Rep. Mike Bost (R-Ill.), chair of the House Committee on Veterans’ Affairs, in a speech on the House floor, April 26.

House Republicans have set themselves a tough, if not impossible, task in attempting to use a standoff over to cut federal spending to what it was in 2022.

Retrenching to those budget levels would 8% or 9% from the , which excludes . Spending on those programs is required by law. Other spending is dictated by congressional appropriations annually. The latter is up for debate here.

Nevertheless, House Republicans tried to thread the needle with the , which narrowly passed the House on April 26. Its backers say the measure would address the debt ceiling while implementing “commonsense spending reforms.” The House GOP leadership promised to spare programs that are popular with Republican voters, such as the defense budget and veterans’ health services.

Democrats pounced on these possible cuts, especially those that would affect veterans. Their talking points appeared to infuriate Rep. Mike Bost (R-Ill.), chairman of the House Committee on Veterans’ Affairs. On the House floor, he drew a line in the sand.

“I’m dead serious that we’re not cutting veterans, and I mean it,” Bost said. “The White House and Democrats know that we can get our fiscal house in order while ensuring our service members and veterans are taken care of, and yet, with no regard for the impact of their words, they continue to speak lies about how House Republicans are cutting veterans’ benefits.”

With such an unequivocal statement, we wondered whether Bost was correct. Can the GOP plan dramatically reduce federal spending without taking away funding for veterans’ programs?

To understand this fully, two things need to be examined: the budget projections that suggest the GOP plan would result in trims to veterans’ programs, and what is spelled out in the legislation.

Digging Into the Numbers

Democrats and agencies within the Biden administration, such as the Department of Veterans Affairs, looked at the GOP bill and did their own math to determine budgetary estimates.

Because the bill is mostly a list of general spending categories, the estimates reflect uniform cuts to discretionary spending. And, because there is no specific language in the House-passed measure to exempt support for veterans’ programs, the VA assumed a full, 22% cut for fiscal year 2024 compared with 2023 funding and estimated reductions as high as $29.7 billion.

That could translate to 13 million fewer health care appointments for veterans and significant cuts to benefit payments, staffing, and clinic construction, according to the agency.

Bost’s communications director, Kathleen McCarthy, said, however, that Democrats are knowingly making a bogus assumption that cuts will be applied evenly, and pointed to public statements by Republican leaders who have insisted veterans will be spared.

“We make sure that our veterans and our service members are taken care of,” House Speaker Kevin McCarthy at the New York Stock Exchange last month.

“We will provide for our national defense, take care of veterans, and secure our border — all while reducing overall spending,” House Appropriations Committee Chairwoman Kay Granger (R-Texas) their plan.

But delivering on that promise would necessitate even deeper cuts to other programs.

Of the $1.7 trillion discretionary budget spent in 2022, a Congressional Budget Office found that $113 billion went to certain veterans’ benefits and $751 billion covered defense.

Shielding defense and veterans’ programs would force Republicans to concentrate all the cuts on the remaining discretionary budget, which the Center on Budget and Policy Priorities found would amount to 23% cuts, an amount similar to the administration’s estimate.

Why This Debate Matters

Veterans’ funding has emerged as one of the most hotly contested issues in the debt discussion.

The White House tweeted about Republican cuts to veterans, prompting an angry response from Sen. Tom Cotton (R-Ark.), a veteran of the wars in Iraq and Afghanistan. Sen. Roger Marshall (R-Kan.) echoed Bost’s claim in a hearing Thursday, accusing Democrats of “lies.” Sen. Alex Padilla (D-Calif.) shot back that House Republicans that would have explicitly exempted veterans.

The GOP also could face opposition from within its ranks. To achieve their goals without affecting veterans, House Republicans would have to find other reductions supported by nearly the entire caucus. Opposition from five or more members would doom the legislation.

The situation is particularly dicey because certain Republicans oppose cutting some of the programs likely to be targeted — such as projects in their districts — and other Republicans favor even deeper cuts.

More than 20 veterans’ groups have opposing the GOP plan.

The nation’s largest veterans’ organizations have said they will not take a position on the legislation to avoid the appearance of partisanship. But representatives for some of those groups said although they believe Republican leaders genuinely want to protect veterans, they understand it is hard for such a narrowly divided body to make guarantees.

“Mike Bost and the leaders may not want to cut veterans, but they may have to acquiesce to one or two or three or more of their members to get the thing done,” said Patrick Murray, director of national legislative service for the Veterans of Foreign Wars, referring to raising the debt ceiling while reducing spending.

Though other large veterans’ groups declined to comment on the record, representatives highlighted possible cuts to programs they consider worthwhile that some lawmakers have declared unnecessary or wasteful.

“We’ve heard people say they’re not going to cut spending, but then we’ve heard people say they’re going to cut wasteful spending,” Murray said. “Well, that’s subjective.”

Another Potential Land Mine

Veterans’ organizations are also worried about a possible rollback of the landmark — and expensive — Honoring Our PACT Act, which provides for the care and remediation for veterans exposed to toxic substances overseas. The law did not take effect until this year.

Republican lawmakers maintain that they can make the numbers work to preserve the law.

But the House-passed debt-ceiling measure does specifically mandate one significant cut, as Rep. Rosa DeLauro (D-Conn.), the top Democrat on the House Appropriations Committee, pointed out. The GOP bill rescinds any unspent , including veterans’ funding. When Bost wrote to the VA at the end of March asking about unspent covid money, his office estimated some .

DeLauro, in denouncing the GOP bill and apparently using more recent numbers, said the rescission would be .

“That is a straight-up, ‘we’re-taking-that-back’ cut,” said Murray.

Bost’s office stuck to its side of the line in the sand, suggesting the money, once rescinded, could be repurposed for different veterans’ programs, but noted that would be up to appropriators.

Our Ruling

Bost claimed that Republicans were not cutting veterans’ benefits even as the text of their bill to raise the nation’s debt ceiling would roll back all discretionary spending.

Drafting a slimmed-down budget that spares veterans is no easy task. Most notably, the VA represents one of the largest pieces of the pie in terms of discretionary spending, and, in the House-passed Limit, Save, Grow Act, no language was included to specifically protect it.

The House GOP plan does include a specific budget rescission for unspent covid relief funds. That translates to $2 billion coming from the VA. While Congress could restore that money in the future — and it is a relatively small portion of the VA budget — it would result in a reduction in spending for veterans as the proposal stands.

House Republicans like Bost have said repeatedly they intend to protect this key constituency. But so far, such protections are not evident on paper.

We rate Bost’s statement as Mostly False.

sources

, April 17, 2023

, April 26, 2023

“,” Committee for a Responsible Federal Budget, April 25, 2023

, March 21, 2023

on spending for veterans, April 26, 2023

, House Appropriations Committee estimate of veterans’ cuts

, March 11, 2021 (veterans’ appropriations on Page 110)

, sponsored by Rep. Jodey C. Arrington (R-Texas), engrossed April 26, 2023

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“” U.S. Department of Treasury, accessed May 1, 2023

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“” (letter), April 25, 2023

Background email discussion with office of Rep. Mike Bost (R-Ill.), April 28, 2023

Email exchanges with Democratic staff of House Appropriations Committee, April 28, 2023

Telephone interview with Patrick Murray, director of national legislative service for the Veterans of Foreign Wars, April 28, 2023

regarding veterans’ programs by Rep. Mike Bost (R-Ill.), C-SPAN, April 26, 2023

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More than 20 million people gained Medicaid coverage in the past three years after Congress expanded access to the entitlement program during the covid-19 pandemic, . But enrollment will fall starting in April, when the pandemic-era changes end and states begin cutting coverage for Americans who are no longer eligible.

