Month: January 2018

Two-year-old Maverick Hawkins sits on a red, plastic car in his grandmother’s living room in the picturesque town of Nevada City, Calif., in the foothills of the Sierra Nevada. His playpal Delilah Smith, a fellow 2-year-old, snacks on hummus and cashews and delights over the sounds of her Princess Peppa Pig stuffie.

It’s playtime for the kids of the provocatively named Facebook group “Pot smoking moms who cuss sometimes.”

Maverick’s mother, Jenna Sauter, started the group after he was born. “I was a new mom, a young mom — I was 22 — and I was just feeling really lonely in the house, taking care of him,” she said. She wanted to reach out to other mothers but didn’t want to hide her marijuana use.

“I wanted friends who I could be open with,” Sauter said. “Like, I enjoy going to the river and I like to maybe smoke a joint at the river.”

There are nearly 2,600 members now in the Facebook group. Marijuana, which became legal for recreational use in California this month, is seen by many group members as an all-natural and seemingly harmless remedy for everything from morning sickness to postpartum depression.

Delilah Smith’s mom, Andria, is 21 and a week away from her due date with her second child. She took umbrage when an emergency room physician recently suggested she take “half a Norco”— a pill akin to Vicodin, an opioid-based painkiller — for her excruciating back pain.

Smith was disdainful. “She was like, ‘We know more about Norco and blah, blah, blah and what it can do to you, but we don’t that much about marijuana,’” Smith said.

“I was like, ‘Test me!’ I was like, ‘Observe me. My kid could count to 10 before she was even 2 by herself, and I smoked pot throughout my whole pregnancy. She’s not stupid! There is no third eye growing.’”

The number of women in the United States who use marijuana during pregnancy has been difficult to gauge, partly because some women are reluctant to tell their doctors; at least 24 states consider substance use during pregnancy a form of child abuse, so divulging such information can have serious consequences.

Still, a number of studies nationally suggest there’s been a sharp jump in pot use among pregnant women. Younger mothers, especially, were reported using marijuana during pregnancy.

Andria Smith and Sauter both told their doctors of their marijuana use, and after they gave birth, their babies were tested for signs of marijuana’s chief active ingredient, THC.

Because their babies tested positive, Sauter and Smith were visited at home by county social service workers, who gave the women information about the effects of marijuana use during pregnancy and breastfeeding.

Researchers say psychoactive compounds in marijuana easily cross the placenta, exposing the fetus to perhaps 10 percent of the THC — tetrahydrocannabinol — that the mother receives, and higher concentrations if the mom uses pot repeatedly.

Dr. Dana Gossett, a research obstetrician and gynecologist at the University of California-San Francisco who also treats patients, said studies have shown marijuana increases the risk of stillbirth or adversely affects how a baby’s brain develops.

Gossett cited some research that suggests children exposed to marijuana while growing in the womb can have poorer performance on visual-motor coordination — tasks like catching a ball or solving visual problems like puzzles.

And studies also show, she said, these kids may have behavioral problems at higher rates than other children by age 14, and are at greater risk for initiating marijuana use.

“That is biologically plausible,” Gossett said, “because the effects of THC in the brain may actually prime that child for addictive behavior, not just to marijuana but to alcohol as well.”

There has been little research on the effects of THC passed to a baby via breastfeeding. But because there isn’t enough evidence to determine the risk, the American College of Obstetricians and Gynecologists (ACOG) discourages marijuana use during pregnancy, and warns breastfeeding moms to avoid eating or smoking marijuana or inhaling its secondhand smoke — since some amount of THC, just like alcohol, can pass into the baby that way.

To Smith’s point that her daughter, Delilah, is just as smart as her peers, studies do show that, in general, children exposed to marijuana in utero don’t score worse on reading or mathematics as they get older.

Sauter said she and her friends don’t smoke near their children, nor do they spend their days stoned to oblivion.

“It’s not like being totally out of it,” Sauter said. “I’m completely aware of my surroundings. I’m watching my kid, watching my friends’ kids. I’m hanging out. You totally know what’s going on.”

Sauter said many parents she knows are uncertain if they can get in trouble using pot now in California. Indeed, child protection laws in most states remain at odds with liberal marijuana laws. Some moms on the Facebook page will not go to the doctor — even when they’re sick.

“They don’t want to get tested,” Sauter said. “And that’s dangerous. We should be able to be open about it. Because if something does go wrong, we’ve got to know.”

ACOG does not endorse mandatory testing for THC in pregnant women or newborn babies — out of concern that women could be jailed or have their babies taken from them. Instead, the organization urges obstetricians to ask pregnant women about drug use during prenatal visits, counseling these patients against substance use and helping them alleviate their nausea, back pain or postpartum depression with medications deemed safe by federal drug regulators.

