Scattered visits to free clinics notwithstanding, Guevara hadn’t had a full medical checkup in years. She required dental work. She wanted to start looking for a job. And she was overwhelmed by the maze of paperwork needed simply to get her off the street, much less to make any of the other things happen.

But Guevara had help. The Jamboree Housing Corp., an affordable-housing nonprofit that renovated the former Stanton, California, hotel Guevara now calls home, didn’t just move her in — it also provided her a fleet of wraparound services. Jamboree counselors helped Guevara navigate the health care system to see a doctor and a dentist, buy a few things for her apartment, and get training to become a caregiver.

“I was years on the street before I got the kind of help I needed so I could help myself,” said Guevara, 68.

Amid the Trump administration’s apparent opposition to using Medicaid funding for such social services, staffers at Jamboree and similar affordable housing providers in California have been worried about losing federal money, particularly as the experimental waivers that provide the primary funding for the program they rely on expire at the end of 2026. But as it turns out, the state had the foresight several years ago to designate certain nonhousing social services, such as mental health care, drug counseling, and job training, as a form of Medicaid spending that will continue to be reimbursed.

Catherine Howden, a spokesperson for the federal Centers for Medicare & Medicaid Services, confirmed that California’s use of the “in lieu of services” classification for these wraparound programs is allowed under federal regulations.

“It is starting to sound positive that we will, at the very least, be able to continue billing for these services after the waiver period,” said Natalie Reider, a senior vice president at Jamboree Housing.

During President Donald Trump’s first term, states were permitted to use Medicaid money for social support services not typically covered by health insurance. But the second Trump administration is reeling that policy back in, saying that the intervening Biden administration took the supportive services process too far. Howden said in a statement that the policy “distracted the Medicaid program from its core mission: providing excellent health outcomes for vulnerable Americans.”

Through CalAIM, a five-year experimental build-out of the Medicaid system, programs like Jamboree were able to leverage federal funding to offer the kinds of nonhousing social services that experts contend are essential to keeping people permanently housed.

However, these wraparound services are only one component of the CalAIM initiative, which is attempting to take Medicaid, known as Medi-Cal in California, in a more holistic direction across all areas of care. And when CalAIM launched, California officials gave the programs the Medicaid “in lieu of services” designation, known as ILOS, effectively putting them outside the waiver process and ensuring that even when CalAIM sunsets, money for those social initiatives will continue to flow.

“California has tried to future-proof many of the policy changes it has made in Medi-Cal by including them in mechanisms like ILOS that do not require federal waiver approval,” said Larry Levitt, executive vice president for health policy at Â鶹ŮÓÅ, a health information nonprofit that includes Â鶹ŮÓÅ Health News. “That allows these policy changes to continue, even with a politically hostile federal administration.”

The designation allows these social services to be funded through Medicaid managed-care plans under existing federal laws because they are cost-effective substitutes for a Medicaid service or reduce the likelihood of patients needing other Medicaid-covered health care services, said Glenn Tsang, policy adviser for homelessness and housing at the state’s Department of Health Care Services. The state could not provide an estimate of the annual funding for these wraparound services because they are not distinguished from other payments made to Medicaid managed-care plans.

“We are full steam ahead with these services,” Tsang said, “and they are authorized.”

Although California was the first state to incorporate the designation for such housing and other health-related social support, Tsang said, several other states — including Arizona, Arkansas, Florida, New York, and North Carolina — are now using the mechanism in a similar fashion.

Early results suggest such support saves on health care spending. When Jamboree, in Northern California, in the Central Valley, and other permanent supportive housing providers employ a holistic approach that includes social services, they have reported higher rates of formerly homeless people remaining in housing, less frequent use of costly emergency health services, and more residents landing jobs that help them pay rent and stay housed.

At the nonprofit MidPen Housing, which serves 12 counties in and around the San Francisco Bay Area, roughly 40% of the units in the program’s pipeline are earmarked for “extremely low-income” people, a group that includes the homeless, said Danielle McCluskey, senior director of resident services.

CalAIM reimbursements help fund the part of MidPen that focuses on supportive services across a wide range of experiences, from chronic homelessness to mental health issues to those leaving the foster care system. McCluskey described it as one leg of a three-legged stool, the others being real estate development and property management.

“If any of those legs are not getting what they need, if they’re not funded or not staffed or resourced, then that stool is kind of wobbly — off-kilter,” the director said.

A recent found that people who used at least one of the housing support services — including navigation into new housing, health care assistance, and a deposit to secure an apartment — saw a 13% reduction in emergency department visits and a 24% reduction in inpatient admissions in the six months that followed.

Documenting those outcomes is critical because the department needs to show federal officials that the services lessen the need for other, often costlier Medicaid-covered care — the essence of the classification.

Advocates for the inclusion of supportive services argue that the American system ultimately saves money on those investments. As California’s homeless population to more than 187,000 on a given night — nearly a quarter of the U.S. total — Jamboree has been allocating more of its resources to permanent supportive housing.

Founded in 1990 in Orange County, Jamboree builds various types of affordable housing using federal, state, and private funding. Reider said about a fifth of the organization’s portfolio is dedicated to permanent supportive housing.

“They’re not going back out to the streets. They’re not going to jail. They’re not going to the hospitals,” Reider said. “Keeping people housed is the No. 1 outcome, and it is the cost-saver, right? We’re using Medicaid dollars, but we’re saving the system money in the long run.”

Guevara, who wound up on the streets after a falling-out with family in 2015, spent years living out of her truck before a shelter worker connected her with Jamboree. There, she was paired with a specialist to help her figure out how to get and see a doctor, and to keep up with scheduling the battery of medical tests she needed after years spent living in temporary shelters.

“I also got a job developer, who helped me get this job with the county so I can pay my rent,” Guevara said of her position as a part-time in-home caregiver. “Now I take care of people kind of the same way people have been taking care of me.”

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The is considered crucial by its supporters, with climate change fueling an and firefighting by the World Health Organization. Firefighters have a of dying from cancer than the general population, according to a 2024 study, and the disease was of career firefighter line-of-duty deaths from 2002 to 2019.

The Los Angeles wildfires brought the fear generated by these statistics into bold relief. As homes, businesses, and cars — and the products within them — were incinerated, gases, chemicals, asbestos, and were released into the air, often settling into soil and dust. First responders working at close range, often without , were at higher risk of developing adverse health conditions.

Just days after the fires were contained, researchers tested Ìýwho had come from Northern California to help battle the flamesÌýand found dangerously elevated levels of lead and mercury in their blood.

“Firefighters and first responders put their lives on the line without a second thought to protect California communities from the devastating Southern California fires,” Padilla said in a statement. “When they sacrifice their lives or face severe disabilities due to service-related cancers, we have a shared duty to help get their families back on their feet.”

But while the Honoring Our Fallen Heroes Act has bipartisan support, it still faces a rough road politically, and those who’ve spent years dealing with similar government-run programs warn of major implementation issues should the measure become law.