On Tuesday, President Joe Biden pressured Republicans to release the party’s plans to cut government spending, which are expected to call for deeper cuts to Medicaid — and could offer Americans a preview of Republicans’ wish list should the party gain full power in the 2024 election.

If far-right Republicans “try to take away people’s health care by gutting Medicaid and the Affordable Care Act, I will stop them,” Biden said.

Biden and other Democratic leaders have said they want to expand Medicaid, a goal likely to be reflected in the president’s budget proposal out next week. But while top Democrats say they will not negotiate government spending with Republicans when the GOP is refusing to raise the debt ceiling, they have left open the possibility of talks over Medicaid spending at a later date.

Rep. Hakeem Jeffries of New York, the new House Democratic leader, said in January that Democrats are open to “a conversation” with Republicans separate from the debt ceiling debate.

“There is a budget process, and there’s an appropriations process,” Jeffries said when asked by KHN why Medicaid did not get the same red-line defense as Medicare and Social Security during Biden’s State of the Union address. “We are willing to have a conversation with the other side of the aisle about how to invest in making life better for everyday Americans, how to invest in the middle class, how to invest in all those Americans who aspire to be part of the middle class.”

Some Republicans hope to extract concessions with Democrats to cut the program by limiting benefits, such as by allowing more states to impose — a plan pushed by the Trump administration but largely struck down by the courts. Republicans could also target , meaning taxes placed on things like inpatient hospital services or nursing facility beds.

Progressive Democrats have drawn a hard line and hope the program’s growth makes cutting Medicaid a riskier political idea than it once was. More than 1 in 4 Americans are currently covered through Medicaid or the Children’s Health Insurance Program, including children, pregnant people, people with disabilities, and people living on a lower income.

“To my mind, Medicaid must be off the table,” Sen. Bernie Sanders (I-Vt.), chair of the Health, Education, Labor, and Pension Committee, told KHN. “The idea of coming down heavy on people who are of low income would be outrageous, and I feel very much that’s what Republicans have in mind.”

The Biden administration to Congress on March 9, outlining the president’s spending priorities for federal programs, including for Medicaid.

During his Feb. 28 speech, Biden pointed to recent Republican proposals to cut Medicaid and repeal the Affordable Care Act. And he listed the possible consequences of those proposals — such as the loss of mental health care for millions of children under Medicaid’s guarantee of comprehensive health coverage — and urged Americans to compare the still-unknown cuts that Republicans want with his budget proposal.

Biden is likely to start any negotiations by arguing for more spending. He has called out conservative states that have resisted expanding Medicaid coverage, traveling to Florida after his State of the Union address to chastise nearly a dozen states that under the ACA. He pushed to expand ACA subsidies during the pandemic and, more recently, to make them permanent.

House Republicans say they want to balance the federal budget in 10 years without raising taxes and without cuts to Medicare, Social Security, or military spending — Medicaid, Medicare, and Social Security, along with funding for the Affordable Care Act and Children’s Health Insurance Program, account for .

The Washington Post that a former Trump administration official had briefed lawmakers on a balanced-budget proposal that includes $2 trillion in cuts to Medicaid. A separate proposal from House Republicans last year would cut total federal Medicaid, CHIP, and ACA marketplace subsidy spending by nearly half over the next decade.

Edwin Park, a research professor at the Georgetown University McCourt School of Public Policy’s Center for Children and Families, the House proposal “would likely drive tens of millions into the ranks of the uninsured and severely reduce access to health care and long-term services and supports needed by low-income children, families, seniors, people with disabilities, and other adults.”

Because Medicaid is the largest source of federal funding for the states, dollars could also dry up for priorities like education, Park added.

A longtime push by conservatives has been to trim Medicaid by adding eligibility restrictions like work requirements or more stringent verifications. Republicans tried to do that in . The same plan instead of the federal government matching a percentage of whatever a state spends.

Republicans could also push to rein in the Federal Medical Assistance Percentage that states get for Medicaid. Currently, that percentage match has been boosted . And at least one top Republican to the way disabled people get home- and community-based care services that allow them to remain in their homes, said Yvette Fontenot, senior policy and legislative affairs adviser at the liberal-leaning Protect Our Care.

Fontenot said Republicans could focus on fraud as a pretext for their proposals, raising oversight questions about how many people got benefits improperly and how many stayed on Medicaid under pandemic rules that required states to maintain enrollment when they would otherwise be kicked off. “I think it just becomes an underpinning of all the different potential policies here,” she said.

Brian Blase, a former Trump administration economic adviser who is , told KHN he doubted Republicans would have much success going after Medicaid — especially ahead of next year’s presidential election, when Democrats would be less likely to cave on any entitlements.

But he noted potentially promising discussions on Capitol Hill for some GOP goals — specifically, cutting Medicaid provider taxes or pushing new work requirements, an idea that some conservative Democrats like Sen. Joe Manchin of West Virginia they are open to.

Conservatives see the taxes, which states levy on Medicaid providers, as a backdoor way to boost what the federal government sends to states, since states use those taxes to fund their share of Medicaid funding under FMAP.

Blase pointed to reporting from the major budget showdowns in 2011 and 2013 as evidence that Biden, who was then vice president, might be open to cuts there.

“The fact that Biden is on record as calling them ‘’ that should be eliminated, I think, makes it a little bit easier for congressional Republicans to argue that they should be on the table,” he said.

The fight over government spending is nearing an inflection point. The nonpartisan Congressional Budget Office the United States would hit the debt ceiling between July and September, meaning the Treasury Department’s ability to pay the nation’s bills and prevent defaulting on its debt could be exhausted as early as this summer without congressional action.

A recent that while a majority of voters support raising the debt ceiling, they are split on how lawmakers should address the nation’s debt. Nearly three-quarters of Republicans and a majority of independent voters said Congress should cut programs and services rather than raise taxes and other revenue.

Though Republicans have yet to propose specific cuts, Democrats are betting that Medicaid and other entitlements will prove as difficult to target as Social Security and Medicare if voters understand the impact on many Americans’ lives.

“I think it’s going to be tough for Republicans right now,” Rep. Alexandria Ocasio-Cortez (D-N.Y.) told KHN. If the GOP wants to cut benefits for low-income families “in a time when eggs are expensive and a time when groceries and food have gotten quite expensive for everyday people, then they need to go in front of the public, in front of the American people, and make the case as to why they want to cut people’s ability to feed themselves and their children.”

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The shortage that’s only worsened since the pandemic is a prescription for skyrocketing costs, suffering, and unnecessary death, Sen. Bernie Sanders (I-Vt.), the new chairman of the Senate’s top health committee, warned in his committee’s first hearing Thursday.

“We are going to produce legislation, and I think people will be surprised about the level of bipartisan supporters,” Sanders said in a brief interview during a break from the hearing. He called for the committee to “produce something meaningful.”

The shortage of health care workers of all sorts is a widespread problem, but is especially acute in rural areas and minority communities. Sanders pointed to the startling numbers of Americans living in medical care deserts to illustrate the point. There are nearly 100 million people who don’t have easy access to a primary care physician, almost 70 million with no dentist at hand, and some 158 million people who have few local mental health providers, Sanders said.

