The number of U.S. mpox cases has more than doubled compared with last year, and the federal Centers for Disease Control and Prevention has been urging clinicians across states to encourage vaccinations for those at risk.

As of May 25, the nation had seen a roughly 150% increase in cases of the disease formerly known as monkeypox — from 434 at that time last year to 1,089 this year, according to the CDC. About a third of the cases are in New York state, New York City (which the CDC reports separately), New Jersey and Pennsylvania.

Anyone can contract mpox, a viral disease that can cause a rash, pain severe enough to require hospitalization and — in rare cases, primarily in patients with other complications — death. But during 2022’s U.S. outbreak, the contagious infection mainly affected men in gay and bisexual communities. While it’s not a sexually transmitted infection, mpox can be passed through skin-to-skin contact, respiratory droplets or contact with bodily fluids.

June is Pride Month, and public health experts are concerned about a potentially higher caseload this summer as people gather for large celebrations. Experts are encouraging vaccination outreach, especially to Black and Hispanic LGBTQ+ people, who are less likely to be vaccinated and more likely to face barriers to getting care.

Those who are at highest risk for mpox, including men who have sex with men and people with advanced HIV, should receive two doses, four weeks apart, of the trademarked Jynneos vaccine to prevent infection.

The CDC has warned that low vaccination rates among those groups with the highest risk of mpox exposure could lead to a resurgence of the disease.

Dr. Richard Silvera, an assistant professor of infectious diseases at the Icahn School of Medicine at Mount Sinai in New York City, said the current mpox rates are far lower than they were in 2022, when there were more than 3,800 cases citywide, but that the numbers are growing rapidly.

“I am very concerned that there will be increased rates over the summer, particularly as we hit Pride Month,” Silvera said.

New York City has seen more than 200 cases this year — up from 46 at this time last year. It’s unclear what is causing the surge, but Silvera and other experts say one factor could be that some patients may not have received their second doses.

“Either their immunity is waning, or folks didn’t get complete vaccination,” he said. “And so now there’s been time for that virus to exploit those gaps in protection.”

The New York City Department of Health and Mental Hygiene released an advisory in early May, noting that of the 256 diagnoses between October 2023 and April 15, 73% were among unvaccinated people or people who had received only one dose.

“There’s a large overlap between people who belong to BIPOC communities, living with HIV, identifying as LGBTQ+,” said Preeti Pathela, executive director of the STI program at the agency.

“Our hope is that, through this kind of regular outreach which we have intensified in the last couple of months, knowing that coming into the summer is going to be a critical time to really double down, we’re just hoping that the messaging and the services get out to the communities that need it.”

Racist language associated with the former name of mpox helped spur the World Health Organization to rename it in 2022. Public health experts also were concerned that the former name might be discouraging people from being tested and vaccinated by contributing to the stigma surrounding the disease.

In reports last month, the CDC warned of a heightened global threat of a deadlier strain of mpox that is devastating the Democratic Republic of Congo, where the virus is endemic. That strain hasn’t been detected in the United States, but the agency and clinicians are on alert for possible cases in travelers from the country.

Infectious disease physician Dr. Anu Hazra said he and others in the field are closely watching that strain.

“The only way that we can truly think about eradicating mpox is bringing vaccines to everywhere in the world that’s impacted by the illness,” said Hazra, who sees patients at Howard Brown Health, which runs several clinics in the Chicago area focused on LGBTQ+ care.

HIV patients are at higher risk of contracting mpox, and are disproportionately Black and Hispanic. Racism, homophobia and barriers to care such as poverty and a lack of transportation complicate prevention and treatment efforts.

“When we think about, sort of, any communicable disease, we know that it tracks along racial and economic fault lines. We’ve seen that with HIV, we’ve seen that with COVID, we see that with certain STIs — we have certainly seen it with mpox,” Hazra said.

Silvera, of the Icahn School of Medicine, said clinicians and state health agencies also should consider the historic distrust of medicine among Black and Hispanic communities.

“It takes a lot of time. We’re undoing decades and centuries of work,” he said. “It’s a tough job. And so, we can do that person to person, but it’s also going to require larger efforts as well to undo these disparities.”

Along with distrust and vaccine skepticism, fear of being “outed” as gay is a major barrier in some Black communities, said Ryan Payne, a prevention specialist at the Alliance of AIDS Services-Carolina. The organization serves six counties in North Carolina.

“That is a full-blown truth. It’s very hard. Me and my co-workers are talking about that all the time,” Payne said.

At the end of April, the North Carolina Department of Health and Human Services found that 30 of the 51 cases over the previous six months were among Black people. But only 27% of patients vaccinated in the state this year were Black.

In Pennsylvania, there have been 64 reported mpox cases compared with two at this time last year, according to the CDC. The state’s health department said it will emphasize the importance of vaccinations throughout 2024, using an awareness campaign that will focus on reaching the at-risk populations through social media and dating apps.

Cory Haag, a registered nurse at the Central Outreach Wellness Center in Pittsburgh, said the best way to stem the spread is by addressing barriers, educating patients and quelling fears within the LGBTQ+ community the center serves.

Many patients travel for up to two hours to receive care at the center. It provides bus passes to patients so they can more easily return for a second vaccine dose.

“We’re just happy to be that safe space to catch them,” Haag said.

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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Stefani Goerlich, a certified sex therapist and social worker with a private practice in Detroit, sees several dozen clients a month, most of them from underserved and minority backgrounds. She speaks to them about sensitive matters such as gender-affirming care, and building trust takes time.

Those hard-won relationships often are upended when clients move away from Michigan, because most states bar social workers from providing telehealth services across state lines. Finding another therapist who is a good fit isn’t easy, especially since many areas of the country have a shortage of mental health providers.

“It takes them such a long time to find somebody that they feel safe with,” Goerlich said. “To have a spouse get transferred in their job and to lose all of that? Statistically, people are more likely to just stop therapy entirely, because they don’t want to have to go through that again.”

Amid what many Americans are calling a mental health crisis, an increasing number of states are trying to address the problem by empowering social workers to practice across state lines.

Under the Social Work Licensure Compact, social workers can get a multistate license, which clears them to care for patients in a participating state, even if they don’t live there. Social workers must abide by the laws of the state where the patient resides.

