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Urban Institute

Because of website glitches, the ACA open enrollment was extended

Lose your job and health insurance due to COVID-19? Here’s a tip.

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Lose your job and health insurance due to COVID-19? Here’s a tip. - North Carolina Health News

Federal agency was mum for months on ‘major life change’ extension to ACA marketplace that could have helped thousands of North Carolinians.

By Rose Hoban

Who knew? The tens, if not hundreds, of thousands of North Carolinians who have lost health insurance since the onset of the coronavirus pandemic might have a new option.

They should check out the federal marketplace created by the Affordable Care Act.

ad reminding readers to support our COVID coverage

A change quietly enacted on the federal Healthcare.gov website sometime in August creates a “special enrollment period” for anyone who lost employer-sponsored insurance since January.

Usually, someone who doesn’t have insurance through their employer and wants to get something on the marketplace needs to wait until open enrollment, which is to begin this year on Nov. 1 and run through Dec. 15. A person seeking insurance can also sign up if they’ve had a “life-changing event” such as marriage, giving birth or losing a job.

The catch? You have to complete your enrollment within 60 days of the life change. This spring, as many as 190,000 North Carolinians lost their insurance along with their jobs, they may not have been aware that they were eligible to get on the exchange and missed that 60-day window of opportunity.

And despite calls from advocates for these special enrollment periods to be extended, the Trump administration declined for months to lengthen that window.

Then it did. But there was no fanfare, no announcement from the president at one of the many press briefings he held this summer.

According to Julieanne Taylor who runs the health insurance navigator program at the Charlotte Center for Legal Advocacy, a North Carolina navigator was assisting a client with getting on the marketplace when they noticed a new question on the website.

“It said, ‘Since January 1, have you lost your health coverage?’” Taylor said. It was a new question and a new criteria for being able to sign up for insurance.

screenshot of insurance marketplace website with questions,
Screenshot of Healthcare.gov website captured on Sunday, Sept. 27 noting how applicants can qualify for a special enrollment period of they have lost employer-sponsored insurance since January.

“Oftentimes when we see something like that, it’s usually a glitch,” she said. So her agency called the Centers for Medicare and Medicaid Services, which manages the healthcare.gov website to be sure.

It turns out the federal agency had realized that within the Affordable Care Act, a special enrollment period could be triggered in the case of a disaster declaration such as the one for COVID-19.

Without notice

What was strange to Taylor about this new special enrollment period was that CMS did no advertising about it: no announcement, no press release, nothing from an agency that issues multiple press releases a day. During the week of Sept. 14-18 alone, the agency issued 17 press releases.

“Usually we get CMS notices and updates but we didn’t get anything,” she said. “It’s bizarre, and frustrating that they’re not advertising it. It’s kind of up to us to do it.”

“The Centers for Medicare & Medicaid Services implemented a technical update to HealthCare.gov to automate the process of applying for the existing special enrollment period (SEP) in effect during a FEMA-declared natural disaster, national public health emergency (PHE), or major disaster,” confirmed a CMS spokesperson in an email. “This exceptional circumstances special enrollment period (SEP) is available to people who lost minimum essential coverage (MEC), but were prevented by the public health emergency (PHE) from enrolling during their routine loss of coverage SEP for which they were eligible.”

Tara Straw from the Center for Budget and Policy Priorities, based in Washington, D.C., said it was unfortunate the agency didn’t do a wider announcement.

“You always want people to have every opportunity to enroll in the coverage they’re entitled to receive,” she said.

Straw noted that back in the spring, advocates had asked the Trump administration to extend the 60-day window for people to sign up for coverage on the federal marketplace after losing their jobs.

In about a dozen states and the nation’s capital, which run their own marketplaces, the window was opened for the newly unemployed and uninsured to get coverage. But in the 38 states that use the federal marketplace, people were out of luck.

“It does help people who could have enrolled earlier, but failed to enroll,” Straw said. “People’s lives were exceptionally chaotic, around, you know, the spring and summer when people were losing coverage… They probably didn’t have the bandwidth to pursue that because, you know, people were experiencing all sorts of other needs like housing, food, and, you know, homeschooling their kids and everything else.”

Straw herself was unaware that the special enrollment period had been initiated until she talked to the folks at Taylor’s agency, who’d noticed it and flagged it to her.

“People were going through the application and they were seeing some strange questions,” she said. “You could see that something different was happening, just by the questions they were asking.”

A missed opportunity

Estimates based on data from the Commonwealth Fund find that as many as 191,000 North Carolinians lost employer-based insurance coverage this spring. For many people, paying for a COBRA insurance policy turns out to be prohibitively expensive.