The covid-19 pandemic contributed to the nation’s existing worker shortage as many left the workforce as the crisis worsened. Some contracted the virus themselves, and large numbers of health care providers died. An investigation by KHN and The Guardian revealed more than 3,600 health workers in the United States died during the pandemic’s first year alone. Some got burned out or sought higher-paying jobs elsewhere.

“Despite all of our health care spending, we don’t have enough doctors, nurses, nurse practitioners, dentists, dental hygienists, pharmacists, mental health providers, and other medical professionals,” , pointing to data that suggest the nation faces a shortfall of about 450,000 nurses and 120,000 doctors in the coming years, and 100,000 dentists now.

While Democrats and Republicans alike acknowledged the shortages hobbling care for hundreds of millions of Americans, any legislative solution must pass not only the Senate Health, Education, Labor and Pensions Committee, but also the full Senate and House of Representatives. Far-right House Republicans have threatened to go so far as forcing the federal government to default on its debts as they demand spending cuts, and high government spending on health care could make new legislation a ripe target.

Sen. Bill Cassidy of Louisiana, the committee’s top Republican who is also a doctor, cited a few programs the committee is responsible for updating this year, such as . He said funding should reflect what works in the health care system and come “with the appropriate spending offsets.”

“We have to make sure that we’re not wasting the money we’re trying to productively spend,” he said.

None of the senators in the packed hearing room disagreed with the fundamental problem that too many medical professionals are leaving their fields and that educational institutions are not graduating enough new ones to replace them and meet the growing needs of an aging population.

Members on both sides of the aisle recognized growing levels of burnout in the medical professions; increased threats faced by health care workers; the costs and challenges of working underserved areas; and financial incentives that steer younger professionals toward more lucrative specialties and higher-income areas.

Senators agreed on some strategies to boost numbers of health workers, such as encouraging more lower-cost educational options like community college and ensuring that existing programs are extended this year, such as the National Health Service Corps that trains doctors for underserved areas and graduate education programs.

A whiff of partisan thinking drifted into the conversation, with some Republicans focused more on decrying government interference in health care. Sen. Mitt Romney (R-Utah) suggested the State Department should do a better job clearing foreign students and practitioners to immigrate here. Cassidy raised electronic health records requirements as a contributor to physician burnout, saying they consume too much time. Even in those areas, there were signs lawmakers could agree. Sen. Tim Kaine (D-Va.) also raised the idea of unjamming the immigrant backlog.

Sen. Rand Paul (R-Ky.) said vaccine requirements were an impediment. Sen. Roger Marshall (R-Kan.) raised regulations barring some surprise medical bills as harmful to doctors.

“I think the fact that the committee has made this the first hearing means a number of us have bills. We may try to take a bunch of them up together and see if we can combine them into something,” said Kaine, pointing in particular to the idea of expanding loan forgiveness for people willing to go into areas with shortages. “I think there’s great prospects for bipartisan progress on this.”

Senators credited Sanders with the initial progress toward a compromise. He spent his first weeks in his post meeting with committee members from both parties to identify areas of bipartisan agreement.

Sen. Lisa Murkowski (R-Alaska) said Sanders reached out to meet with her and discuss her priorities. They both named workforce shortages as a top issue, she said, adding, “We’ve got good stuff to work on.”

“In my conversation with him just on the floor this week, about what we might be able to do with the workforce issue, I think he was kind of probing to see if we could put together some efforts to just focus on these on workforce shortages,” Murkowski told KHN. “There is a great deal of interest in legislating in this space.”

“What it’s going to look like, I can’t tell you yet,” she added. “We are going to produce legislation,” Sanders said as the hearing ended. “I don’t do hearings for the sake of hearings.”

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In what has become an almost yearly ritual, physician groups are arguing that patients will have greater difficulty finding doctors who accept Medicare if lawmakers allow the pay cuts to happen.

A more than 4,000-page draft government spending bill released by lawmakers early Tuesday morning proposed much smaller-than-planned cuts to Medicare payments. But the bill, which Congress hoped to pass by the weekend to keep the government funded and avert a shutdown, would not go as far as doctors wanted.

“Despite overwhelming bipartisan, bicameral support to stop the full Medicare physician payment cut, Congress failed once again to end the cycle of harmful Medicare cuts, showing a disregard for vulnerable seniors,” the Surgical Care Coalition, an organization representing surgeons and anesthesiologists, said in a statement.

The doctors’ lobbying campaign had gained traction on Capitol Hill. A bipartisan group of 115 House lawmakers in a letter to congressional leaders and President Joe Biden last week, urging them to prevent cuts that they argued would “only make a bad situation far worse” for Medicare patients.

In recent years, the Centers for Medicare & Medicaid Services scheduled the pay cuts to offset the cost of increasing payments for underpaid services, like primary care. Physicians also stand to see reductions tied to broad cuts implemented by Congress in recent decades to try to control government spending.

Some Republicans have pushed to wait on passing the spending package until their party controls the House of Representatives next year and can have a greater say over what they call out-of-control spending. One priority of the incoming House Republican majority is curbing Social Security and Medicare, a federal health insurance program for people age 65 and older, among others.

“We’re mortgaging our kids’ futures,” Sen. Ron Johnson of Wisconsin, a Republican on the Senate Budget Committee, told reporters, referring to overall spending. “This is killing us from a financial standpoint. It’s got to stop.”

Despite concerns about ballooning government spending, for years doctors have been successful in delaying or softening proposed pay cuts, arguing that there would be if the cuts kicked in.

Physicians carry a lot of political weight in Washington. The American Medical Association, the professional organization that represents and lobbies on behalf of physicians, has spent more than $460 million on lobbying since 1998, more than almost any other organization, .

Since the early 2000s, Congress has voted every year or two to delay or reverse plans to reduce Medicare payments to doctors. In 2015, Congress ended one measure that would have cut payments by 21%. Last year, Congress plugged a 3% hole.

If Congress is unable to pass the spending bill, physicians face a 4.5% cut in Medicare fees. Under the draft legislation released Tuesday, they would instead see about a 2% cut beginning Jan. 1. Other reductions — including a 4% cut under a congressional budget rule that balances spending and the expiration of a payment program that offered 5% bonuses — would be delayed further or reduced.

As in previous years, physicians have waged a frantic campaign to convince Congress that reducing the amount paid to care for Medicare patients would drive more doctors away from accepting them as patients at all.

Earlier this month, the American Medical Association signed by all 50 state medical associations, as well as that of the District of Columbia, arguing pay cuts would take a toll on doctors and patients.

“Burnout, stress, workload, and the cumulative impact of COVID-19 are leading one in five physicians to consider leaving their current practice within two years,” the letter said. “Payment cuts will only accelerate this unsustainable trend and undoubtedly lead to Medicare patients struggling to access health care services.”

, the costs of running a medical practice climbed 39% from 2001 to 2021, but Medicare payments to doctors, adjusted for inflation, dropped by 20% over that span.

“Running our businesses is more expensive than it was,” said Dr. Loralie Ma, a radiologist in the Baltimore suburbs, citing rising costs for expenses ranging from gauze and surgical tubing to salaries for office staff. “It’s very hard, and when Medicare does something like this, it decreases access, specifically for seniors.”

“There are patients looking for physicians they can’t get. They’re on Medicare, and physicians aren’t accepting new Medicare patients,” said Dr. Donaldo Hernandez, a physician based in Santa Cruz, California, who is president of the California Medical Association.

It is difficult to “break even” caring for Medicare patients under the current government rates, he said. “It just doesn’t make economic sense.”