Missouri was the first state to approve compact legislation, in July 2023. Since then, 14 other states have signed on. And at least 17 more are considering bills to do the same, according to the nonpartisan Council of State Governments, a nonprofit organization that promotes the exchange of ideas across state lines.

The compact is the result of a collaboration among the council, the U.S. Department of Defense and the Association of Social Work Boards, which develops social work licensing exams. The National Association of Social Workers and the Clinical Social Work Association, both membership organizations for social workers, are partners in the effort.

The Defense Department is involved because military families move frequently, and many of them include social workers. Getting a new license every one or two years is burdensome. The social work compact is one of 10 multistate licensing agreements the Defense Department agreed to fund a few years ago, ranging from teaching to cosmetology, according to Matt Shafer, a deputy program director at the Council of State Governments.

Shafer told Stateline it likely will take one to one and a half years until licenses are issued under the social work compact.

This isn’t the first compact to allow mental health providers to practice across state lines. Thirty-six states have passed legislation to allow psychologists to practice elsewhere by joining an interstate compact known as PSYPACT.

“It works,” Robin McLeod, a senior director at the American Psychological Association, said of PSYPACT. “It allows for people who have specialized practice to provide care, or for people who need specialized practice to receive care.”

For example, McLeod said, a therapist might specialize in serving patients with autism and also speak Arabic. Under the interstate compact, a practitioner could serve more people with those specific treatment and language needs, via telehealth.

However, McLeod noted, therapists practicing under the compact still have to navigate differing state laws. She pointed to Texas, where providers need to be aware of laws prohibiting abortion and gender-affirming medical care.

“Those are times where it can be really tricky,” she said. “If you’re practicing in that state from another state, it’s the Texas health and safety laws that you would have to follow.”

But Alabama Democratic state Rep. Kenyatté Hassell, who sponsored successful compact legislation in his state, thinks the benefits outweigh the potential complications. A 2023 report from Mental Health America, a nonprofit that focuses on issues of mental illness, ranked Alabama 48th among the states in its effectiveness addressing mental health and substance use issues, citing its high prevalence of mental illness and limited access to care.

“I know, as a state, we need to put more money into the health department to deal with mental health, from schools to workplaces,” Hassell told Stateline. “We defunded some of the mental health hospitals that we had in the state. And it became a problem.”

In Colorado, where a bill that would allow the state to join the compact is on the governor’s desk, Democratic state Rep. Emily Sirota — a social worker herself — noted the issue is bipartisan. Compact bills also are awaiting governors’ signatures in Minnesota, New Hampshire and Tennessee, according to the Council of State Governments.

“It’s not a partisan issue to recognize a need in the workforce,” Sirota told Stateline. She said the licensing compact is a way to make connections between patients and social practitioners “more streamlined and more effective.”

For Goerlich, who sees clients in at least four states, anything that can make licensure easier for therapists is a good thing. In addition to Michigan, Goerlich went through the licensing process in Arizona and Ohio so she could continue to treat patients who moved to those states. She also works in Florida, where she says she doesn’t need a full license because she is a registered telehealth provider.

“I went through all the hoops, I got licensed,” she said. “But that ended up costing me money. And I’m fine with it, because I’m able to help people. But if we had something like a compact, I would have been able to see them without needing to do that.”

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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Jackson Quinn brings PFAS water samples into a temperature controlled room, Wednesday, April 10, 2024, at a U.S. Environmental Protection Agency lab in Cincinnati. The Environmental Protection Agency on Wednesday announced its first-ever limits for several common types of PFAS, the so-called "forever chemicals," in drinking water.(AP Photo/Joshua A. Bickel)

In recent years, Michigan has spent tens of millions of dollars to limit residents’ exposure to the harmful “forever chemicals” called PFAS. And some cities there have spent millions of their own to filter contaminated drinking water or connect to new, less-polluted sources.

“We’ve made significant investments to get up to speed,” said Abigail Hendershott, executive director of the Michigan PFAS Action Response Team, which serves as a coordinating group for the state’s testing, cleanup and public education efforts. “There’s still a good chunk of the country that hasn’t taken on anything.”

That’s about to change.

The U.S. Environmental Protection Agency issued new standards last month for PFAS levels in drinking water, giving water systems three years to conduct testing, and another two years to install treatment systems if contaminants are detected. State officials and utilities say it’s going to be difficult and costly to meet the requirements.

“This is going to take a lot more investment at the state level,” said Alan Roberson, executive director of the Association of State Drinking Water Administrators, a group that convenes leaders in state health and environmental agencies. “It creates a big workload for everybody.”

PFAS chemicals are widespread, found in a host of everyday products and industrial uses, and they don’t break down naturally, meaning they stay in human bodies and the environment indefinitely. Exposure has been shown to increase the risk of cancer, decrease fertility, cause metabolic disorders and damage the immune system.

To date, 11 states have set limits for PFAS, or perfluoroalkyl and polyfluoroalkyl substances, in drinking water. Several others have pending rules or levels that require public notice. While the federal rule builds on those efforts, it also sets limits that are stricter than the state-issued rules.

“We really have looked to the states as leaders in setting standards and doing some of the foundational science,” said Zach Schafer, director of policy and special projects for the EPA’s Office of Water. “The state agencies are the ones who will be playing the point role [in implementing the national rule].”

Schafer said the agency estimates that 6% to 10% of water systems nationwide will need to take steps to reduce PFAS contamination, at a cost averaging $1.5 billion per year over an 80-year span.

Public health advocates say the EPA’s rule is an important step to ensure all Americans have access to safe water. They say state actions show that such efforts can work.

But some state regulators and water suppliers — even in states that already have their own rules — say the strict thresholds and timelines imposed by the feds will be difficult for many utilities to achieve. While the Biden administration has dedicated billions in funding to help clean up water supplies, experts say the costs will far exceed the available money.

“It's going to have a significant impact nationally on water rates and affordability of water,” said Chris Moody, regulatory technical manager with the American Water Works Association, a group that includes more than 4,000 utilities.

An estimate, conducted on behalf of the association, pegs the national cost of cleaning up contaminated water at nearly $4 billion each year. The report found that some households could face thousands of dollars in increased rates to cover the costs of treatment.