The Senate Judiciary Committee passed a similar bill in 2024, but the measure didn’t advance to a vote on the floor. And with legislators pondering potentially massive federal budget cuts, its fate in Congress this year is far from clear. What is clear is that, for legislation tying benefits to service-related health conditions, the devil is in the details.

“Getting the piece of legislation passed is not as hard as guarding it,” said John Feal, who was injured at the 9/11 ground zero site while working as a demolition supervisor. He has since become a fierce advocate for first responders and military veterans.

“You will watch the legislation mature, as more and more people who need the assistance come forward,” Feal said. At that point, he added, the program’s capacity to grow — and to successfully process the applications of those who’ve come forward for help — may become a challenge.

That, Feal said, is what happened with the various government programs created after the 9/11 attacks to provide monetary compensation and health care to injured first responders, including some later diagnosed with cancer. Both the and the encountered substantial funding issues and were beset by logistical failures.

The structure of the Honoring Our Fallen Heroes Act, sponsored by Sen. Amy Klobuchar (D-Minn.), might allow it to sidestep some funding pitfalls. Rather than create a new benefit program, the bill would grant firefighters who have non-9/11 cancer-related conditions access to the long-standing Public Safety Officers’ Benefits Program, which provides monetary death, disability, and education benefits to line-of-duty responders and surviving family members.

Death benefits in such programs are considered and are funded regardless of congressional budget decisions. Funding for disability and education benefits, however, depends on annual appropriations.

Even with full funding, the legislation could face implementation problems similar to those plaguing the 9/11 programs, including complex eligibility criteria, difficulty documenting that illnesses are service-related, and — more recently — long waits to enroll amid .

Attorney Michael Barasch represented the late New York police detective James Zadroga, who developed pulmonary fibrosis from toxic exposure at the World Trade Center site and for whom the is named. Barasch, who still represents 9/11 victims and lobbies Congress for program improvements and funding, said the Honoring Our Fallen Heroes Act should streamline the process for first responders to document that their cancers are related to fighting wildfires.

“In my experience representing more than 40,000 members of the 9/11 community, any similar program should have a clear set of standards to determine eligibility,” Barasch told Â鶹ŮÓÅ Health News. “Needless complexity creates a serious risk that responders who should have been eligible might not have access to benefits.”

Feal added that lawmakers should be ready to bolster funding to adequately staff the Public Safety Officers’ Benefits Program if it adds to the conditions currently covered, noting that the 9/11 programs have swelled as more and more first responders have presented service-related conditions.

“There were 75,000 people in the program in 2015. There’s now close to 140,000,” Feal said. “There’s a backlog on enrollment into the WTC program because they’re understaffed, and there’s also a backlog on getting your illnesses certified so you can get compensated.”

As the Public Safety Officers’ Benefits Program is currently implemented, firefighters and other first responders are eligible for support for physical injuries they incur in the line of duty or for deaths from duty-related heart attacks, strokes, mental health conditions, and 9/11-related illnesses. The bill would add provisions for those who die or become permanently disabled from other service-related cancers.

has already been launched to track the short- and long-term health impacts of the Los Angeles wildfires. “This was an environmental and health disaster that will unfold over decades,” Kari Nadeau, a professor at Harvard’s T.H. Chan School of Public Health, said in announcing the study.

Firefighters who battled the massive 2018 Camp Fire in Northern California, meanwhile, have been found to of carcinogens and other toxic substances in their blood than the general population, according to a study commissioned by the San Francisco Firefighters Cancer Prevention Foundation.

The Honoring Our Fallen Heroes Act was first introduced in 2023 and reintroduced on Jan. 23 of this year, with Klobuchar referencing the California wildfires in her . The Congressional Budget Office estimated last year that the bill would cost about $250 million annually from 2024 to 2034; it has not weighed in since the measure was reintroduced.

“Cancer’s grip on the fire service is undeniable,” said Edward Kelly, president of the International Association of Fire Fighters. “When a firefighter dies from occupational cancer, we owe it to them to ensure their families get the line-of-duty death benefits they are owed.”

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But California’s efforts, like those in other states, will likely face the same legal challenges that have thwarted previous legislative attempts to regulate social media. The tech industry has argued successfully that imposing rules regulating how social media operate and how people can use the online services violates the free speech rights of the companies and their customers.

A previous effort at confronting the issue, the in 2022, now rests with the U.S. Court of Appeals for the 9th Circuit. A tech trade association sued to block the law and won an injunction from a lower court, largely on First Amendment grounds. The appeals court heard oral arguments in the case on July 17.

“At the end of the day, unconstitutional law protects zero children,” said Carl Szabo, vice president and general counsel for NetChoice, which argued for the tech giants before the federal appellate court.

Like the design code act, the two proposals now working their way through the California Legislature would reshape the way social media users under 18 interact with the services.

The , by state Sen. Nancy Skinner (D-Berkeley), prohibits sending push notifications to children at night and during school hours. Skinner’s measure also requires parental permission before platforms can send social media offerings via algorithms, which are designed to offer feeds that children didn’t ask for but might keep them looking at their phones longer, rather than the traditional chronological feeds of those they follow on the app.

The , by Assemblymember Buffy Wicks (D-Oakland), would amend California’s privacy laws to prohibit businesses from collecting, using, selling, or sharing data on minors without their informed consent — or, for those under 13, without their parents’ approval.

Both bills have bipartisan support and are backed by state Attorney General Rob Bonta. “We need to act now to protect our children,” Bonta said earlier this year, by “strengthening data privacy protections for minors and safeguarding youth against social media addiction.”

California Gov. Gavin Newsom, a Democrat, has been vocal about youth and social media, too, and recently called for a statewide ban on cellphones in schools. His positions on the two social media proposals are not yet known. “But I think the governor, like most every other Californian, is concerned about the harms of social media on kids,” Skinner said.

California’s efforts are especially significant because its influence as the most populous state often results in its setting standards that are then adopted by other states. Also, some of the big tech companies that would be most affected by the laws, including Meta, Apple, Snap, and Alphabet, the parent company of Google, are headquartered in the state.

“Parents are demanding this. That’s why you see Democrats and Republicans working together,” said Wicks, who with a Republican colleague co-authored the design code act that is tied up in litigation. “Regulation is coming, and we won’t stop until we can keep our kids safe online.”

The fate of the design code act stands as a cautionary tale. Passed without a dissenting vote, the law would set strict limits on data collection from minors and order privacy settings for children to default to their highest levels.

NetChoice, which immediately sued to block the law, has prevailed in similar cases in , , and . It is challenging legislation in that was rewritten after NetChoice sued over the original version. And NetChoice’s lawyers argued before the U.S. Supreme Court that efforts in to regulate social media content were unconstitutional. Those cases were remanded to lower courts for further review.

Though the particulars differ in each state, the bottom line is the same: Each of the laws has been stifled by an injunction, and none has taken effect.