An agency that advises Congress on Medicare matters has expressed concern about certain Medicare payments for primary care and has reported that, from 2015 through 2020, the number of primary care physicians treating Medicare beneficiaries dropped from 2.8 to 2.4 per 1,000 beneficiaries.

According to the Medicare Payment Advisory Commission (MedPAC), about 3% of Medicare beneficiaries surveyed in 2021 said they had looked for a new primary care provider in the previous year and had trouble finding one.

However, looking at a broader picture based on data from 2019 through 2021, “access to clinician services for Medicare beneficiaries appeared stable and comparable to (or better than) that for privately insured individuals,” MedPAC Chair Michael Chernew said in to members of Congress.

Gerard Anderson, a professor of health policy and management at Johns Hopkins University, said doctors’ objections to the scheduled pay cuts have a familiar ring.

“For 40 years I have heard providers argue that they will go out of business or not accept Medicare patients if … cuts go through,” Anderson said. “Medicare patients are still seeing their physicians, hospitals, and other providers 40 years later.”

For most doctors, fee-for-service payments from Medicare represent a small portion of their business, Anderson added. The rest can include payments from Medicare Advantage health plans, which have their own payment systems, and private insurers, he said.

Sen. Debbie Stabenow of Michigan, a top Senate Democrat, and Sen. John Barrasso of Wyoming, a top Senate Republican, in November signed by a bipartisan group of 44 other senators in November urging party leaders to block the looming cuts.

“We’d like very much to have a health package that would stop cuts and do some other policy changes that we need. It’s not agreed to yet, but I’d love to see it happen,” Stabenow said in an interview with KHN on Dec. 15.

Asked if she was optimistic, she said, “I think we have a reasonable chance.”

KHN Washington editor and correspondent David Hilzenrath contributed to this report.

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The Inflation Reduction Act to spend about $485 billion over 10 years on health and alternative energy programs while raising about $790 billion through tax revenue and savings. The difference would be used to help reduce the deficit.

On the health front, the legislation achieves two key goals of congressional Democrats. First, it would give the federal government the ability to negotiate prices of some drugs purchased by Medicare beneficiaries, a tool that has long been opposed by the drug industry. Second, it would extend the enhanced premium subsidies for people who buy insurance on the Affordable Care Act marketplaces that Congress put in place last year to help confront the covid-19 pandemic.

“It’s historic. Never before have we been able to negotiate prescription drug prices. This is something we’ve been fighting for [for] decades,” House Speaker Nancy Pelosi said this week. “I want more, of course — we always want more. But this is a great deal.”

The bill extends the enhanced subsidies, which will expire this year if they are not continued, through 2025. The 2021 covid relief bill boosted subsidies for those people who had already qualified for the aid and provided subsidies to some middle-income people who had found coverage to be too expensive. According to an , about 13 million people will see their premiums jump by more than half, on average, if the enhanced subsidies are not continued. And people who earn more than four times the poverty level will not be eligible for subsidies anymore, on top of seeing their premiums spike.

The subsidies’ extension is expected to cost about $64 billion.

The bill will also have a major impact on Medicare, including by allowing the program to negotiate prices for some of the most expensive drugs, capping beneficiaries’ out-of-pocket payments for drugs, limiting their insulin cost sharing to $35 a month, and barring drug companies from raising prices faster than inflation.

The drug pricing provision, estimated to save the government nearly $100 billion over 10 years, would require the U.S. Department of Health and Human Services to identify Medicare’s 100 most expensive drugs and then pick 10 for price negotiations starting in 2023. Those prices would take effect in 2026. Another 10 drugs would be added over the next two years, with the savings fully in effect by 2028.

The negotiations would apply first to drugs people get at the pharmacy, but in the later two years, drugs that people get in doctors’ offices could also be covered.

Some of the Medicare changes would kick in next year. One is the cap on price hikes. Under the bill, companies that raise the price of drugs sold to Medicare faster than inflation must pay rebates back to Medicare, generating an estimated $101 billion in savings for the government. The inflation protections will also apply to certain drugs, such as biologicals, that patients get in a doctor’s office.

New vaccine and insulin cost caps would also take effect in 2023. Under the bill, all vaccines recommended by the federal Advisory Committee on Immunization Practices will be fully covered by Medicare, as well as by Medicaid and the Children’s Health Insurance Program. For Medicare beneficiaries who need insulin, out-of-pocket costs would be capped at $35, and starting in 2026, the cap would be $35 or 25% of the negotiated price if that is lower.

Another big saver for Americans enrolled in Medicare would be a $2,000 cap on out-of-pocket drug costs, which would begin in 2025. According to Â鶹ŮÓÅ, for their drugs in 2019. According to an analysis by the Council for Informed Drug Spending Analysis based on data from 2012, about 3.5 million beneficiaries would likely save more than $1,500 a year.

Starting sooner, in 2024, people whose out-of-pocket drug costs reach the “catastrophic” threshold of $7,050 won’t have to pay any additional money on drugs that year. Currently, there is no cap, and people must pay 5% of the cost of extremely expensive drugs after hitting the threshold.

Also starting in 2024, Medicare would extend low-income subsidies to about 500,000 beneficiaries who earn between 135% and 150% of the poverty level ($18,347 to $20,385 for a single person). Premium hikes on drug plans would also be limited in 2024 to 6% for all beneficiaries through 2029.

The bill could have reached far more people, but Democrats’ attempts to slow the increase in drug prices and cap insulin copays outside of Medicare were blocked.

Because the bill is being passed on expedited procedures known as budget reconciliation, all the provisions must have a direct impact on federal spending or revenue. The Senate parliamentarian, who vets such measures, ruled that the insulin and inflation measures targeting the private insurance market were out of bounds. Democrats tried to add back the broader-market insulin cost caps but fell of the 60 needed to do so, with only seven Republicans joining them.

Senate Majority Leader Chuck Schumer pledged to hold another vote on expanding the insulin cost cap in the fall.

Still, some analysts see reasons to believe that most Americans not directly affected by the bill will see some benefits, particularly from the limits on drug price increases and the Medicare drug price negotiations.

In a conference call with reporters Thursday, Sean Dickson of the nonprofit pointed to the government’s 340B program, in which drug companies are required to provide discounts to certain care providers and in which there are inflation penalties. He estimated that Medicare alone indirectly because of those inflation restraints.

“There was a spillover effect from the subsection of a government program that had an inflation penalty,” Dickson said. “That resulted in lower costs for everyone who used those drugs and slower price growth.”

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Along the way, Le Roy would lose the job he loved as a Texas state trooper and take his fight all the way to a Supreme Court victory. He would be rushed to the emergency room hundreds of times, be denied health benefits by the Department of Veterans Affairs for years, attempt suicide, and seek experimental cures for the damage done to his lungs and brain.

Amid all that, Le Roy and Rosie founded an organization to help others and push Congress to fix the laws that allowed the suffering of veterans to go on, and ultimately enlist people like comedian and activist Jon Stewart, who helped them win a dramatic showdown in the Senate last week.

Their struggle will never really be over. But the Torreses’ campaign to make sure no other veterans experience what they had to ends Aug. 10, when they are set to join President Joe Biden as he signs a law to guarantee that 3.5 million American warriors exposed to similar hazards can get care.

“I mean, to think that 13 years ago we were walking the halls [of Congress] — it’s really emotional,” Rosie said recently, halting to collect herself and wipe back tears, “because I think of all the people that died along the way.”

The bill provides a new entitlement program for veterans who served in a combat zone in the past 32 years. If they are diagnosed with any of 23 conditions identified in the legislation — ranging from specific cancers to breathing ailments — they would be deemed automatically eligible for health coverage. The Congressional Budget Office estimated the new benefits would cost $280 billion over the next 10 years.