‘There’s a lot of concern’

New Jersey in 2018 became the first state to issue standards for PFAS in drinking water. While the state’s regulations given New Jersey a head start, officials say they still have a difficult task ahead to meet the stricter thresholds.

“When we bring in the EPA number, the number of noncompliant systems goes up dramatically,” said Shawn LaTourette, the state’s commissioner of environmental protection. “There’s a lot of concern about cost and implementation.”

LaTourette said state leaders are working to analyze which water systems may fall out of compliance when the federal thresholds take effect. And he’s calling on lawmakers to provide more money to communities that can’t afford the upgrades.

In Washington state, utilities have begun testing for PFAS under state standards passed by regulators in 2021. Officials say that roughly 2% of the water systems tested so far aren’t in compliance, but that number would jump to 10% when factoring in the stricter federal limits. State leaders say they’ll be able to grandfather in the data they’ve been collecting to meet EPA’s testing requirements.

The agency may ask state lawmakers for a “substantial” increase in staffing to implement the new rules, said Mike Means, capacity development and policy manager with the Washington State Department of Health.

Michigan has had its drinking water standards for PFAS since 2020. Hendershott said state officials are well prepared to incorporate the EPA’s thresholds. But the strict new limits could quadruple the number of water systems that fall out of compliance.

Sarah Doll, national director of Safer States, an alliance of environmental health groups focused on toxic chemicals, said state efforts were key to bringing about the federal rule.

“They created the urgency for the feds to bring these standards,” she said. “States that already have regulatory standards absolutely are in a better position.”

‘It’s very expensive’

While many states have not enacted their own standards, some have conducted testing or taken other steps to address residents’ exposure.

Missouri has been testing water systems for PFAS for more than a decade and created maps to notify residents of potential exposure. Of the 400 systems it’s sampled, 11 may have trouble complying with the EPA rule, said Eric Medlock, an environmental specialist with the state Department of Natural Resources. The agency aims to bring on a chemist and laboratory equipment to conduct more testing in-house.

Medlock expressed concern that the federal limits are so strict that they’re near the threshold of what can be detected.

“When you get down to these really low detection levels that are right at the regulatory limit, that poses a problem,” he said. “We're going to have to enforce and regulate what EPA proposed. It is going to be an issue.”

Medlock and others noted that states will face longer-term issues with the storage of the waste products filtered from the water,  which carry their own PFAS contamination risk.

The infrastructure bill passed by Congress in 2021 includes $5 billion over five years to help communities treat PFAS and other emerging contaminants.

More funding for cleanup may come from state lawsuits filed against chemical manufacturers. Thirty attorneys general have filed litigation against polluters, and Minnesota settled its case against 3M Company for $850 million. But leaders say such settlements aren’t a predictable funding source.

In addition to the upfront cost of installing treatment systems, utilities face ongoing expenses, such as replacing filters and disposing of waste, that are less likely to benefit from federal grants and loans. Meanwhile, some water system leaders say the federal compliance timelines may not be long enough.

“It takes time to design and build a major capital project,” said Erica Brown, chief strategy and sustainability officer for the Association of Metropolitan Water Agencies, a policy group that advocates for public water utilities. “It's not one of those things that you say, ‘You have to do this, and next year,’ and you can just turn it on.”

And some officials fear the drinking water limits could lead to more state regulations on wastewater plants and other entities whose discharges may affect drinking water sources.

“It seems like it's going to be problematic, because [treatment] is very expensive,” said Sharon Green, manager of legislative and regulatory programs with the Los Angeles County Sanitation Districts, an agency whose members operate 11 wastewater treatment plants.

Both state regulators and regulated utilities say state leaders need a broader approach to the PFAS problem than just treating the water that comes out of the tap. Officials need to stop pollution at the source, regulate industrial operations and limit products that contain the chemicals.

“If we keep it out of the river in the first place, … [the utility] doesn’t have to spend millions of dollars for treatment,” said Jean Zhuang, senior attorney with the Southern Environmental Law Center, an advocacy group focused on the South.

While Southern states have not adopted drinking water standards for PFAS, Zhuang said South Carolina’s requirement that polluters disclose their discharges of PFAS is a good model to begin cutting off contamination sources.

As states face down the expenses of fixing the PFAS problem, some advocates also want them to remember the public health costs of inaction.

“People will ultimately be consuming less of these chemicals and getting sick less often,” said Melanie Benesh, vice president of government affairs at the Environmental Working Group, a public health advocacy nonprofit.

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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Children watch as rescue personnel carry a manatee to the water during a mass release of rehabilitated manatees at Blue Spring State Park, Monday, Feb. 13, 2023, in Orange City, Fla. (AP Photo/Phelan M. Ebenhack)

Births continued a historic slide in all but two states last year, making it clear that a brief post-pandemic uptick in the nation’s birth numbers was all about planned pregnancies that had been delayed temporarily by COVID-19.

Only Tennessee and North Dakota had small increases in births from 2022 to 2023, according to a Stateline analysis of provisional federal data on births. In California, births dropped by 5%, or nearly 20,000, for the year. And as is the case in most other states, there will be repercussions now and later for schools and the workforce, said Hans Johnson, a senior fellow at the Public Policy Institute of California who follows birth trends.

“These effects are already being felt in a lot of school districts in California. Which schools are going to close? That’s a contentious issue,” Johnson said.

In the short term, having fewer births means lower state costs for services such as subsidized day care and public schools at a time when aging baby boomers are straining resources. But eventually, the lack of people could affect workforces needed both to pay taxes and to fuel economic growth.

Nationally, births fell by 2% for the year, similar to drops before the pandemic, after rising slightly the previous two years and plummeting 4% in 2020.

“Mostly what these numbers show is [that] the long-term decline in births, aside from the COVID-19 downward spike and rebound, is continuing,” said Phillip Levine, a Wellesley College economics professor.

To keep population the same over the long term, the average woman needs to have 2.1 children over her lifetime — a metric that is considered the “replacement” rate for a population. Even in 2022 every state fell below that rate, according to final data for 2022 released in April. The rate ranged from a high of 2.0 in South Dakota to less than 1.4 in Oregon and Vermont.

Trends for Latina women

The declines in births weren’t as steep in some heavily Hispanic states where abortion was restricted in 2022, including Texas and the election battleground state of Arizona. Births were down only 1% in Arizona and Texas. When health clinics closed, many women might have been unable to get reliable birth control or, if they became pregnant, to get an abortion.

