to maintain or enhance strength, balance and flexibility.  For example, consider tai chi, yoga or join a fitness class.   

“When we fall, we are consumed with embarrassment,” writes author Dani Shapiro in the New York Times article (“My Fall Made Me Feel Ashamed,” November 4, 2023).” She continues, “A fall is different from an accident or an act of violence. It’s not something done to you, but something you have done. I had been an agent of my own near catastrophe.  My trust in myself had been broken along with my jaw.” Shapiro continues, “When injured we are separated from the herd of the healthy.” She offers a lesson learned: “If we could all acknowledge our shared fragility (with age), shame would disappear.”

Let’s also remember that exercise can push becoming fragile out to our latest year. 

H.K., Thank you for your important question. Your father is fortunate to have you as a caring daughter. Stay well and know small acts of kindness count.

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

U.S. men dying nearly 6 years before women is now the largest life expectancy gap between sexes since 1996, according to new research led by Harvard T.H. Chan School of Public Health and UC San Francisco.

The life expectancy gender gap of 5.8 years in 2021 was a jump from 4.8 years in 2010, when the gap was at its smallest in recent history.

The pandemic, which took a disproportionate toll on men, was the biggest contributor to the widening gap from 2019 to 2021 — followed by unintentional injuries and poisonings (mostly drug overdoses), accidents, and suicide.

“There’s been a lot of research into the decline in life expectancy in recent years, but no one has systematically analyzed why the gap between men and women has been widening since 2010,” said first author Brandon Yan, a UCSF internal medicine resident physician and research collaborator at Harvard Chan School.

Life expectancy in the U.S. dropped in 2021 to 76.1 years — falling from 78.8 years in 2019, and 77 years in 2020.

The shortening lifespan of Americans has been attributed in part to so-called “deaths of despair.” The term refers to the increase in deaths from such causes as suicide, drug use disorders, and alcoholic liver disease, which are often connected with economic hardship, depression, and stress.

“While rates of death from drug overdose and homicide have climbed for both men and women, it is clear that men constitute an increasingly disproportionate share of these deaths,” Yan said.

Using data from the National Center for Health Statistics, Yan and fellow researchers from around the country identified the causes of death that were lowering life expectancy the most. Then, they estimated the effects on men and women to see how much different causes were contributing to the gap.

Before the COVID pandemic, the largest contributors were unintentional injuries, diabetes, suicide, homicide, and heart disease.

But during the pandemic, men were more likely to die of the virus. That was likely due to a number of reasons — including differences in health behaviors, as well as social factors, such as the risk of exposure at work, reluctance to seek medical care, incarceration, and housing instability.

“We have brought insights to a worrisome trend,” Yan said. “Future research ought to help focus public health interventions towards helping reverse this decline in life expectancy.”

Seminole

Pho Au Lac Restaurant And Teahouse at 158 Tuskawilla Road Suite 1300 in Winter Springs shut down on Nov. 7. Inspectors found 16 violations, six of which were a high priority.

Those violations included roach excrement, food held at the wrong temperatures, an improperly stored toxic substance and a sanitizing solution exceeding the maximum concentration allowed.

Officials revisited the restaurant on Nov. 8. They found five violations, but none were a high priority.

The restaurant met inspection standards.

Complaints and warnings

Orange County had the top spot for most warnings and other complaints in Central Florida, with 25.

Volusia had 16, Brevard had seven, Lake had one, Seminole had five and Osceola had five. Warnings given with required follow-up inspections could lead to a business being shut down if problems remain.

U.S. health officials are warning doctors to be on the lookout for possible cases of lead poisoning in children after at least 22 toddlers in 14 states were sickened by lead linked to tainted pouches of cinnamon apple puree and applesauce.

Children ages 1 to 3 were affected, and at least one child showed a blood lead level eight times higher than the level that raises concern, the Centers for Disease Control and Prevention said.

There’s no safe level of lead exposure, but the CDC uses a marker of 3.5 micrograms per deciliter to identify children with higher levels than most. The affected children’s blood lead levels ranged from 4 to 29 micrograms per deciliter.

The reported symptoms included headache, nausea, vomiting, diarrhea, a change in activity level and anemia.

The illnesses are part of an outbreak tied to recalled pouches of fruit puree marketed to kids from the brands WanaBana apple cinnamon fruit puree and Schnucks and Weis cinnamon applesauce pouches. The products were sold in stores and online.

Parents and caregivers should not buy or serve the products, and kids who may have eaten them should be tested for lead levels. Children who are affected may show no symptoms, experts said.