But with recreational cannabis now legal in at least eight states and the District of Columbia, physicians like Gossett are worried that newborns and young children, whose brains are rapidly developing, constructing billions of neural connections, will come to know the world in an altered state.

“They’re learning what things look like and how things move and how to respond to the world,” Gossett said. Marijuana’s psychotropic effects, she added, will change “a child’s ability to interpret the world around him.”

KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

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Insurance coverage of colonoscopies to screen for colorectal cancer is a frequent source of frustration for consumers, including a reader who asks about his situation. In addition to his query, this week I also address questions about Medicare premiums and delays in determining Medicaid eligibility.

Q: When I had a screening colonoscopy in 2015, the doctor removed a polyp and told me to come back for another colonoscopy in three years. I paid nothing for the 2015 test because it was a preventive screening. When I scheduled my appointment for this year, the provider said the procedure was diagnostic because of that earlier polyp removal. Doesn’t the law protect people in these situations from being charged for more frequent but necessary screening? 

Not necessarily. The Affordable Care Act greatly expanded coverage of preventive services, including requiring commercial insurers to cover screenings for colorectal cancer without charging patients anything out-of-pocket if they’re between ages 50 and 75. In general, screening colonoscopies for people at average risk are recommended every 10 years by the U.S. Preventive Services Task Force. (Under the law, preventive services are covered at no cost by insurers if they meet the task force’s recommendations.) There’s no charge to the patient for the test, even if a benign growth called a polyp is found and removed.

Doctors may recommend more frequent “surveillance” testing, as they did in your case, if during screening they find any polyps, which may put you at higher risk for colon cancer. Since the task force doesn’t have a recommendation for high-risk colorectal cancer screening, insurers aren’t required to cover it without cost sharing.

“Insurers will cover the test, but whether the patient is held harmless for the copay and deductible depends on the insurer,” said Dr. J. Leonard Lichtenfeld, deputy chief medical officer at the American Cancer Society.

Medicare also covers screening colonoscopies without charging beneficiaries anything out-of-pocket. The program covers tests every 10 years, and every two years if someone is considered high-risk. But there’s a catch: In contrast to private coverage, if a polyp is found during the test, that procedure is then considered diagnostic and patients will be subject to a copayment.

Q: I signed up for a plan on healthcare.gov last fall in Virginia after I lost my employer coverage and learned that my 16-year-old daughter might be eligible for Medicaid. Two months have passed, and we still don’t have an answer. I understand that her coverage will be retroactive back to the date we applied, but in the meantime, I have to pay any medical bills. The state says it has 45 days to make a decision, but we’re past that. What can I do?

Even though the federal government allows states 45 days to act on a Medicaid application, a few weeks is typical and “at this point it’s well beyond the acceptable range of time for getting an eligibility determination,” said Tricia Brooks, a senior fellow at Georgetown University’s Center for Children and Families.

If you haven’t done so already, confirm that the Virginia Medicaid program has received your application and find out specifically what they need from you to act on it. If you’re racking up medical bills, let Medicaid officials know that your financial situation is critical and consider asking your daughter’s providers to contact them too, Brooks said.

In many states, including Virginia, local legal-aid societies, community health centers and other groups are on hand to help sort out application glitches even though the open enrollment period has ended. Check out the Get Covered Connector for links to assisters in your area.

Q: I’m a federal government retiree receiving a small Social Security payment. I’m trying to figure out why I’m paying $134 every month now for my Medicare Part B premium instead of $109. I signed up at age 65, and it’s deducted from my Social Security check. From what I’ve read, if you’re having premiums deducted from Social Security, you generally pay $109. Why am I paying more?

The standard monthly premium for Medicare Part B, which covers many outpatient services and physician visits, is $134 in 2018, unchanged from last year. In recent years, many Medicare beneficiaries have been shielded from Part B premium increases because by law they must be “held harmless” if the premium increases are larger than their Social Security benefit increases, which have generally been flat.

This year, for many people those circumstances have changed. Because of a 2 percent cost-of-living adjustment to Social Security benefits, 42 percent of Part B enrollees are now subject to the full $134 Medicare Part B premium, according to the Centers for Medicare and Medicaid Services.

From your description it sounds as if you are one of those people, said David Lipschutz, senior policy attorney at the Center for Medicare Advocacy.

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EVERETT, Wash. — Unable to walk or talk, barely able to see or hear, 5-year-old Maddie Holt waits in her wheelchair for a ride to the hospital.

The 27-pound girl is dressed in polka-dot pants and a flowered shirt for the trip, plus a red headband with a sparkly bow, two wispy blond ponytails poking out on top.

Her parents can’t drive her. They both have disabling vision problems; and, besides, they can’t afford a car. When Maddie was born in 2012 with the rare and usually fatal genetic condition called Zellweger syndrome, Meagan and Brandon Holt, then in their early 20s, were plunged into a world of overwhelming need — and profound poverty.