Hispanic births rose in states where abortion is most restricted, even as non-Hispanic births fell in the same states, according to the Stateline analysis. It’s hard, however, to tell how much of a role abortion access played compared with immigration and people moving to growing states such as Texas and Florida.

In states where abortion access is most protected, births fell for both Hispanic and non-Hispanic women.

“The big takeaway to me is the likely increase in poverty for all family members, including children, in families affected by lack of access [to abortion and birth control],” said Elizabeth Gregory, director of the Institute for Research on Women, Gender & Sexuality at the University of Houston.

Many of the nation’s most Hispanic states where abortion and birth control are more freely available saw the biggest decreases in births: about 5% in California, Maryland, Nevada and New Mexico.

“Hispanic women as a group are facing more challenges in accessing reproductive care, including both contraception and abortion,” Gregory said in a university report earlier this year. “Unplanned births often directly impact women’s workforce participation and negatively affect the income levels of their families.”

Hispanic women on average have more children than Black or white women. Their fertility rates rose throughout much of the 1980s and 1990s, then fell in the late 2000s to near the same level as other groups. That’s because both abortion and more reliable birth control became more widely available, Gregory said.

The fact that some of the steepest drops were in heavily Hispanic states outside of Arizona and Texas suggests that Latina women are continuing a path toward smaller and delayed families typical of other groups.

Most of the decline in California has been associated with fewer babies born to Hispanic women, especially immigrants, said Johnson, of the Public Policy Institute of California.

“California has a high share of Latinos compared to other states, and so fertility declines in that group have a huge effect on the overall decline in California,” he said. California was above replacement fertility as recently as 2008, he added, and would still be there if Hispanic fertility had not dropped. California is about 40% Hispanic, about the same as Texas and second only to New Mexico at 50%.

Birth rates also declined steeply in heavily Hispanic Nevada and New Mexico, with each dropping about 4% from 2022 to 2023. But Arizona, Florida and Texas, also in the top 10 states for Hispanic population share but faster-growing, saw relatively small drops of about 1%.

Texas banned almost all abortions after the U.S. Supreme Court overturned Roe v. Wade in 2022. The state also requires parental consent for birth control, a rule that’s included federally funded family planning centers since a lower court ruling that same year.

Arizona also saw the number of abortions drop in 2022. After the high court’s Dobbs v. Jackson decision, an Arizona judge revived enforcement of a near-total ban on the procedure that was enacted in the Civil War era. Many clinics closed and never reopened.

Abortions in the state plummeted from more than 1,000 a month early in 2022 to 220 in July 2022, and never fully recovered, according to state records. The rate of abortions dropped 19% for the year. Births that year increased slightly, by 500, over 2021.

In Texas, Gregory’s research at the University of Houston research saw an effect on Hispanic births when an abortion ban took effect in 2021. Fertility rates rose 8% that year for Hispanic women 25 and older, according to the report.

Both Texas and Arizona also are growing quickly, making the smaller decreases in births harder to interpret, Arizona State Demographer Jim Chang noted. Chang declined comment on the effect of abortion accessibility on state birth rates.

Budget effects

Overall, the continuing fall in birth numbers could have significant effects on state budgets in the future. The slide augurs more enrollment declines for state-funded public schools already facing more dropouts since the pandemic.

“The decline we see in enrollment since COVID-19 is a bigger problem than just the decline in birth rates,” said Sofoklis Goulas, an economic studies fellow at the Brookings Institution. Rural schools and urban high schools have been particularly hard hit, according to a Brookings report Goulas authored this year.

“We don’t have a clear answer. We suspect a lot of people are doing home education or going to charter schools and private schools but we’re not sure,” Goulas told Stateline.

Still, states need to recognize declining births as an emerging factor in state budgets to avoid future budget shortfalls, said Jeff Chapman, a research director who monitors the trend at The Pew Charitable Trusts.

Nationally, births did increase slightly for women older than 40, indicating a continuing trend toward delayed parenthood, said William Frey, a demographer at Brookings.

“The last two post-pandemic years do not necessarily indicate longer-term trends,” Frey said. “Young adults are still getting used to a recovering economy, including childbearing.”

Stateline is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Stateline maintains editorial independence. Contact Editor Scott S. Greenberger for questions: info@stateline.org. Follow Stateline on Facebook and Twitter.

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A state judge has ordered New Jersey health officials to release records about police use of DNA samples, known as blood spots, collected in the state's mandatory newborn screening program. (Photo by Getty Images)

New Jersey health officials aim to add genomic sequencing — a new technology that allows scientists to document a person’s entire DNA — to the state’s mandatory newborn blood screening program.

It’ll likely take five years, at minimum, to sort out the practical and ethical implications of adopting the technology, said Ernest Post, chairman of the state’s newborn screening advisory review committee. But Post called it an urgent task, as both public health officials in other states and private industry race to embrace it as a tool to more fully screen babies for disease.

Post, speaking at the committee’s biannual meeting Tuesday, said a subcommittee formed last fall to examine its potential adoption should have recommendations and a final report done before the committee reconvenes in November.

The committee can then promote those recommendations as a template for legislation so that the recommendations come from state health officials rather than originating with “lay people who are not familiar with the science,” Post said.

“There are lots of important issues we need to address before that happens here,” he added.

The committee also will consider whether genomic sequencing would be optional supplemental screening or part of mandatory testing, and how either would be funded.

The technology already is commercially available, making its use an equity issue because low-income parents can’t afford it, committee members said.

The American Civil Liberties Union has objected to the use of genomic sequencing in newborn blood screening programs, raising concerns about police access to blood spot records and the privacy of DNA sequencing data.

If New Jersey adopts genomic sequencing, policymakers must create “a real privacy-protective infrastructure to make sure that genomic data isn’t abused,” said Dillon Reisman, an ACLU-NJ staff attorney.

“What we’re talking about is information from kids that could allow the state and other actors to use that data to monitor and surveil them and their families for the rest of their lives,” Reisman said. “If the goal is the health of children, it does not serve the health of children to have a wild west of genomic data just sitting out there for anyone to abuse.”