Most veterans — — who start experiencing symptoms after leaving the service get denied what’s known as a service connection when they seek help from the VA. The system has been designed to disbelieve them, the veterans complain. They must prove their breathing problems or cancers came from the toxic trash smoke they breathed overseas, which is extremely difficult.

When Le Roy returned home from Balad Air Base — the second-largest U.S. post in Iraq and where the military incinerated tons of debris daily, including plastic, ammunition, and medical waste — he was already sick. He was rushed to the hospital a few weeks later with a severe respiratory infection.

He had expected to keep working as a state trooper, but by 2010 it was clear he couldn’t perform all the duties because of his illness. When he asked for a different job with the Texas Department of Public Safety, he was denied. He was told he had to resign if he wanted to apply for medical retirement. The retirement request was then rejected. So he sued and eventually took the case to the Supreme Court, which in June ruled that from such lawsuits by service members.

In those early years, the military and VA doctors couldn’t say what caused his breathing problems and splitting headaches. As with other victims of toxic exposure, diagnoses proved to be difficult. Some doctors suggested the problems weren’t real — a pronouncement often encountered by other vets whose claims are denied.

Like so many others, Rosie turned to the internet for information she couldn’t get from the VA, where she had worked for 23 years. She discovered a Facebook group that she would use as the basis for a new advocacy group, Burn Pits 360.

Le Roy was ultimately diagnosed with constrictive bronchiolitis, fibrosis of the lungs, and toxic encephalopathy. He eventually got his benefits in early 2013. By then, the family was deep in debt.

For years he lived with the reality that the military he had served for 23 years refused to answer his needs, and the police force he loved didn’t seem to care.

“It’s something that we have now learned is known as moral injury and compound loss,” Rosie said.

As a man, he began to wonder how he could provide for his family, if he was any use to anyone, she added. “So then that led to him attempting to take his life.”

It also led the couple and parents of three to beseech Congress to fix the problems. They started walking the halls in the Capitol. Success there was not any easier.

“We came to Capitol Hill and just handed out information we had printed about burn pit exposure,” Le Roy said at his last visit to the Hill in June, an oxygen tube strung under his nose.

“There were a lot of doors shut in our face,” Rosie said.

While making little progress in Congress, they built Burn Pits 360 into an advocacy group and a clearinghouse to help other veterans similarly frustrated by a system that seemed to be failing them.

The breakthrough for Rosie began when she saw Stewart and 9/11 survivors’ advocate John Feal winning a similar battle to make Congress fully fund health and compensation programs for responders of the Sept. 11, 2001, terror attacks. She recalls reading up on the toxic substances in the dust and smoke that spewed from the collapsed twin towers and discovering they were remarkably similar to the poisons inhaled by troops near the waste fires that were also set ablaze with jet fuel.

She called Feal. Feal called Stewart, and by February 2019 the four of them were meeting on Capitol Hill with lawmakers, including Sen. Kirsten Gillibrand (D-N.Y.), one of the authors of the 9/11 legislation.

The key, they decided in those first meetings, was to remove the obstacles for the most common illnesses and eliminate the burden of proof on ill former soldiers. Gillibrand’s office wrote that bill, along with Rep. Raul Ruiz (D-Calif.), who championed it in the House.

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Ultimately, that bill became the heart of the measure that passed, known as the PACT Act and named for a soldier who died from cancer linked to his service.

“Our bill was the first federal presumption for burn pits coverage ever. And that was all because of Rosie and Le Roy,” said Gillibrand.

But just as with the 9/11 legislation, many in Congress weren’t that interested.

“It’s about money, and nobody likes to spend money,” Gillibrand said. “Congress never wants to accept the fact that treating these veterans and addressing their health care is the cost of war.”

Weeks ago, the bill appeared ready to glide through. It passed both the House and Senate but needed another vote to fix a technical legislative issue. Then on July 27, Sen. Pat Toomey (R-Pa.), who opposed the measure, unexpectedly persuaded 25 of his Republican colleagues who had supported the bill to vote against it, claiming that because the bill made the spending mandatory — not subject to the annual whims of Congress — Democrats would spend $400 billion elsewhere in the budget. Democrats countered that the money Toomey cited is already being spent and, regardless of how it’s categorized, it’s still up to Congress to appropriate it.

Rosie and veterans who had come to the Capitol that day to celebrate instead had to dig in one more time, with Stewart bringing the high-wattage attention that led the Republicans to reconsider. On Aug. 2, most Republicans decided to agree with the Democrats, and the bill passed 86 to 11.

Rosie said it never would have happened without Feal and Stewart. Stewart said it was all about Rosie, bringing together veterans in a way that Congress couldn’t ignore.

“She’s the reason I’m doing it, her and Le Roy,” Stewart said, standing outside the Capitol with Rosie the day before the vote.

Stewart, the Torreses, and untold other veterans tempered their joy with the warning that it will be a hard journey making the new program work with a VA that already has a massive backlog. The legislation has provisions to create facilities and bring in private doctors, but some vets remain dubious.

of Long Beach, California, was diagnosed with neck and throat cancer soon after returning from Iraq in 2006. He had been assigned to patrol one of the many burn pits. He eats and breathes through tubes and struggles to keep weight on. Radiation and a tracheostomy have left his voice almost inaudible.

“You can pass laws, but it all boils down to the VA. How are they going to implement the changes? The claims, the compensation, the treatment,” he asked in June. “And how long will it take?”

For the time being, though, Rosie said that even more than a visit to the White House, she was looking forward to going back to Texas and her family.

“You know, I lost 13 years away from my children, with trips to the hospital, coming to D.C.,” she said. “It means I can go home.”

Le Roy and Rosie can also reflect that as painful as this path has been, 3.5 million veterans are guaranteed a backstop because of this law, and thousands of veterans and active-duty service members who work for state and local governments now have recourse if they are fired after being injured at war.

“It is good to know that so many people will be helped,” Le Roy said from his home in Robstown, Texas. “It does help.”

KHN reporter Heidi de Marco contributed to this article.

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A similar proposal died in December when Sen. Joe Manchin (D-W.Va.) decided to oppose Biden’s $1.9 trillion Build Back Better bill, which also included provisions allowing for Medicare drug negotiations.

Reining in drug costs has long been wildly popular with the public, with of Americans in support of steps such as allowing Medicare to negotiate and placing caps on drug price inflation.

revealed Wednesday would do both, as well as limit annual out-of-pocket drug costs for Medicare beneficiaries to $2,000, make vaccines free for people on Medicare, and provide additional help for lower-income seniors to afford their drugs.

The heart of the bill is the negotiation provisions. Under the legislation, Medicare could start the new pricing procedures next year, with the secretary of Health and Human Services identifying up to 10 drugs subject to bargaining. The resulting prices would go into effect in 2026. As many as 10 additional drugs would follow by 2029.

Expert observers said the plan was both politically impressive, considering the competing interests at stake, and important for consumers in Medicare — the federal health insurance program for older adults and some people with disabilities — and beyond.

“They did an amazing job of threading the needle to get all 50 [Democratic] senators. I mean, it was a herculean task to get everybody on board on this,” said , a professor at the Johns Hopkins Bloomberg School of Public Health.