“When you look at these sweeping laws like the California laws, they’re ambitious and I applaud them,” said Nancy Costello, a clinical law professor at Michigan State University and the director of the school’s First Amendment Clinic. “But the bigger and broader the law is, the greater chance that there will be a First Amendment violation found by the courts.”

The of social media on children are well established. An advisory from Surgeon General Murthy last year warned of a “” to young people, noting that a study of adolescents from ages 12 to 15 found that those who spent more than three hours a day on social media were at twice the risk of depression and anxiety as nonusers. A Gallup survey in 2023 found that U.S. teenagers spent on social media.

In June, Murthy called for like those on tobacco products. Later that month came Newsom’s the use of smartphones during the school day in California. Legislation to codify Newsom’s proposal is the state Assembly.

Federal legislation has been slow to materialize. A to limit algorithm-derived feeds and keep children under 13 off social media was introduced in May, but Congress to meaningfully rein in tech platforms — despite Meta’s chief executive, Mark Zuckerberg, apologizing for “the types of things that your families have had to suffer” because of social media harms.

It remains unclear what kinds of regulation the courts will permit. NetChoice has argued that many proposed social media regulations amount to the government dictating how privately owned firms set their editorial rules, in violation of the First Amendment. The industry also leans on Section 230 of the 1996 Communications Decency Act, which shields tech companies from liability for harmful content produced by a third party.

“We’re hoping lawmakers will realize that as much as you may want to, you can’t end-around the Constitution,” said Szabo, the NetChoice attorney. “The government is not a substitute for parents.”

Skinner tried and failed last year to pass legislation for targeting children with harmful content. This year’s measure, which was by the California Senate and is pending in the state Assembly, would bar tech companies from sending social media notifications to children between midnight and 6 a.m. every day, and 8 a.m. to 3 p.m. on school days. The bill also calls for platforms to require minors to obtain parental consent to use their core offerings, and would limit their use to an hour to 90 minutes a day by default.

“If the private sector is not willing to modify their product in a way that makes it safe for Californians, then we have to require them to,” Skinner said, adding that parts of her proposal are standard practice in the European Union.

“Social media has already accommodated users in many parts of the world, but not the U.S.,” she said. “They can do it. They’ve chosen not to.”

Wicks, meanwhile, said she considers her data bill to be about consumer protection, not speech. The proposal would close a loophole in the California Electronic Communications Privacy Act to prevent social media platforms from collecting and sharing information on anyone under 18 unless they opt in. The Assembly approved Wicks’ measure without dissent, sending it to the state Senate for consideration.

Costello suggested that focusing the proposals more narrowly might give them a better chance of surviving court challenges. She is coordinated by Harvard’s T.H. Chan School of Public Health to write model legislation that would require third-party assessments of the risks posed by the algorithms used by social media apps.

“It means that we’re not restricting content, we’re measuring harms,” Costello said. Once the harms are documented, the results would be publicly available and could lead state attorneys general to take legal action. Government agencies adopted a similar approach against tobacco companies in the 1990s, suing for deceptive advertising or business practices.

Szabo said NetChoice has worked with states to enact what he called “constitutional and commonsense laws,” citing measures in and that would mandate digital education in school. “There is a role for government,” Szabo said. (The Florida measure failed.)

But with little momentum on actual regulation at the national level, state legislators continue to try to fill the vacuum. New York recently passed legislation , which the state senator said was an encouraging sign.

Will NetChoice race for an injunction in New York? “We are having lots of conversations about it,” Szabo said.

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Being able to make a living off that degree? That’s a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.

“There’s definitely a shortage of PTs. The jobs are there,” said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. “But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It’s a lot to consider.”

As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year .

Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.

The reasons are multifold. The industry hasn’t recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.

And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices’ clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren’t staffing adequately.

According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market. “What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work,” said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.

There’s a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it’s likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. “Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy,” he said.

The association is trying to reduce turnover among therapists, and is lobbying Congress to . The Centers for Medicare & Medicaid Services plans a for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.

Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.

“But programs can’t just grow overnight,” said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. “Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I’m not just trying to take in more tuition dollars.”

All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren’t enough to keep therapists in the field.

According to the APTA’s , median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.

A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational .

Gordon said USC, in Los Angeles’ urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school’s program. “But even with that, it’s a challenge,” he said. “It’s not just hard to find people, but people don’t stay, and the most obvious reason is that they don’t get paid enough relative to the cost of living in this area.”

Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.

“It was almost like the referral got lost. I was going back and forth, asking, ‘What’s going on?’” said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she’d be hesitant to try for a physical therapy referral in the future, in part because of the wait.

Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told Â鶹ŮÓÅ Health News they’re studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.

That bumped USC’s capacity from 100 students a year to 150, and Gordon said many of the hybrid students’ professional skills are indistinguishable from those of students on campus full time.

Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.

She’s also managing a lot of debt. Three for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.

“If it were about money alone, I probably would have shifted to something else a while ago,” Barajas said. “I’m OK with my salary. I chose to do this. But it might not be the perfect situation for everybody.”

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Pero Milam se sentía atormentado por una historia familiar de cáncer, incluida la muerte de su madre por cáncer de estómago a los 54 años. Así que, a los 37, le dijo a su médico en San Francisco que quería tomar todas las precauciones para evitar un diagnóstico tardío y poder vivir una vida plena. Su médico le dijo que había una nueva prueba que podía intentar.

La prueba de sangre, llamada Galleri, detectó una señal de ADN para el cáncer de colon. Después que una colonoscopía confirmara que era de estadio 3, Milam se sometió a ocho horas de cirugía, seguida de radiación y quimioterapia. Hoy, dice que está libre de cáncer.

“Esa prueba salvó mi vida, y eso es un hecho”, dijo Milam, hablando con California Healthline desde su autobús de gira en julio.

Galleri, que cuesta $949, es la primera de una ola de pruebas de detección temprana de cáncer múltiple (MCED), que analizan fragmentos de ADN en la sangre en busca de anomalías asociadas con el cáncer.

Grail, la empresa de biotecnología con sede en Menlo Park que creó Galleri, afirma que verifica más de un millón de sitios específicos de ADN en busca de señales de cáncer y puede identificar más de 50 tipos de cáncer, incluidos los de cuello uterino, colon, mama y próstata. Más de una docena de competidores potenciales están desarrollando sus propios productos de detección de cáncer.

Sin embargo, la comunidad médica aún no ha llegado a un consenso sobre el valor de las pruebas MCED. La idea de realizar pruebas a personas aparentemente sanas ha generado preocupación entre aquellos que ya lamentan la tendencia del sistema médico estadounidense a hacer pruebas excesivas y, a menudo, a tratar en exceso a los pacientes en función de los resultados de las pruebas. Algunos señalan la controversia en torno a las para el cáncer de próstata como ejemplo.

“Una prueba de detección tiene que ser magnífica, matemáticamente, para ser beneficiosa”, dijo Jerome Hoffman, profesor emérito del Departamento de Medicina de la Universidad de California en Los Ángeles y crítico de larga data de las . “La mayor amenaza en el horizonte es el sobrediagnóstico, encontrar cosas que no importan pero en las que intervenimos de todos modos”.