“We lost everything when Maddie got sick,” said Meagan Holt, now 27.

Multiple times each month, Maddie sees a team of specialists at Seattle Children’s Hospital who treat her for the condition that has left her nearly blind and deaf, with frequent seizures and life-threatening liver problems.

The only way Maddie can make the trip, more than an hour each way, is through a service provided by Medicaid, the nation’s health insurance program started more than 50 years ago as a safety net for the poor.

Called non-emergency medical transportation, or NEMT, the benefit is as old as Medicaid itself. From its inception, in 1966, Medicaid has been required to transport people to and from such medical services as mental health counseling sessions, substance abuse treatment, dialysis, physical therapy, adult day care and, in Maddie’s case, visits to specialists.

“This is so important,” said Holt. “Now that she’s older and more disabled, it’s crucial.”

More than 1 in 5 Americans — about 74 million people — now rely on Medicaid to pay for their health care. The numbers have grown dramatically since the program expanded in 32 states plus the District of Columbia to cover prescription drugs, health screening for children, breast and cervical cancer treatment and nursing home care.

With a Republican administration vowing to trim Medicaid, Kaiser Health News is examining how the U.S. has evolved into a Medicaid Nation, where millions of Americans rely on the program, directly and indirectly, often unknowingly.

Medicaid’s role in transportation is a telling example. Included in the NEMT coverage are nearly 104 million trips each year at a cost of nearly $3 billion, according to a 2013 estimate, the most recent, by Texas researchers.

Citing runaway costs and a focus on patients taking responsibility for their health, Republicans have vowed to roll back the benefits, cut federal funding and give states more power to eliminate services they consider unaffordable.

Already, states have wide leeway in how to provide and pay for the transportation.

Proponents of limiting NEMT say the strategy will cut escalating costs and more closely mirror private insurance benefits, which typically don’t include transportation.

They also contend that changes will help curb what government investigators in 2016 warned is “a high risk for fraud and abuse” in the program. In recent years, the Centers for Medicare & Medicaid Services (CMS) reported that a Massachusetts NEMT provider was jailed and fined more than $475,000 for billing for rides attributed to dead people. Two ambulance programs in Connecticut paid almost $600,000 to settle claims that they provided transportation for dialysis patients who didn’t have medical needs for ambulance transportation. And the mother of a Medicaid patient who was authorized to transport her child for treatment billed Medicaid for trips that didn’t take place. She was sentenced to 30 days in jail and ordered to pay $21,500.

Last March, Rep. Susan Brooks, an Indiana Republican, introduced a resolution that would have revoked the federal requirement to provide NEMT in an effort to provide states with “flexibility.” That effort stalled.

Another Republican proposal in 2017 would have reversed the Affordable Care Act’s Medicaid expansion and reduced federal funding for the NEMT program. It failed, but other efforts by individual states still stand.

Former Health and Human Services Secretary Tom Price and CMS Administrator Seema Verma encouraged the nation’s governors to consider NEMT waivers, among other actions, in a March letter to them.

“We wish to empower all states to advance the next wave of innovative solutions to Medicaid challenges,” they wrote. The Trump administration has used state waivers to bypass or unravel a number of the Obama administration’s more expansive health policies, and has granted some states’ requests.

At least three states, Iowa, Indiana and Kentucky, have received federal waivers — and extensions —allowing them to cut Medicaid transportation services. Massachusetts has a waiver pending.

Critics of the cuts worry the trend will accelerate, leaving poor and sick patients with no way to get to medical appointments.

“I wouldn’t be surprised to see more of these waivers in the pipeline,” said Joan Alker, executive director of the Georgetown University Center for Children and Families.

Because medical transportation isn’t typically covered by the commercial insurance plans most Americans use, it’s unfamiliar to many people and could be seen as unnecessary, said Eliot Fishman, senior director of health policy for Families USA, a nonprofit, nonpartisan consumer health advocacy group.

Formerly a Medicaid official in the federal government, Fishman called the transportation program “vital” not only for children with severe disabilities, but also for non-elderly, low-income adults.

CMS released results of a 2014 survey of Medicaid users, which found that lack of transportation was the third-greatest barrier to care for adults with disabilities, with 12.2 percent of those patients reporting they couldn’t get a ride to a doctor’s office.

“This is not something to be trifled with lightly,” Fishman said. “We’re talking about a lifesaving aspect of the Medicaid program.”

About 3.6 million Americans miss or delay non-emergency medical care each year because of transportation problems, according to a 2005 study published by the National Academy of Sciences.

That same study analyzed costs for providing NEMT to patients facing 12 common medical conditions and found that providing additional transportation is cost-effective. For four of those conditions — prenatal care, asthma, heart disease and diabetes — medical transportation saved money when the total costs for both transportation and health care were tallied.