Several Democrats in the House and Democratic Sen. Kyrsten Sinema of Arizona had balked at earlier versions of the drug provisions in the defunct Build Back Better bill, threatening to oppose them or the bill. They agreed with drug industry arguments that limiting profits would stifle drug innovations. Eventually, most Democrats coalesced around a version of the Build Back Better bill. When asked about the bill revealed Wednesday, a spokesperson for Sinema did not comment directly but pointed to the of the final Build Back Better provisions.

Although negotiations between Medicare and manufacturers would focus on a maximum of 20 drugs, they could easily have an outsize impact, Anderson said. “A relatively small number of drugs are responsible for a large portion of [Medicare] Part D spending, and if they tackle those, they will do a significant job of controlling drug prices,” he explained.

The bill also would require drug companies to pay rebates if they raise prices too swiftly. “If this bill becomes law, it would be a clear win for people with Medicare and private insurance,” since prices would be prevented from increasing more than inflation, said , executive director of Â鶹ŮÓÅ’s Program on Medicare Policy.

The lobbying and public policy agency for the drug industry, PhRMA, criticized the bill, saying its provisions are worse than those in the original Build Back Better legislation. , PhRMA’s executive vice president of public affairs, about innovation and said the Democratic plans “went from bad to worse for patients.”

“Democrats weakened protections for patient costs included in previous versions, while doubling down on sweeping government price-setting policies that will threaten patient access and future innovations,” DeShong said in a statement. She appeared to be referring to the elimination of a Trump administration rule that would have sent drug rebates directly to consumers, at a cost of hundreds of billions of dollars to the government, and to other items not in the new bill, like caps on insulin costs.

However, policy summaries that were used by Democrats writing the bill and shared by Democratic staffers — on the condition that they not be published — suggested that Democrats believed that ending pricing monopolies on 15- and 20-year-old drugs would spur innovation by encouraging companies to develop new drugs.

Advocates for reform also hailed the work. “Big Pharma has made money off of gimmicks and abuses for years while consumers have suffered the consequences,” said Frederick Isasi, executive director of Families USA. “This reform would help make sure when companies profit, they do it because they are innovating and serving their customers, not hiring the best lawyers and lobbyists.”

Senate Majority Leader Chuck Schumer hopes to pass the bill by the end of July, but the path to that goal could be rambling.

Schumer intends to pass the bill through a process known as budget reconciliation. Under reconciliation, bills can move on an expedited basis, avoiding a Senate filibuster. Democrats could approve the measure with the support of all 50 Democratic senators and the tie-breaking vote of Vice President Kamala Harris.

The caveat is that reconciliation bills must have a connection to budgets and must pass muster with the Senate parliamentarian. On Wednesday, Schumer’s office delivered the Medicare bill to Parliamentarian , who could strike portions of it.

Since Democrats have considered these provisions before, they are not expecting large changes. However, caps on drug prices are only one part of what they hope to have in the reconciliation bill. Schumer is still negotiating with Manchin to come up with elements that address climate change, energy production, and taxes. Exactly what those provisions turn out to be could affect the bill’s reception in the House, where progressives have been angered by Manchin’s stances.

At the very least, advancing the drug bill would make some other Democratic goals easier to achieve, since it would save the federal government a lot of money, which could then be applied to other programs. Although new estimates are not yet available, drug provisions carried over from the older Build Back Better proposal were estimated to reduce federal spending by .

And with Democrats facing a grim midterm election this fall, they have good reason to unite around the popular drug-related measures. “I think the pressure is on for the Democrats to deliver,” Anderson said.

Senate Minority Leader Mitch McConnell has already other pieces of legislation if Democrats proceed with the reconciliation process, but he can do little to stop the drug-pricing bill if the 50 Democratic senators remain united. The most that Republicans could reasonably hope for is to offer amendments. Under reconciliation, each side is guaranteed votes on numerous amendments.

Democrats and some advocacy groups would like lawmakers to use the reconciliation bill to address other health-related issues, such as extending the enhanced premium subsidies for coverage bought on the Affordable Care Act marketplaces and expanding coverage for low-income residents of states that have declined to expand Medicaid under the ACA.

“We expect additional legislation to be released shortly that reinvests the savings from ending drug company abuses,” said Families USA’s Isasi. “Taken together, these reforms will be an historic opportunity to create affordable health care and economic security for families.”

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Y podría, si recibe tres órganos de trasplantes… y el sistema de inmigración de Estados Unidos no se lo impide.

En un caso que refleja las fallas significativas y a menudo desgarradoras del sistema, los Espinosa se enfrentan no solo al complicado y costoso laberinto de la atención médica de la nación, sino también a un sistema de inmigración que el Congreso no ha reformado durante décadas.

Esa realidad caótica amenaza la vida de una niña estadounidense.

Julia nació en Miami cuando sus padres asistían a la universidad con visas de estudiante. Nació con un defecto congénito llamado , un torcido, y los médicos la salvaron de bebé al extraerle la mayor parte del.

Como nunca ha podido comer de manera normal, Julia ha sobrevivido gracias a infusiones diarias de nutrientes cuidadosamente elaboradas, que ingiere a través de un colocado en su pecho, explicó Espinosa.

Es una atención extremadamente costosa y especializada que, según Espinosa, Julia no podría obtener en Ecuador, a donde planeaban regresar.

En cambio, la familia se mudó a Seattle hace 10 años para estar cerca del Seattle Children’s Hospital, donde los especialistas pueden manejar bien las necesidades nutricionales de Julia. Aún así, obtener nutrición a través de infusiones no es algo para lo que el cuerpo humano esté diseñado, y el proceso ha dañado sus órganos.

Julia está en las listas de trasplantes para intestino delgado, y para reemplazar su hígado y páncreas deteriorados.

La salud de su hija ya es desafiante, pero Espinosa y su esposa, María Sáenz, enfrentan una lucha adicional: una batalla continua con las autoridades de inmigración para permanecer y trabajar legalmente en el país.

Por segunda vez en tres años, Espinosa enfrenta la posibilidad de perder su permiso de trabajo, lo que le costaría no solo su empleo como proveedor de soporte técnico en una empresa de software, sino también su seguro médico. Sin cobertura, su hija perdería su elegibilidad para trasplantes.

“Dependemos del seguro de salud para mantenerla en la lista de trasplantes”, dijo Espinosa. “Si no puedo mantener mi seguro, es posible que mi hija no sea elegible para un trasplante”.

Espinosa es consciente de su precaria posición y actuó pronto para renovar su estatus migratorio, lo que se conoce como acción médica diferida. Es una categoría en la que el gobierno posterga una deportación para que la persona pueda lidiar con una enfermedad grave.

Las personas que tienen una acción diferida también pueden solicitar un permiso de trabajo. Espinosa solicitó renovar su acción diferida en noviembre, a pesar de que su prórroga actual está vigente hasta finales de julio.

Sin embargo, no recibió noticias de Inmigración hasta hace poco, y la aprobación se produjo solo después de consultas a la agencia por parte de miembros del Congreso y de un reportero.

Así y todo, la familia aún no puede descansar tranquila. La solicitud de Espinosa para un nuevo permiso de trabajo aún no ha sido aprobada. Todavía puede perder su trabajo y seguro a fines de julio si el nuevo permiso no llega a tiempo.

Un vocero del Seattle Children’s Hospital informó que trabajarían con los Espinosa para cuidar a Julia si su seguro vence, aunque es posible que su lugar en la lista de trasplantes deba suspenderse, lo que dejaría a Espinosa ante opciones como Medicaid.

Incluso con la incertidumbre actual (una brecha en la cobertura podría resultar catastrófica), Espinosa dijo que tiene más esperanzas que hace una semana, ya que los permisos de trabajo generalmente se otorgan con el estatus de acción diferida.