Muchos expertos dicen que aún no está claro si las pruebas hacen más bien que mal, y que tener una ya disponible comercialmente les preocupa.

“Entrevista a cien personas y diles que hay una prueba que podría detectar 20, 30 o 50 tipos de cáncer con una sola muestra de sangre, y muchas de ellas dirán: ‘Quiero eso'”, dijo Philip Castle, director de prevención del cáncer en el Instituto Nacional del Cáncer. “Pero este es un mundo nuevo y valiente. No sabemos nada sobre estas pruebas, realmente”.

La historia de Milam comenzó en San Francisco cuando le estaban sacando sangre para verificar los anticuerpos de covid-19. Le contó a su médico, Jordan Shlain, sobre su miedo a desarrollar un cáncer mortal y sobre la historia de su familia con la enfermedad.

Shlain, fundador de la práctica concierge Private Medical con sede en San Francisco, le habló a Milam sobre Galleri.

“Nuestra práctica había revisado la ciencia durante 12 a 18 meses. Interrogamos a las personas de Grail”, dijo Shlain. “La versión corta es: nueva prueba, resultados prometedores y sabemos que la genética y la genómica han transformado la forma en que se trata el cáncer. Tienes que ser escéptico si eres un científico, pero también hay una tensión entre los responsables de tomar decisiones y los médicos de atención primaria. Yo cuido de individuos, no de poblaciones”.

Shlain dijo que no recomienda la prueba para todos los pacientes; dependería de sus antecedentes y factores de riesgo. Por otro lado, dijo: “No puedes prevenir el cáncer, pero puedes evitar que te mate si lo detectas temprano. Eso es simplemente una verdad”.

Milam, quien sigue actuando y dirigiendo Cookies (la empresa ha sido objeto de ), se ha convertido en un evangelista de la prueba. A menudo ha hablado de su experiencia con sus más de 2 millones de seguidores en Instagram, y se pregunta por qué más médicos no recetan Galleri como lo harían con las pruebas estándar. Shlain dijo que incluso algunos médicos en su práctica son reacios, a pesar de la profunda investigación de Private Medical sobre el tema.

El camino de Grail no ha sido sencillo. La compañía fue originalmente una escisión de Illumina, pionera en secuenciación genética en San Diego, y después de recaudar fondos de capital de riesgo y demostrar su tecnología, Illumina la compró nuevamente el año pasado por 7.1 mil millones de dólares. Sin embargo, debido a que Illumina domina el mercado de los secuenciadores necesarios en las pruebas de detección temprana de múltiples tipos de cáncer (MCED, por sus siglas en inglés), la Comisión Federal de Comercio ha presentado una demanda para por motivos de competencia desleal.

Grail también reconoció en junio que aproximadamente 400 de sus clientes de que podrían tener cáncer, no debido a un error en la prueba, sino porque se enviaron cartas incorrectas por error de parte de un proveedor.

Josh Ofman, presidente de Grail, dijo que la compañía está haciendo lobby en el Congreso “junto con muchos grupos de interés” para que se autorice a Medicare a , lo que podría desbloquear miles de millones de dólares en ingresos potenciales del gobierno federal. Grail recomienda un cribado anual, pero generalmente no está cubierto por las aseguradoras.

Said Castle, al hablar en general sobre las pruebas MCED, comentó: “No recuerdo haber visto algo [en pruebas de laboratorio] que se compare con el mercado potencial de esto. Esta es la clase de dinero que normalmente reservamos para las compañías farmacéuticas”.

Grail utilizó una excepción para pruebas desarrolladas en laboratorio para comenzar a comercializar Galleri sin la aprobación de la FDA hace dos años, una acción que llamó la atención en la comunidad médica porque ese proceso generalmente se usa para pruebas sin valor comercial. Otra prueba de sangre MCED, realizada por , sigue el mismo camino hacia el mercado y se espera que esté disponible pronto.

“Supongo que veremos más de eso porque las compañías están ansiosas por comenzar a vender”, dijo Barnett Kramer, exdirector de prevención del cáncer en el NCI y miembro de la Fundación Lisa Schwartz para la Verdad en Medicina. “Pero eso a veces ocurre antes de que se demuestre el beneficio real, y creo que es el caso aquí”.

Estudios detallados sobre el beneficio neto de las pruebas MCED podrían llevar entre 10 y 15 años, dijo Castle. La FDA no tiene que esperar a que se complete un estudio federal a gran escala, pero aún podrían pasar años antes de que la agencia apruebe alguna prueba MCED.

El objetivo de un estudio más largo y a gran escala es comprender mejor tanto los beneficios como los riesgos asociados con la detección temprana del cáncer. Entre otras consideraciones: muchos tipos de cáncer carecen de tratamientos, y no todos los cánceres crecen significativamente o se convierten en un problema. Los escépticos de las pruebas MCED se preocupan por el diagnóstico y tratamiento de pacientes, a veces de manera intrusiva y con peligros potenciales, basados en un hallazgo que no representa una amenaza real.

“No basta con decir que se encuentra cáncer”, dijo Castle. “La pregunta es, ¿podemos encontrar cáncer y salvar vidas? También queremos conocer los daños asociados con esto, como los falsos negativos y positivos, y si la prueba funciona igual de bien en todas las poblaciones”.

Ofman dijo que Galleri ha sido objeto de múltiples pruebas a pequeña escala, incluido un estudio dirigido por investigadores de la Universidad de Oxford que encontró , es decir, la probabilidad de que un paciente con un resultado de prueba anormal realmente tenga cáncer. El estudio fue respaldado por el Servicio Nacional de Salud del Reino Unido, que ha llevado a cabo un ensayo clínico aleatorio de la prueba que finalmente involucrará a 140,000 adultos. Se esperan resultados preliminares el próximo año.

Actualmente, las pruebas establecidas solo detectan un puñado de cánceres, y generalmente identifican el cáncer en etapas más avanzadas, cuando se puede hacer menos para intervenir. Según investigaciones del NCI, el que mueren por cáncer tenían cánceres que no fueron detectados por las pruebas estándar en uso.

“Tienes más opciones de tratamiento para los cánceres que se encuentran temprano, a veces incluso opciones curativas”, dijo Ofman. “Incluso con los cánceres en etapas 3 o 4, los tratamientos cuando se detectan asintomáticamente obtienen mejores resultados”.

Pero con más de 100,000 pruebas Galleri ya vendidas, Kramer, de la Fundación para la Verdad en Medicina, es uno de los que están preocupados de que la comercialización del producto esté avanzando más rápido que las pruebas a favor del mismo.

“La carga ética recae en la persona que intenta convencer a una persona sana de que se haga la prueba”, dijo Kramer. “El mejor escenario en este caso es que la prueba realmente pueda reducir el riesgo de morir por la segunda causa de muerte más común en la población adulta, y si lo hiciera con un bajo riesgo de sobrediagnóstico, eso sería un gran éxito. Pero estamos lejos de poder afirmarlo”.

