Science
The Many Ways Kennedy Is Already Undermining Vaccines
During his Senate confirmation hearings to be health secretary, Robert F. Kennedy Jr. presented himself as a supporter of vaccines. But in office, he and the agencies he leads have taken far-reaching, sometimes subtle steps to undermine confidence in vaccine efficacy and safety.
The National Institutes of Health halted funding for researchers who study vaccine hesitancy and hoped to find ways to overcome it. It also canceled programs intended to discover new vaccines to prevent future pandemics.
The Centers for Disease Control and Prevention shelved an advertising campaign for the flu shot. Mr. Kennedy has said inaccurately that the scientists who advise the C.D.C. on vaccines have “severe, severe conflicts of interest” in promoting the products and cannot be trusted.
The Health and Human Services Department cut billions of dollars to state health agencies, including funds needed to modernize state programs for childhood immunization. Mr. Kennedy said in a televised interview on Wednesday that he was unaware of this widely reported development.
The Food and Drug Administration canceled an open meeting on flu vaccines with scientific advisers, later holding it behind closed doors. A top official paused the agency’s review of Novavax’s Covid vaccine. In a televised interview last week, Mr. Kennedy said falsely that similarly created vaccines don’t work against respiratory viruses.
Some scientists said they saw a pattern: an effort to erode support for routine vaccination, and for the scientists who have long held it up as a public health goal.
“This is a simultaneous process of increasing the likelihood that you will hear his voice and decreasing the likelihood that you’ll hear other voices,” Kathleen Hall Jamieson, director of the Annenberg Public Policy Center, said of Mr. Kennedy.
He is “decertifying other voices of authority,” she said.
H.H.S. disagreed that Mr. Kennedy was working against vaccines.
“Secretary Kennedy is not anti-vaccine; he is pro-safety,” Andrew Nixon, a department spokesman, said in a statement. “His focus has always been on ensuring that vaccines are rigorously tested for efficacy and safety.”
The statement continued, “We are taking action so that Americans get the transparency they deserve and can make informed decisions about their health.”
After attending the funeral of an unvaccinated child who died of measles in West Texas on Sunday, Mr. Kennedy endorsed the measles vaccine on X as “the most effective way to prevent the spread of measles.”
But he has also described vaccination as a personal choice with poorly understood risks and suggested that miracle treatments were readily available. On Sunday, he praised two local doctors on social media who have promoted dubious, potentially harmful, treatments for measles.
Even as cases of measles in the United States have surged past 600 in 22 jurisdictions, Mr. Kennedy has claimed in a recent interview that the measles vaccine causes deaths every year (untrue); that it causes encephalitis, blindness and “all the illnesses that measles itself causes” (untrue); and that the vaccine’s effect wanes so dramatically that older adults are “essentially unvaccinated” (untrue).
According to an email obtained by The New York Times, H.H.S. intends to revise its web pages to include statements like “The decision to vaccinate is a personal one” and “People should also be informed about the potential adverse events associated with vaccines.” (Vaccines are already administered only after patients provide informed consent, as required by law.)
Tensions with mainstream experts came into sharp focus last week, when Dr. Peter Marks, the top vaccine regulator, resigned under pressure from the F.D.A.
“It has become clear that truth and transparency are not desired by the secretary, but rather he wishes subservient confirmation of his misinformation and lies,” Dr. Marks said in his resignation letter.
Mr. Kennedy’s position on vaccines has raised alarm for decades. But it has become particularly notable now, against a backdrop of rising skepticism of vaccines and worsening outbreaks of measles and bird flu, experts said.
The M.M.R. vaccine — a combination product to prevent measles, mumps and rubella that has been available since 1971 — has long been a target of anti-vaccine campaigns because of the disproved theory that it can cause autism. Mr. Kennedy has said that he would like to revisit the issue, in part to assuage parents’ fears that the vaccines are unsafe.
But he has hired David Geier to re-examine the data. Senator Bill Cassidy, Republican of Louisiana, a doctor and the chairman of the Senate Health Committee, has sharply criticized the decision to spend tax dollars testing a discredited hypothesis even as the administration is cutting billions for other research.
