Decades of National Suicide Prevention Policies Haven’t Slowed the Deaths

If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

When Pooja Mehta’s younger brother, Raj, died by suicide at 19 in March 2020, she felt “blindsided.”

Raj’s last text message was to his college lab partner about how to divide homework questions.

“You don’t say you’re going to take questions 1 through 15 if you’re planning to be dead one hour later,” said Mehta, 29, a mental health and suicide prevention advocate in Arlington, Virginia. She had been trained in Mental Health First Aid — a nationwide program that teaches how to identify, understand, and respond to signs of mental illness — yet she said her brother showed no signs of trouble.

Mehta said some people blamed her for Raj’s death because the two were living together during the covid-19 pandemic while Raj was attending classes online. Others said her training should have helped her recognize he was struggling.

But, Mehta said, “we act like we know everything there is to know about suicide prevention. We’ve done a really good job at developing solutions for a part of the problem, but we really don’t know enough.”

Raj’s death came in the midst of decades of unsuccessful attempts to tamp down suicide rates nationwide.

During the past two decades federal officials have launched three national suicide prevention strategies, including one announced in April.

The first strategy, announced in 2001, focused on addressing risk factors for suicide and leaned on a few common interventions.

The next strategy called for developing and implementing standardized protocols to identify and treat people at risk for suicide with follow-up care and the support needed to continue treatment.

The latest strategy builds on previous ones and includes a federal action plan calling for implementation of 200 measures over the next three years, including prioritizing populations disproportionately affected by suicide, such as Black youth and Native Americans and Alaska Natives.

Despite those evolving strategies, from 2001 through 2021 suicide rates increased most years, according to the Centers for Disease Control and Prevention. Provisional data for 2022, the most recent numbers available, shows deaths by suicide grew an additional 3% over the previous year. CDC officials project the final number of suicides in 2022 will be higher.

In the past two decades, suicide rates in rural states such as Alaska, Montana, North Dakota, and Wyoming have been about double those in urban areas, according to the CDC.

Despite those persistently disappointing numbers, mental health experts contend the national strategies aren’t the problem. Instead, they argue, the policies — for many reasons —simply aren’t being funded, adopted, and used. That slow uptake was compounded by the covid-19 pandemic, which had a broad, negative impact on mental health.

A chorus of national experts and government officials agree the strategies simply haven’t been embraced widely, but said even basic tracking of deaths by suicide isn’t universal.

Surveillance data is commonly used to drive health care quality improvement and has been helpful in addressing cancer and heart disease. Yet, it hasn’t been used in the study of behavioral health issues such as suicide, said Michael Schoenbaum, a senior adviser for mental health services, epidemiology, and economics at the National Institute of Mental Health.

“We think about treating behavioral health problems just differently than we think about physical health problems,” Schoenbaum said.

Without accurate statistics, researchers can’t figure out who dies most often by suicide, what prevention strategies are working, and where prevention money is needed most.

Many states and territories don’t allow medical records to be linked to death certificates, Schoenbaum said, but NIMH is collaborating with a handful of other organizations to document this data for the first time in a public report and database due out by the end of the year.

Further hobbling the strategies is the fact that federal and local funding ebbs and flows and some suicide prevention efforts don’t work in some states and localities because of the challenging geography, said Jane Pearson, special adviser on suicide research to the NIMH director.

Wyoming, where a few hundred thousand residents are spread across sprawling, rugged landscape, consistently ranks among the states with the highest suicide rates.

State officials have worked for many years to address the state’s suicide problem, said Kim Deti, a spokesperson for the Wyoming Department of Health.

But deploying services, like mobile crisis units, a core element of the latest national strategy, is difficult in a big, sparsely populated state.

“The work is not stopping but some strategies that make sense in some geographic areas of the country may not make sense for a state with our characteristics,” she said.

Lack of implementation isn’t only a state and local government problem. Despite evidence that screening patients for suicidal thoughts during medical visits helps head off catastrophe, health professionals are not mandated to do so.

Many doctors find suicide screening daunting because they have limited time and insufficient training and because they aren’t comfortable discussing suicide, said Janet Lee, an adolescent medicine specialist and associate professor of pediatrics at the Lewis Katz School of Medicine at Temple University.

“I think it is really scary and kind of astounding to think if something is a matter of life and death how somebody can’t ask about it,” she said.

The use of other measures has also been inconsistent. Crisis intervention services are core to the national strategies, yet many states haven’t built standardized systems.

Besides being fragmented, crisis systems, such as mobile crisis units, can vary from state to state and county to county. Some mobile crisis units use telehealth, some operate 24 hours a day and others 9 to 5, and some use local law enforcement for responses instead of mental health workers.

Similarly, the fledgling 988 Suicide & Crisis Lifeline faces similar, serious problems.

Only 23% of Americans are familiar with 988 and there’s a significant knowledge gap about the situations people should call 988 for, according to a recent poll conducted by the National Alliance on Mental Illness and Ipsos.

Most states, territories, and tribes have also not yet permanently funded 988, which was launched nationwide in July 2022 and has received about $1.5 billion in federal funding, according to the Substance Abuse and Mental Health Services Administration.

Anita Everett, director of the Center for Mental Health Services within SAMHSA, said her agency is running an awareness campaign to promote the system.

Some states, including Colorado, are taking other steps. There, state officials installed financial incentives for implementing suicide prevention efforts, among other patient safety measures, through the state’s Hospital Quality Incentive Payment Program. The program hands out about $150 million a year to hospitals for good performance. In the last year, 66 hospitals improved their care for patients experiencing suicidality, according to Lena Heilmann, director of the Office of Suicide Prevention at the Colorado Department of Public Health and Environment.

Experts hope other states will follow Colorado’s lead.

And despite the slow movement, Mehta sees bright spots in the latest strategy and action plan.

Although it is too late to save Raj, “addressing the social drivers of mental health and suicide and investing in spaces for people to go to get help well before a crisis gives me hope,” Mehta said.

Cheryl Platzman Weinstock’s reporting is supported by a grant from the National Institute for Health Care Management Foundation.

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Forget Repeal and Replace. The Next Big ACA Fight Will Be Over Subsidies.

Forget repeal and replace. Critics of the Affordable Care Act, a.k.a. Obamacare, have a new target: key parts of the law that they say are too costly and provide incentive for fraud.