Some of those people may have gotten their jobs back in recent weeks and months, but there’s likely a large number of workers who have become uninsured and stayed that way. That same Commonwealth Fund report found that about a fifth of people who lost jobs this spring were uninsured to start with.

So, even if there’s a special enrollment period for people who lost coverage, many people never had coverage to begin with and they’re still shut out of the marketplace.

According to recent data from the U.S. Census, North Carolina’s rate of uninsurance ticked up half a percent in 2019, from 10.7 percent in 2018 for those between the ages of 18 to 64 to 11.3 percent. That means North Carolina has the ninth highest rate of uninsured people in the country (tied with Arizona).

“You can’t lose something you’ve never had,” Straw said. “It doesn’t say anyone can come in right now and have their eligibility determined for financial assistance.”

A recent report from the Urban Institute found that across the country, as many as 3 million people lost insurance coverage and 2 million became uninsured. Analysts from the organization also estimated that more than half the people who became uninsured would be eligible for subsidized coverage on the marketplace, but had not taken advantage of it.

“I would think this would be a good opportunity to, to get folks enrolled and help folks that were affected by this pandemic,” said Mark Van Arnam, who manages health insurance navigators and assisters all over the state. He said many of those people would likely have signed up sooner had CMS put out the word.

“We encourage folks to really go to an assister or a navigator and just let them help you to figure out your income, figure out what the best plan might be for your budget and your needs,” Van Arman added. “We stand really ready to help and eager to help as many folks as we possibly can.”

We see the back of a man's head and the two women talking to him. The clinic cares for patients in the uninsured gap and racial disparities in access to care.

NC’s uninsured gap 9th highest in the nation

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NC’s uninsured gap 9th highest in the nation - North Carolina Health News

The state’s uninsured rate remain high, but unchanged, new a report from the U.S. Census shows.

By Liora Engel-Smith

For the third year in a row, the number of people without health insurance in North Carolina remained roughly the same, the annual U.S. Census Bureau report released earlier this month shows.

More than 1 million North Carolinians — or 10.7 percent — did not have health insurance in all of 2018, and the same number as for the year before. In that period, the number of people without medical coverage nationwide increased by about two million, rising from 7.9 percent in 2017 to 8.5 percent in 2018.

An infographic about the uninsured rate in North Carolina over the last three years. The uninsured gap hasn't changed substantially in three years.
Illustration credit: Liora Engel-Smith

The census report attributed that national trend to a decline in Medicaid enrollment. North Carolina’s Medicaid enrollment, by contrast, hasn’t changed significantly in the last three years. North Carolina’s marketplace insurance enrollment declined only slightly over the last two years. The same is also true for the number of people who have health insurance coverage through their employer. 

“We’re not making much progress, [but] we’re not getting much worse,” said Adam Zolotor, who heads the North Carolina Institute of Medicine. 

Still, North Carolina’s uninsured rate is the ninth highest in the nation, according to the report, up one spot from the previous year. Also near the top of that list are other states — such as Texas and Georgia — that like the Tar Heel State have not expanded Medicaid under the Affordable Care Act. 

Medicaid expansion, Zolotor said, would make a significant dent in the state’s uninsured population, decreasing the rate of people without insurance by roughly 3 percent. 

The future of Medicaid expansion in the state remains uncertain, at least in the short term. The General Assembly and Gov. Cooper have sparred over the issue all summer, with Cooper refusing to sign a state budget that doesn’t include expansion. Earlier this month, House Republicans successfully voted to override the veto, but last week, a proposal to expand Medicaid with work requirements was revived in the House. Its future in the Senate is unclear, and even if signed into law, the bill contains several so-called “poison pill provisions” that could grind it all to a halt. 

Though the bill would extend Medicaid eligibility to almost as many adults as the ACA expansion would have, Zolotor said that it has some drawbacks. Monitoring work requirements could be expensive for the state, he said, and if implemented poorly, it could cause enrollees to lose coverage even if they meet the requirements. 

See a smiling man who looks way younger than he is. He's wearing a tie and jacket.
Adam Zolotor, President and CEO of the North Carolina Institute of Medicine. Image courtesy: UNC Health Care

If expansion proves to be politically impossible in the short-term, Zolotor said there are smaller, perhaps more palatable tweaks the state could make to close the uninsured gap, including extending postpartum coverage for Medicaid-eligible women from three months after they give birth to six months, for example. 

Other remedies for the gap, such as controlling health insurance premium prices so consumers aren’t priced out of coverage, depend on other players in the health care landscape.

Either way, he said, there’s work to be done to close the uninsured gap. 