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But Milam was haunted by a family history of cancer, including his mother’s death from stomach cancer at 54. So, at age 37, he told his physician in San Francisco that he wanted to take every precaution against being diagnosed too late to live a full life. As it happened, his doctor said there was a new test to try.

The blood test, Galleri, returned a DNA signal for colon cancer. After a colonoscopy confirmed it was stage 3, Milam underwent eight hours of surgery, followed by radiation and chemotherapy. Today, he said, he is cancer-free.

“That test saved my life, and that’s a fact,” said Milam, speaking with Â鶹ŮÓÅ Health News from his tour bus in July.

Galleri, priced at $949, is the first of a wave of so-called multi-cancer early-detection (MCED) tests, which analyze DNA fragments in the blood for abnormalities associated with cancer. Grail, the Menlo Park-based biotech company that created Galleri, says it checks more than a million specific DNA sites for cancer signals and can identify more than 50 types of cancer, including cervical, colon, breast, and prostate. More than a dozen prospective rivals are developing their own cancer-screening products.

The medical community, however, has yet to come to a consensus on the value of MCED tests. The notion of broadly screening seemingly healthy people has raised alarms among those who already lament the American medical system’s penchant for overtesting and, often, overtreating patients based on test results. Some note the tests for prostate cancer as an example.

“A screening test has to be magnificent, mathematically, for it to be beneficial,” said Jerome Hoffman, a professor emeritus at UCLA’s Department of Medicine and a longtime critic of . “The biggest threat on the horizon is overdiagnosis — finding things that don’t matter but that we intervene on anyway.”

Many experts say it isn’t yet clear whether the tests do more harm than good — and having one already commercially available troubles them.

“You interview a hundred people and tell them there’s a test that could detect 20 or 30 or 50 cancers with a single blood sample, and a whole lot of them are going to say, ‘I want that,’” said Philip Castle, cancer prevention director at the National Cancer Institute. “But this is a brave new world. We don’t know anything about these tests, truly.”

Milam’s journey began in San Francisco when he was having blood drawn to check for covid-19 antibodies. He told his doctor, Jordan Shlain, about his fear of developing life-threatening cancer, and about his family’s history with the disease.

Shlain, founder of the San Francisco-based concierge practice Private Medical, told Milam about Galleri.

“Our practice had done a 12- to 18-month review of the science. We grilled the people at Grail,” said Shlain. “The short version is, new test, promising results, and we know that genetics and genomics have transformed the way cancer is treated. You have to be skeptical if you’re a scientist, but this is also a tension between policymakers and primary care doctors. I take care of individuals, not populations.”

Shlain said he doesn’t recommend the test for all patients; it would depend on their histories and risk factors. On the other hand, he said, “You can’t prevent cancer, but you can prevent it from killing you by catching it early. That’s just a truism.”

Milam, who continues to both perform and run Cookies (the company has been the subject ofÌý), has become an evangelist for the test. He has often discussed his experience with his more than 2 million Instagram followers, and he wonders why more doctors don’t prescribe Galleri as they would standard screenings. Shlain said even some doctors in his practice are reluctant, despite Private Medical’s deep dive into the research.

Grail’s path has not been smooth. The company was originally a spinoff of San Diego gene-sequencing pioneer Illumina, and after the firm raised venture funding and proved its technology, Illumina bought it back last year for $7.1 billion. But because Illumina dominates the market for the sequencers needed in MCED testing, the Federal Trade Commission has the deal on antitrust grounds.

Grail also acknowledged in June that about 400 of its customers were — not because of an error with the test, but because incorrect form letters were inadvertently sent out by a vendor.

Josh Ofman, Grail’s president, said the company is lobbying Congress “along with many constituent groups” to authorize Medicare to of MCED tests, which could unlock billions of federal dollars in potential revenue. Grail recommends annual screening, but it’s generally not covered by insurers.

Said Castle, speaking of MCED tests in general, “I can’t remember seeing anything [in laboratory tests] that compares with the potential market of this. This is the kind of money being thrown around that we usually reserve for pharma.”

Grail used an exemption for to begin marketing Galleri without FDA approval two years ago, a move that raised eyebrows in the medical community because that process is typically used for tests with no commercial value. Another MCED blood test, by , is following the same path to market and is expected to be available soon.

“I’m going to guess that we’ll see more and more of that because companies are eager to start selling,” said Barnett Kramer, a former director of cancer prevention at the NCI and a member of the Lisa Schwartz Foundation for Truth in Medicine. “But that sometimes comes before the actual proof of a benefit — and I think that’s the case here.”

Detailed studies on the net benefit of MCED tests could take 10 to 15 years, Castle said. The FDA doesn’t have to wait for a large-scale federal study to be completed, but it could still be years before the agency approves any MCED test.

The aim of a longer, large-scale study is to better understand both the benefits and risks associated with early-cancer screening. Among other considerations: Many types of the disease lack treatments, and not all cancers grow significantly or ever become a problem. Skeptics of MCED tests worry about patients being diagnosed and treated — sometimes intrusively and with potential dangers — based on a finding that isn’t a true threat.

“It’s not enough to say you find cancer,” Castle said. “The question is, can we find cancer and save lives? We also want to know about the harms associated with this — false negatives and false positives — and whether the test works equally well in all populations.”

Ofman said Galleri has been the subject of multiple small-scale tests, including a study led by University of Oxford researchers that — the probability that a patient with an abnormal test result actually has cancer. The study was supported by the United Kingdom’s National Health Service, which has undertaken a randomized clinical trial of the test that will ultimately involve 140,000 adults. Early results are expected next year.

Currently, established tests screen for only a handful of cancers — and those generally identify cancer in its later stages, when less can be done to intervene. According to NCI research, of cancer had cancers that weren’t detected by the standard tests in use.

“You have more treatment options for cancers that are found early, sometimes including ones that are curative,” Ofman said. “And even with stage 3 or 4 cancers, treatments when the cancers are found asymptomatically get better outcomes.”

But with more than 100,000 Galleri tests already sold, Kramer, with the Foundation for Truth in Medicine, is among those concerned that the marketing of the product is running ahead of evidence in its favor.

“The weight of ethical burden shifts to the person who is trying to get the healthy person to take the test,” Kramer said. “The best-case scenario here is that the test might actually reduce the risk of dying from the second-most common cause of death in the adult population, and if it did that with a low risk of overdiagnosis, that would be a major win. But we’re a long way from being able to say that.”

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“I told him we could probably eat the same apples for the next 20 years and be OK, but we wouldn’t be OK if he didn’t continue his potential groundbreaking work,” Milken, 76, said. “Then we funded him.”

Driven by a family history of disease and his own experience with prostate cancer, Milken, the onetime junk-bond wizard whose on securities charges led to a 22-month prison term in the 1990s, has spent the last three decades trying to advance medical science so that people “can find cures to life-threatening diseases within their own lifetimes.”