Topping that list are the ACA’s enhanced subsidies, put in place during the coronavirus pandemic as part of economic recovery legislation and set to expire next year unless Congress acts. The subsidies are credited with enabling more low-income people to qualify for zero-premium coverage and helping boost enrollment to record levels.

If the subsidies expire, millions of Americans will probably see premiums go up, according to a report from KFF. And the Congressional Budget Office (CBO) says the end of the enhanced subsidies could cause ACA enrollment to fall from a projected 22.8 million in 2025 to 18.9 million in 2026.

But the subsidies cost a lot. The CBO recently estimated that making them permanent would add $335 billion to the budget deficit over 10 years, and some Republicans have said that’s simply too much.

Now the subsidies are part of a larger debate about ACA fraud and enrollment schemes.

At issue is whether people are over- or understating their incomes to qualify for the subsidies. In addition, some lawmakers are concerned about reports that consumers are being enrolled in ACA plans or their coverage is being switched — without their consent — by a subset of unscrupulous brokers eager to gain commissions.

House GOP leaders have called on two watchdog agencies to investigate, while Sen. Chuck Grassley (R-Iowa) fired off accountability questions in a recent letter to the Centers for Medicare and Medicaid Services.

The Republican outcry — particularly aimed at the subsidies — goes hand in hand with a controversial recent report from a conservative think tank estimating that millions of people or their brokers may be misstating their incomes to qualify for ACA subsidies.

Still, the enhanced subsidies are unlikely to become talking points in either party’s presidential campaigns.

“It’s too complicated,” said Debbie Curtis, a vice president at consultancy McDermott+. “I see what’s happening right now as laying the groundwork for the big fight next year.”

Any debate about the enhanced subsidies is likely to draw in other issues — including the Trump-era tax cuts, whose extension would add an estimated $4.6 trillion to the deficit over 10 years — and must be addressed next year. Other aspects of the ACA are also potentially in play, including a special year-round enrollment period for low-income consumers and whether zero-premium plans will still be available for that group.

“The fate of the enhanced tax credits is dependent on the Democrats holding some majority in Congress and/or winning the presidency and is also tied inextricably to the Trump tax cut expiration,” said Dean Rosen, a partner at Mehlman Consulting and a former senior Republican congressional staffer. That’s because both sides have incentive to extend all or part of the tax cuts, but each will want some kind of compromise on other issues as well.

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US Uninsured Rate Was Stable in 2023, Even as States’ Medicaid Purge Began

The proportion of Americans without health insurance remained stable in 2023, the Census Bureau reported Tuesday, close to the record low the Biden administration achieved in 2022 through expansions of public programs, including the Affordable Care Act.

About 8% of Americans were uninsured, a statistically insignificant increase of just 0.1 percentage point from a year earlier. But because of the Census survey’s methodology, the findings likely don’t capture the experience of tens of millions of Americans purged from Medicaid rolls after pandemic-era protections expired in spring 2023.

Enrollment in Medicaid, the government health program for people with low incomes and disabilities, reached its highest level in April 2023. That was just before what’s called the “unwinding,” the process states have used to disenroll people from the program after the federal government lifted a prohibition on culling enrollment.

It isn’t yet clear what effect the unwinding has had on insurance coverage, but the Census Bureau will release additional data on Thursday from a different survey that may refine the numbers.

“We are likely at a turning point,” said Leighton Ku, director of the Center for Health Policy Research at George Washington University. “We are about to change to a new season where things will be a little worse off from Medicaid unwinding.”

The Medicaid unwinding has been completed in most states, and more than 25 million people have been disenrolled, according to KFF, a health information nonprofit that includes KFF Health News. The Census report, based on surveys conducted early this year, counts people as uninsured only if they lacked insurance for all of 2023. So, for example, a person who was on Medicaid in April 2023 before the unwinding began then lost coverage and never regained it would nonetheless be counted as insured for the entire year.

Many people purged from Medicaid were successfully reenrolled in or obtained other insurance, such as Affordable Care Act marketplace or job-based coverage. Others remained uninsured.

Advocates have feared the unwinding would trigger a rise in the uninsured rate as people struggled to find alternative coverage.

But states, private health insurers, and advocates launched intense efforts to contact enrollees by phone, email, and social media to ensure they did not experience gaps in coverage.

Still, because of the way the Census Bureau reports the uninsured rate, the full impact of the unwinding won’t be known until the 2026 report.

Beyond Medicaid, several other factors boosted the number of Americans with health insurance last year, including a strong economy and near-record-low unemployment. Most Americans obtain insurance through their jobs, according to the Census, meaning that higher employment typically results in broader health coverage.

Another key factor: enhanced federal subsidies that since 2021 helped lower the cost of private coverage through Obamacare. Sign-ups on Affordable Care Act marketplaces hit a record high of 20.8 million in 2024, according to a Treasury report released Tuesday.

But that extra financial assistance is slated to expire at the end of 2025, setting up a flashpoint for whichever party controls power in Washington after the November elections. Democrats want to extend the subsidies introduced during the pandemic, while many Republicans wish to let them end.

Before Congress passed the ACA in 2010, the uninsured rate had been in double digits for decades. The rate fell steadily under President Barack Obama but reversed under President Donald Trump, only to come down again under President Joe Biden.

In addition to expanding subsidies, the Biden administration increased advertising and the number of counselors who help people sign up for plans during the open enrollment season, which Trump greatly curtailed.

Also contributing to the reduction in the number of uninsured Americans are state efforts to expand coverage to mostly low-income residents. North Carolina, for example, expanded Medicaid eligibility in December 2023, resulting in more than 500,000 additional enrollees.

Decades of research shows that expanded health coverage helps people individually and the public overall. Health insurance pays for routine care and can protect people from financial calamity because of severe injuries or illness.

People who are uninsured are more likely to delay or avoid getting health care, which can lead to relatively minor problems becoming more severe and costly to treat. Having more people covered also means more patients can pay their bills, which can improve the financial condition of hospitals and other providers.

The health insurance data released annually by the Census Bureau is considered the most accurate picture of health coverage in the United States. The state-level uninsured data it plans to release Thursday, based on a larger survey, counts people as uninsured if they say they don’t have coverage at the time they’re contacted. Thus, it likely will provide more insight into the effects of the unwinding.

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Del auge a la caída: falta de dinero y despidos golpean a la salud pública

Durante la pandemia, los recursos federales se orientaron a reforzar los presupuestos de los estados para que pudieran responder a la emergencia por covid-19. Sin embargo, ya desde entonces, las autoridades de salud pública advirtieron que se avecinaba un inminente ciclo de auge y debacle en el financiamiento. Anticiparon que la crisis se presentaría cuando terminara la emergencia y, por ende, las subvenciones federales.

