FEATURE: Forest of Despair

By on July 25, 2017

Health care in Wyoming places a price tag on life some families can’t pay.

JACKSON HOLE, WY – Tiffany Crabtree thumbs through a stack of medical bills with the calm of someone who has routinely experienced suffering. She tells her family’s story with gentle precision: “Isaac needed open heart surgery, and so much of me wished we could just be parents,” she said. “Just be there, holding his hand instead of needing to wonder, ‘How are we going to pay for this?’ ‘Where will we get the money to take care of him?’”

She paused, perhaps how she always does when it comes to this part of the story. “We thought we were going to lose him. He was hospitalized about every month from when he was born until he was six or nine months for failure to thrive, hernias, aspiration, he had an iron infusion…” her voice trailed off as she tried to remember every time she almost lost her youngest child.

Isaac Crabtree is the light of his mother’s life. At 11 years old, he chimed in during our family interview, asking questions and interjecting facts about his medical condition. He has been diagnosed with a rare genetic disorder called Williams Syndrome, so rare the condition only affects, at most, one in 30,000 Americans. Williams Syndrome is characterized by “pathological friendliness” and an unsubdued eagerness to love anyone and everyone. The disorder also comes with very serious side effects, and because the condition is so rare, the Crabtrees must often seek out specialists and medical professionals hundreds of miles from their Jackson home.

The remoteness of Jackson Hole indeed contributes to the cost and availability of care for many Teton County citizens. “When we have to see specialists, getting quality care requires traveling to Salt Lake City,” Crabtree said.

In cases of emergency, the distance can be even more expensive and dangerous. “I wish I didn’t have to know how much a life flight is [about $10,000], or how much a room in the ICU can cost for a few nights. When Isaac was four years old, he needed open heart surgery. The room bill alone was 96 thousand dollars. Not the surgery, not the medication, or anesthesia, just the room bill,” she said.

Medical bills have drained the Crabtrees’s finances. “The hardest part,” Crabtree said, “is looking back at it now. I had good insurance. But even with good insurance, you’re still paying your premiums, and we would hit our absolute max every year. The stuff we had to pay out of pocket just destroyed us, and year after year after year, with hospital trips almost every month, it was very hard.”

Open heart surgery was just one of a dozen procedures Isaac needed. After a two-year wait, Isaac, at age 7, qualified for a special Medicaid allowance under Wyoming’s Mental Health Waiver. But there are no respite care providers registered in Teton County through the Mental Health Waiver. Respite providers offer one-on-one care for those with developmental disabilities, affording families the chance to keep their loved ones at home, rather than in expensive medical facilities. Without that help, the Crabtree family could not get the specific in-home care Isaac needed.

The Developmental Disabilities Waiver, or the DD Waiver, would have been useful to Isaac, because there are multiple providers registered in Teton County, but Isaac couldn’t apply for the DD Waiver while receiving help from the Mental Health Waiver. Ultimately, his family surrendered their Medicaid coverage in hopes of getting Isaac on the DD Waiver. Isaac still has not been approved, however, and with massive cuts to the DD Waiver looming, he probably never will.

For families with children in need of costly medical attention, this is a perfect example of where Medicaid could have stepped in to fill the gap, ensuring a parent can hold their child’s hand after open heart surgery instead of feeling the slow constriction of mounting medical debt.

To qualify for Medicaid in Wyoming, people must meet some of the most stringent income rules in the nation. Statistically, half as many people qualify for Medicaid in Wyoming when compared to the national average. Nationally, 20 percent of the population benefits from Medicaid, but in the Cowboy State, barely 12 percent do, according to the 2016 Wyoming Annual Report.

Further reductions to the program—a key part of the Senate bill that Republicans drafted to replace the Affordable Care Act—would have horrific fallout for tens of thousands of people in the Cowboy State. The Kaiser Family Foundation estimates the Medicaid cutbacks and caps proposed would leave 24,000 of Wyoming’s most vulnerable citizens without coverage.

The fallout

Under current Republican health care proposals—there are four floating around that Republican senators voted Tuesday to debate—Medicaid, a program already underfunded in Wyoming, is likely to see the largest cut of any program that’s on the chopping block. Further cuts to the program could financially destabilize millions of families that depend on that money every day.