Concerns about the privacy of health data drove several New Jersey parents to file a federal class-action lawsuit against the state last fall over New Jersey’s newborn screening program. In that ongoing case, the parents said they did not give informed consent when hospitals pricked their babies’ heels for blood testing and object to the state storing the blood samples — known as blood spots — for 23 years for uses officials refuse to disclose.

The state is now in talks with attorneys from the Institute for Justice, the Virginia-based public-interest law firm that sued, to settle the case. A judge gave both sides until June 4 to file a joint status letter in the case.

Brian Morris, an institute attorney, told the New Jersey Monitor he’s “not as optimistic as we were” that they’ll reach an agreement.

“If we can’t voluntarily come to a resolution about New Jersey making sure its program complies with constitutional requirements, we’re willing and able and excited to have a court do it for them,” Morris said.

On genomic sequencing, he echoed Reisman’s call and demanded robust requirements that ensure parents’ informed consent and protect babies’ Fourth Amendment right to be free of unreasonable searches and seizures.

“Having those constitutional guardrails prevents bureaucrats in Trenton saying: ‘We know what’s best, we’re not even going to ask parents, and we’re just going to go ahead and take this information,’” Morris said.

New Jersey’s newborn blood screening program, which began in 1964, now tests the 100,000 babies born in the Garden State each year for 61 diseases. It’s mandatory, with only families citing religious objections allowed to opt out.

At Tuesday’s meeting, committee members heard a report from Miriam Schachter, program manager at the state’s Newborn Screening Laboratory, who said program representatives are midway through visiting New Jersey’s 45 birthing hospitals to educate them about the program. Their primary goal is to reduce deficiencies in data collection and blood swabbing and ensure samples’ speedy delivery to the lab, she added.

Committee members also heard a researcher’s report on New Jersey’s participation in a pilot program tracking congenital cytomegalovirus, which can lead to lifelong health problems, including hearing or vision loss, seizures, microencephaly, and developmental delays. The newborn blood screening program doesn’t currently test for the condition, but New Jersey got federal funding to track it in infants and children to age 6 to develop public health responses.

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Marijuana products are seen on display at Apothecarium Dispensary in Maplewood, N.J., on April 21, 2022, on the first day of legal recreational marijuana sales in New Jersey. Voters in the state approved the legalization in November 2020. (Michael M. Santiago | Getty Images)

New Jersey’s recreational marijuana sales grew slower in the first quarter of 2024 than they have at any other point since the state began allowing adult-use cannabis sales in April 2022.

The state’s 130 recreational dispensaries had roughly $201 million in non-medical cannabis sales during the first three months of the year, about 4.4% more than they reported in the last quarter of 2023, when recreational sales totaled $192.6 million.

The growth reflects a marked slowdown from the final quarter of 2023, when recreational marijuana sales grew by about 8.9% in what was then the lowest growth quarter on record, and it could herald the end of surging growth the adult-use market has enjoyed since its launch despite persistently high prices.

“There has been a significant increase in the number of dispensaries, which is great, that are selling cannabis products both medically and recreationally, but it is a concern for sure that the market growth rate is slowing,” said Todd Johnson, executive director of the New Jersey Cannabis Trade Association.

The Cannabis Regulatory Commission touted the first quarter sales figures in a press release last week, pointing to the 38% year-over-year growth compared to the first three months of 2023, when recreational sales totaled $145.7 million.

Commission Chair Dianna Houenou said the growth showed consumers moving away from black-market marijuana purchases and toward legally purchased cannabis. But the overwhelming share of that growth — fully 84% of it — happened in the latter three quarters of 2023.

“The significant growth in sales year over year is an indication of the strong potential of New Jersey’s cannabis market,” Jeff Brown, the commission’s executive director, said in a statement. “We anticipate that as even more dispensaries open across the state, new brands are introduced to the market, and cannabis becomes less stigmatized, sales numbers will continue to go up.”

Some cannabis boosters suggested the slowdown was a result of regular business cadence and shifting seasonal demand. Scott Rudder, president of the New Jersey CannaBusiness Association, noted sales typically slow after holiday spending sprees and sales.

“Usually, you see a slower first quarter and then it picks up, for our industry, around 4/20, which kicks into the spring and the summer, and then you kick into the fall with the holidays, so your second, third, and fourth quarters are usually your best quarters,” he said.

A spokesperson for the governor declined to comment and referred queries to the commission.

In a follow-up statement, Brown echoed Rudder, pointing to seasonal trends to explain the decline, also noting recreational sales reached a record high in March. Despite the slowing growth, the $201 million in recreational sales means the first quarter revenue was also record-setting.

“We see other signs of steady growth in New Jersey’s cannabis market, like the pace of new businesses in all the license classes coming into operation,” Brown said. “We believe in the long-term potential of the recreational cannabis industry in New Jersey and remain committed to fostering a robust and equitable cannabis market.”

That revenue rounded out the first year of the state’s legal market, and it’s unclear to what degree the decrease represents a seasonal shift in demand and how much of it can be attributed to a climbdown from explosive growth seen amid the market standup.

None expect the market to reach the staggering 46.3% quarterly growth it enjoyed in the third quarter of 2022, when the market was still only months old, and quarterly growth hovered at or near 10% for all of 2023.

Others pointed to New Jersey’s persistently high cannabis prices to explain the flagging growth, noting prices here are among the nation’s highest.

“The slow growth in the adult-use sales and the diminishing sales on the medical side are no surprise because the prices on the regulated side continue to be, quite frankly, hyper-inflated compared the other states or the legacy market right here in New Jersey,” said Chris Goldstein, a regional organizer for the National Organization for the Reform of Marijuana Laws in New Jersey.

High prices leave New Jersey’s legal market at a competitive disadvantage with black market dealers and synthetic cannabinoids that occupy a legal gray area but have grown more popular since New Jersey legalized recreational marijuana, Johnson said, adding dispensaries had recently taken steps to reduce prices through sales discounts.

Sales in New Jersey’s recreational cannabis market have lagged behind those in some other states with comparably young markets.

Recreational sales in New Jersey totaled $475.3 million in the market’s first 12 months of operation, soaring to $730.8 million in the second full year.

By comparison, Missouri reported more than $1.1 billion in revenue from its first year of recreational sales, and recreational sales in Maryland totaled $512 million over the market’s first nine months.

Both states have roughly two-thirds of New Jersey’s population.