Ahora, esa escasez se ha convertido en realidad, y los gobiernos estatales están destinando menos recursos a los departamentos de salud locales.

Ante la pandemia, el Congreso asignó más de $800 mil millones para fortalecer la respuesta de los estados ante covid. Esto resultó en un notable aumento del número de trabajadores de salud pública en todo el país.

El personal de las áreas de salud locales creció alrededor del 19% entre 2019 y 2022, según un informe de la Asociación Nacional de Funcionarios de Salud de Condados y Ciudades que analizó 2,512 de los aproximadamente 3,300 departamentos locales en todo el país.

Ese mismo informe explicaba que, en 2022, la mitad de los ingresos de las oficinas de salud pública regionales provino de fuentes federales.

Pero, a medida que desaparece el dinero, esos puestos de trabajo y la red de apoyo que brinda a las comunidades que atienden se vuelven más frágiles.

Esta situación genera una gran preocupación en los responsables de la salud pública, especialmente en las zonas rurales escasamente pobladas, donde ya se trabaja con pocos recursos, arrastrando disparidades de larga data en la atención de la salud.

En estados como Montana, California, Washington y Texas, los funcionarios enfrentan restricciones presupuestarias y despidos. Expertos en salud pública advierten que los recortes en servicios como el rastreo de contactos, los programas de vacunación, la planificación familiar, las inspecciones de restaurantes y otros podrían poner a las comunidades en situaciones de crisis

En California, el gobernador demócrata Gavin Newsom propuso recortar $300 millones de los fondos para la salud pública. El Departamento de Salud de Washington eliminó más de 350 puestos de trabajo a finales del año pasado, y planea recortar otros 349 este año, a medida que se agotan los fondos federales para covid que recibió el estado.

“No se pueden contratar bomberos cuando la casa ya está ardiendo”, afirmó Brian Castrucci, presidente y director ejecutivo de la Fundación Beaumont, una organización que promueve las políticas de salud pública.

En algunos lugares, el dinero recibido durante la pandemia hizo poco más que mantener a flote los pequeños departamentos de salud. El Distrito Sanitario Central de Montana, una agencia de salud pública que cubre cinco condados rurales, no recibió la misma cantidad de dinero que otros, pero sí lo suficiente como para que el personal pudiera responder a una mayor carga de trabajo, incluyendo testeos, rastreo de contactos y distribución de vacunas contra covid.

El departamento cubrió una vacante con una subvención federal canalizada a través del estado cuando, durante la pandemia, un miembro del personal renunció a su trabajo. La financiación federal permitió que el departamento llegara a un punto de equilibrio, dijo Susan Woods, directora de salud pública del distrito.

Ahora, el distrito tiene cinco empleados a tiempo completo. Woods explicó que el equipo está gestionando con recursos limitados y que otra emergencia de salud pública podría desestabilizar a situación.

“Cualquier tipo de crisis, cualquier nueva pandemia, Dios no lo quiera, probablemente nos haría colapsar”, advirtió Woods.

Adriane Casalotti, jefa de asuntos públicos y gubernamentales de la Asociación Nacional de Funcionarios de Salud de Condados y Ciudades, admitió que es posible que haya más despidos y recortes de dinero.

Esos recortes se producen mientras los funcionarios de salud están tratando de resolver cuestiones muy importantes que quedaron relegadas durante la pandemia, como el aumento de las tasas de enfermedades de transmisión sexual, suicidios y adicciones.

“Hay mucho por hacer para enfrentar estos otros problemas de salud pública que quedaron en un segundo plano”, explicó. Pero será difícil ponerse al día si los recursos de los que se dispone son cada vez más escasos.

Entre 2018 y 2022, los informes mostraron un significativo incremento de las enfermedades de transmisión sexual. Por ejemplo, la clamidia, la gonorrea, la sífilis y la sífilis congénita aumentaron casi un 2% en todo el país, sumando más de 2,5 millones de casos.

Un informe reciente del KFF reveló que las tasas de vacunación en niños de edad preescolar no han recuperado los niveles anteriores a la pandemia. Y aumentó el número de familias que solicitan que se excuse a sus hijos de los programas de vacunación.

Casi tres cuartas partes de los estados no alcanzaron la tasa del 95% de vacunación contra el sarampión, las paperas y la rubéola propuesta por el gobierno federal para el año escolar 2022-23. Este déficit aumenta el riesgo de brotes.

En medio de estos desafíos, las autoridades de salud pública se aferran a los recursos obtenidos durante los últimos años.

El distrito sanitario de Lubbock, Texas, una ciudad de más de 250.000 habitantes situada en el Panhandle del estado, contrató durante la pandemia a cuatro especialistas en enfermedades de transmisión sexual gracias a una subvención por cinco años otorgada por los Centros para el Control y la Prevención de Enfermedades (CDC).

Esos puestos se han creado debido a que los casos de sífilis en Texas se han disparado por encima de los niveles registrados en la última década y, según los CDC, el aumento de la sífilis congénita superó la media nacional.

En 2022, los registros oficiales detectaron 922 casos de sífilis congénita, con una tasa de 246,8 por cada 100.000 nacidos vivos.

Pero los funcionarios federales, que están expuestos a su propia reducción presupuestaria, recortaron la subvención dos años antes de lo previsto. Esto dejó al distrito luchando por subsanar un déficit presupuestario anual de casi $ 400,000 mientras trabajaban para controlar el brote.

“Incluso cuando se recibe financiamiento es muy difícil para el personal de salud sostener el seguimiento de los casos ya detectados y asegurarse de que todos reciben tratamiento”, dijo Katherine Wells, directora de salud pública de Lubbock.

Wells comentó que es probable que, en diciembre, cuando la subvención termine, los funcionarios estatales reorienten otros aportes federales para mantener el programa en marcha.

“Si tendremos o no éxito en un estado como Texas es algo muy incierto”, admitió Wells. Y subrayó que tanto ella como otras autoridades sanitarias solicitan constantemente más recursos a los funcionarios estatales.

El desafío es que se considere la salud pública como una prioridad aunque no exista una emergencia nacional, opinó Castrucci. “El ciclo de auge y caída de la financiación es un reflejo de la atención del público estadounidense”, agregó. Y explicó que a medida que se extinguió la emergencia por covid también se apagó el entusiasmo por las cuestiones de salud pública.