The Congressional Budget Office projects the Senate’s proposed Better Care Reconciliation Act would reduce federal funding for Medicaid by $772 billion over the next decade. Cinching the coffers even tighter, those caps and reductions to Medicaid under review in the Senate could leave as many as 15 million people uninsured by 2026.

Wyoming receives about half of its Medicaid budget from the feds each year, but it’s not just federal cuts the Wyoming Department of Health needs to worry about.

Isaac Crabtree at four years old, post-operation after he underwent a patch aortoplasty open heart surgery. The procedure was the first of several open heart surgeries he will need.

WDH is looking at cuts on the state level as the state’s tax dollars dwindle. Thomas O. Forslund, director of WDH, released a statement compiling a line-by-line breakdown of where Governor Matt Mead’s cuts would come from for the 2017/18 fiscal year. Medicaid was a key target.

“While most agencies were asked to reduce their general fund budgets by 8 percent, larger agencies such as the WDH were asked to reduce more. …WDH was asked to reduce its general fund by $90 million for the biennium, which equates to a 9.23 percent reduction,” Forslund wrote. He also has to account for reductions in matching federal spending. The projected loss of matching funds is expected to be more than $43 million, bringing the reduction total to more than $133 million.

So who are the biggest losers if Wyoming sees major health care cuts? Kaiser Family Foundation estimated Medicaid and the Children’s Health Insurance Program covers 61,000 people statewide, focusing largely on children with disabilities, seniors, pregnant mothers and families living below 128 percent of the poverty line (that’s a yearly income up to $25,728). Reductions in Medicaid at the national level will affect these demographics almost exclusively. The Congressional Budget Office estimated the proposed reductions to Medicaid would eliminate coverage for more than 23,500 people in Wyoming. According to the American Academy of Pediatrics, of those Wyoming citizens on Medicaid, 70 percent are children.

Medicaid has had a shaky presence in Wyoming for years. The Cowboy State is one of 19 states that chose not to expand Medicaid under the Affordable Care Act. About 30,000 additional Wyoming citizens would have qualified for Medicaid assistance if state lawmakers had approved the expansion.
The waiver that would help Isaac the most, the Developmental Disabilities Waiver, is especially susceptible to budget cuts, because Wyoming isn’t required to provide those services under the federal government’s Medicaid program.

Forslund said budget cuts from last year already caused an enrollment freeze for Wyoming citizens with developmental disabilities in need of in-home care.

Access denied

Even without strict qualification standards for Medicaid, access to even basic health care is limited for many Wyoming citizens. The Wyoming Department of Health lists low population density and rural populations as lead contributors to the state’s lack of medical coverage. As the nation’s least populous state, the Department of Health reports: “Nearly three-quarters of Wyoming’s residents live in rural areas that are designated as health provider shortage areas for most, if not all, provider types. As a result, many individuals travel to neighboring states for health care, particularly for specialty care, and Wyoming Medicaid covers treatment by many out-of-state providers.”

The report highlights that a two-hour drive is considered acceptable for health care coverage, citing cities such as Fort Collins, Colorado; Salt Lake City, Utah; Rapid City, North Dakota; and Billings, Montana as common places the citizens of Wyoming migrate to for treatment. These cities have large enough populations to support higher caliber medical care than much of rural Wyoming can reasonably sustain.

Seven counties in Wyoming are classified generally as “medically underserved” by the Health Resources and Services Administration. More alarmingly, still, HRSA lists the entire state of Wyoming as a Mental Health Professional Shortage Area. The three ways to qualify for shortage are geographic distance from mental health professionals and facilities, accessibility to medical professionals in ratio to population density, and the existence of proper behavioral health hospitals and facilities. HRSA gave Teton County a failing score of 14 out of 25 for access to behavioral health services.

For the Crabtrees, even routine visits to specialists require trips to Utah, but in cases of emergency, the cost of health care is astronomical. Life-flights have cost them more than $30,000. So, for their family, medical attention can be a zero-sum game.

The price tag on life

But it’s not prohibitive geographic distances or even cuts in Medicaid that top the Crabtrees’s fears. It’s the repeal of lifetime maximum protections provided under the Affordable Care Act.  Parents of children with pre-existing medical conditions, or those who need other forms of long-term, expensive medical treatment could lose coverage under the current full-court press to dismantle the Affordable Care Act, or Obamacare.