Y la incertidumbre es algo a lo que Espinosa se ha acostumbrado en un país donde parece no haber un sistema racional para ayudar a las familias migrantes que enfrentan crisis de salud.

“El problema es que no hay un marco legal”, dijo Espinosa. “La acción diferida no es una visa, es solo una decisión del gobierno de no deportar”.

Si los médicos pueden mantener viva a Julia, la familia enfrentará la misma perspectiva aterradora de perder el estatus legal cuando este nuevo aplazamiento finalice en dos años.

No está claro cuántas otras familias enfrentan circunstancias similares. Katie Tichacek, vocera de la agencia de ciudadanía, no proporcionó datos, y no hay estadísticas disponibles públicamente.

después de que legisladores de Massachusetts los solicitaran en 2020 revelaron que, en 2018, hubo más de 700 solicitudes de acción diferida por razones médicas. Menos de la mitad fueron aprobadas.

Fue entonces cuando Julia enfrentó la primera amenaza contra su vida relacionada con la inmigración. En ese momento, la administración Trump suspendió todas las acciones médicas diferidas. Enfrentando demandas y protestas públicas, la administración cedió, pero Espinosa no pudo trabajar legalmente durante un año y medio.

Sin embargo, no todo ha sido tristeza. La familia ha manejado la condición de Julia para que asista a la escuela, pueda viajar y realizar actividades que le gustan.

“Hemos tratado de vivir al 100%, porque hasta ahora hemos tenido la suerte de tener a Julia”, dijo Espinosa. “Siempre nos han dicho que es posible que no lo logre. Originalmente fue el primer mes de su vida, luego fue el primer año, y luego dos años, y luego el siguiente período”.

Han vencido todo pronóstico haciendo todo lo que está a su alcance. Lo que no pueden controlar es la burocracia federal.

Incluso algunas de las cosas que están bajo su control, como elegir dónde vivir para darle a Julia la mejor oportunidad, pueden ser problemáticas. Espinosa dijo que algunos otros estados y regiones del país pueden tener una mayor disponibilidad de órganos. Mientras Julia se mantenga estable, quedarse donde están tiene más sentido. Sería diferente si el hígado de Julia siguiera deteriorándose.

Mahsa Khanbabai, miembro de la junta de la American Immigration Lawyers Association, dijo que el problema que enfrentan Espinosa y otras personas con necesidades obvias es que los Servicios de Ciudadanía e Inmigración están abrumados, con una burocracia y sin fondos, no están a la altura de la tarea.

“Este es un muy buen ejemplo de un sistema roto”, dijo Khanbabai. “Podría solucionarse fácilmente con una reforma migratoria”.

Tichacek dijo en un comunicado que la agencia no comenta sobre casos específicos, pero agregó que “está comprometida a promover políticas y procedimientos que protejan a los más vulnerables”, y que está trabajando arduamente para reconstruir la confianza con los inmigrantes y ampliar el acceso a servicios vitales.

Espinosa es muy consciente de que incluso con la atención de los medios, la asistencia legal y la ayuda de legisladores, su familia aún podría pasar desapercibida. No sabe qué podría pasar entonces, pero, como dijo: “haré todo lo necesario para salvar a mi hija”.

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And she might, if she can get three organs transplanted — and if the U.S. immigration system doesn’t get in the way.

In a case that reflects the significant and often-heartbreaking failures in how the U.S. welcomes newcomers to the country, the Espinosas are confronting not just the nation’s complicated and expensive health care maze, but an immigration system that Congress has not reformed for decades. Despite calls for coherent reform, immigration policy has been largely set through scattershot legislation and whipsawing administrative actions, often modified by the courts.

That chaotic reality is threatening an American girl’s life.

Julia was born in Miami when her parents were attending college on student visas. She had a birth defect , a twisted , and doctors saved her as a baby by removing most of the organ. Never able to eat normally, Julia has survived by getting carefully crafted daily infusions of nutrients through an in her chest, Espinosa said.

It’s extremely expensive and specialized care that Espinosa said Julia could not get in his home country of Ecuador, where they had planned to return. Instead, the family moved to Seattle 10 years ago to be near Seattle Children’s Hospital, where specialists can manage Julia’s nutritional needs well. Still, getting nutrition through infusions is not something the human body was designed for, and it has done damage to her internal organs. She is on transplant lists for the small intestine she lost at birth, and to replace her deteriorating liver and pancreas.

Their daughter’s health circumstances would be challenging enough, but Espinosa and his wife, Maria Saenz, face an additional struggle — an ongoing battle with immigration authorities to stay and work in the U.S. legally.

For the second time in three years, Espinosa faces the prospect of losing permission to work, which would cost him not only his job providing tech support at a software company, but also his health insurance. Without health insurance, his daughter would lose her eligibility for transplants.

“We are relying on the current health insurance to keep her on the transplant list,” Espinosa said. “If I cannot keep my health insurance, then my daughter might not be eligible for a transplant.”

Espinosa is acutely aware of his precarious position, and acted early to renew his immigration status, known as medical deferred action. It’s a category in which the government says it will defer trying to deport someone so they can deal with a severe illness. People who have action deferred can also apply for a work permit. Espinosa applied to renew his deferred action in November, even though his current deferment was good until the end of July.

He heard nothing back from U.S. Citizenship and Immigration Services, however, until just recently, and the approval came only after inquiries to the agency from members of Congress and a reporter.

The family still can’t rest easy, though. Espinosa’s application for a new work permit has not yet been approved. He can still lose his job and insurance at the end of July if the new permit is not granted in time, which is far from a certainty.

A spokesperson for Seattle Children’s Hospital indicated officials there would work with the Espinosas to care for Julia if there is a lapse in her insurance, though her place in line on the transplant lists might have to be put on hold, leaving Espinosa to scramble for backup options like Medicaid.

Even with the remaining uncertainty — a long gap in coverage could still prove catastrophic — Espinosa said he is much more hopeful than he was just a week earlier, since work permits generally are granted with deferred action status. And uncertainty is something Espinosa has gotten used to in a country where there seems to be no rational system to deal with migrant families facing health crises.

“The problem is that there is no legal framework behind what I have,” Espinosa said. “Deferred action is not a visa, it’s just a decision from the government not to deport.”

If doctors can keep Julia alive, the family will face the same frightening prospect of losing legal status when this new deferral ends in two years.

Exactly how many other families face similar circumstances is not clear. Katie Tichacek, a spokesperson for the citizenship agency, would not provide data showing how often such cases arise, and no statistics are publicly available. Data after Massachusetts lawmakers asked for it in 2020 said that there were more than 700 requests nationwide for deferred action for medical reasons in 2018 and that fewer than half were approved. Those numbers plummeted in 2019.

That was when Julia faced the first immigration-related threat to her life. At the time, the Trump administration suspended all medical deferred action. Facing lawsuits and a public outcry, the administration relented, but Espinosa couldn’t work legally for a year and a half. Working off the books could have put him in further jeopardy. He said they survived on “mercy and family support” from relatives in Ecuador.

It hasn’t been a life of gloom and doom, though. The family has managed Julia’s condition so that she goes to school when there are no pandemic restrictions, they travel, and she pursues her interests. Aside from being unable to survive by eating, she’s like any other girl.

“We’ve tried to live 100%, because we’ve been lucky to have Julia so far,” Espinosa said. “We’ve been always told that she might not make it. It was originally the first month of her life, then it was the first year, and then it’s two years, and then the next whatever period.”