Los departamentos de salud rurales, como el del centro de Montana, merecen más atención, aseguró Casalotti, defensora de los agentes de salud de condados y ciudades. Porque esos departamentos desempeñan una función esencial en comunidades que siguen sufriendo el cierre de hospitales y la pérdida de muchos servicios de salud, como los de maternidad y atención a la mujer.

Los departamentos de salud locales pueden funcionar como una “red de apoyo para la red de apoyo más amplia”, afirmó.

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Harris and Trump Are Ready To Take on Big Pharma

Former president Donald Trump and Vice President Kamala Harris are both eager to take on high drug prices, leaving pharmaceutical companies on the defensive as they spend millions of dollars this election season.

When Harris was California’s attorney general, she joined cases that resulted in almost $7.2 billion (about $22 per person in the United States) in fines for drug companies. In that role, she was an aggressive regulator of the drug industry. In her current position, she cast the tiebreaking Senate vote in 2022 for legislation that allows Medicare to negotiate drug prices for its more than 60 million beneficiaries.

As president, Trump also was willing to challenge GOP orthodoxy by taking action to combat high drug costs. His administration sought to lower the prices Medicare pays for drugs through a proposal that the PwC Health Research Institute estimated would cost five drugmakers as much as $500 million a year. What was known as the “most favored nation” interim final rule was blocked because of legal challenges and rescinded by the Biden administration.

In addition, Trump issued a rule setting up a path to import drugs from Canada and other countries, with Florida this year becoming the first state to get federal approval to do so.

If elected, the Harris-Walz ticket appears more likely to be successful on drug pricing than Trump, whose policies were more disjointed, said Sergio Jose Gutierrez, a political strategist who has worked primarily with Democrats.

“His efforts were largely fragmented and faced resistance from both the industry and lawmakers,” Gutierrez said.For example, he said Trump promoted the executive order on international prices to tie certain Medicare drug costs to their prices overseas. But the final rule spurred four industry lawsuits and never went into effect.

The Biden administration successfully implemented a strategy of negotiating prices for top-selling Medicare drugs, even as lawsuits have been filed to stop the program.

Another shift in the pharmaceutical industry is emerging in its political contributions. An industry that gave three or four times as much to GOP candidates as to Democrats in the 1990s and early 2000s is now hedging its bets. So far in the 2024 cycle, drug companies have given $4.89 million to Democrats and $4.35 million to Republicans, according to OpenSecrets, a nonpartisan research group.

Harris has received $518,571 from the industry, and Trump has received $204,748.

Catherine Hill, a spokeswoman for Pharmaceutical Research and Manufacturers of America, or PhRMA, said the industry trade group looks forward to collaborating with any future presidential administration.

She criticized the Biden administration’s plan for Medicare price negotiation and Trump’s plan to align U.S. prices with those in foreign countries. Last month, the Biden administration announced new, reduced prices for 10 drugs in the program following negotiations between the federal government and drugmakers. The lower costs take effect in 2026.

“Previous price controls adopted by the Biden administration threaten to stifle that innovation,” Hill said. “Undermining intellectual property protections and borrowing other countries’ price controls will further undercut innovation and threaten patients’ access to medicine.”

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ACA Enrollment Platforms Suspended Over Alleged Foreign Access to Consumer Data

Suspicions that U.S. consumers’ personal information could be accessed from India led regulators to abruptly bar two large private sector enrollment websites from accessing the Affordable Care Act marketplace in August.

New details about the suspensions come in legal filings made late Friday stemming from an effort by the two to regain access to the Obamacare marketplace before the upcoming ACA open enrollment period, which starts Nov. 1.

The Centers for Medicare & Medicaid Services wrote in a Sept. 2 letter to the companies that they were suspended after the agency identified “a serious lapse in the security posture” that could have led to marketplace data, including consumers’ personal information, being accessed from overseas.

The letter, included in the court filings, also noted that regulators will audit the two companies because they have “reasonable suspicion” that they are players in a separate problem: signing people up for Obamacare coverage — or changing their policies — without the consumers’ permission.

Whether those legal issues will be resolved before the upcoming enrollment period is an open question. Currently, the concerns raised about the companies remain allegations, with none of the legal challenges or the audit close to a ruling or conclusion.

Still, the larger issue of fraudulent ACA enrollment by rogue insurance agents seeking commissions will continue to pose a headache for regulators, with more than 200,000 complaints filed by consumers in the first six months of 2024. And it has become a political problem for the Biden administration. GOP lawmakers blamed the schemes partly on Biden-backed expanded Obamacare premium subsidies.

President Joe Biden has claimed record-breaking enrollment under the ACA as one of his administration’s major accomplishments, and regulators are looking to thwart deceptive enrollment schemes without slowing legitimate sign-ups. In recent weeks they’ve removed at least 200 agents’ access to the federal ACA marketplace, and in July began requiring, in many circumstances, that brokers participate in three-way calls with their clients and the healthcare.gov help center before changes can be finalized.

The CMS letter now adds another layer. It is the first time this year the agency has called out a company over questionable enrollments, saying it suspects “the Speridian Companies” might have “directed its employees and other agents to change Marketplace enrollees’ coverage and enroll insured and uninsured consumers without the enrollees’ consent.”

California-based Speridian Global Holdings owns the companies in question, which include enrollment platform Benefitalign and TrueCoverage, doing business as the Inshura enrollment site. It has a data center in India.

The now-suspended Benefitalign site handled at least 1.2 million applications for ACA coverage during the last open enrollment period, according to court documents, which would rank it among the largest of the private enrollment sites allowed to integrate with healthcare.gov, the federal marketplace.

Previously, CMS had said publicly only that it suspended the websites for “anomalous activity.”

The suspended companies deny any wrongdoing related to enrollment schemes. Spokesperson Catherine Riedel declined comment beyond their court filings.

In late August they filed a complaint against CMS over the suspensions in U.S. District Court for the District of Columbia, seeking a restraining order. They added to that complaint on Sept. 6, calling CMS’ suspension action “lawless.”

On Aug. 8, CMS suspended the two websites from accessing healthcare.gov information.

It did so, according to the Sept. 2 letter, over concerns that some consumer information “is processed and/or stored” in India, citing “suspicions” that the data is “being accessed from outside of the United States.”