In “Faster Cures,” a book that is part memoir and part medical history, the financier-turned-philanthropist argues for applying business principles to foster quicker medical breakthroughs: more collaboration and information-sharing among researchers, a more streamlined path through government regulations, and more public and private funding to keep the best and brightest working in the field. The book was written with Geoffrey Evans Moore, a longtime associate of Milken’s.

Milken, whose net worth is , has donated $1.2 billion to medical research and public health causes and raised another $1 billion for them from donors, according to a spokesperson. Much of that money is distributed through the Santa Monica-based Milken Institute, which funds organizations around the world that support research and education.

This interview has been edited for length and clarity.

Q: Was it difficult to write about your father’s death from cancer and your own diagnosis of advanced prostate cancer in 1993, which was thought at the time to be terminal?

Life-threatening diseases are not separated by wealth or anything else. One in 2 men are going to get diagnosed with cancer in their lifetime; for women, it’s 1 in 3. In the hospital room or in surgery, we’re all equal. That’s why I wanted to personalize it because my family is no different. In the 1970s, science could not move fast enough to save my father’s life.

Q: Is the U.S. too slow in reaching cures?

A train today in Europe or Asia can travel at 200 miles an hour, but the average train in the U.S. because you can’t put faster trains on tracks that aren’t more modern. Science is this train that’s moving fast, but the tracks are 20th-century tracks. As science moves quickly — sequencing your genome and your microbiome, for example — many of the ways we deal with our health system still relate to what it was in the 1900s, not in this century.

Q: What are those outdated practices?

One is collaboration. Thirty years ago, after my diagnosis, I attended a prostate cancer conference at MD Anderson Cancer Center in Houston, and I noticed that no one from Memorial Sloan Kettering [in New York City] was presenting, and they were the other recognized top experts in the field. When I asked why, I was told by MD Anderson’s people that they felt Sloan Kettering was a competitor. I said, “They’re not a competitor to patients.” We’ve done a huge amount of work in that area to get researchers and scientists sharing information and working together.

Q: Are cancer patients getting into clinical trials at earlier stages?

Yes, but there’s another element here relating to health equity. The demographics of America have changed considerably. Sixty years ago, 75% of everyone living in the U.S. who was not born here . Today, more than 70% of everybody living here who wasn’t born here , but our clinical trials are still . We’re not including people who will someday make up the majority of people in this country.

Q: You also spend a lot of time writing about prevention, especially as it pertains to diet. Why?

If you went to medical school in China 30 or 40 years ago, you wouldn’t have even studied diabetes because it was so rare there. Today, because of changes in the food chain and what they’re eating — meat-based and fat-based diets — China has the of any country in the world. That’s what thousands of and KFC and other franchises will do. We also know that eating certain foods can slow the growth of certain kinds of cancers, or that changing your diet can accelerate the growth. The CEO of one of the largest medical research companies in the world told me, “The next great drug is going to be prevention.”

Q: But isn’t the medical industry oriented toward selling treatment and not prevention?

When we proposed the idea to the medical community in the ’90s that you are what you eat, they said, “Prove it.” And we didn’t until 2003, so prior to that the evidence was mostly anecdotal, but there was plenty of it. The notion is mainstream today, but teaching doctors that nutrition makes a difference is still a minor, minor part of medical school. It should be at the forefront. We often refer to the produce section of the grocery store as the pharmacy of the 21st century.

Q: Your financial theories revolved around finding lower-graded bonds that produced great returns — essentially, identifying an undervalued segment of the market. Is there an undervalued equivalent in medicine or science?

It’s about the democratization of capital. In medicine and science, access to financial capital serves as a multiplier effect, but the largest asset is human capital. I’ve spent considerable time trying to identify the future Ted Turners or [telecommunications giant] John Malones of the world of medicine, then convincing them to go into research and funding them.

Q: How do you provide financing to the most talented people in the field?

That includes private and public funding. In 1998, we organized a march on Washington, and a few months later President Clinton signed into law a in the NIH [National Institutes of Health] budget. Since then, there’s been an incremental half a trillion dollars invested into the NIH, and that has made all the difference for so many organizations working on specific diseases or types of cancer.

Q: Why do you fund medical research?

My interest in medicine and science started when I was 8 years old. It accelerated in the ’70s when my wife’s mother was diagnosed with breast cancer and my father’s melanoma returned. That began a search for medical solutions that I brought into my existing philanthropy in 1982. Who a person is and what they believe in — there has always been a lot of misinformation out there, and it’s only going to get worse with artificial intelligence chat. It’s not just related to me. But I think the thousands of companies that we financed, and the millions of jobs created, are evidence that the ideas I put forth are today in the mainstream. All of the facts are there for one to see.

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The law, modeled after legislation in the , will ban websites from profiling users in California under age 18, tracking their locations, or nudging them to provide personal information. It will also require online services to automatically put privacy settings at their highest levels on sites that kids access when the law goes into effect next year.

Passed with unanimous bipartisan support, the measure presents a road map for federal lawmakers to stop social media companies from targeting kids. But the tech industry’s response, including a recent lawsuit that describes the law as having global ramifications, demonstrates how hard its powerful lobby will work to undermine or dilute regulation.

“Big Tech isn’t afraid to throw its weight around, that’s for sure,” said Jordan Cunningham, a Republican former California Assembly member who co-authored the bill. “That’s true in D.C. and Sacramento alike.”

Gov. Gavin Newsom last year , which imposes strict guardrails on online services that children use. Its greatest reach, some privacy experts believe, lies in the requirement that online services must consider what’s best and safest for kids from the very start — meaning that companies will have to design their websites based on privacy rules to protect users.

“The privacy piece is truly noteworthy,” said Jennifer King, a privacy and data policy fellow at the Stanford University Institute for Human-Centered Artificial Intelligence. “It basically says, ‘You can’t collect data on kids under 18, and you have to consider that in the design of your product.’”

That’s precisely the sort of regulation online services want to avoid. Three months after Newsom signed the bill, the deep-pocketed tech industry responded with a federal lawsuit in December to block the law from taking effect on July 1, 2024.

One of the industry’s most powerful trade associations, NetChoice, argues, in part, that the law violates free speech provisions of the U.S. Constitution. Members of the association include giants like Google, Meta (which owns Facebook and Instagram), TikTok, and Twitter.

Biden, in his on Feb. 7, asked Congress “to pass bipartisan legislation to stop Big Tech from collecting personal data on kids and teenagers online” and to prevent targeted advertising to children.

“We must finally hold social media companies accountable for the experiment they are running on our children for profit,” Biden said.

have found that targeted ads and pushes toward certain online content can be harmful to kids’ well-being, and a 2021 report found that Facebook’s own research indicated nearly a third of teenage girls after using Instagram.