They’ve beaten the odds by doing anything and everything that is in their control. What isn’t in their control is the federal bureaucracy. “We’re here still, but, yeah, we have to fight immigration,” Espinosa said.

Even some of the things that are in their control, like choosing where to live to give Julia the best shot, can be problematic. Espinosa said some other states and regions of the country tend to have greater availability of organs. While Julia remains stable, staying where they are makes the most sense. The calculus would change if the deterioration of Julia’s liver were to accelerate.

“If that is the case, then we have to contemplate how are we going to be treated in these other states,” Espinosa said. “Like for example, getting a simple thing like your driver’s license, it’s not that simple when you have deferred action.”

Mahsa Khanbabai, a board member for the American Immigration Lawyers Association, said the problem that Espinosa and other people in obvious need face is that Citizenship and Immigration Services is overwhelmed. An increasingly centralized and underfunded bureaucracy is not up to the task. “This is a very good example of a broken system,” Khanbabai said, noting that many more people are in less dramatic but similar situations. “There’s just a lot of heartbreak that could easily be fixed with immigration reform.”

Tichacek said in a statement that the agency does not comment on specific cases but that it “is committed to promoting policies and procedures that protect those most vulnerable” and is working hard to rebuild trust with immigrants and expand access to vital immigration services.

Espinosa is all too aware that even with media attention, legal assistance, and help from lawmakers, his family could still fall through the cracks. He doesn’t know what could happen then, but he will use whatever tools he can to save his child.

“I don’t know what I’ll need, and I’ll do whatever it takes,” he said.

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The Senate could start work as soon as this week on a bipartisan bill, called the Honoring Our PACT Act, that passed the House of Representatives in March. It would make it much easier for veterans to get health care and benefits from the Veterans Health Administration if they get sick because of the air they breathed around massive, open-air incineration pits. The military used those pits in war zones around the globe — sometimes the size of football fields — to burn anything from human and medical waste to plastics and munitions, setting it alight with jet fuel.

As it stands now, more than for cancer, breathing disorders, and other illnesses that they believe are caused by inhaling poisonous burn pit smoke have their claims denied, according to estimates from the Department of Veterans Affairs and service organizations.

The reason so few are approved is that the military and VA require injured war fighters to prove an illness is directly connected to their service — something that is extremely difficult when it comes to toxic exposures. The House’s PACT Act would make that easier by declaring that any of the 3.5 million veterans who served in the global war on terror — including operations in Afghanistan, Iraq, and the Persian Gulf — would be presumed eligible for benefits if they come down with any of 23 ailments linked to the burn pits.

Although 34 Republicans voted with Democrats to pass the bill in the House, only one Republican, Sen. Marco Rubio of Florida, has signaled support for the measure. At least 10 GOP members would have to join all Democrats to avoid the threat of a filibuster in the Senate and allow the bill to advance to President Joe Biden’s desk. Biden called on Congress to pass such legislation in his State of the Union address, citing the death of his son Beau Biden, who served in Iraq in 2008 and died in 2015 of glioblastoma, a brain cancer included on the bill’s list of qualifying conditions.

Senate Republicans are raising concerns about the measure, however, suggesting it won’t be paid for, that it is too big, too ambitious, and could end up promising more than the government can deliver.

The Congressional Budget Office estimates the bill would cost more than $300 billion over 10 years, and the VA already has struggled for years to meet surging demand from troops serving deployments since the 2001 terror attacks on America, with a running into the hundreds of thousands. Besides addressing burn pits, the bill would expand benefits for veterans who served at certain nuclear sites, and cover more conditions related to Agent Orange exposure in Vietnam, among several other issues.

While the bill phases in coverage for new groups of beneficiaries over 10 years, some Republicans involved in writing legislation about burn pits fear it is all too much.

Sen. Mike Rounds (R-S.D.), a member of the Veterans’ Affairs Committee, summed up the concern as stemming from promising lots of assistance “that might look really good,” but the bottom line is that those “who really need the care would never get into a VA facility.”

Sen. Thom Tillis (R-N.C.), another member of the panel, agreed. “What we’re concerned with is that you’ve got a backlog of 222,000 cases now, and if you implement, by legislative fiat, the 23 presumptions, we’re gonna go to a million and a half to two and a half million backlog,” he said. Tillis has advanced his own would leave it to the military and VA to determine which illnesses automatically were presumed to be service-connected. That tally is likely to cover fewer people. “So the question we have is, while making a new promise, are we going to be breaking a promise for all those veterans that need care today?”

Republicans have insisted they want to do something to help veterans who are increasingly getting sick with illnesses that appear related to toxic exposure. About 300,000 veterans have signed up with the VA’s .

Sen. Jerry Moran from Kansas, the top Republican on the Veterans’ Affairs Committee, held a in February with Sen. Jon Tester (D-Mont.), the committee chairman, advocating a more gradual process to expand access to benefits and define the illnesses that would qualify.

The event was designed to show what would easily gain bipartisan support in the Senate while the House was still working on its bill.

Veterans’ service organizations, which try to avoid taking partisan positions, have praised such efforts. But they’ve also made clear they like the House bill. More than 40 of the groups endorsed the PACT Act before it passed the lower chamber.

Aleks Morosky, a governmental affairs specialist for the Wounded Warrior Project, plans to meet with senators this month in hope of advancing the PACT Act.

“This is an urgent issue. I mean, people are dying,” Morosky said.

He added that he believes some minor changes and input from the VA would eliminate the sorts of problems senators are raising.

“This bill was meticulously put together, and these are the provisions that veterans need,” Morosky said. “The VA is telling us that they can implement it the way they’ve implemented large numbers of people coming into the system in the past.”

He pointed to the recent expansion of and to VA Secretary Denis McDonough’s testimony to the Senate Veterans’ Affairs committee in March. McDonough the legislation but said the VA would need new leasing authority to ensure it had adequate facilities, as well as more say over adding illnesses to be covered.

Senate Republicans are not so sure about the VA’s ability to absorb such a large group of new patients. Tillis and Rounds suggested one solution would be to greatly expand the access to care veterans can seek outside the VA. They pointed to the Mission Act, a law passed in 2018 that was meant to grant veterans access to private health care. Some critics say it has not . It’s also been expensive, requiring from Congress.

“You better think about having community care — because there’s no way you’re going to be able to ramp up the medical infrastructure to provide that purely through the VA,” Tillis said.

Tester said in a statement that the committee was working on McDonough’s requests — and could have a modified bill for a vote before Memorial Day.

“In addition to delivering historic reform for all generations of toxic-exposed veterans, I’m working to ensure this legislation provides VA with additional resources and authorities to hire more staff, establish new facilities, and make critical investments to better ensure it can meet the current and future needs of our nation’s veterans,” Tester said.

Whether or not those changes satisfy enough Republicans remains to be seen.

Sen. Kirsten Gillibrand (D-N.Y.), who chairs the Armed Services subcommittee on personnel and earlier wrote a burn pits bill, said neither cost nor fears about problems on implementation should get in the way of passing the bill. Her proposal was incorporated into the House’s PACT Act.

“To deny service because of a lack of resources or a lack of personnel is an outrageous statement,” Gillibrand said. “We promised these men and women when they went to war that when they came back, we would protect them. And that is our solemn obligation. And if it needs more resources, we will get them more resources.”

She predicted Republicans would come along to help pass a bill.

“I’m optimistic, actually. I think we just need a little more time to talk to more Republicans to get everybody on board,” she said.

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