That’s a problem, the letter says, because marketplace data must stay in the U.S. to “eliminate the possibility that foreign powers might obtain access.” Additionally, websites approved by CMS to integrate with the federal marketplace cannot transmit data outside of the U.S. or allow access from outside the country, under the terms of agreements such companies sign to get CMS approval to operate.

CMS did not spell out what consumer information might have been included, but ACA applications can contain information including a person’s name, date of birth, address, and detailed household income information.

Speridian companies were suspended, then reinstated, from the marketplace in prior years over other concerns, including problems with false Social Security Numbers submitted with some TrueCoverage ACA applications in 2018, and for a 2023 effort by Benefitalign to access the federal marketplace’s “software testing environment” from India, according to the CMS letter.

In seeking a restraining order against CMS, the companies argue that the agency’s action to suspend them now is arbitrary and capricious and violates its own regulations as well as the due process clause of the Constitution.

The filing calls the Sept. 2 CMS letter explaining the reasons for the suspensions “a post hoc justification” that includes a litany of “‘concerns,’ suspicions,’ ‘allegations.’” The filing also asserts “these intimations of violations are made without evidence of any actual violation.”

The court documents say the suspensions will prevent the companies from participating in the upcoming open enrollment period, harming them and “the thousands of brokers” and “millions of consumers who count on brokers” using those websites to sign up for ACA coverage.

The suspension remains in place, the CMS letter says, partly because its concerns have not been allayed by information provided by the companies, but also while the audit is conducted.

CMS has “reasonable suspicion, based on credible evidence it has considered,” that the companies were involved in enrolling consumers or changing their coverage without specific permission, the letter stated, noting that such allegations are included in a civil lawsuit filed by private sector lawyers in U.S. District Court for the Southern District of Florida.

The firms have previously said the allegations in the civil lawsuit are without merit.

Brokers who have used the suspended websites in the past have other options to enroll clients, including several other websites currently approved to integrate with the federal Obamacare marketplace. Consumers can also go directly to the federal or state ACA websites and enroll themselves or get assistance from call centers associated with those marketplaces.

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With TV Drug Ads, What You See Is Not Necessarily What You Get

Triumphant music plays as cancer patients go camping, do some gardening, and watch fireworks in ads for Opdivo+Yervoy, a combination of immunotherapies to treat metastatic melanoma and lung cancer. Ads for Skyrizi, a medicine to treat plaque psoriasis and other illnesses, show patients snorkeling and riding bikes — flashing their rash-free elbows. People with Type 2 diabetes dance and sing around their office carrels, tipping their hats to Jardiance. Drugs now come with celebrity endorsements: Wouldn’t you want the migraine treatment endorsed by Lady Gaga, Nurtec ODT?

Drug ads have been ubiquitous on TV since the late 1990s and have spilled onto the internet and social media. The United States and New Zealand are the only countries that legally allow direct-to-consumer pharmaceutical advertising. (The European Union was furious when Lady Gaga’s Instagram post promoting the migraine drug was visible on the continent, noting it flagrantly violated its ban on direct-to-consumer advertising.)

Manufacturers have spent more than $1 billion a month on ads in recent years. Last year, three of the top five spenders on TV advertising were drug companies.

Such promotion was banned until 1997, when the FDA reluctantly allowed pharmaceutical ads on TV, so long as they gave an accurate accounting of a medicine’s true benefits and risks, including a list of potential side effects.

With those guardrails in place, few thought advertising would take hold. But the FDA underestimated the wiliness of the pharmaceutical industry, which invented a new art form: finding ways to make their wares seem like joyous must-have treatments, while often minimizing lackluster efficacy and risks.

A 2023 study found that, among top-selling drugs, those with the lowest levels of added benefit tended to spend more on advertising to patients than doctors. “I worry that direct-to-consumer advertising can be used to drive demand for marginally effective drugs or for drugs with more affordable or more cost-effective alternatives,” the study’s author, Michael DiStefano, a professor of clinical pharmacology at the University of Colorado, said in an email.

Indeed, more than 50% of what Medicare spent on drugs from 2016 through 2018 was for drugs that were advertised. Half of the 10 drugs that the Joe Biden-Kamala Harris administration targeted for drug price negotiation this year are among the drugs with the largest direct-to-consumer ad spend.

The government has, in recent years, tried to ensure that prescription-drug advertising gives a more accurate and easily understood picture of benefits and harms. But the results have been disappointing. When President Donald Trump’s administration tried to get drugmakers to list the price of any treatments costing over $35 on TV ads, for example, the industry took it to federal court, saying the mandate violated drugmakers’ First Amendment rights. Big Pharma won.

Last November, the FDA issued requirements that ads give consumers a “non-misleading net impression about the advertised drug.” The agency stated that information had to be presented in a “clear, conspicuous, and neutral manner.” Ads must avoid “audio or visual elements that might interfere with the consumer’s understanding” and “text information is presented in a way that is easy to read.”

But the language is disappointingly vague: What do “neutral” and “non-misleading” mean? Do the proscribed audio-visual elements include people hiking, or dancing to upbeat music? How quickly or slowly can the chyrons listing adverse reactions scurry across your screen? There is no FDA police force to decide how the language should be interpreted.

I asked the agency for an interview to get some clarity on its plans, but instead got a three-page email that, well, left me worrying that the blizzard of drug ads is here to stay.

It told me that ads are not vetted before airing unless the manufacturers voluntarily submit them because it is “the drugmakers’ responsibility to make sure they comply.” How do they catch ads that are noncompliant? Often, via consumer complaints, or when an agency staff member sees a booth with misleading information at a conference, the email said.

Within the FDA’s watchdog arm, the Advertising and Promotional Labeling Branch, “there are currently nine full-time employees, and a small percentage of their work includes review of DTC promotional communications, as well as other activities,” according to the agency email. If ads are determined to be noncompliant, the FDA can notify the manufacturer by sending it an “untitled or warning letter.” From 2019 to 2024, it sent a total of just 32.

The FDA launched the Bad Ad Program to help physicians recognize false and misleading promotions directed toward them. It created a one-hour course with case studies, and gave doctors an easy way to report abuse, by calling 855-RX-BADAD. But it’s too early to say whether doctors, who dislike such ads too, will use the hotline, and the agency is woefully understaffed to monitor it. 

The FDA has set up a parallel site aiming to teach consumers to better discern whether an ad follows the rules, and to help them discern if a medicine is “right for you.” That, however, requires medical knowledge that most people don’t have.