Lead exposure can lead to serious learning and behavior problems. Heavy metals like lead can get into food products from soil, air, water or industrial processes, according to the American Academy of Pediatrics.

The CDC said there were cases in the following states as of Nov. 7: Alabama, Arkansas, Louisiana, Maryland, Missouri, New Mexico, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, Texas and Washington.

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.

The U.S. Department of Justice last week filed a 79-page brief at the 11th U.S. Circuit Court of Appeals as part of a decade-long dispute with Florida about care for children in the state Medicaid program.

U.S. District Judge Donald Middlebrooks in July sided with federal officials and issued an injunction that, in part, requires the state to provide more private-duty nursing to help children live with their families or in their communities, rather than in nursing facilities. The state quickly challenged the ruling at the Atlanta-based appeals court.

In the brief filed last week, Justice Department attorneys said Middlebrooks correctly ruled that the Medicaid program has violated part of the Americans with Disabilities Act.

“The district court properly concluded that Florida is operating its Medicaid system in a manner that leads to the unnecessary institutionalization of children with medical complexity and a serious risk that other such children will be unnecessarily institutionalized,” the brief said.

The case involves children in the Medicaid program with conditions that often require round-the-clock care, including such things as ventilators, feeding tubes and breathing tubes. About 140 children are in nursing homes, while the case also involves a broader number of children considered at risk of going into nursing homes.

Middlebrooks wrote that the Americans with Disabilities Act requires the state to provide services in the most “integrated setting appropriate” to meet the needs of people with disabilities. He also cited a major 1999 U.S. Supreme Court ruling, in a case known as Olmstead v. L.C., that said “undue institutionalization” of people with disabilities is a form of discrimination.

The state is challenging Middlebrooks’ ruling on a series of grounds, but a key issue is part of the injunction that requires the Medicaid program to provide 90% of the private-duty nursing hours that are authorized for the children to help them live in family homes or communities.

In a brief filed in September, attorneys for the state called the injunction a “wildly overbroad and disproportionate response that violates principles of federalism” and called the private-duty nursing requirement “arbitrary and unprecedented.” The brief cited a nursing shortage that the state says would make it impossible to comply with the 90% requirement.

Emily Bendt was in her third trimester of pregnancy when she first heard the Centers for Disease Control and Prevention had approved a new shot for infants to protect them from the respiratory syncytial virus, or RSV.

By Oct. 5, Bendt was cuddling with her new baby, Willow, on the couch at home in Vancouver, Washington. She was excited to get Willow the new therapy for infants, called nirsevimab, which had started shipping in September — but Bendt, a pediatric home health nurse, couldn’t find it anywhere.

That very morning, at Willow’s two-week checkup, Bendt had asked the pediatrician when Willow could get it. “She literally just shrugged and was like, ‘Well, it’s coming, but we don’t know when,’” Bendt said. “I don’t know why I feel like I’m having to chase people down and still not get answers.”

Bendt searched online, too, for clinics or pharmacies or government websites offering nirsevimab — and found nothing.

By mid-October, demand for nirsevimab, sold under the brand name Beyfortus, had already outstripped supply, according to the pharmaceutical company Sanofi, which developed the drug with AstraZeneca.

In response, the CDC issued interim guidance Oct. 23 to help pediatricians allocate the limited supply of doses, advising them to focus on the infants at highest risk of RSV complications: those under 6 months old, and those with underlying medical conditions.

RSV is the leading reason babies under 12 months old end up in the hospital, and an estimated 100-300 kids under age 5 die from it in the U.S. every year.

Nirsevimab, a monoclonal antibody, is one of two new therapies available this fall that could dramatically reduce the risk of lung infections in infants.

The other option is an RSV vaccine from Pfizer called Abrysvo. It was first recommended for adults 60 and older, and then Sept. 22 the CDC approved its use in pregnant people, too, to confer some immunity on their infants.

But this adult vaccine is recommended only within a relatively short window in pregnancy, weeks 32 through 36, because of a potential but unproven concern it may increase preterm births. That might limit uptake during pregnancy.

By the time the vaccine was approved for pregnant people Sept. 22, Emily Bendt had given birth. So for Willow and other babies like her, nirsevimab will be the only option for protection from RSV this respiratory virus season.

Nirsevimab is approved for all infants up to 8 months old, and for some older babies and toddlers considered at higher risk of severe illness from RSV. The American Academy of Pediatrics recommends that every baby whose mother did not get the RSV vaccine while pregnant receive nirsevimab in the first week of life.