No change a ‘small win’

When she talks about North Carolina’s uninsured gap, Willona Stallings prefers to take a slightly longer view. The director of NC Get Covered recalled how excited advocates across the state were in 2014 when people gained health insurance coverage under the Affordable Care Act for the first time.

That year, just under 380,000 North Carolinians signed up for coverage, data from the Centers for Medicare and Medicaid shows. By 2016, that number swelled to more than 600,000, declining somewhat in 2017. During that time, North Carolina’s uninsured gap shrunk by 6 percent, reaching its current levels. 

Stallings thinks everyone in the state should have health insurance but said she recognizes there have been many obstacles to that goal.

“Ideally, the [uninsured] numbers would continue to go down,” she said. “But… the fact that we’re holding steady is encouraging.”

Retaining current enrollment levels on the insurance exchange across the state, she said, represents a set of concerted efforts by coalition members to reach out and sign up North Carolinians for health insurance even as the Trump administration slashed the marketing budget for marketplace publicity and outreach. 

An African American Woman is smiling at the camera, she is Willona Stallings, director of NC Get Covered, a coalition that connects people with health insurance coverage.
Willona Stallings, director of NC Get Covered. Photo courtesy of Willona Stallings.

“It’s a small win that we’re being steady,” she said. 

Pressure point on rural hospitals

But even at its current levels, the state’s coverage gap affects those who care for the uninsured, said John Holahan of the Urban Institute, a D.C.-based economic and policy think tank. 

With many of the uninsured in North Carolina living in rural areas, particularly in the mountains and southern coastal plains, the gap can worsen financial distress on the state’s rural health care facilities. Expanding Medicaid, Holahan said, could lessen that pressure. 

The impact on North Carolina could be significant. A recent analysis by UNC Chapel Hill researchers found that four rural hospitals in the state were at high risk of financial distress, with an additional nine at a “mid-high” risk. One hospital, Martin General Hospital in Williamston, announced this month it’s dropping labor and delivery services, a needed, but costly service. 

And though financial distress is not necessarily an indication that a hospital will shutter, the consequences of a hospital’s closing or curtailing its services to stay afloat can affect the health of a community as a whole.

“It’s not just a matter of the impact on people’s lives,” Holahan said. “But it’s also the institutions that care for [the uninsured].”

To Curb Rising Health Insurance Costs, Some States Try ‘Reinsurance Pools’

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To Curb Rising Health Insurance Costs, Some States Try ‘Reinsurance Pools’ - North Carolina Health News

Some states' legislatures are experimenting with creative ways to bring down the cost of health insurance for their residents.

By Michael Ollove

Stateline

A couple of years ago, the health insurance exchange in Minnesota – MNsure – was in deep trouble. Health insurance premiums for individual policies had shot up by as much as 67 percent, among the steepest increases in the country.  Insurers were abandoning the market, leaving 116,000 Minnesotans with scant choices.

The Minnesota Legislature offered a solution: a $271 million, publicly funded reinsurance pool that would help health insurance companies pay the most expensive medical claims, thereby lowering overall insurance premiums. The hope was that backstopping the insurers would stabilize the market and halt the rocket-like rise in premiums.

So far, so very good. In its first year, the reinsurance pool has performed even better than expected. According to the Urban Institute, 2018 premiums offered on MNsure not only didn’t increase, they fell by 15 percent.

Minnesota’s peers are paying attention. The Gopher State is one of four states trying to calm roiling health insurance markets by creating state reinsurance pools – even as actions by Congress and the Trump administration continue to create uncertainty in the health insurance industry.

Maryland became the latest to do so when Republican Gov. Larry Hogan last week signed a bill creating a reinsurance pool financed in part in the next year by a $380 million tax on health insurers. Another six states are taking steps to launch their own reinsurance programs.

Reinsurance has long had a place in the private insurance market.

Essentially, it entails insurance companies taking out their own insurance to protect themselves when they are hit by an unexpectedly high claim, “like when somebody needs a heart transplant or a liver transplant or something else where costs are over, say, $100,000,” said Brad Herring, a health economist at the Bloomberg School of Public Health at Johns Hopkins University.

A public health reinsurance plan works the same way, except the state reimburses insurers for claims that climb above a certain set figure, depending on the plan.

In Minnesota’s reinsurance program, health insurers are eligible for reimbursements from the state for claims between $50,000 and $250,000. The insurers are responsible for amounts over $250,000.

Allison O’Toole, MNsure’s chief executive officer, said Minnesota acted in response to soaring premium increases and the departure of insurers such as Blue Cross and Blue Shield, the largest seller of individual policies in Minnesota at the time. No insurers have left the Minnesota market since the reinsurance pool launched.

“We were taking it on the chin. We were really in crisis,” O’Toole said. “This has provided immediate and positive results.”

