I Am Totally Burned Out’: Patients Watch Health Care Debate With Dread

The New Tork Times The New Tork Times

Ever since the November election, when the fate of her family’s health coverage was suddenly up for grabs, Meghan Borland has been consumed by each twitch and turn of the political debate. She has gone to protests, met with her congressman, lost sleep, shed tears.

“My emotions are like a Ping-Pong ball being bounced back and forth between the players,” said Mrs. Borland, who, with her husband, owns a karate school in Pleasant Valley, N.Y., and whose younger daughter, Amelia, 2, is receiving chemotherapy for leukemia.

“For months it’s been: ‘Here’s a bill, we’ll vote. No, we won’t. Now it will change. Maybe not. Will that one person vote or not?’ Except that for us, this is not a game.”

The months-old war in Congress over repealing and replacing the Affordable Care Act has had more standoffs, stand-downs and bare-knuckled battles than any other legislative fight in recent memory. But for people whose health insurance is at risk, it has brought the anguish of protracted uncertainty.

Most Americans who are insured — including many who have plans through their employers or Medicare, for example — do not seem to be at immediate risk of losing coverage. But millions of people who get coverage through the marketplaces created by the Affordable Care Act or through the expansion of Medicaid under the law could lose it.

In interviews, some said they did not know from one day to the next whether they would be able to continue screenings and treatment. They are postponing or accelerating major medical decisions, weighing whether to move to more insurance-friendly states, or to close modest businesses and search for employment with health benefits. Millions of Americans feel held hostage to Washington’s wrangling and, consequently, to their own inability to control critical matters in their own lives.

“I’m so done,” moaned Cathy McPherson, 58, a retired court clerk in Sonora, Calif., with hypertension, who has been covered by plans under the health care act from the outset. “It’s what I think about all the time and I am totally burned out. They go over and over it. Can you stop? Just stop it for a little bit? Go on vacation! Relax! Because I’d like a vacation from it, too!”

On Thursday, as a vote loomed on a last-ditch repeal measure, many suspected the uncertainty would not end. If the measure squeaks through, it will move to the next step of the legislative process — a House-Senate conference committee that will try to negotiate a broader health bill that can pass both chambers. If it fails, many think that their relief will be only temporary, and chances are that Republicans will try again.

For the last few weeks, as the Senate Republican health effort was twice pronounced dead only to be revived a day or two later, Nancy Molitor, a psychologist in Wilmette, Ill., has heard escalating anxiety about health care from all of her patients. Many want to spend entire sessions discussing it: how to handle the stress and the feelings of fear, powerlessness, rage and frustrated paralysis.

“They know they should turn off the TV and their news feeds, but they can’t,” said Dr. Molitor, an assistant clinical professor of psychiatry and behavioral health at the medical school at Northwestern University.

On Wednesday, the day after the Senate narrowly voted to begin floor debate on health legislation, she saw eight patients who each brought up the issue, regardless of whether they would be directly affected by the repeal efforts. She noted that her patients worried about caring for parents as well as for children with severe mental illness. “But the situation is so fluid and volatile that it is a recipe for stress.”

And yet conventional therapeutic wisdom for managing stress does not translate well to health care-related anxiety, she said. In more typical periods of life agitation — death, divorce, job loss — a therapist tries to get patients to identify what is in their control, what is not, and how then to get information and make a plan.

“But with health care, even the therapists don’t know the answer. We haven’t experienced this before,” Dr. Molitor said. “It’s hard to be a therapist in this environment because we’re worried about the same things, too. We have to make sure our own anxiety isn’t infecting the session.”

In response to a callout to New York Times readers on Wednesday, many people talked about stockpiling medications, postponing surgeries so as not to set up a pre-existing condition, or racing to see specialists for fear of losing their coverage.

Angela Wilson Gyetvan has decided to move ahead with gallbladder surgery, even though she has so far been managing her gallstones — a side effect of medication she has been taking since she finished chemotherapy several years ago — with diet. But Ms. Wilson Gyetvan, a Los Angeles-based consultant for digital companies who has coverage through the Affordable Care Act, does not have the financial wherewithal to take a wait-and-see approach.