The CDC is now asking prenatal care providers to warn their patients about potential nirsevimab supply shortages, with the hope that driving up the maternal vaccination rate could help ease the demand for nirsevimab.

Nirsevimab’s powerful but pricey potential

Pediatricians say the high cost of nirsevimab and bureaucratic obstacles in Medicaid’s vaccine allocation system for children are slowing down nirsevimab’s distribution. They fear these problems leave infants at risk — unnecessarily — of hospitalization this winter.

In clinical trials, nirsevimab reduced RSV hospitalizations and health care visits in infants by almost 80%.

“This is groundbreaking, honestly,” said Katie Sharff, chief of infectious disease for Kaiser Permanente Northwest.

Nirsevimab is a monoclonal antibody treatment, not a traditional vaccine. The passive immunity it confers lasts about five months. That’s long enough to get babies through their first RSV season, when they’re at highest risk for complications.

After an infant’s first winter, “their airways develop and their lungs develop,” Sharff said. “So getting RSV later, as a child instead of as an infant, [means the child is] probably less likely to have severe complications of difficulty breathing, needing to be on a ventilator.”

Sharff’s own daughter had an RSV infection as an infant, needed care in the emergency department, and went on to develop asthma, a condition more common in children who had severe RSV infections.

For health systems worn down by the “tripledemic” of respiratory viruses — covid-19, flu, and RSV — keeping infants out of the hospital this winter could be a game-changer.

Last year was a historically bad season for RSV. Earlier in the pandemic, measures that states took to slow the spread of covid, such as masking, depressed RSV infections for a while, too. But as infection-control measures were rolled back, more babies and toddlers were exposed to RSV for the first time, at the same time.

In Oregon, the surge prompted then-Gov. Kate Brown, a Democrat, to declare a public health emergency and forced hospitals to add capacity to their pediatric intensive care units. Some hospitals even sent patients out of state.

“The promise of nirsevimab is that should never, never happen again,” said Ben Hoffman, a professor of pediatrics at Oregon Health & Science University’s Doernbecher Children’s Hospital in Portland and the president-elect of the American Academy of Pediatrics.

But that depends on the therapy’s availability, and whether providers can get it to newborns efficiently.

The most expensive childhood vaccine

For babies born without the protection of the maternal RSV vaccine, the American Academy of Pediatrics says the best time to get nirsevimab is at birth, before an infant is exposed to RSV at all.

But babies like Willow who were born before nirsevimab became available will need to get it from an outpatient clinic.

Except for the first dose of the hepatitis B vaccine, administration of childhood vaccines start one month after birth, in a pediatrician’s office, but the cost of nirsevimab might make that hard.

At $495 per dose, it’s the most expensive standard childhood shot, and insurers may not reimburse providers for it this year. That’s a particular problem for small pediatric practices, which can’t afford to lose that much money on a standard childhood vaccine.

“When all of a sudden you have a new product that you’re supposed to give to your entire birth cohort, and you’ve got to pay $500 that may or may not get paid back, that’s just not financially viable,” said Sean O’Leary, a pediatric infectious-disease specialist at the University of Colorado School of Medicine.

Some insurers, but not all, have announced they will cover nirsevimab right away. Because of a quirk in the Affordable Care Act, commercial insurance plans can wait up to a year after a new therapy is approved before they are required to cover it.

Sanofi has announced an “order now, pay later” option for doctors, which would give them more time to work out reimbursement deals.

Could hospitals help?

A government program that supplies free shots to about half the children in the United States is structured in a way that makes it hard to get nirsevimab to babies right after birth.

Vaccines for Children is a safety-net program that provides vaccines to kids on Medicaid, uninsured children, and Alaska Native and American Indian children.

Health care providers can’t bill Medicaid for shots like nirsevimab. Instead, they must register and enroll in the VFC program. Through it, the federal government purchases shots from companies like Sanofi at a discount, and then arranges for them to be shipped free to VFC-enrolled providers, which tend to be pediatric practices or safety-net clinics.

But most hospitals aren’t part of VFC, which presents a problem.

“Many of our newborns go home to caring, affectionate, loving siblings who are actively dripping snot at the time that the child is born,” said Eddie Frothingham, a pediatrician with Mid-Valley Children’s Clinic in Albany, Oregon. “The sooner we can protect them, the better.”

Right now, only about 10% of birthing hospitals nationwide are enrolled in VFC and can get nirsevimab free.