Alaska, which created a reinsurance pool in 2016, also saw a year-to-year decrease in premiums. A third state, Oregon, authorized the creation of a reinsurance program last fall, but that action came after the premiums had already been set for 2018.

But the fix in Minnesota is temporary. The Legislature ponied up about quarter of a billion dollars for two years, with a roughly equivalent amount expected to come from the federal government. But, O’Toole says, that state support won’t last.

“Minnesota had a significant budget reserve a year ago, so we had money for it,” O’Toole said. “We won’t have that going forward.”

That is why O’Toole and many other state officials want the federal government to help fill state reinsurance pools.

Health policy analysts say the situation has only grown more pressing in recent months.

In December, Congress eliminated the so-called individual mandate as part of the new tax law, meaning that healthy people – who would pay premiums but be unlikely to need expensive care – can now opt out of insurance. And the Trump administration scrapped federal subsidies that were worth about $7 billion a year to insurance companies. Analysts say those actions are likely to lead to higher premiums for those remaining on the individual market and increased financial pressure on insurers.

There were two bipartisan bills in the Senate – one cosponsored by Republican Susan Collins of Maine and Democrat Bill Nelson of Florida, and the other by Republican Lamar Alexander of Tennessee and Democrat Patty Murray of Washington – that would have sent $5 billion a year to the states to finance their reinsurance pools. But neither was incorporated into the spending bill that Trump signed last month.

Avalere, a health policy research firm, estimated that the measure pushed by Collins and Nelson would have reduced 2019 premiums by 4 percent and increased enrollment in Affordable Care Act plans by 180,000. Not surprisingly, the bill had the strong support of the health insurance industry.

Although the Senate bills had considerable bipartisan support, there was significant opposition too. “This bailout approach is wrong and should be abandoned,” a report published last month by the conservative Heritage Foundation said. “It is fiscally imprudent and unnecessary.” It is the ACA’s “radical regulatory overreach,” that has caused chaos in the health insurance market, the report says.

At the same time, many left-leaning analysts say public reinsurance is yet another cumbersome solution to a fractured health care system that should be replaced by a single-payer model.

The Affordable Care Act set up a federal reinsurance pool to compensate insurers for taking on high-risk beneficiaries (who, under ACA provisions, could not be charged higher premiums than anyone else). The law set aside $20 billion, funded largely by a tax on insurers, for the years 2014 through 2016. After that, the pool disappeared, and the determination of congressional Republicans to repeal the ACA made renewal of the program a political impossibility.

States that want to establish their own reinsurance pools with some federal money must apply for a waiver from the U.S. Department of Health and Human Services to depart from some provisions of the ACA while still providing comprehensive, affordable health coverage.

In their applications to create reinsurance pools, states have argued that by reducing premiums, they will save the federal government money because it will have to pay less in tax credits for low-income policyholders.

Alaska created its reinsurance pool with $55 million from a tax on insurers, but it subsequently applied for and received a federal waiver, which is expected to bring in about $58 million in federal money. The state is hoping that because its individual insurance market is so small – about 23,000 people – the federal contribution will negate the need for it to put state money into the pool.

Oregon has committed $1.1 billion in state money, also raised through a tax on insurers, over 10 years and is hoping to receive $356 million in federal money during that period.

In February, Wisconsin enacted a $200 million law that, should the federal government grant a waiver, will funnel $30 million to $50 million in state money into a reinsurance pool with the federal government picking up the rest. Democrats joined Republicans in favor of the bill in both houses. The main opposition came from the progressive group, Citizen Action of Wisconsin, which called the reinsurance plan a bailout for insurance companies.

In Colorado, an early analysis projected that if the state had spent $177 million to create a reinsurance pool in 2018 and received $119 million in federal money, premiums would have declined by 21 percent. Colorado lawmakers are working on a reinsurance pool proposal.

But some financially strapped states simply don’t have the money to set up reinsurance pools. In 2018, Minnesota’s pool will total $271 million: $140 million in state money and $131 million in federal dollars. Minnesota had to provide all the money upfront, and the federal government will pay its share during the course of the year

Not all states can afford to do that, said Sarah Lueck, a senior policy analyst with the Center for Budget and Policy Priorities, a nonpartisan research and policy institute in Washington.

photo lookin up at the US Capitol with clouds behind it. Congress has tried, and failed, to make changes to the health care system in the past

Families Taking Medical Expense Tax Deduction Are Watching and Waiting on Congress

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Families Taking Medical Expense Tax Deduction Are Watching and Waiting on Congress - North Carolina Health News

Only a small minority of taxpayers take the deduction, which helps offset high or catastrophic medical expenses. But for the folks who do, it's vital.