“If we’re pissing away money over here,” he said last month, “that’s less money that we have to actually go after the true reason.”
The refusal to accept scientific consensus is “disturbing, because then we get into very strange territory where it’s somebody’s hunch that this does or doesn’t happen, or does or doesn’t work,” said Stephen Jameson, president of the American Association of Immunologists.
In interviews, Mr. Kennedy has downplayed risks of measles and emphasized what he sees as the benefits of infection.
“Everybody got measles, and measles gave you protected lifetime protection against measles infection — the vaccine doesn’t do that,” he said in an interview on Fox News.
Two doses of the M.M.R. vaccine do provide decades-long immunity. And while immunity from the infection may last a lifetime, “people also suffer the consequences of that natural infection,” Dr. Jameson said.
One consequence was discovered just a few years ago: A measles infection can destroy the immune system’s memory of other invading pathogens, leaving the body vulnerable to them again.
Measles kills roughly 1 in every 1,000 infected people, and 11 percent of those infected this year have been hospitalized, many of them children under 5, according to the C.D.C. Two girls, ages 6 and 8, died in West Texas.
By contrast, side effects after vaccination are uncommon. But Mr. Kennedy has suggested that people should apprise themselves of the risks before opting for the shot.
The phrasing implies that “if you are more fully informed, you might make a different decision,” said Dr. Jamieson, of the Annenberg center.
Doctors have long expected health secretaries and the C.D.C. to urge widespread vaccination unequivocally amid an outbreak, and in the past they have.
But Mr. Kennedy has spoken enthusiastically about cod liver oil, a steroid and an antibiotic that are not standard therapies. Some of those treatments may be making children more sick.
“The messaging I’m seeing is focused on potential treatments for measles,” said Dr. Sean O’Leary, chair of the infectious disease committee for the American Academy of Pediatrics.
Closed Doors
At his confirmation hearing, Mr. Kennedy promised that he would not change the C.D.C.’s childhood vaccination schedule. About two weeks later, he announced a new commission that would scrutinize it.
The schedule is based on recommendations from the Advisory Committee on Immunization Practices, a panel of medical experts who review safety and effectiveness data, potential interactions with other drugs and the ideal timing to maximize protection.
At his confirmation hearing, Mr. Kennedy claimed that 97 percent of A.C.I.P. members had financial conflicts of interest. He has long held, without evidence, that federal regulators are compromised and are hiding information about the risks of vaccines.
“It’s frankly false,” said Dr. O’Leary, who serves as a liaison to the committee from the pediatric academy.
Mr. Kennedy’s statistic came from a 2009 report that found that 97 percent of disclosure forms had errors, such as missing dates or information in the wrong section.
In fact, A.C.I.P. members are carefully screened for major conflicts of interest, and they cannot hold stocks or serve on advisory boards or speaker bureaus affiliated with vaccine manufacturers.
On the rare occasion that members have indirect conflicts of interest — for example, if an institution at which they work receives money from a drug manufacturer — they disclose the conflict and recuse themselves from related votes.
The committee’s votes were public and often heavily debated.
“When I was C.D.C. director, people flew in from Korea and all over the world to observe the A.C.I.P. meetings, because they were a model of transparency,” said Dr. Thomas R. Frieden, who led the agency from 2009 to 2017.
Mr. Kennedy has repeatedly promised greater transparency and accountability, but he has proposed ending public comment on health policies.
His department canceled a meeting of the A.C.I.P. in February at which members were set to discuss vaccines for meningitis and flu, rescheduling it for April.
The department also canceled a meeting to discuss the seasonal flu vaccine. Officials met later without the agency’s scientific advisers.
“After all that conversation about how they want to be transparent, one of the first things he does is take things behind closed doors and diminish the amount of public input we’re getting,” said Dr. Georges Benjamin, executive director of the American Public Health Association.