“Missouri did $108.7 million in rec sales alone in March of this year. I think that, given their population versus New Jersey, we have a lot of work to do to figure out why our market is so far behind,” Johnson said.

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New Jersey is among five states that have legalized recreational marijuana but have not banned police officers from consuming cannabis while they're off duty. (Photo by Daniella Heminghaus for the New Jersey Monitor)

Recreational marijuana continues to boom in the Garden State as new dispensaries open every week two years after the industry’s launch.

But on the medical side, patient numbers have steadily dropped since the legalization of recreational cannabis, leaving patients concerned the program is floundering while the state fails to do enough to maintain a robust program for people who depend on marijuana as medicine.

“It’s like they’re not even faking an effort anymore, like feigning interest in saving the program. It just seems like there’s so much more they can do, and I don’t understand why they stopped caring about the medical program,” said Michael Wiehl, a medical marijuana patient and local advocate. “They just did.”

As of April 15, around 80,000 medical patients remain in the state’s medical cannabis program, which began in January 2010. Enrollment peaked in May 2022 at more than 129,000 people, before steadily dropping amid the opening of recreational cannabis stores, according to state data. Sales of medical marijuana have also plummeted, with about $226 million in sales in 2022, compared to $124 million in 2023. And recreational sales brought in over $675 million last year — almost five times as much revenue as medicinal, state data shows.

It was expected medical enrollment would drop once recreational cannabis became more accessible. The rate it’s falling at, though, has medical patients and activists worried. They say doctor’s visits are too expensive and there’s not enough incentive to stay in the program.

But there are some perks to staying in the medical program, like extended hours, reserved parking at dispensaries, better deals, priority sales, tax exemptions, and greater purchase amounts.

Still, patients are voting with their feet by leaving the program behind, and state officials need to find ways to make medical cannabis a “very real part of health care in New Jersey,” said Ken Wolski, director of the Coalition for Medical Marijuana New Jersey.

Officials from the state Cannabis Regulatory Commission say they’re still looking for ways to support the medical market. In an effort to get more patients registered, the agency cut medical card fees to $10 — it cost $200 in 2018 — or patients can get a digital card for free.

Jeff Brown, the CRC’s executive director, said the state’s enrollment drop is on par with what other states have seen, and emphasized the agency’s mission includes “an unwavering commitment to patient access.” The CRC, which oversees the state’s recreational and medical cannabis markets, also pointed to the high out-of-pocket costs for doctor’s visits as a factor for the dropping enrollment.

“Despite what the NJ-CRC has done so far — eliminating registration fee and requiring Alternative Treatment Center to preserve priority access for patients — patients are seemingly leaving the program because they cannot afford the fees they are being charged by some doctors,” Brown said in a statement.

Under the medical marijuana law, known as the Jake Honig Law, doctors must register with the state in order to certify a patient as qualified for medical marijuana under medical conditions that include anxiety, chronic pain, cancer, and migraines. Roughly 1,500 doctors are registered with the state program, and many on the agency’s list are labeled as not taking new patients.

CRC officials say they have no control over the rates doctors set. Brown highlighted legislation passed during the pandemic that made telehealth renewal available to medical marijuana patients. Those services advertise for around $100 to $150. Out-of-pocket payments can be between $150 and $200 a visit, Wolski said, and doctors can ask patients to renew every 90 days or annually.

“We hear from (patients) that the significant obstacles they are facing are centered around costs that are outside the purview of the NJ-CRC: cost associated with the fees charged by doctors to provide authorization forms, and the cost of cannabis and cannabis products,” Brown said.

A 2022 report from Americans for Safe Access, a national cannabis patient advocacy organization, found that it’s a national trend for state medical programs to slow down as a result of recreational laws, but graded New Jersey a C+ on its medical infrastructure, largely based on its lack of a home cultivation program. The report recommended New Jersey lawmakers shift their focus from recreational legalization to “cover the existing gaps in their legal protections for patients in the medical cannabis program.”

Several bills introduced in the Legislature aim to expand insurance coverage to include covering medical marijuana, but none have made it out of committee. One bill would require the CRC to start a program to subsidize 20% of medical cannabis purchased by qualifying patients enrolled in the state Medicaid or NJ FamilyCare programs.

Wiehl also suggested lawmakers introduce a similar program that covers the cost of the doctor’s visits, or changing legislation to allow more doctors to certify marijuana patients. He also would like to see a greater push to cover the cost of medical marijuana, adding that he spends more than $15,000 a year on medical cannabis.

“$1,200 a month and that’s on the cheap side. This is a lot to ask someone to pay for their medicine. If it could get covered by insurance, that’d be great, but if the medical program goes away, that’s never going to happen,” said Wiehl.

And patients have long advocated for a home grow program, which would allow patients to cultivate cannabis plants at home. Both Wolski and Wiehl agreed this would spur more interest in the program. New Jersey is the only state with legalized recreational cannabis where it’s still a felony to grow marijuana plants at home.

Wiehl also suggested other sweeteners such as making high dose edibles and THC drinks limited to medical patients, like the markets in Connecticut and Massachusetts. He stressed that without offering exclusive items, there’s no “reason to be on the medical side.”

Because of benefits like employment protections and states that let out-of-staters with medical cards purchase cannabis, Wolski said he plans to maintain his enrollment and continue advocating for improvements to the medical marijuana program.

But while Wiehl commends the CRC for the work they’ve done to improve medical marijuana space over the last decade, he fears the state’s medical program could “wither away and die.” With 52 of the state’s 125 dispensaries serving medical patients, patients may have no option but to become recreational customers, he said.

The agency “let everyone come in and open up all these rec shops without forcing them into the medical side. You let all this happen, you didn’t do anything to stop it, and now we’re here,” he said. “At this point, let’s just wrap it up and move everything over to the recreational side. It’s backwards, and it leaves a bad taste in my mouth.”

Brown vowed that the agency is not considering shutting down the medical side. Most patients feel satisfied with support from patient services and priorities at medical dispensaries, he said.

“We are reviewing the medicinal cannabis rules and looking for ways we can better serve patients within the purview of Jake Honig Law. We believe in the capacity of cannabis in medical treatment — and Jake Honig’s Law guarantees access for patients in New Jersey,” Brown said.