By Rose Hoban

As Congress returns from its Thanksgiving recess to consider their tax overhaul plan, health care advocates in North Carolina have begun working to oppose several portions of the House bill.

Top of mind for some folks is elimination of the medical expense deduction, which allows for taxpayers with large medical bills to deduct some of those costs from their federal taxes.

For people with disabilities, some retired people and people with big expenses in a given year, the loss of the deduction would be a big hit.

“If your expenses are less than the standard deduction, you don’t claim it,” explained UNC law school professor Kathleen DeLaney Thomas, who teaches tax law.

Thomas explained that if people’s medical expenses tally up to more than 10 percent of their annual adjusted gross income, then a taxpayer can claim that excess amount.

But she noted that unless the total excess expenses are more than the $6,300 standard deduction (or $12,600 for a couple) it doesn’t make sense for a taxpayer to claim the deduction. And some people who could claim the deduction don’t do it because they don’t itemize on their taxes.

How might the medical expense deduction play out?

Taxpayer with gross income: $20,000
Wrist sprain costs: $1,700
Total medical expenses = 8.5% of gross income
Cannot take deduction.

Taxpayer with gross income: $30,000
Broken leg costs: $7,000
Total medical expenses = 23% of gross income
Can take about a $4,000 deduction, but this is still less than the standard deduction. Probably would not take deduction unless other deductions (such as mortgage tax credit, deduction on student loan interest, etc.) total more than $6,300.

Taxpayer with gross income: $50,000
Surgery costs: $23,000
Total medical expenses = 46% of gross income
Probably would take the deduction.

“If you don’t have really big expenses, it’s irrelevant,” Thomas said.

The loss of the deduction would be significant for people with big expenses like for Nancy Nelson, who lives in Chapel Hill and has had multiple sclerosis for decades.

Now 49, Nelson stopped teaching elementary school in her 30s when she could no longer stand at the front of a classroom. She then worked for a while as a research assistant.

“I describe it as a boring desk job with really good benefits,” she said. “I worked as hard as I could for as many years as I could prior to going on disability.”

Nelson is now paralyzed from her neck down and needs a specialized wheelchair. She needs equipment to assist with breathing at night, to get in and out of the shower, and in and out of the house. She also needs a part-time aide to help her with all these tasks while her husband Bob is at work. None of those expenses are covered by insurance, or by Medicaid or Medicare.

Last year, the Nelsons spent more than $37,000 out of pocket.

“My husband is not really looking for retirement, he says, ‘I’ll be working forever,’” Nelson said. “We are lucky in that when we bought our house many years ago, and our mortgage is quite low now.”

Even with “good” insurance

The medical expense deduction dates back to World War II when the American people bore the heavy tax burden of financing the conflict. The Roosevelt administration created the break on expenses over 5 percent of adjusted gross income in order to help those with “extraordinary” health costs. The rate at which the deduction kicks in has fluctuated over the years, until the Affordable Care Act set the trigger rate at 10 percent. The assumption under the ACA was that people would have more comprehensive coverage and so wouldn’t need the tax deduction.

shows a family portrait
Lindsey and Chad Cox with their children Cleo, 17, Marcy, 14 and Reece, 13. All three children have rare diseases which require extensive treatment and therapy. Photo courtesy: Lindsey Cox

But even with “good” insurance, Lindsey and Chad Cox have had trouble keeping up. Chad makes a little over $60,000 at Thomas Built Buses, a unionized subsidiary of Daimler. They have three children, 17, 14 and 13, with two types of genetic disorders.

“My oldest, has a genetic type of dysautonomia,” said Lindsey, who interviewed with NC Health News at Duke Medical Center while waiting for her children to finish a therapy session. The other two have Van Maldergem syndrome that manifests itself differently in Marcy, 14, and in Reece, 13, but both need extensive physical and occupational therapy.

“An average week, we have eight to 10 copays a week for therapy. It’s a copay every time you walk in the door, it’s not free,” she explained. “And the $30 copay doesn’t sound like much but when you have four therapy appointments in a week, it adds up. By the end of the month, we spend a house payment just on copays.”

The Coxes spent about $20,000 last year on medical expenses and got $4,000 back because of the medical expense deduction.

“We scrape by month to month so much that we can get behind on bills, we don’t get behind that our house gets taken from us, but we can get behind on the mortgage,” she said. “So when we get our taxes, or we save, it goes to catch us up on day-to-day living. For us, it’s the only stopgap we have.”

Lindsey described herself and her husband as conservative, both “card-carrying Republicans.” Her husband voted for Trump, she did not.