The Federal Trade Commission, which oversees ads in other sectors — from banking to contact lenses — is more active in suing to halt those it considers deceptive or misleading. In recent years, it sued to prevent unsupported claims on stem cell treatments for arthritis and false or misleading information about some health insurance plans. But it has no jurisdiction over direct-to-consumer drug advertising, a commission spokesperson said.

In a long-ago era when cures were mostly sold by “snake oil” salespeople, the 19th-century psychologist William James derided “the medical advertisement abomination” and wrote that “the authors of these advertisements should be treated as public enemies and have no mercy shown.” As scientific understanding has matured, and today’s drugs have alleviated suffering and even saved lives, a more nuanced approach is, of course, in order.

Common sense and the sort of truth-in-advertising standard we apply in other sectors could be a suitable first step. Take ads that promise patients with advanced cancers “a chance to live longer.” A more truthful ad might say that studies are equivocal or, as the widower of one patient drawn in by an ad wrote in an op-ed article: “an outside chance for people with advanced lung cancer to live just a few months longer.” And they’re not likely to be hiking or hitting the beach during that time.

With a bit of commonsense, truth-in-advertising enforcement, many of the ads would disappear. The FDA email informed me that it is working with the Duke-Margolis Institute for Health Policy and others to help “further develop” its policy and guidance documents.

Gerard Anderson, a professor of health policy at Johns Hopkins University’s Bloomberg School of Public Health, proposes that, at the very least, drug ads should be required to feature prominent warnings about risks, like those on cigarette packs. “If you see it on TV or on social media, it’s probably not as good as something else,” he added. Or at least more expensive.

Remember that media ads for cigarettes were ubiquitous before they were banned by a congressional act, which took effect in 1971, because they were found to promote a dangerous product. Yes, it’s a harder case to make with advertising for pharmaceuticals, some of which harm many people with their side effects (and costs) but certainly can help some a great deal.

But, as I watched the Democratic National Convention last month, I thought: Couldn’t someone in politics make these endless drug ads disappear, as has occurred in nearly every other developed country? Companies prodding patients to “ask your doctor” for drugs that they may not need isn’t just about truth in advertising or breaking government and personal budgets. It is an issue of public health.

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Errors in Deloitte-Run Medicaid Systems Can Cost Millions and Take Years To Fix

The computer systems run by the consulting giant Deloitte that millions of Americans rely on for Medicaid and other government benefits are prone to errors that can take years and hundreds of millions of dollars to update. While states wait for fixes from Deloitte, beneficiaries risk losing access to health care and food.

Changes needed to fix Deloitte-run eligibility systems often pile on costs to the government that are much higher than the original contracts, which can slow the process of fixing errors.

It has become a big problem across the country. Twenty-five states have awarded Deloitte contracts for eligibility systems, giving the company a stronghold in a lucrative segment of the government benefits business. The agreements, in which the company commits to design, develop, implement, or operate state-owned systems, are worth at least $6 billion, dwarfing any of its competitors, a KFF Health News investigation found.

Problems and delays can extend beyond Medicaid — which provides health coverage to roughly 75 million low-income people — because some state systems assess eligibility for other safety-net programs. Whether a person gets the benefits they are entitled to depends on what the computer says.

There is no automatic switch to stop errors in the system, said Elizabeth Edwards, a senior attorney with the National Health Law Program, a nonprofit that advocates for people with low incomes and medically underserved populations. The group in January filed a complaint urging the Federal Trade Commission to investigate Deloitte, alleging “ongoing and nationwide” errors and “unfair and deceptive trade practices.”

“People will go without care,” Edwards said, and until there’s a fix or a workaround, “you will continue to have the harm over and over again.”

Kenneth Smith, a Deloitte executive who leads its national human services division, previously told KFF Health News that Medicaid eligibility technology is state-owned and agencies “direct their operation” and “make decisions about the policies and processes that they implement.” Smith has called the legal nonprofit’s allegations “without merit.”

States set aside millions of dollars to cover the cost of changes, but systems may require fixes beyond the agreed-upon work. The number of hours or updates is capped each year, so states are left to prioritize certain fixes over others. And even though Deloitte isn’t reinventing the wheel for each eligibility system it builds or runs, the company addresses problems state by state rather than patching through fixes for systems across states, Smith said — a change request in one state “likely has absolutely nothing to do with another state.”

“Because of the custom nature of these systems, it’s never quite that simplistic as, ‘Hey, a particular issue that’s arisen in state of A is directly applicable to state of B,’” Smith said.

Speaking generally, Smith said, “I’m unaware of any circumstance in which a client has needed to get something done that we haven’t found a way to get it done.”

The work is lucrative for Deloitte, which reported global revenue of $65 billion in fiscal year 2023.

Deloitte’s estimates show that 35 change requests for Georgia’s eligibility system in 2023 would take more than 104,000 hours of work, according to a list of change requests that KFF Health News obtained in response to a public records request. That’s the equivalent of 50 years of work, if someone worked 52 weeks a year at 40 hours a week.

“System changes were made to align with changing federal and state policies, as well as to meet evolving business needs," said Ellen Brown, a spokesperson for the Georgia Department of Human Services. Brown earlier said changes also were made to “improve functionality.”

The federal government — that is, its taxpayers — covers 90% of states’ costs to develop and implement state Medicaid eligibility systems and pays 75% of ongoing maintenance and operations expenses, according to federal regulations.

Eligibility systems for years have posed problems for states because of the dynamic between contractors and government officials, said Matt Salo, CEO of consulting firm Salo Health Strategies. The companies hold the expertise “and, quite frankly, they’re kind of running circles around the state capacity,” said Salo, a former executive director of the National Association of Medicaid Directors.

“For decades all I’ve heard from states in this arena is: We know that when we go out to contract it’s going to cost us a lot of money and it is going to run over, it is going to deliver years late, it is going to deliver millions if not hundreds of millions of dollars over budget,” Salo said, and “by the time it’s delivered, our needs have changed and so it’s just this constant process of change orders and going back and fixing.”

Going to Court in Florida

Two advocacy groups last August sued Florida in federal court, alleging tens of thousands of people were losing coverage without proper warning. And Florida’s eligibility system was cutting off Medicaid coverage for some moms after giving birth, William Roberts, a state employee who reviews Medicaid eligibility decisions, testified when the case went to trial in July.