In California, Cunningham and Democrat Buffy Wicks overcame the fierce opposition of an industry that in Sacramento by appealing to their colleagues not just as lawmakers but also as parents. The measure drew strong support from the international , which pushed for its passage after it helped create the U.K. law, and from Facebook whistleblower , whose testimony before Congress in 2021 sparked renewed scrutiny of the social media giant’s privacy practices.

“There is a lot of common ground for all of us, Democrats and Republicans, to come together and say, ‘OK, what’s really going on with our kids when they’re online?’” said Wicks, who has two young children. “Politically, this bill could serve as a model, especially in its bipartisan nature.”

Last year, the pair crafted an aggressive strategy to fend off the industry, authoring two bills that sought to hold social media companies accountable in different ways. Big Tech successfully blocked , which would have permitted state prosecutors to sue companies that knowingly addict minors.

“We knew they had to oppose a bill that imposes liability, costs, and damages,” said Cunningham, a father of four who served in the Assembly for six years before declining to run for reelection last fall.

That left lawmakers room to approve the other measure, AB 2273, known as the California Age-Appropriate Design Code, with little pushback. The measure forbids online services from designing features on their websites that are harmful to children.

And its requirement that online services build safeguards into their sites, such as the default privacy settings for children, represents “an existential threat” to a tech industry that derives massive profit from its ability to mine and monitor user data regardless of one’s age, Cunningham said.

In its lawsuit, filed in the U.S. District Court for the Northern District of California in San Jose, NetChoice posits the case as one of unfair restriction on free speech guarantees. The association also claims all users will have to turn over far more personal data for online services to verify who is younger than 18.

Wicks called that assertion “fearmongering,” noting that many sites already use algorithms that assess age with uncanny precision, and said she is “cautiously optimistic” the law will withstand a legal challenge because it focuses on product safety and not free speech. California Attorney General Rob Bonta spokesperson Joanne Adams told KHN that Bonta’s office would defend “this important children’s safety law in court.”

Newsom also weighed in last month after the industry filed a motion on Feb. 17 to block the law from taking effect this summer while the NetChoice lawsuit is pending. In his statement, the father of four said that no other state is doing more than California to protect kids.

In fact, some lawmakers want to go further. In February, state a bill that would bar social media companies from using algorithms or other technical features that direct content to children and could prompt them to purchase fentanyl, inflict harm on themselves or others, engage in dangerous diets, or take their own lives.

NetChoice association counsel Chris Marchese said the industry supports national regulation rather than state action. “We just don’t support a patchwork of state laws, some of which will be very different from others,” Marchese said.

Critics of the industry say that’s because Big Tech wants an industry-friendly law from legislators in D.C. In 2022, five of the tech industry’s biggest companies together lobbying the federal government, according to public filings. That’s more than either the pharmaceutical or oil and gas industries spent, .

This year, lawmakers have proposed bills to strip federal protections for online services that don’t do more , but it’s unclear if they will fare better than past efforts. At a hearing in February, Senate Judiciary Committee Chairman Dick Durbin (D-Ill.) , and other social media companies of “doing everything they can to keep our kids’ eyes glued to the screens.”

If Congress does pass federal rules, California leaders hope they won’t override or weaken laws adopted in their state.

“We can see that this is tech’s next pivot, [but] we’ve got to get this right,” Cunningham said. “In 20 years, people in public health will look back and say, ‘Man, we just let these companies conduct the biggest social experiment ever on children. How did they get away with that?’”

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El año pasado, Dorio le explicó a legisladores estatales que el problema era que el hospital tenía derecho a invalidar los deseos de la familia porque el paciente no había hecho un documento de directiva avanzada, ni había designado a alguien con poder notarial. El hospital optó por escuchar a la familia, pero según la ley del estado, los deseos de la familia no tenían peso.

Eso ya no es así. Desde el 1 de enero, California se sumó a otros 45 estados y al Distrito de Columbia con leyes que permiten a una persona tomar decisiones en nombre de un paciente, incluso si no estaba autorizada por el paciente antes de que ocurriera la situación médica.

La lista incluye cónyuges o parejas de hecho, hermanos, hijos y nietos adultos, padres y un pariente adulto o amigo íntimo; y en muchos casos, a las personas que llevaron al paciente para que lo atendieran en un primer momento.

“Los hospitales y las HMO podían usurpar los derechos de las familias y tomar decisiones médicas críticas en virtud de la ley vigente en aquel momento, incluidas las decisiones de desconectar al paciente”, explicó a KHN Dorio, especialista en geriatría de Santa Clarita y miembro de la organización no partidista . “Sabíamos que necesitábamos una ley como la que tienen la mayoría de los otros estados”.

Según datos analizados por , de los adultos estadounidenses tiene o bien instrucciones previas, que detallan lo que quieren sobre su atención médica, o bien un poder médico, que autoriza a otra persona a tomar esas decisiones.

Según sus partidarios, la finalidad detrás de la ley de parentesco es darles facultad a los representantes para que aboguen por los pacientes en lugar de permitir que un hospital tome las decisiones médicas, que pueden estar influenciadas por el costo, las camas disponibles o las presiones de los seguros.

“Esta ley libera de presión a los hospitales, a los que se pide que presten asistencia, salven vidas, se ocupen de Medicare, de los seguros… de muchas cosas a la vez”, afirmó Michele Mann, abogada de Valencia, California, especializada en planificación patrimonial, incluidas las directivas avanzadas.

Los derechos médicos de los pacientes han evolucionado a lo largo de los años, pero es un misterio por qué el estado ha tardado tanto tiempo en aprobar una ley de parentesco. Cuando la California Senior Legislature, que patrocina y promueve leyes destinadas a ayudar a la población de edad avanzada, pidió ayuda a la Oficina del Asesor Legislativo del Estado con el proyecto de ley algunos abogados se sorprendieron de ya no hubiera una ley vigente, dijo Dorio.

Los pacientes que no disponen de un documento de directivas avanzadas o de un poder notarial pueden designar a un sustituto, aunque solo sea declarándolo verbalmente en el hospital, pero, obviamente, es necesario que el paciente esté consciente.

Si un paciente llega a un hospital o centro médico incapacitado o lo está posteriormente, los proveedores deben hacer un esfuerzo de buena fe para encontrar a una persona autorizada a tomar decisiones médicas, según una ley de California en vigor desde 2005.

incluyen revisar las pertenencias del paciente y ponerse en contacto con cualquier persona que el hospital “crea razonablemente que tiene autoridad” para tomar decisiones a través de directivas o de un poder notarial. El hospital debe demostrar que se ha puesto en contacto con el secretario de estado para preguntar si el paciente tenía instrucciones anticipadas.

Con la nueva ley vigente, los proveedores de atención médica deben comprobar si el paciente tiene directivas avanzadas o un poder notarial. Pero una vez que los funcionarios han determinado que no existe ninguno, pueden recurrir a la lista de parientes más próximos, todos los cuales están legalmente autorizados a hablar en nombre del paciente.