“This is my life and this is my income and you don’t have to follow a party line simply because that’s the party you follow, you can pick and choose what side you’re on when it comes to issues, right?” she asked.

But she said she had a “bad feeling” that the medical expense deduction was likely to go away once the Senate and House of Representatives sit down to reconcile their visions of the tax overhaul.

“All a crapshoot”

Last year, only 29.6 percent of tax filers took any deductions. In a study done in 2001, the IRS found only about 7 percent of all tax filers took the medical expense deduction, nothing compared to, for example, the mortgage interest deduction, which was taken by almost everyone who itemized. The people who itemize their deductions are usually solidly in the middle class, according to Gordon Mermin, an analyst with the bipartisan Tax Policy Center, because low-income earners often don’t have enough deductions to top the standard deduction.

According to analyses made by the Center (a project of the Brookings Institution and the Urban Institute), people who make between $75,000 and about $200,000 would see the steepest increases in their tax rates as a result of losing the deduction.

“Even if it were not repealed under the House plan, fewer people would take [the deduction] due to the doubling of the standard deduction,” Mermin wrote in an email to NC Health News. And because higher income people are more likely to itemize, if the deduction remains, the people taking it would skew toward higher income brackets.

“Anyone regardless of income level can have catastrophic medical expenses, e.g. long-term care expenses or expensive rare medical condition, while generally only the rich have very large mortgages, state and local taxes, or charitable contributions,” that are deductible, Mermin wrote.

At the Coxes’ income level, a doubling of the standard deduction could go a long way toward making up for what they would lose if the medical expense deduction goes away, especially in a year where they had lower expenses.

But someone like Art Cooper, 86, would be pummeled by the loss of the medical expense deduction. His wife Jean, 86, has been living in a skilled nursing facility at the Cooper’s continuing care retirement community in Cary, disabled by her rheumatoid arthritis and needing around-the-clock care.

Last year Jean’s expenses totaled more than $130,000.

“Our medical tax deduction was way over $100,000,” Art said. “If we lost that there’s no conceivable way that the increased standard deduction could cover that.”

He said that he and Jean had other Schedule A deductions. Nonetheless, they would be “way in the hole.”

Jean’s money management skills are what’s keeping them both comfortable, Art said. But he also anticipates that Jean will predecease him and “my expenses will plummet to nothing until ill health catches up with me.”

“I can blithely say that we’ll be OK, but …  it could be serious 5 to 10 years from now,” Art said. “It’s all a big crapshoot.”

He said he worried about people younger than him and Jean.

“Although there are people like me who can toss it off for the moment, there are others who will be really hit by it,” he said. “The impression you get is that Congress doesn’t give a damn about that.”

Orphan disease drug credit in Congressional crosshairs

Shows four children all dressed up for at a wedding.
The Hobbs children (l to r) Madison, Melanie, Michael and Meredith. All but Melanie have mitochrondrial disorder, a genetic disease which can cause muscle wasting, fatigue pain and a host of other problems. The three who have the disease each sleep on a ventilator at night and require nursing care. Photo courtesy: Jenny Hobbs

Three of Jenny Hobbs’ children have the same rare disease, mitochondrial disorder. Her middle daughter is currently in a clinical trial at the National Institutes of Health.

“There’s no FDA approved treatments for [my kids’] disease,” Hobbs said. She said when her children were finally diagnosed with “mito” seven years ago, there was no potential therapy on the horizon. Now, there are four clinical trials.

She’s worried about the House tax bill which eliminates a tax credit for pharmaceutical companies that work to develop drugs for such rare, “orphan” diseases, like mito. The Senate bill significantly cuts the credit.

“If they reconcile the two bills, there’s no telling how much, if any of it, will be preserved,” she said. “De-incentivizing private companies from developing drugs – because they’re the ones who are doing the development – is going to be devastating for the rare disease community.”

shows the senate floor on July 25, 2017

NC Senators Vote to Move ACA Repeal Bill Forward

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NC Senators Vote to Move ACA Repeal Bill Forward - North Carolina Health News

Both Burr and Tillis voted “aye” on the “motion to proceed,” which allows a piece of legislation to come up for consideration, debate and amendments. Then the real voting began.

By Rose Hoban

Senate Republicans took a dramatic step toward fulfilling their promises to repeal former President Barack Obama’s signature health care law, the Affordable Care Act, on Tuesday by approving a motion to begin debate on an overhaul.

By a vote of 50-50, with Vice President Mike Pence casting the tie-breaking vote, the repeal bill is now opened up to debate and an amendment process over the coming days. As senators voted on the measure, protesters yelled “Kill the bill” from the Senate gallery.

The outcome represents at least a partial victory for President Trump, Senate Majority Leader Mitch McConnell and others who have sought to repeal the ACA — a longtime promise by congressional Republicans.