Until nirsevimab’s debut a few months ago, most hospitals didn’t have a strong incentive to participate in Vaccines for Children because childhood vaccines outside of hepatitis B are typically given to kids by pediatricians, in outpatient clinics.

VFC can be burdensome and bureaucratic, according to interviews with several Oregon hospitals and immunization experts. The program’s stringent anti-fraud measures discourage health care providers from enrolling, they say.

Once enrolled, providers must track and store VFC-provided vaccines separately, apart from other vaccine supplies. The person giving a pediatric shot has to know what insurance the child has, and account for each dose in a state-run electronic record system.

Mimi Luther, immunization program manager for Oregon, said the rules are nearly impossible for most hospitals to follow.

“I look forward to the day when the feds have the opportunity to modernize that system to make it easier for providers to enroll and stay enrolled,” she said.

The CDC has relaxed some program rules in light of the shortage of nirsevimab, allowing providers to “borrow” up to five VFC doses for infants covered by private insurance — as long as those doses are paid back within a month.

This has forced some health systems to make difficult choices. Many are allowing infants to leave the hospital without the shot, assuming they will get it at the first pediatric outpatient visit.

Frothingham said that also creates an equity problem. Newborns whose parents don’t have transportation, or financial resources, are more likely to miss those first pediatric appointments after birth.

Samaritan Health Services, the health system Frothingham works for, has decided to privately purchase a small number of doses to offer in its hospitals, for newborns whom doctors flag as high risk because of breathing problems or family poverty.

“It’s important to us that infants be able to access this regardless of their financial or social circumstances,” Frothingham said.

Nationwide, many birthing hospitals are trying to enroll in the VFC program for next year. But this fall, most won’t have free nirsevimab on hand.

Most babies who get RSV ultimately recover, including those who require hospitalization to help with their breathing. But it’s challenging to treat, and each year some babies die.

In his decades in medicine, OHSU’s Hoffman has lost infant patients to RSV.

“Knowing that some kids may potentially suffer because of delayed access or absence of access to a product that could potentially save their lives is awful,” Hoffman said. “No pediatrician in the country is happy right now.”

This article is from a partnership that includes OPB, NPR , and KFF Health News.

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KFF Health News, formerly known as Kaiser Health News (KHN), 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.

©2023 KFF Health News. Distributed by Tribune Content Agency, LLC.

The loss of taste and smell — hallmarks of a coronavirus infection early in the pandemic — became a stubborn blight for many long COVID-19 sufferers, but new research shows that the sensory problems gradually abate.

Smell and taste disturbances were reported in almost two-thirds of the 100 people who had caught a mild case of COVID-19 in the fall of 2020 in Trieste, Italy, and were randomly selected for studying alongside 100 uninfected people for comparison. Both groups were followed for three years.

About a quarter of the COVID-19 cases couldn’t taste properly a year after the acute illness but, after two years, there was little difference between them and controls. The research, published Thursday in a letter to the journal JAMA Otolaryngology, suggests that so-called gustatory dysfunction, linked to the taste bud-damaging immune response to lingering vestiges of SARS-CoV-2 in the tongue, resolves faster than problems with smell.

More than a quarter of the COVID-19 group still experienced olfactory dysfunction two years after infection, but after three years, the condition wasn’t significantly more common than in controls, the researchers found.

That’s reassuring for the 28 million Americans estimated to have endured a worse sense of smell after COVID-19. Far from a benign inconvenience, a coronavirus-induced sensory upheaval can make people not want to eat, leading to depression and weight loss, and prevent the detection of harmful gas and smoke.

“A recovery of olfaction appears to continue over three years,” Paolo Boscolo-Rizzo, a researcher at the University of Trieste, and colleagues wrote. “These results can be generalized to individuals of white race who experienced mild symptoms during the early waves of the COVID-19 pandemic.”

The complication has become less common since the omicron variant became the predominant cause of COVID-19 at the end of 2021. Scientists have long sought to understand the cause of the impairment, which has been linked to certain genetic variations, and neurological manifestations and damage to olfactory support cells.

©2023 Bloomberg L.P. Visit bloomberg.com. Distributed by Tribune Content Agency, LLC.

CHICAGO — Before David “Davey” Bauer made history at Northwestern Medicine for a double lung transplant assisted by a pair of DD breast implants, he considered himself a fairly healthy guy.

Bauer, 34, spent his hours off from his landscaping job in De Soto, Missouri — near St. Louis — golfing, snowboarding and skateboarding. Cigarettes, he thought, were the only negative. A former smoker who went through a pack a day for four years, Bauer switched to vaping in 2014.