She has been assiduously monitoring the Washington debate for months, incapable of putting herself on a social media diet. “During the good moments, it was such a relief — ‘It’s dead!’” she said. “Several of us were ready to go for a drink and celebrate. But we were scared. And lo and behold, we were right.”

Dr. Leigh H. Simmons, a primary care physician who teaches at Harvard Medical School, has been trying to adapt her approach to patients as each new upheaval in Washington brings fresh concerns to her office. The day before the House bill passed in May, she saw more patients in her practice than ever. “Some were for urgent reasons, others less so,” she said. “But they knew they had health care this year and they wanted to take care of things.

“I say, ‘For the time being, since you have coverage, why don’t we get the mammogram or the colonoscopy done?’ I don’t mean it to be frightening, but as an incentive.”

As a physician, Dr. Simmons has been feeling drained, concerned about her patients — some with diabetes have been taking less insulin than the prescribed dose, to make supplies last. Some patients question whether they will be able to continue with her. “It’s a very powerless feeling, as a doctor,” she said. “We are as worried as our patients about what this all will mean.”

In Mosier, Ore., Joe Eckert, a technology consultant, and his wife, Tammie, who owns a fabric shop in Hood River, keep drafting and ripping up life plan after life plan, as they train their eyes on Congress. Currently they buy insurance through the state’s Affordable Care Act marketplace for themselves and their son, 23.

But, they worry, what if it goes down in flames? What if protections for pre-existing conditions disappear? What if they are thrown into the high-risk pool? Several years ago Mr. Eckert, 54, developed diabetes; Mrs. Eckert, 50, had a malignant skin cancer removed and is screened every three months.

Plan A: Close the store and Mrs. Eckert will scour want ads for a job that will give them benefits. Plan B: Sell the house and move to Washington State, where, they say, health coverage seems to be more stable. Plan C: Delay a vacation, to save money.

“The ups and downs of the debating have been the worst,” Mr. Eckert said. “You’re happy one minute — ‘We won!’— and then it’s not over yet. It just keeps dragging on. Being in limbo is the hardest place of all.”

Diane Smith, of Lafayette Hill, Pa., is a social worker who counsels families in severe crisis because of catastrophic illness. Her own son, Luke Hoban, has congenital muscular dystrophy and needs considerable assistance, including a wheelchair and a ventilator. She has an autoimmune disorder for which she must take very expensive injections.

She recently purchased insurance through the Affordable Care Act. “I’ve watched my life play out on the national stage,” she said, “knowing I was getting divorced and would get kicked off my husband’s health insurance and that my son”— who just graduated from the University of Pennsylvania — “was about to go out into the world and possibly lose his Medicaid coverage too.”

She has been almost sleepless throughout the recent siege of debates, following the voting in real time, heart in throat, while caring for Luke and going to work.

She said that the density of legislative proposals drove her crazy. She was in bed the other night, tracking Twitter, and yelled out to her younger son, Christian, a junior majoring in economics and political science: “‘What does this mean?’ He got up in his underwear and I held out my phone. He just shook his head and said, ‘Mom, we went through this!’”

As emotionally draining as the protracted debates have been, Mrs. Borland, the mother of the 2-year-old leukemia patient, keeps trying to find meaningful outlets for her frustration and fear. The Facebook group where she gathers with other mothers of children with cancer will not let her vent about insurance. The moderator has said that the topic is too upsetting for parents who need the space to be safe and supportive.

Back in November, when her internal alarms over insurance began clanging, she assumed that both she and her husband were the family’s vulnerable ones, as small-business owners who had purchased coverage through New York’s Affordable Care Act marketplace. Her daughter’s coverage through Medicaid would be fine, a hospital social worker assured her.

But many months, debates, treatments and bills later, big Medicaid cuts are still on the table. She does not know how they could affect her daughter.

Choking back tears, Mrs. Borland gathered herself. “The way that treatment for a child with cancer goes, you never think about tomorrow,” she said. “You just think about today. Because thinking that she’ll lose coverage is like thinking she’ll relapse. I’ll deal with it when the time comes. That’s a cancer mom’s thinking.”