With the repeal of Obamacare on the table, the Crabtrees’s financial anxieties take a distant second place to their concerns for the health and future of their son. Isaac’s lifetime health care expenditures, Justin Crabtree ballparks, have already exceeded a million dollars just in his short 11 years on earth, and more likely than not, he will continue to need extensive medical attention.

The Affordable Care Act dictates private insurers cannot put a dollar amount on the value of a human life by explicitly abolishing lifetime maximums for health care coverage. Before the Affordable Care Act became law, lifetime limits were the norm across the nation. The actual dollar amounts insurers were required to provide were left up to individual states to decide, generally ranging from $1 to $5 million dollars before those in need of medical attention were expected to pay their own bills.

If lifetime maximums return, Justin Crabtree said he and his family will not only be forced to uproot their lives from rural Wyoming, but also from the United States. They are considering Panama. The developing Latin American country has an affordable public-private health care system that has lured many ex-pats south.

Insurance woes from patient to company

With reductions to Medicaid in the forecast, we need only look at history to see what reductions in health care coverage and access, coupled with increases in uninsured/underinsured populations, can do to a society.

A study by Dr. David Middlestein for the American Medical Journal investigated the direct correlation between unmanageable medical expenses and bankruptcy filings. In 2007, his study conservatively estimated 62 percent of bankruptcies in the U.S. were medically related, either from the bills themselves, or from loss of work due to illness or injury. “Ninety-two percent of these medical debtors had medical debt over $5,000, or 10 percent of pre-tax family income. The rest met criteria for medical bankruptcy, because they had lost significant income due to illness or mortgaged a home to pay medical bills,” the report said.

Bankruptcy declarations can indeed derail a family’s future for years to come. Depending on the type of bankruptcy declared, filers might be forced to sell off almost all their possessions to cover part of the debt. In addition, a bankruptcy declaration can stay on a person’s credit report for up to 10 years, making it difficult to get lines of credit that would allow him or her to purchase a vehicle or home, sometimes even restricting a person’s ability to get a job.

Since the adoption of the Affordable Care Act, there has been a significant reduction in medical-related bankruptcy declarations. Consumer Reports estimated medical bankruptcies have dropped by nearly half since the Affordable Care Act was implemented.

It’s not only patients that are suffering under the growing pains of new health care legislation. Insurance companies are facing backlash after GOP-led health care reforms have floundered in the Senate, especially in the face of Medicaid cuts.

Upset by the bill’s struggles, President Trump has threatened to withhold reimbursement subsidies promised to insurance companies through a system enacted by the Affordable Care Act called cost-sharing reductions. Essentially, cost-sharing reductions is assistance for certain low-income families and individuals, paid for by the federal government and insurance companies to help manage premiums and out-of-pocket expenses based on financial need.

Wendy Curran, spokesperson for Blue Cross Blue Shield Wyoming, fears withholding this money could drastically destabilize health care markets. Curran told PJH, “Cost-sharing reductions help those who are most in need by helping cover their out of pocket expenses, deductibles, and co-pays when they get care. They are very important to lower income families and individuals who face large deductibles. The position that the government might withhold this money is worrisome, and we would like to see some certainty going forward. We think Wyoming residents deserve that as well.”

The fees of cost-sharing reductions are fronted by the insurance companies, and those costs are later partially reimbursed by the federal government.

If insurance companies do not recuperate the money they spend helping vulnerable individuals in Wyoming pay for their coverage, Curran predicts rate hikes, meaning average citizens would face higher premiums for less coverage in the future.

Curran, however, put to rest rumors circulating that Blue Cross Blue Shield was going to pull out of the insurance marketplace because of the federal government potentially reneging on cost-sharing reductions. “Wyoming citizens can rest assured that we will be there in the fall. Our concern is primarily about making certain that our members will have some security, knowing that there will be insurance available in 2018 and the following years. Open enrollment is only about three months away.”

But not all insurance companies are as prepared to recommit to enrolling in the ACA marketplace this fall. Many companies, like Covered California, are holding out before releasing  new premiums to see if the Trump administration will hold up its end of the bargain for cost-sharing reductions.

Curran hopes, most of all, that there are no dramatic changes in insurance. Ideally that means “allowing the market time to adjust, introducing changes gradually, in order to allow the market time to adapt. I understand fully that you need the right mix of people in an insurance pool for it to work.”