Florida previously gave moms two months of Medicaid coverage after giving birth. Federal regulators in 2022 approved Florida’s proposal to grant Medicaid benefits for 12 months. But in April 2023 state officials discovered a “glitch,” Roberts said, and “the system had reverted back to only giving mothers two months instead of giving them the 12 months that they were entitled to.”

What became clear in the testimony is that the state and Deloitte take different views on what constitutes a “defect” in a Deloitte-run system. Deloitte said it would fix defects without billing any additional hours for the work. Although Deloitte is not a named defendant in the lawsuit, the company was called to testify about its role in operating Florida’s eligibility system.

Harikumar Kallumkal, a Deloitte managing director who oversees the Florida system, initially testified that, in this case, there was no problem and “the computer system was providing 12 months” of postpartum coverage.

Then Kallumkal said, “Even in this case, I do not believe it was a defect.” Even so, “we did fix that.” And for the fix, he said, Deloitte “did not charge” the state.

Rather, a separate defect may have resulted in coverage losses for mothers after childbirth, Kallumkal testified.

Some historical data “required to determine postpartum coverage” was not loading into the system, Kallumkal said. “I don’t know how many cases it impacted,” he said, but Deloitte fixed the problem.

The courtroom revelation confirmed what Florida advocates already knew: an eligibility system issue prevented some of the state’s most vulnerable from getting care. Florida denied allegations that it terminated Medicaid coverage without providing adequate notice. The case is ongoing.

When Michigan resumed regular Medicaid eligibility checks following the covid-19 pandemic, advocates saw a concerning trend.

The computer system routinely fails to recognize when certain adults with disabilities should receive Medicaid benefits, said Dawn Calnen, executive director of The Arc of Oakland County, which provides support for those with intellectual and developmental disabilities.

Often a person who qualifies for Medicaid initially for one reason could remain eligible even when life circumstances change. Calnen said there’s no question that the people her group assisted are still eligible, just in a different way than during the pandemic.

The problem is frequent enough that Calnen’s group felt compelled to notify others. “We kind of shout it from the rooftop for people: Know that this is going to happen.”

When asked about the problem, Chelsea Wuth, a spokesperson for Michigan’s Department of Health and Human Services, said there were “no issues” with the system. Deloitte operates Michigan’s eligibility system. The company said it does not comment on state-specific issues.

Tennessee hired Deloitte in 2016 to build an eligibility system after the state canceled a contract with Northrop Grumman due to chronic delays. Deloitte didn’t create the Tennessee system, known as TEDS, from scratch. It built on components from Georgia’s system, according to a legal declaration and a deposition of Kimberly Hagan, Tennessee Medicaid’s director of member services, that were part of a class-action lawsuit that Medicaid beneficiaries filed against the state in 2020.

The lawsuit, which is ongoing and does not name Deloitte as a defendant, seeks to order Tennessee to restore coverage under its Medicaid program, known as TennCare, for those who wrongly lost it. Hagan, in a court filing, said many problems “reflect some unforeseen flaws or gaps” with the Tennessee eligibility system and “some design errors.”

A federal judge on Aug. 26 sided with the Medicaid beneficiaries, ruling that Tennessee violated federal law and the U.S. Constitution. “Poor, disabled, and otherwise disadvantaged Tennesseans should not require luck, perseverance, or zealous lawyering to receive healthcare benefits they are entitled to under the law,” wrote U.S. District Court Judge Waverly D. Crenshaw Jr., adding, “TEDS is flawed, and TennCare knows that it is flawed.”

Tennessee Medicaid spokesperson Amy Lawrence said the state is “determining what our next steps will be.”

Tennessee’s $823 million contract with Deloitte shows that the budget for changes outside the contract’s original scope increased by hundreds of millions of dollars. Deloitte’s maximum compensation for such change orders rose to $417 million under a 2023 contract amendment, up from $103.6 million four years earlier.

Lawrence said state officials “do not and would not pay to fix vendor errors.” Lawrence attributed the cost increases to “system modernization” in “an effort to enhance our citizens’ interactions with the state Medicaid program.” Additional funding was also needed to comply with new federal requirements related to the covid-19 pandemic, she said.

Waiting on Fixes

States sometimes wait so long for Deloitte’s fixes that the staffers who worked on the problems don’t see the results. Jamie Perkins was responsible for making letters easier for Colorado Medicaid enrollees to understand. The letters are generated by Colorado’s Deloitte-run eligibility system. State audits have found that the notices confuse enrollees and contain errors. Perkins said she left her job in 2021, frustrated that many of her fixes hadn’t been implemented.

“It feels like a really perverse reward system, frankly, for Deloitte,” Perkins said. “When Deloitte is themselves making a problem that did not originate with the department, the department is still paying them to fix those problems.”

The state’s contract with Deloitte now outlines “protocols to address issues that are the result of the contractor,” said Trish Grodzicki, a spokesperson for Colorado’s Medicaid agency. As of June 30, Colorado “has made substantial improvements” and a “majority of the letters have been rewritten” and updated in the system, she said.

Deloitte spokesperson Karen Walsh said “a change request can represent a number of different things,” including when states make policy decisions that would warrant system updates. Smith said Deloitte views change requests and system issues, or defects, as different things.

“We have a responsibility when there’s a system issue to fix that,” Walsh said. “We don’t get a change request to fix an issue.”

Yet in Kentucky and other places, states have submitted change orders to resolve issues. Government officials and Deloitte sometimes negotiate fixes for months before they’re implemented.

Kentucky resident Beverly Likens lost Medicaid coverage in June 2023 partly due to an error with the state’s Deloitte-run system. State health officials told a legal aid group in September 2023 that a “change order has been submitted” to fix the glitch, which blocked her new coverage application from getting through online.

Likens, with the help of a lawyer, had her Medicaid benefits quickly reinstated, but that was far from the end of the saga. The problem that caused her benefits to lapse was resolved in April — 10 months later — when Kentucky implemented the first phase of a change request, Kentucky’s Cabinet for Health and Family Services told KFF Health News.

Agency spokesperson Brice Mitchell said the change request was designed to address a “limitation of the system rather than technical issues.” The request, for which a second phase was implemented in July, cost $522,455 and took more than 3,500 hours of work, according to Mitchell and documents obtained in response to a public records request. All such requests “are thoroughly vetted, negotiated and approved by several areas within the Cabinet,” Mitchell said in an emailed statement.

“These are large, complex system implementations,” Walsh, of Deloitte, said. “So in all of them, you’re going to be able to find a point in time where there was an issue that needed to be fixed. And you can also find millions of people every day who are getting benefits through these systems.”