At his confirmation hearing, Mr. Kennedy repeated a fringe theory that Black Americans should not receive the same vaccines as others because they “have a much stronger reaction.”
Senator Angela Alsobrooks, Democrat of Maryland, who is Black, admonished him for his “dangerous” opinion: “Your voice would be a voice that parents would listen to.”
Two weeks later, at a clinic for teenage mothers in Denver, a 19-year-old woman refused all vaccines for herself and her 1-year-old son — including the measles and chickenpox shots he was supposed to have that day.
She told the pediatrician, Dr. Hana Smith, who described the incident, that she had read online that vaccines were bad for people with more melanin in their skin.
There are reams of evidence to the contrary. Still, it quickly became clear to Dr. Smith that nothing was going to change her patient’s mind.
“No matter how much information I can give to the contrary on it, the damage is already done,” Dr. Smith said.
Misinformation is particularly difficult to counter, Dr. Smith said, “when it’s someone that has a leadership position, especially within the health care system.”
Science
CDC warns of dramatic rise in dangerous drug-resistant bacteria. How you can protect yourself
Infection rates are soaring in the United States due to a menacing bacteria that are resistant “to some of the strongest antibiotics available,” prompting infectious-disease experts to warn about the difficulty of responding to the surge.
The Centers for Disease Control and Prevention warned in a report this week that between 2019 and 2023, bacterial infections caused by a “super bug” bacteria dubbed NDM-producing carbapenem-resistant Enterobacterales (NDM-CRE) surged by more than 460% in the U.S.
The NDM-CRE is a type of bacteria with a special gene that can break down powerful antibiotics rendering most drug treatments ineffective, said Shruti Gohil, associate professor of infectious diseases at UC Irvine School of Medicine.
“This makes these ‘superbug’ bacteria very hard to treat because they’re resistant to some of the strongest antibiotics we have,” Gohil said.
The CDC’s findings, originally published in a 2022 report, noted that there were approximately 12,700 infections and 1,100 deaths in the U.S. in 2020 due to this drug-resistant bacteria.
The public health agency did not determine the exact reason for the surge; however, there is an association involving the use of antibiotics to treat COVID-19 patients in the beginning of the pandemic, said Neha Nanda, medical director of antimicrobial stewardship with USC’s Keck Medicine.
Public health officials warn that NDM-CRE has not historically been common in the U.S., so healthcare providers might not suspect it when treating patients with bacteria-related infections.
The rise of the bacteria also “threatens to increase NDM-CRE-related infections and deaths,” according to the CDC.
This is the second report the CDC released that highlighted a rise in bacteria-related cases, the most recent was published in June and focused on cases in New York City between 2019 and 2024.
Available treatment for NDM-CRE?
Experts say people with NDM-CRE bacteria won’t have any symptoms unless they develop an infection. Once they develop an infection, the symptoms will vary. NDM-CRE can cause such ailments as pneumonia, bloodstream infections, urinary tract infections and wound infections.
Some symptoms can include fever, chills with cough, shortness of breath if the bacteria infect the lung, and pain or blood when urinating if the bladder/kidneys are infected.
Since the bacteria are resistant to most antibiotics, treatment options are severely limited, leading to slower recovery and higher risk of serious complications or death, Gohil said.
Another reason health officials are concerned is because the bacteria can spread to others and survive on contaminated surfaces.
Doctors can test for NDM-CRE, but most people do not need to be tested unless they are at higher risk for having it, according to experts.
Those at risk are people who have been “in a hospital (especially in another country), had repeated antibiotics, hospital stays, or invasive medical procedures, or if you’re sick and been in contact with someone known to have NDM-CRE,” Gohil said.
Testing for the bacteria is also difficult because many hospitals and clinics do not have the tools to rapidly detect it in patients even when the patient is not sick.
How to protect yourself against NDM-CRE
NDM-CRE is caused by overuse of powerful antibiotics.
“I think this may be an opportunity for us to change the narrative where all patients typically want antibiotics,” Nanda said.