“Es innovador”, afirmó Mann, que toma decisiones por su hermana, que tiene esclerosis múltiple y vive en un centro de cuidados de largo plazo. “Con la lista de parientes cercanos, a menudo la persona que trae al paciente es un familiar o un amigo íntimo que conoce claramente los deseos del paciente. En esos casos, se acabó la búsqueda del hospital: hay un representante legalmente autorizado”.

El proyecto de ley , presentado por el asambleísta Mike Gipson, agregó una sección al código de sucesiones, y se asemeja a la forma en que la mayoría de los estados maneja la división de los bienes de una persona después de su muerte.

En California, cuando una persona muere sin dejar testamento, sus bienes y propiedades se distribuyen siguiendo un orden de prioridad fijo y descendiente: primero el cónyuge, después los hijos, los padres, los hermanos, etc. Ahora, las decisiones médicas de una persona se decidirán de la misma manera, pero no necesariamente en el mismo orden.

California otorga a los hospitales y a los proveedores médicos la discreción de decidir qué familiar o amigo íntimo puede tomar decisiones médicas, una disposición introducida en el proyecto de ley después de que la influyente Asociación de Hospitales de California y otros grupos médicos se opusieran a una jerarquía pre establecida.

Algunos expertos se preguntan hasta qué punto será eficaz la nueva ley, ya que los hospitales conservan la facultad de elegir al representante del paciente, sobre todo si hay opiniones encontradas entre los miembros de la familia.

“Aunque no tengo motivos para creer que vayan a abusar del poder, los hospitales pueden decidir quién sería una buena persona para tomar decisiones”, dijo Alexander Capron, experto en derecho médico y ética, y profesor emérito de la Universidad del Sur de California.

Lois Richardson, vicepresidenta y asesora jurídica de la asociación de hospitales, dijo que un orden estricto de sustitutos a menudo no refleja lo que un paciente desearía. “La preocupación siempre ha sido que, en muchos casos, una jerarquía estatutaria estricta no refleja las relaciones familiares reales”, agregó.

El cabildeo de los hospitales abandonó su oposición después de que Gipson accediera a dar flexibilidad al sector, y la medida se aprobó en la legislatura prácticamente sin oposición.

Lo ideal sería que las personas dispusieran de un documento de directivas avanzadas para garantizar el cumplimiento de sus deseos, según Gipson. Pero para las personas mayores, las que viven solas y cualquiera que no tenga este documento, la ley abre el abanico de personas que pueden actuar en su nombre, incluido un amigo íntimo que bien podría ser de familia.

“Al menos así, tienes a alguien que sabe lo que quieres tomando esas decisiones”, indicó Gipson, “en lugar de dejarlo en manos de un hospital”.

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The problem, Dorio told California lawmakers last year, was the hospital had the right to override the family’s wishes because the patient had not completed an advance directive or designated a power of attorney. The hospital chose to listen to the family, but under state law, his family’s wishes held no weight.

That’s no longer the case. As of Jan. 1, California joined 45 other states and the District of Columbia with next-of-kin laws that designate a surrogate to make decisions on a patient’s behalf — even if that person wasn’t specifically authorized by the patient before the medical situation arose. The list includes spouses or domestic partners, siblings, adult children and grandchildren, parents, and an adult relative or close friend — in many cases, the people who brought in the patient for care in the first place.

“Hospitals and HMOs could usurp the rights of the families to make critical medical decisions under the law that was in place at the time — including decisions on pulling the plug,” Dorio, a geriatrics specialist in Santa Clarita and member of the , told KHN. “We knew we needed a law like most other states have.”

According to data analyzed by , only of U.S. adults have either an advance directive, with which they detail instructions about medical care, or a medical power of attorney, which authorizes someone else to make those decisions.

The idea behind the next-of-kin law, proponents say, is to empower representatives to advocate for patients rather than allow a hospital to make medical decisions, which can be influenced by cost, bed space, or insurance pressures.

“This law takes the pressure off the hospitals, who are being asked to render care, save lives, deal with Medicare, deal with insurance — any number of things all at once,” said Michele Mann, a Valencia, California, attorney who specializes in estate planning, including advance directives.

Patient medical rights have evolved through the years, but it is something of a mystery why the state took so long to put a next-of-kin statute on the books. When the California Senior Legislature, which sponsors and lobbies for laws aimed at helping the state’s older population, approached the state’s Office of the Legislative Counsel for help with the bill, Dorio said, some staff attorneys expressed surprise that such a law wasn’t already in place.

Patients without an advance directive or power of attorney have long been able to designate a surrogate, even if it’s simply by verbally declaring so while at the hospital – but that relies upon the patient being conscious.

If patients arrive at a hospital or medical center incapacitated or later become so, providers must make a good-faith effort to find a person authorized to make medical decisions, according to a California statute in effect since 2005. The going through the patient’s belongings and reaching out to anyone the hospital “reasonably believes has the authority” to make decisions via directive or power of attorney. The hospital must show it has contacted the secretary of state to ask whether the patient had an advance directive.

With the new law in place, health care providers still must check for a patient’s advance directive or power of attorney. But once officials have determined that none exists, they can turn to the next-of-kin list, all of whom are legally authorized to speak for the patient.

“It’s groundbreaking,” said Mann, who makes decisions for her sister, a patient with multiple sclerosis in a long-term care facility. “With the next-of-kin list, often the person who brought the patient in is a family member or close friend with a clear understanding of the patient’s wishes. In those cases, the hospital’s search is over — a legally authorized representative is standing there.”

, introduced by Assembly member Mike Gipson, added a section to the probate code, and it resembles the way most states handle the division of a person’s assets after death. When people in California die without a will, their assets and property are distributed in a fixed, descending order of priority: spouse first, then children, parents, siblings, etc. Now, a person’s medical decisions will be decided in the same way — but not necessarily in the same order.

California gives hospitals and health care providers the discretion to decide which family member or close friend can make medical decisions — a provision inserted into the bill after the influential California Hospital Association and other medical groups opposed a set hierarchy.

Some experts question how effective the new law will be, since hospitals retain the power to pick the patient’s representative, especially if there are conflicting opinions among family members.

“Although I have no reason to believe they would abuse the power, the hospitals get to decide who would be a good decision-maker,” said Alexander Capron, a medical law and ethics expert and professor emeritus at the University of Southern California.

Lois Richardson, a vice president and legal counsel for the hospital association, said a strict order of surrogates often doesn’t reflect what a patient would want. “The concern has always been that having a strict statutory hierarchy, in many, many cases, does not reflect real family relationships,” Richardson said.

The hospital lobby dropped its opposition after Gipson agreed to give the industry flexibility, and the measure passed through the legislature with virtually no opposition.

Ideally, people should have an advance directive to ensure their wishes are followed, Gipson said. But for seniors, those who live alone, and anyone without a stated directive, the law opens the field of people who may be able to advocate on their behalf — including a close friend who might just as well be family.

“At least this way, you have someone who knows what you want making those decisions,” Gipson said, “rather than leaving it up to a hospital.”

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