Medicaid is required to provide NEMT services using the most appropriate and least costly form of transportation, whether that’s taxis, vans or public transit.

Most states rely on NEMT brokers or managed-care organizations to administer the transportation services. Other states run the service directly, paying providers on a per-ride basis, while some use local ride services and pay independent taxi firms to shuttle patients.

Proponents of revamping NEMT note that disabled children like Maddie and other people with serious disabilities are in little danger of losing services. In Iowa and Indiana, Medicaid transportation remains available to several groups of patients, including those classified as “medically frail,” though the definition of who qualifies can vary widely.

In addition, one managed-care provider, Anthem, continues to transport Indiana Medicaid patients, despite the waiver that was first enacted in 2007.

Still, Medicaid clients like Fallon Kunz, 29, of Mishawaka, Ind., are often stuck. Kunz, who has cerebral palsy, migraine headaches and chronic pain, uses a power wheelchair. When she was a child, she qualified for door-to-door service to medical appointments, she said.

Today, she lives with her father, whose home is outside the route of a Medicaid transit van. Getting to and from medical appointments for her chronic condition is a constant struggle, she said. Taxis are too expensive: $35 each way for a wheelchair-enabled cab.

“The only way I can get rides to and from my doctor’s appointment is to ride the 2 miles in my wheelchair, despite all kinds of weather, from my home, across the bridge, to the grocery store,” she said. “Right outside the grocery store is the bus stop. I can catch the regular bus there.”

Sometimes, she’s in too much pain or the Indiana weather — warm and humid in the summer, frigid and windy in the winter — is too much to battle and she skips the appointment.

“Today I didn’t go because it was too cold and my legs hurt too much,” she said on a December Tuesday. “I didn’t feel like getting blown off the sidewalk.”

In Maddie Holt’s case, she was shuttled to Seattle Children’s on a rainy Tuesday morning in a medical van driven by Donavan Dunn, a 47-year-old former big-rig trucker. He works for Northwest Transport, one of several regional brokers that manage NEMT services for Washington state.

Dunn said he received special training to transport patients like Maddie, who is loaded onto a motorized platform, wheelchair and all, into the van and then carefully strapped in.

“I have to drive different,” said Dunn. “I have to watch my corners, watch my starts, watch my stops. It’s always in the back of my mind that I have somebody on board that’s fragile.”

We’re talking about a lifesaving aspect of the Medicaid program.

Dr. Molly Fuentes examines the mobility of Maddie Holt’s arms. (Heidi de Marco/KHN)

The transportation service can be used only for medical visits to the specialists who treat Maddie’s condition, which is caused by mutations in any one of at least 12 genes. If Meagan Holt needs to pick up prescriptions or get groceries, she leaves Maddie and a second daughter, Olivia, 3, at home with their dad and takes the bus or walks to her destinations.

Caring for a severely disabled child is not the life she expected, Meagan Holt said, but she cherishes time with Maddie, who has learned to communicate through tactile sign language spelled into her hand.

“She knows about 100 words. She knows the alphabet,” Meagan said. “She likes Disney princesses. She loves ‘Frozen.’”

Maddie is one of hundreds of NEMT-eligible children transported to Seattle Children’s each month. Last September, for instance, more than 1,300 clients made more than 3,600 trips at a cost of more than $203,000, according to the Washington Health Care Authority, which oversees the state’s Medicaid program called Apple Health.

The need is so great, in fact, that the hospital created a transportation will-call desk to help organize the comings and goings.

“When we realized how much transportation is a barrier to getting to your appointment, we decided to do something about it,” said Julie Povick, manager of international exchanges and guest services at Seattle Children’s.

“The majority of our patients are in survival mode,” Povick added. “You need a lot of handholding.”

But Verma, the architect of Indiana’s Medicaid overhaul plan, has suggested that too much handholding might be “counterproductive” for patients — and bad for the country.

In a 2016 Health Affairs essay, Verma noted that early analysis of the effects of curtailing NEMT in Indiana showed that more Medicaid patients with access to the program said transportation was a primary reason for missed appointments than did members without access.

“Moreover, 90 percent of [Healthy Indiana Plan] members report having their own transportation or the ability to rely on family and friends for transportation to health care appointments,” she wrote.

But Marsha Simon, a Washington, D.C., health policy consultant who has tracked NEMT for years, said Medicaid is the option of last resort. People who are able to get rides on their own already do.

“If 90 percent can and 10 percent can’t, what about the 10 percent?” Simon said.

It’s a question that haunts Kunz every day.

“I’m a college student, I have a cat,” said Kunz, who is studying psychology online at Southern New Hampshire University. “I’m just a regular human trying to do things, and the inaccessibility in this area is ridiculous.”

KHN’s coverage of these topics is supported by
Gordon and Betty Moore Foundation,
Heising-Simons Foundation and
The SCAN Foundation

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