Nanda advises patients who are being prescribed with antibiotics to ask their healthcare provider:
- Why they’re getting prescribed the antibiotics? Why is it necessary?
- Ask about your options. Make sure you’ve exhausted all other treatments options before going straight to antibiotics.
“If you need it, you need it, but then be judicious about it,” she said.
Because NDM-CRE infections happen to people who are very sick, patients in hospitals or in long-term care, experts recommend that patients, healthcare staff and visitors in these settings wash their hands and avoid contact with dirty surfaces.
Science
Trump says research links Tylenol and autism; scientists say their paper is being misinterpreted
During this week’s White House press conference in which President Trump named the over-the-counter drug Tylenol as a possible cause of rising autism rates, he did not mince words, urging pregnant women to “fight like hell” not to take it.
But outside those remarks in the Roosevelt Room — during which Trump himself acknowledged “I’m not so careful with what I say” — the discussion on the common fever and pain reliever’s role during pregnancy is a lot more nuanced.
What the research on Tylenol use during pregnancy actually says
Physicians, researchers on the very studies cited in support of Trump’s position and even other members of the president’s administration are largely united on a few key facts: untreated fevers in pregnancy pose real risks to the fetus, acetaminophen (Tylenol’s active ingredient) remains the safest medication to treat them and any pregnant person seeking advice on the issue should consult their doctor.
“All that we should be asking of the medical profession [is] to actually weigh the risks and benefits for the women, with the women, and be cautious about chronic use of pain medications,” said Dr. Beate Ritz, a UCLA professor of epidemiology who co-authored a paper published last month that the White House cited as evidence for the link between Tylenol and autism.
Ritz said it has been misinterpreted.
The conclusion of the paper, which reviewed existing studies on the topic, was that the association between acetaminophen use in pregnancy and later diagnoses of neurodevelopmental disorders in kids was strong enough to merit doctors’ consideration when determining how to treat fever or pain in pregnancy. The group did not determine a causal relationship between the drug and autism, or suggest barring the drug altogether, she said.
“Looking at all of these studies, yes, there is a risk,” Ritz said. “It’s not very big, but it’s there, but the risk increases are more seen in regular users of Tylenol. This is not a woman who has a fever and takes three Tylenols.”
“There is always a weighing of the risks and the benefits, and fever in women is no good either. … Not having to take any pain medications when you are in severe pain or in chronic pain is also very cruel,” she said. “We all should have an interest in helping out here, making the right decisions without blaming the victim and putting it all on the individual woman.”
Her co-author, University of Massachusetts epidemiologist Ann Bauer, has made similar statements.
“What we recommend is judicious use — the lowest effective dose [for] the shortest duration of time under medical guidance and supervision, tailored to the individual,” Bauer told the news outlet Politico.
The administration’s confusing recommendations
Ultimately, that’s what the administration is recommending as well.
The letter that U.S. Food and Drug Administrator Dr. Marty Makary sent to physicians this week made clear that “a causal relationship” between autism and acetaminophen “has not been established and there are contrary studies in the scientific literature.”
It went on to recommend that clinicians consider limiting their use of acetaminophen for routine low-grade fevers during pregnancy, while noting that medical advice “should also be balanced with the fact that acetaminophen is the safest over-the-counter alternative in pregnancy among all analgesics and antipyretics.” (An analgesic is a pain reliever; an antipyretic reduces fever.)
Untreated fevers during pregnancy are associated with higher rates of birth defects, particularly those of the heart, brain and spinal cord; premature birth; low birth weight; neurodevelopmental disorders including autism; and fetal death, said Dr. E. Nicole Teal, an assistant professor of maternal-fetal medicine at UC San Diego.
“The FDA’s letter, while significantly more nuanced than the president’s comments on the issue, still gives too much weight to findings from poorly designed studies,” she said.
She said she will continue to prescribe acetaminophen to pregnant patients who need to treat fevers or severe pain, as it has the fewest known risks in pregnancy.
Are there other pain-relief and fever-reducing drugs that can be used during pregnancy?