If citizens are no longer required to have health insurance, it will be the young and healthy who will drop their insurance coverage first, leaving the ill and infirm disproportionately represented, sending their premiums through the roof, pricing more people out of insurance.

The land of the sick and the free

The Crabtree family just wants to put a face on Medicaid coverage. Tiffany and Justin Crabtree wish Wyoming senators would look their son in the eye and explain to him what a lifetime maximum would mean for him, or what reductions to Medicaid could do to his family.

“Until you’ve lived through it, I just don’t think you have any idea. You just don’t know,” Justin Crabtree said.

“I always say I would love to be ignorant towards health care,” Tiffany Crabtree concluded. “I don’t think people understand the full impact of these changes until you live that life. We didn’t know what life flight cost, or open heart surgery, or that we would be making great money but still face financial hardships, because of medical expenses. We just didn’t know.”

The Crabtree family believes a single-payer system would work best for the country, but even improvements instead of “hamstringing” the Affordable Care Act would go a long way for millions of citizens.

In the Crabtrees’s home state, however, universal healthcare doesn’t have quite the same reception from lawmakers. Historically, Wyoming’s U.S. Senators Mike Enzi–R, and John Barrasso–R, have both voted for reductions in Medicaid and Medicare (specifically voting against expanding the Children’s Health Insurance Program) and are fervently opposed to the Affordable Care Act. They are among the all-men team that drafted the Senate’s latest health care bill.

Enzi, Senate budget chairman, voted down an amendment proposed in January that would have protected the public against cuts to essential services, such as Medicare, Medicaid, and Social Security provided by the Affordable Care Act. Enzi attempted to persuade fellow Republicans to vote against the bill by saying, “A vote in favor of this amendment is a vote against repealing Obamacare,” which has been at the top of Enzi’s to-do list since before the Affordable Care Act’s passage in 2010.

Max D’Onforio, Enzi’s press secretary, told PJH, “Senator Enzi understands that Obamacare is unsustainable and insurance exchanges are in crisis. Many are facing imminent collapse amid soaring prices. This year, 70 percent of U.S. counties will have little or no choice of insurers on the exchanges. Next year, at least 44 more counties are projected to have no insurer on the exchange. Premiums have more than doubled since 2013, and in Wyoming, we have only one insurer and some of the highest premiums in the country. Without action to stabilize these markets now, it will only get worse.”

But the Congressional Budget Office’s non-partisan assessment of the new bill concluded that deductibles could skyrocket for most middle-class Americans, projecting a typical plan under the new legislation could see average deductibles reaching $13,000 by 2026.

Enzi and Barrasso have, respectively, received a 0 and 14 percent rating out of 100 by the American Public Health Association, which indicates an “anti-public health voting record.”

With this voting record, it might be surprising that Barrasso happens to be a physician and member of the American Medical Association. His AMA colleagues have come out vehemently against the proposed Better Care Reconciliation Act as it stands in the Senate.

A letter drafted by the American Medical Association addressed to Senate Majority Leader Mitch McConnell–R, KY, said, “Medicine has long operated under the precept of Primum non nocere, or First, do no harm. The draft legislation violates that standard on many levels.” In other words, AMA members say the bill so strongly violates the Hippocratic Oath, doctors cannot conscionably support it.

During a CBS interview, Barrasso called the American Medical Association “misguided” for disparaging the Better Care Reconciliation Act. “…the doctors I talk to at home, and the nurses, and the patients—I was there yesterday—continue to say we need to get rid of this Obamacare. We need to replace it! With something that actually lowers the cost, that makes health care more affordable. Health care is very, very personal, and we need to make sure that we do it right.”

Justin Crabtree, though, wonders how his senators have come to that conclusion. “I don’t know why they call it a health ‘care’ bill; there’s no ‘care’ in it. There’s no decrease in costs or cost controls that would actually benefit people in the long run. And if you’re not going to help the people in our country where you serve, why do it?”

Now that the Crabtrees have lived through the costs and fears associated with the instability of health care, they are faced with a difficult dilemma: if the GOP has its way with health care and Medicaid is reduced and lifetime maximums return, leaving the country might become a very real necessity for them. For their family, it boils down to this: nothing ranks higher than the health of their son. And if the United States doesn’t value his life, they will be forced to find a country that does. PJH

About Natosha Hoduski

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