Dr. Mahendra Patel, a pediatric cancer doctor, has begun giving away medications to some of his young patients, determined not to disrupt their treatments for serious illnesses like leukemia. He's worried Congress will fail to renew funding soon for a health program that pays for the care of millions of children across the country.
In his 35 years of practice, Patel, of San Antonio, has seen the lengths to which parents will go for their critically ill children. He has seen couples divorce just to qualify for Medicaid coverage, something he fears will happen if the Children's Health Insurance Program is axed. "They are looking at you and begging for their child's life," he said.
The months-long failure on Capitol Hill to pass a long-term extension to CHIP, which provides health coverage to 9 million lower-income children, portends serious health consequences for many of them.
About 1.7 million children in 20 states and the District of Columbia could be at risk of losing their CHIP coverage in February because of the funding shortfall, according to a report released Wednesday by the Georgetown University Center for Children and Families.
Treatment plans for serious diseases can span months, leaving some doctors, like Patel, to jury-rig solutions in case CHIP falls through. The challenges are particularly great for kids with chronic or ongoing illnesses like asthma or cancer.
Dr. Joanne Hilden, a pediatric cancer physician in Aurora, Colo., and past president of the American Society of Pediatric Hematology-Oncology, said the families of cancer patients who depend on CHIP are in a difficult position because they can't schedule care to be finished before program funding runs out.
A San Antonio pediatrician, Dr. Carmen Garza, is advising parents to be sure to keep their children's asthma medications and other prescriptions current and to fill any refills they can so that they have vital medicines if CHIP expires.
Federal funding for CHIP originally expired Oct. 1. In December, Congress provided $2.85 billion to temporarily fund the program. That money was supposed to help states get through at least March, but it's coming up short.
The Centers for Medicare & Medicaid Services last week said it couldn't guarantee funding to all states past Jan. 19.
A few states, including Louisiana and Colorado, plan to use state funds to make up for the lack of federal money. It's a drastic step, since the federal government pays, on average, nearly 90 percent of CHIP costs.
Most states can't afford to make up the difference and will have to freeze enrollment or terminate coverage when their federal funding runs dry. Virginia and Connecticut, for instance, can promise to keep their CHIP program running only through February, officials said.
The largest states seem to be in the best shape, though even they can guarantee only a few months of care. Florida, California and Texas officials said they have enough CHIP funding to last through March. New York officials said they have enough money to last until at least mid-March.
Before Congress passed the short-term funding fix in late December, CHIP programs survived on the states' unspent funds and a $3 billion pool of CHIP money controlled by CMS.
Republicans and Democrats on Capitol Hill say they want to continue CHIP, but they have been unable to agree on how to fund it. The House plan includes a controversial provision — opposed by Democrats — that takes millions of dollars from the Affordable Care Act's Prevention and Public Health Fund and increases Medicare premiums for some higher-earning beneficiaries.
The Senate Finance Committee reached an agreement to extend the program for five years but didn't unite on a funding plan.
But two key Republican lawmakers — Sen. John Cornyn of Texas, who is part of the Senate leadership, and Rep. Greg Walden of Oregon, who chairs the House Energy and Commerce Committee — told reporters Wednesday that they think an agreement is close.
Alabama and Utah are among the states unsure how long their federal CHIP funding will last, according to interviews with state officials. Part of the problem is they haven't been told by CMS how it will disburse money from the agency's so-called redistribution pool. Under the pool's restrictions, states with extra money would have to give it to states that are running low.
Although hospitals, doctor groups and child health advocates have been sounding the alarm about CHIP for months, the Trump administration has kept quiet, saying only that it's up to Congress to renew the program.
When Marina Natali's younger son broke his arm ice-skating in 2017, she didn't have to worry about paying for so much as a doctor's visit: CHIP footed all the medical bills.
If that accident happened later this year, though, Natali, 50, of Aliquippa, Pa., might be scrambling. She can't afford private coverage for her two children on her dental hygienist pay.
"It's creating a lot of anxiety about not having insurance and the kids getting sick," she said.
Dr. Todd Wolynn, a Pittsburgh pediatrician, said families are reacting with "fear and disbelief" to CHIP's uncertain future. The group practice hasn't changed any scheduling for CHIP patients, but he said "families are terrified" about the coverage disappearing.
Pennsylvania officials notified CHIP providers in late December — who then informed enrollees — that the state would have to end the program in March unless Congress acts.
"These families don't know if the rug is being pulled out from them at any time," he said.
Dr. Dipesh Navsaria, a Madison, Wis., pediatrician and vice president of the state's chapter of the American Academy of Pediatrics, worries that many parents will be surprised if their children are suddenly without coverage. They may not know that the state-branded programs they use, such as BadgerCare Plus in Wisconsin, Healthy Kids in Florida and All Kids in Alabama, are all part of CHIP.
Ariel Haughton of Pittsburgh said she's upset her federal lawmakers have left CHIP in flux for her two children and millions of kids around the country. "They seem so cavalier about it," she said.
If Pennsylvania cancels CHIP, she likely won't bring Javier, 2, for his two-year checkup unless there's something clearly wrong with him. "We will have to decide between their health and spending the money on something else," she said.