Nonsteroidal anti-inflammatory drugs like ibuprofen (often sold as Advil) or naproxen (often sold as Aleve) are linked to problems with blood vessel and kidney development, as well as oligohydramnios, a condition in which there isn’t enough amniotic fluid to support a healthy pregnancy. Aspirin raises the risk of bleeding complications, and narcotics — which can relieve pain but not fever — pose addiction risks for the mother and infant alike, Teal said.
She referred to a statement from the American College of Obstetricians and Gynecologists noting that two decades of research on the question had failed to find a causal relationship between acetaminophen and autism.
“Acetaminophen is one of the few options available to pregnant patients to treat pain and fever, which can be harmful to pregnant people when left untreated,” American College of Obstetricians and Gynecologists president Dr. Steven J. Fleischman said in the statement.
The group also noted that reviews in 2015 and 2017 from the FDA and the Society for Maternal-Fetal Medicine respectively found no risks associated with appropriate usage of the drug in pregnancy.
How to navigate government communications around Tylenol use
Nonetheless, the mixed messaging from the Trump administration about Tylenol seems likely to continue.
The Department of Health and Human Services this week reposted a 2017 tweet from the Tylenol brand’s account that said, “We actually don’t recommend using any of our products while pregnant.”
A spokesperson for Kenvue, the company that owns Tylenol, said the post was taken out of context and incomplete.
“Consistent with regulations, our label states clearly ‘if pregnant or breast-feeding, ask a health professional before use,’ ” Melissa Witt said in an email. “We do not make recommendations on taking any medications in pregnancy because that is the job of a healthcare provider.”
Vice President JD Vance offered similar guidance this week.
“My guidance to pregnant women would be very simple, which is follow your doctor. Right?” Vance said in an interview with the outlet NewsNation after Trump’s press conference. “Talk to your doctor about these things.”
Science
How California families are already bracing for looming Medicaid cuts
Ever since Elijah Maldonado was born at just 29 weeks, he has needed specialty treatments that his family could afford only with publicly funded healthcare.
Diagnosed with cerebral palsy as an infant, he spent his first three months at a public hospital in Orange County, where the familiy lives.
Now 7, Elijah receives physical and speech therapy among a host of other services paid for through Medicaid. He relies on a wheelchair funded by the government. An assistant paid for with taxpayer dollars makes sure he’s safe on the bus ride to and from school.
Each month, he receives a $957 disability check that helps to cover his and his family’s living expenses.
Josephine Rios wipes her grandson Elijah’s face.
(Juliana Yamada / Los Angeles Times)
Still learning to speak on his own, he uses a Proloquo speech app on an iPad provided by his school to tell his family when he’s hungry, needs to use the restroom or wants to play with his favorite toys.
“It’s his voice — his lifeline,” his aunt and primary caretaker Cassandra Gonzalez says of the app. Her compensation for his in-home care comes from taxpayer dollars too.
Now that lifeline — and much of the government assistance Elijah receives — is at risk of going away.
With hundreds of billions of dollars worth of cuts to Medicaid and food aid kicking in this fall thanks to the passage of the Republican-backed “One Big Beautiful Bill Act” — on top of earlier cuts imposed by Elon Musk’s Department of Government Efficiency — a host of federally funded healthcare and nutrition programs that serve low-income Americans will be scaled back, revamped with expanded work requirements and other restrictions or canceled altogether if individual states can’t find alternate funding sources.
The budget reduces federal spending on Medicaid alone by about $1 trillion over the next 10 years nationwide, with initial reductions taking effect in the coming weeks.
Gov. Gavin Newsom responded by accusing the Trump administration of “ripping care from cancer patients, meals from children and money from working families — just to give tax breaks to the ultra-rich.”
L.A. public health officials called the cuts devastating for a county where nearly 40% of the population is enrolled in Medi-Cal, the state’s Medicaid program. L.A. County’s Department of Health Services, which oversees four public hospitals and about two dozen clinics, projects a budget reduction amounting to $750 million a year, and federal funding for the Department of Public Health, which inspects food, provides substance-use treatment and tracks disease outbreaks, will drop by an estimated $200 million a year. Spending cuts have prompted hiring freezes and projections of ballooning budget deficits, county health officials said.