U.S. Sen. Richard Burr (R-NC)
U.S. Sen. Richard Burr (R-NC)

As expected all Democrats voted against the motion, joined by Republican senators Susan Collins of Maine and Lisa Murkowski of Alaska. Both North Carolina senators Thom Tillis and Richard Burr voted in favor of moving forward.

“Over the last several years, Obamacare has hit hard-working North Carolina families with skyrocketing premiums and fewer choices, while small businesses have struggled to comply with the law’s costly and burdensome regulations,” wrote Tillis on his website late Tuesday. “The status quo of Obamacare is unsustainable, and today’s procedural vote sets the stage for an open amendment process where all Senators – Republicans and Democrats alike – will be able to put forward their ideas to reform our nation’s health care system.”

And Burr said he’s glad the Senate has finally begun debate.

“This debate will allow each and every Senator the opportunity to bring forward their ideas for consideration through an unlimited amendment process,” read a statement on Burr’s website. “It is my hope that at the end of this process we will pass legislation fulfilling our promise to the American people: repealing and replacing Obamacare.”

Close to home

Medical groups have come out strongly against the GOP effort, both nationally and in North Carolina.

The American Medical Association has decried the Senate’s actions, even the more conservative North Carolina Medical Society noted on its website that the organization is closely monitoring the legislation and contacting Burr and Tillis.

“We are watching to ensure that any legislation does not harm access to affordable, meaningful health care for North Carolina,” the post read.

headshot of Tillis
Sen. Thom Tillis, official Senate photo

“Pending federal health care reform threatens to undermine our state’s good work to protect children from abuse and neglect and to help victims recover,” wrote Rob Thompson from NC Child, an advocacy group that’s worked to improve the foster care system.

“When children come to the attention of the child welfare system, they have invariably experienced significant trauma that demands a robust array of services and support to help them recover,” Thompson pointed out. Most of those children are covered by Medicaid, which is likely to be cut under the senate bill.

“We are all one accident, one test result, one diagnosis away from this impacting any of us personally,” said Jenny Hobbs, the mother of three children who each have a rare muscle wasting disease that requires intensive medical management.

Hobbs said some of the other founders of the Advocates for Medically Fragile Kids NC felt overwhelmed and stressed. “A lot of people have said they need to take a social media break tonight because they can’t stand the thought to hear what might happen,” she said, noting that she was feeling disheartened.

According to an analysis by the think tank Urban Institute, spending on Medicaid in North Carolina would be 13.6 percent lower by 2022, and the uninsured rate would increase by 39.4 percent. All told, about 519,000 people of all types would lose coverage, the analysis found, including those with employer-sponsored insurance, individuals in the marketplace and kids on Medicaid.

After passage of the ACA, North Carolina’s rate of uninsured people fell 4.7 percent to a record low of 13.3 percent by the end of 2015, according to an analysis by the NC Institute of Medicine.

In a separate analysis, the IOM found that older low-income adults would be hit especially hard by the bills proposed in Congress. Depending on the county, a 60-year-old who makes $20,000 would end up paying anywhere from $9,740 to $12,380 per year for insurance coverage – that’s after the tax credit proposed by Republicans.

Zigzag course

What happens next is unclear.

The first vote was on the health care legislation that the U.S. House passed in May. But the Senate has not considered that bill, instead crafting their own version. That bill failed late last night with nine Republicans voting against. Burr and Tillis voted for the bill.

The Senate is likely to vote on one or more other bills: it’s expected senators will amend the bill to add language from an old bill that was voted on in 2015. Finally, there’s legislative language floating around that provides for a “skinny repeal” measure that would make fewer changes to existing law.

Senate leader Mitch McConnell (R-KY) said there would be an “open amendment process,” which means that there’s no telling what the final bill will look like. Whatever bill emerges from the Senate, if passed by that body, will then be sent back to the House to be taken up or to a conference committee appointed by the two bodies.

“This is just the beginning,” McConnell said after the vote on the motion to proceed. “We’re not out here to spike the football, but we’ll finish at the end of the week.”

The process allows for 20 hours of debate, and then amendments.

“Members of both parties can offer amendments to try to improve the piece of legislation and at the end, you come to a decision of whether you want to vote for or against the final amended package, that’s where we are,” said John Barrasso (R-WY), a physician, who said he wanted to help people get the care they needed at a lower cost.

When asked if the process he’s using to get the bill moving was “responsible,” McConnell said different people have different ideas of what form the bill should take.

“We’ve watched a similar process seven years ago, they had a lot of differences,” McConnell said, referring to Democrats, who heard amendments to the Affordable Care Act in 2009. But when that bill was being debated, there was more clarity on what was being decided as the process began.