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Health and Human Services Secretary Xavier Becerra testifies at his 2021 confirmation hearing before the Senate Finance Committee. HHS published a final rule Friday to expand health care access to DACA recipients. (Michael Reynolds-Pool | Getty Images)

WASHINGTON — The Biden administration will publish a final rule Friday that will allow about 100,000 uninsured people in the Deferred Action for Childhood Arrivals program to enroll in state-run or private health insurance plans provided under the Affordable Care Act, administration officials said.

The new rule from the U.S. Department of Health and Human Services could provide an opportunity for those uninsured DACA recipients to enroll in health coverage through a Health Insurance Marketplace plan or a state-run Basic Health Program, also called BHP, in the few states where those plans are available.

“By providing new opportunities for quality, affordable … health care, this rule will give DACA recipients the peace of mind and opportunity that every American deserves,” White House Domestic Policy Advisor Neera Tanden said on a Thursday call with reporters previewing the final rule.

Only two states, Minnesota and New York, operate Basic Health Programs. Oregon is set to become the third this year. The program, created in the Affordable Care Act, allows states to provide affordable health care coverage to low-income people who make too much to qualify for Medicaid. The programs are almost entirely federally funded.

In a statement, President Joe Biden said DACA recipients, often called Dreamers, deserve access to health coverage.

“Dreamers are our loved ones, our nurses, teachers, and small business owners,” Biden said. “And they deserve the promise of health care just like all of us.”

There are about 600,000 DACA recipients who were brought into the country without authorization when they were children. The Obama-era program protects them from removal.

HHS Secretary Xavier Becerra said about one-third of DACA recipients are uninsured.

“DACA recipients are currently three times more likely to be uninsured than the general U.S. population and individuals without health insurance … are less likely to receive preventative or routine health screenings,”  Becerra said on the Thursday call.

November start date

The rule will go into effect Nov. 1, “in order to align with the individual market Open Enrollment Period in most states and allow time for required operational updates,” according to a fact sheet provided by the White House. The move could affect as many as 100,000 DACA recipients, the White House said.

“DACA recipients are no longer excluded from receiving coverage from a quality health plan,” Becerra said.

DACA recipients who qualify to enroll in a Marketplace plan could also qualify for “advance payments of the premium tax credit (APTC) and cost-sharing reductions (CSRs) to reduce the cost of their Marketplace coverage, depending on their income,” according to the fact sheet.

The rule will update the definition of “qualified noncitizen” to receive Medicaid and Children’s Health Insurance Program benefits to clarify the categories of noncitizens who qualify for coverage. The rule will not otherwise change eligibility for those programs for noncitizens.

A senior administration official also noted that most DACA recipients have health care coverage through their employment, but that this rule will catch any recipients who are uninsured. The administration official spoke to reporters on the condition they not be named.

DACA recipients are currently awaiting a court case that is likely to head to the Supreme Court to determine the legality of the program after the Trump administration tried to end it. If the Supreme Court deems the program unlawful, it’s unclear what happens to those in the program.

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Community health worker Ron Sanders, right, helps a patient at San Francisco’s Southeast Family Health Center, part of the Transitions Clinic Network that assists former inmates navigate health care after release. A new policy allows states to provide Medicaid health care coverage to inmates for specific services 30-90 days before their release. (Photo courtesy of Transitions Clinic Network)

A new policy that allows states to provide Medicaid health care coverage to incarcerated people at least a month prior to their release has drawn bipartisan interest and a slew of state applications.

Federal policy has long prohibited Medicaid spending on people who are incarcerated in jails or prisons, except for hospitalization. As a result, when people are released, they typically don’t have health insurance and many struggle to find health care providers and get needed treatment. In a population that is disproportionately likely to have chronic conditions such as heart disease and substance use disorders, that can be deadly.

Some states terminate residents’ Medicaid coverage when they’re incarcerated, while others just suspend it. Either approach can cause delays in seeking health care for people recently released from incarceration, with sometimes disastrous outcomes: A seminal 2007 study found that former prisoners in Washington state were 12 times more likely to die from all causes within two weeks of release, compared with the general population. The leading causes were drug overdoses, cardiovascular disease, homicide and suicide.

Because a disproportionate number of Black, Native and Hispanic people are incarcerated, lowering their death risk after release might reduce racial health disparities in the overall population.

In 2022, about 448,400 people were released from prison, according to the federal Bureau of Justice Statistics.

Under federal guidance released a year ago, states can connect prisoners with case managers 30-90 days before they are released to develop plans based on their health needs. The case manager can help the person make post-release appointments with primary care doctors, mental health counselors, substance use programs, and housing and food assistance.

States that want to extend Medicaid coverage to people in prison or jail must request a federal waiver to do so. At a minimum, participating states must provide case management, medication-assisted treatment for people with substance use disorders and a month’s supply of medication upon release, though states are free to do more.

The Health and Reentry Project, a policy analysis organization focused on health care for former prisoners, called the new policy “groundbreaking.”

“What these waivers enable states to do is build a bridge to access to health care — a bridge that starts before someone’s released and continues after their release,” said Vikki Wachino, executive director of the Health and Reentry Project and a former deputy director of the Centers for Medicare & Medicaid Services.

“It’s about starting the process before they leave prisons and jails, so that they can have stronger connections to health care providers and treatment providers after they leave prison and jail.”

As of last month, federal officials had approved waiver applications from four states — California, Massachusetts, Montana and Washington. Nearly 20 other states, including New Jersey, are waiting for approval, according to health research organization KFF.

Jack Rollins, director of federal policy at the National Association of Medicaid Directors, said states that want to participate are focusing on different incarcerated populations and medical conditions. Some would start with jails, others with state prisons or youth detention facilities. Some states would provide coverage to all inmates, others just to those with a substance use disorder.

Washington, for example, will cover people incarcerated in jails, prisons and youth correctional facilities beginning three months before they are released, an estimated 4,000 people each year. It will connect them to community health workers, bring in doctors and counselors for consultations, and provide lab services and X-rays.

Montana will limit its program to people in state prisons who have a substance use disorder or mental illness and will provide services beginning a month before release. It did not give an estimate of how many people would receive help each year.