Spending reductions, combined with recent changes to the Affordable Care Act and Medicare, could leave an additional 1.7 million people in California uninsured by 2034, according to an analysis by the nonprofit healthcare research organization KFF.
Cuts to the Supplemental Nutrition Assistance Program (SNAP), colloquially known as “food stamps,” will exceed $280 billion over the next decade, according to projections from the Congressional Budget Office.
It’s not just that the cuts to these programs are massive by historical standards.
The new rules and restrictions are confusing and states have been given little guidance from the federal agencies that oversee health and nutrition programs on how, or even when, to implement them, experts at the Center on Budget Policy and Priorities wrote in a recent report.
What’s clear, the CBPP said, is that millions of children, older adults, people with disabilities and veterans stand to lose not just Medicaid coverage but federal aid to access the type of healthy foods that could prevent illness and chronic conditions.
More than 5 million California households receive food aid through the state’s CalFresh program and 97% percent of them will see their benefits either slashed or eliminated because of federal spending cuts, changes to eligibility requirements or financial constraints at the state level, according to an analysis by the nonpartisan California Budget Policy Center.
Elijah plays with toy cars outside his aunt’s home in Tustin.
(Juliana Yamada / Los Angeles Times)
In Orange County, where Elijah’s family lives, public health officials were already reeling from federal spending cuts in the months before the budget bill passed, said Dr. Veronica Kelley, director of the OC Health Care Agency. For example, there was the $13.2-million cut to funding for family planning services in the county, and the $4-million reduction in funding to Women, Infants and Children nutrition (WIC).
The agency has worked to prevent mass layoffs by moving public-health workers in canceled programs to other departments or leaving some positions unfilled in order to save jobs elsewhere, and it has sought out nonprofit social service organizations and philanthropies to either take over programs or help fund them, Kelley said.
Now, Kelley is preparing for possible cuts to programs to combat obesity, maintain community gardens, help seniors make better healthcare decisions and reduce the use of tobacco. The agency also has to figure out how to make up for a $4.8-million reduction in federal funds for the county’s SNAP program that takes effect on Wednesday — another casualty of the federal spending bill.
The measures that the agency has leaned on to get through the year are not sustainable, Kelley said. “We can only do that for so long,” she said. “It’s chaotic. In terms of healthcare, it’s devastating… It feels like we’re taking so many steps backward.”
The looming cuts and changes have also set off alarm bells at Kaiser Permanente, California’s largest private healthcare provider with 9.5 million members statewide, 1.1 million of whom are enrolled in Medi-Cal.
“Without the ability to pay, newly uninsured people will find themselves having to delay care, leading to more serious and complex health conditions, increasing the use of emergency services and more intensive medical services,” Kaiser Permanente Southern California Regional spokeswoman Candice Lee said in a statement to The Times.
“This will affect all of us as the cost of this uncompensated care leads hospitals and care providers to charge paying customers more to cover their costs. Some hospitals and providers, especially those in rural and underserved areas, will be unable to make up for these unreimbursed costs, and will be financially threatened by these changes.”
Standing in front of her sister Cassandra’s town home in Tustin, a quiet suburban city of 80,000 about 10 miles south of Disneyland, Elijah’s mother, Samantha Rios; grandmother Josephine Rios; and Aunt Cassandra are filled with worry.
Elijah points to a command on his Proloquo speech app, which he uses to communicate his needs.
(Juliana Yamada / Los Angeles Times)
Josephine, a nursing assistant who works at a Kaiser hospital in Orange County, said she hears the panic in patients’ voices when they describe rushing to schedule needed medical procedures in anticipation of losing their Medicaid benefits.
Earlier this year, Josephine joined delegations of unionized California healthcare workers who traveled to Washington with the aim of pressing lawmakers to oppose spending cuts.