“I thought it seemed like a safer alternative,” Bauer said. “In hindsight, it seems like I should have just quit sooner … it’s not good to inhale anything in your lungs, other than oxygen, obviously.”

So when Bauer entered an urgent care clinic outside of St. Louis in April with the flu, he expected to recover fast.

“They were just like, ‘He’s got the flu, there’s a little bit of pneumonia in his lungs, here’s a Z-Pak, you’re good to go,’” Susan Gore, Bauer’s girlfriend of seven years, said at a news conference Wednesday. “And the next day he couldn’t walk.”

The flu had turned into a lung infection resistant to antibiotics. On April 17, Bauer entered the intensive care unit at Saint Louis University Hospital. He was moved onto a ventilator, then into a medically induced coma.

SLU Hospital refused to perform a lung transplant, saying Bauer was too sick to survive. After the hospital called the Northwestern Medicine Canning Thoracic Institute, Gore and Bauer relocated to Chicago in late May.

Bauer’s surgery was “uncharted territory” for the program, said Dr. Rade Tomic, medical director of the Northwestern Medicine Canning Thoracic Institute Lung Transplant Program.

“We knew that to get him listed (for a transplant), we had to resolve the infection,” Tomic said. “The only way to resolve the infection was actually taking the lungs out.”

The surgical team removed Bauer’s infected lungs and cleaned out his chest cavity. To keep his body alive without lungs, the team needed to create channels for blood to flow in and out of his heart, said Dr. Ankit Bharat, chief of thoracic surgery and director of the Canning Thoracic Institute.

That’s where a pair of DD breast implants came in.

“We needed something to support his heart, and the DD breast implants seemed to be the perfect fit,” Bharat said Wednesday, as Bauer and Gore exchanged grins. “And frankly, they were the biggest we could get at the time.”

With Bauer’s heart stabilized between the implants, surgeons created an artificial lung outside Bauer’s body. The thoracic surgery team collaborated with plastic surgeons for a “crash course” on working with breast implants.

After the fact, Bauer said he was able to laugh at his clinical cleavage, adopting the nickname “Double-D Davey.”

“I didn’t know much of it until after the fact,” Bauer said Wednesday. “I thought it was awesome. Kind of funny.”

“I was like, ‘You get boob implants, but I don’t?’” Gore quipped.

Bauer was soon well enough to be listed for a double lung transplant. Two new lungs were available within 24 hours, and both were installed May 28, at which point the implants were removed.

“I feel so blessed,” Bauer said. “I mean, it’s incredible. I got a second chance at life.”

Bauer’s successful surgery was buoyed not only by the implants, but by good luck, Bharat said. It’s rare that two healthy lungs become available within 24 hours, and keeping Bauer stable between procedures — not to mention restarting his heart — was complicated.

Bharat had expected that the temporary circulation system, with Bauer’s heart nestled between the breast implants, could keep him alive for about a month.

“We were really surprised how fast he recovered once we took out his infected lungs,” Bharat said.

Bharat hopes the procedure can be used again in the future to stabilize people who need a lung transplant, but are too sick to receive new organs immediately.

“This is the first time, certainly, this technique was used,” Bharat said. “It has taught us a lot and hopefully can be used for other patients.”

Bauer was placed on dialysis while he recovered, and developed foot drop, a nerve compression impacting the movement of his foot. He also had myocarditis in the lining of his heart, and still speaks through a tracheostomy tube in his throat.

Still, Bauer is expected to make a full recovery — though he says he will never vape again.

“I feel a lot more like myself before all of this,” Bauer said. “I’m getting better every day.”

Tomic hopes that Bauer’s experience discourages patients from seeing vaping as a healthy substitute for cigarettes.

“We know that vaping can cause injury to the lungs, and also that flu can cause fatal outcomes, life-threatening infections,” Tomic said.

Bauer was discharged from Northwestern Memorial Hospital in late September. He will remain in Chicago for another year in outpatient care.

A fundraiser supporting Bauer’s recovery has raised just over $34,000 to date.

Bauer said he misses watching the St. Louis Cardinals play at Busch Stadium. He and Gore have settled in River North for the time being, though, with dogs Penny and Bear.

“Home is where the heart is, and this is my heart,” Gore said. “So, this is where he is, and this is where we are.”

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©2023 Chicago Tribune. Visit chicagotribune.com. Distributed by Tribune Content Agency, LLC.