California, where an estimated 200,000 people will be covered each year, also included community health workers in its plan. Dr. Shira Shavit, executive director of the Transitions Clinic Network, a California-based national network of clinics focused on formerly incarcerated people, said ex-prisoners are especially well suited for that role.

Shavit said her group consults them on where to locate new clinics and on strategies to reach recently released inmates, because the workers are adept at “knowing where people are when they come out into the community and finding them there.”

Research suggests that connecting recently released people with others who know what it’s like to be incarcerated makes it less likely that they will end up in the emergency room.

“They know how to connect with people, and people trust them, and will follow them to come to clinic and feel comfortable coming,” Shavit said.

Alfonso Apu, director of behavioral health services at Community Medical Centers Inc., a California network of neighborhood health centers that serves patients in San Joaquin, Solano and Yolo counties, said it’s easy to “lose” people once they are released.

“The complexity of these patients is so intense that they are going to need three, four, five hours of encounters with primary care every month, at least,” Apu said.

“Imagine if we had three months to prepare,” he said. “Having a plan of action and even having appointments already scheduled for their needs — it’s going to be game changing.”

Dr. Evan Ashkin is a physician who founded the Formerly Incarcerated Transition Program at the University of North Carolina, a network of community health centers that works with local health departments, clinics and community health workers to connect former inmates with health care. He agreed that employing community health workers who share the experience of previous incarceration is essential.

“I’m hoping we’ll be able to expand this workforce,” Ashkin said. “In our state, North Carolina, there’s not a lot of folks focusing on access to health care for people post-release.”

North Carolina is awaiting word on its application.

Ashkin added that “racial equity issues are really important.”

“We have to have our eyes wide open on the type of services we provide, that they are set up to bring in the communities most impacted,” he said.

Editor’s note: This story has been updated to more accurately describe the Health and Reentry Project.

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Dr. Samuel Cook, a resident at Morehouse School of Medicine in Atlanta, Georgia, testified before the U.S. Senate Committee on Health, Education, Labor and Pensions on May 2, 2024, about the need for more support for HBCU schools of medicine. (Screenshot from U.S. Senate webcast)

WASHINGTON — Doctors on Thursday urged Congress to pass legislation addressing the disproportionately high rates of maternal mortality throughout the country and to lower barriers that have hindered people of color from becoming medical professionals.

During a hearing in the U.S. Senate’s Health, Education, Labor and Pensions Committee, a panel of five medical professionals detailed health disparities for communities of color, including higher rates of maternal mortality.

“Research consistently demonstrates that patients from racial and ethnic minority backgrounds experience better outcomes when treated by health care providers who share their racial and ethnic backgrounds,” said Dr. Yolanda Lawson, president of the National Medical Association and an OBGYN in Texas. “In short, patients can have better health outcomes when their doctors look like them.”

“Yet, Black doctors remain vastly underrepresented,” Lawson added.

Louisiana Republican Sen. Bill Cassidy, ranking member on the committee and a doctor, noted that “African American physicians account for only 8% of all physicians despite comprising 13.6% of the population.”

Cassidy said that reducing maternal mortality has been a top issue for him during his time in Congress and said “it’s important to acknowledge that this issue disproportionately affects African Americans.”

California Democratic Sen. Laphonza Butler testified that the “United States has the highest rate of maternal mortality among high-income nations.”

“Within recent years, thousands of women have lost their lives due to pregnancy-related causes,” Butler said. “And over the past decade, while the birth rate in this country has declined by roughly 20%, maternal mortality rates have steadily risen.”

She implored the committee to debate and approve the so-called Black Maternal Health Momnibus Act, legislation introduced last year by New Jersey Democratic Sen. Senator Cory Booker, Illinois Democratic Rep. Lauren Underwood and North Carolina Democratic Rep. Alma Adams. It currently has 31 co-sponsors in the Senate and 193 in the House.

“This legislation is not just about the life and death of Black women — its enactment will improve birthing outcomes for all women,” Butler said.

HELP Committee Chairman Bernie Sanders, an independent from Vermont, indicated the panel would take up the legislation in the months ahead.

Sanders also said Congress should also look at increasing funding for the Special Supplemental Nutrition Program for Women, Infants, and Children, also known as WIC; increasing class size at Historically Black Colleges and Universities to increase Black representation in the health care workforce; and making medical schools tuition-free to reduce the mountains of student loan debt that can serve as an obstacle to more people of color becoming doctors.

Thursday’s hearing coincided with the Centers for Disease Control and Prevention’s release of new maternal mortality data, showing that 817 women died during 2022 — a decrease from the 1,205 deaths the year before, but roughly in line with the 861 deaths from 2020.

The maternal mortality rate for Black women was 49.5 deaths per 100,000 live births, compared to 19 for white women, 16.9 for Hispanic women and 13.2 for Asian women.

Funding for HBCU medical schools

Dr. Samuel Cook, a resident at Morehouse School of Medicine in Atlanta, Georgia, said during the hearing that medical students of color “sacrifice our physical, mental, spiritual and financial wellbeing to be the change in the medical field we so desperately seek.”

“So now we ardently advocate for the reintroduction of legislation which would specifically fund and protect the growth of HBCU medical schools,” he said.

Cook told the committee that the exorbitant cost of medical school is “the greatest impediment in recruiting Black and brown doctors to our workforce.” He currently holds nearly $400,000 in student loan debt.

Dr. Brian Stone, president of Jasper Urology Associates in Jasper, Alabama, told senators there are “serious challenges” that must be addressed in access to Science, Technology, Engineering and Math, or STEM, education for Black and brown students.

“There’s a wealth of data showing better health outcomes when Black patients have Black physicians. And this applies across different cultures,” Stone said. “This is because when you have cultural connectivity, you have better communication, you have shared experiences and you can overcome the mistrust that has developed over the decades.”

Stone said his home state of Alabama has a population of about 4.8 million people, of whom about 25.8% are Black. “Yet we only have 7% of the physician workforce that’s Black.”

Stone told the committee that there’s a huge need to replace retiring physicians. And he said that making several changes, like providing mentors early and reducing the financial burden, can help to bridge the gap that’s forming.

“Currently, we have about 71,000 physicians retiring per year for the past few years. We only graduated 21,000 medical students per year,” Stone said. “And if you follow the mathematics, you see where we’re going to end up. We’re going to need some very creative ideas to get us out of this situation.”

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