Rep. Young Kim, the Republican who represents the Rios family’s district in Congress, was receptive to the delegation’s pleas to vote no on the budget bill, Josephine recalls. The congresswoman ultimately voted for the bill, saying on her official webpage the legislation was good for Californians because it would relieve the tax burden on families, ensure that government dollars are used effectively and “strengthen Medicaid and SNAP for our most vulnerable citizens who truly need it.”
Elijah’s Aunt Cassandra and grandmother Josephine look over his shoulder as he watches a TV show.
(Juliana Yamada / Los Angeles Times)
Now, Josephine looked on as Elijah, seated in his wheelchair, played on his iPad and watched a Disney program on his phone. He can press a tab on the touchscreen to make the tablet say “My name’s Elijah” if he’s feeling unsafe away from home, another to tell his family he needs space when upset.
Watching Elijah enjoy himself, the women said they feel awkward broadcasting their woes to strangers when all they desire is what’s best for him. They don’t need the public’s pity.
The family wants lawmakers and the public to understand how seemingly abstract healthcare decisions involving billions of dollars, and made 2,000-plus miles away in Washington, have brought new financial turmoil to a family that’s already on the edge financially.
Samantha, a single mom, works full time to provide a home for Elijah and his two sisters, ages 10 and 8. A subscription to the Proloquo speech app alone would cost $300 a year out-of-pocket — more than she can afford on her shoestring budget.
Due to changes in household income requirements, Samantha had already lost Medicaid coverage for herself and her two girls, she said, as well as her SNAP food assistance, leaving her at a loss for how to fill the gap. She now pays about $760 a month to cover her daughters and herself through her employer-based health plan.
The cut to food aid has forced her to compensate by getting free vegetables, milk, eggs and chicken from the food pantry at a local school, a reality that she said she was at first too ashamed to disclose even to relatives.
Then came the bad news Samantha recently received about Elijah’s monthly Social Security Insurance for his disability. She was stunned to hear that because of stricter income cut-offs for that type of aid, Elijah would no longer receive those checks as of Oct. 1.
“Before, he was getting $957 a month — obviously that’s grocery money for me,” Samantha said. The money also went to buy baby wipes, as well as knee pads to help him move more comfortably on the floor when not using his wheelchair.
“I don’t get food stamps. I don’t get Medi-Cal for my girls. I don’t get any of that,” Samantha said. “As of Oct. 1, now I’ve got to figure out how am I going to pay my rent? How am I going to buy groceries?”
Luckily, the sisters said, the physical, speech and behavioral-health therapies that Elijah receives are safe — for now.
And the women know they can lean on each other in tough times. The sisters and Josephine all live within minutes of each other in Tustin, close enough for Samantha’s children to eat at someone’s home when their own cupboards are bare.
Every few months, Samantha said, Elijah experiences severe seizures that can last up to 90 minutes and require hospitalization.
Cassandra and Josephine like that they can run over to help if Elijah has a medical emergency. Another sister who lives farther away is on hand when needed too.
“What’s going to happen to other families who don’t have that support system?” Samantha said.
Given the potential for further cuts to programs that pay for home-based healthcare and assistants for people with disabilities, Cassandra wonders what will happen to her own family if she can no longer work as Elijah’s caregiver.
Where would the family get the money to pay a new caregiver who is qualified enough to work with a special-needs child who can speak a few words thanks to speech therapy but who cannot eat, walk or use the restroom without supervision? What if funding is eliminated for the assistant who travels with Elijah to school?
“People think that cutting Medi-Cal, cutting food stamps or whatever isn’t going to affect that many people,” Cassandra said. “It’s affecting my nephew and nieces. It’s affecting my sister. But it’s not just affecting her household. It’s affecting my household.”
“We’re not saying we’re going to Disneyland or going out to eat every day,” Cassandra said. “This is just living. We can’t even live at this point, with things being cut.”
The women offered up principles they feel are in short supply lately in the discourse over the government’s role in public health — among them “morals” and “empathy.” Samantha adds one more word to the list.
“Humanity,” she says. “We lack it.”
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