In February, Georgia officials were discussing a high-priority change request to resolve an ongoing problem: A defect affected potentially tens of thousands of “cases/claims” for families in the Supplemental Nutrition Assistance Program, known as SNAP, and the Temporary Assistance for Needy Families program that, among other problems, led the state to recoup some residents’ entire benefit, according to state documents KFF Health News obtained from a public records request. The programs provide monthly cash assistance to low-income people for food and housing. Georgia in 2014 inked a contract with Deloitte to build and maintain its eligibility system, known as Georgia Gateway.

Federal regulations cap how much money the government can recoup if a SNAP recipient was overpaid at 20% or $20, whichever is higher, according to legal aid attorneys and SNAP experts.

“We have plenty of clients who, that is their entire grocery budget,” said Adrianne Freeman, deputy director for litigation and advocacy at the Georgia Legal Services Program.

The defect — which Georgia DHS’ Brown said was identified on April 29, 2022 — created several problems, including incorrect calculations of how much to recoup and clawbacks not occurring on the correct start dates. “The Gateway system did not consistently adjust or apply the recoupment amount correctly,” Brown said.

A fix was deployed the weekend of Feb. 17, the documents state, but a formal change request was needed to “allow the State Agency (SA) to correctly apply allotment reductions to all SNAP and TANF cases impacted by Defect 21068,” the documents state. The change order would allow state officials to run an automated one-time mass update to fully resolve the problem.

The target date for doing so: March 1. That was nearly two years after officials were provided an “original report” noting that more than 25,000 cases may have been affected, the documents state.

Relying on Workarounds

States often face constraints on how many changes can be made in a year. In Texas, there is a years-long waitlist for changes, according to advocates, state documents, and the state health agency. “The system isn't nimble enough to meet the needs and often relies really heavily on manual workarounds,” said Stacey Pogue, a senior research fellow at Georgetown University’s Center on Health Insurance Reforms with expertise on Medicaid in Texas.

Texas eligibility workers use workarounds to process applications while awaiting permanent fixes. Deloitte said in its $295 million Texas contract that “there is a real need” for workarounds, which allow operations to continue “without affecting client benefits.”

Many of these “temporary” fixes were implemented years ago and were still in use in 2023, according to records obtained by KFF Health News that found 45 active workarounds in Texas last year. In one instance, a workaround was implemented nearly 14 years ago. Deloitte acknowledged in its Texas contract that reducing workarounds “is one of the top priorities.”

Smith of Deloitte said it doesn’t always take months to fix a problem: “We have changes that get implemented in a day and changes that get implemented in a month.”

Further, Smith said, Deloitte “is one part of implementing a change,” noting “we’re often not necessarily the constraint.”

The state considers several factors when assessing which fixes to tackle first, including how many beneficiaries are affected. The more complex the workaround, “the longer it may take for staff to process eligibility,” said Jennifer Ruffcorn, a spokesperson for Texas Health and Human Services.

In Florida — in addition to the lapses in coverage for maternal care — the National Health Law Program and the Florida Health Justice Project alleged in their lawsuit in federal court that notices to Medicaid beneficiaries alerting them their benefits would be terminated did not explain the basis for the decision.

In October, about a month after the lawsuit was filed, the state asked Deloitte to provide an estimate to alter the notices, Kallumkal of Deloitte testified at trial in August.

Deloitte estimated it would need roughly 28,000 hours, he said. That’s more than twice the 12,600 hours the state sets aside each year to pay Deloitte for revisions. The extra hours would require an amended contract in which the state would have to agree to pay more. Florida’s Department of Children and Families did not respond to requests for comment.

For Deloitte, extra hours mean more revenue, Kallumkal acknowledged during his testimony while under cross-examination. Deloitte subsequently provided the state with a new estimate for a narrower scope of work that would take 12,000 hours, he said.

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

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Tribal Health Officials ‘Blinded’ by Lack of Data

A strong public health system can make a big difference for those who face stark health disparities. But epidemiologists serving Native American communities, which have some of the nation’s most profound health inequities, say they’re hobbled by state and federal agencies restricting their access to important data.

American Indians and Alaska Natives face life expectancy about 10 years shorter than the national average and, in early 2020, had a covid-19 infection rate 3½ times that of non-Hispanic Whites.

While tribal health leaders have fought for years for better access to data from federal agencies, the pandemic underscored the urgency of making data available to tribes and tribal epidemiology centers.

But even after the public health emergency put a spotlight on the data inequity, tribal public health officials say not much has changed and they still have trouble accessing data on infectious-disease outbreaks, substance use and suicide.

“We’re being blinded,” said Meghan Curry O’Connell, chief public health officer for the Great Plains Tribal Leaders’ Health Board and a citizen of the Cherokee Nation. O’Connell’s work fighting for greater access to data has been highlighted in recent years as the region faces a devastating and ongoing syphilis outbreak.

In 2022, the Government Accountability Office published a report documenting obstacles keeping federal public health information from tribes, including confusion about data-sharing policies, inconsistent processes for requesting information, poor data quality and strict rules for sensitive data on health issues such as substance misuse.

In one example, officials said that as of November 2021, 10 of the 12 tribal epidemiology centers in the United States had varying levels of access to covid data from the Centers for Disease Control and Prevention. While all 10 were given case surveillance data that included information on positive cases, hospitalizations and deaths, only six said they also had access to covid vaccination data from the Department of Health and Human Services.

The GAO report also found that staffers responding to data requests at HHS, the CDC and the Indian Health Service did not consistently recognize tribal epidemiology centers as public health authorities, forcing some to ask for data as researchers or file public records requests.

HHS officials agreed with all of the recommendations the GAO made as a result of its investigation, and after consulting with tribal leaders, this year published a draft policy outlining the types of data the agency would make available to tribes and tribal epidemiology centers, and establishing expectations for agency staffers about responding to data requests.

Some tribal leaders say the proposal is a step in the right direction but is incomplete. Jim Roberts, senior executive liaison in intergovernmental affairs at the Alaska Native Tribal Health Consortium, a nonprofit organization that provides care and advocacy for Alaskan tribes, said the GAO report didn’t address how federal agencies treat tribal governments, which also have a right to their data as sovereign nations.

While HHS continues to work on its policy, Roberts said a strong federal policy on data-use agreements would help tribes’ relationships with state governments, too.

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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