“We’re going to have a thoroughly open amendment process in a situation where 51 votes can change the bill,” McConnell said. “It’s really entirely impossible to predict… exactly what amendments will be offered or what amendments will succeed.”

That also means that when the final result bill comes up for a senate vote, there will not have been enough time for the nonpartisan Congressional Budget Office to weigh in on the economic consequences.

Democrats are saying that if any bill that passes allows Republicans to go into conference with the House and work out the details there. Connecticut Sen. Chris Murphy tweeted late Tuesday that the House bill, “would act as default for any negotiations, and negotiations would be minimal bc Senate GOP would have lost all bargaining power by their inability to produce a bill.”

The original bill passed by the House would slash Medicaid over the coming decade in addition to leaving more than 23 million uninsured.

shows a box containing naloxone pre-filled syringe

Spending on Opioid Addiction Medications Rose Sharply Since 2011

by

Spending on Opioid Addiction Medications Rose Sharply Since 2011 - North Carolina Health News

As the number of people using opioids climbed in the past decade, spending on treatment for those people climbed to close to $1 billion.

By Sarah Fentem

Side Effects Public Media

Medicaid spending on three important medications used to treat opioid addiction increased 136 percent nationwide between 2011 and 2016, according to a new report from the Urban Institute, a public policy think tank based in Washington D.C. The increases were much higher in some states—in seven states, rates rose more than 400 percent.

In North Carolina, Medicaid spending on buprenorphine alone went from $11.4 million in 2011 to $25.3 million in 2016.

The authors of the report draw a parallel between the Affordable Care Act’s Medicaid expansion and spending on buprenorphine, naltrexone and the overdose antidote naloxone, saying it has brought addiction treatment to previously underserved populations.

“What we saw was this gigantic, rapid, ongoing expansion in treatment,” says report co-author Lisa Clemans-Cope. “It was particularly fast after 2014 when the big Medicaid expansion came into play. There’s definitely an effect of people getting access to treatment—that’s the primary driver of growth of spending.”

The findings come at a time when the future of Medicaid hangs in the balance. The Obamacare “repeal and replace” bill currently before the Senate would place a cap on federal Medicaid dollars and gradually phase out the Medicaid expansion. The nonpartisan scorekeepers at the Congressional Budget Office estimate the bill would result in 15 million people losing their Medicaid coverage.

As an olive branch to opioid-ravaged states, certain congressional Republicans have floated the option of adding an extra $45 billion to the bill earmarked for states to use on opioid treatment. The current Senate version offers $2 billion for the states to use in 2018.

Clemans-Cope says neither of those amounts are going to make up for a loss in Medicaid spending.

“Either the $2 billion or the $45 billion that have been bounced around are really nothing compared to the treatment needed,” she says. “When you look at rapid expansion in spending—it’s hard to tell at what point the need would be satisfied.”

The Urban Institute report states spent nearly $1 billion on medications for treatment alone in 2016. And those aren’t the only health costs by any means. Harvard health economics professor Richard Frank told NPR the cost of treating opioid addiction could be as high as $180 billion over ten years, taking into account other forms of treatment and related health care needs.

The Senate bill not only proposes to eliminate the expansion but also to change Medicaid to block-grant style payouts.

Ben Bennett, a policy and research analyst at the Indiana Council of Community Mental Health Centers, says the Senate plan could potentially reverse any progress that’s been done to treat addiction.

Total buprenorphine prescriptions for opioid use disorder by state Medicaid expansion status.

“The danger of just giving states big block grants is they can prioritize those dollars wherever they want,” he says. “Certain populations like the addiction population may be overlooked.”

Bennett thinks there have been multiple factors feeding into the increase in addiction medication spending. For example, an increase in stigma is slowly contributing to more people seeking treatment. Still, he says Medicaid expansion is most likely the largest contributor to the increase in spending in Indiana, adding Indiana’s expansion made addiction treatment available to people who had no way to pay for it before.

“I’m certain the ACA absolutely helped increased access to medication, and that’s a big chunk of why you’re seeing the numbers skyrocket,” he says. “A lot of folks with addiction issues don’t necessarily come from the best of circumstances and they might need to rely on Medicaid and other social infrastructure. It’s not surprising you see Medicaid dollars increase alongside.”

The Urban Institute report also highlighted different growth rates among addiction-treatment medications, drawing from state-by-state drug utilization data from the Centers for Medicare & Medicaid Services. The vast majority of the Medicaid dollars were used to purchase buprenorphine, which reduces cravings in people with addiction. However, purchase of naltrexone (which prevents cravings) and naloxone (which can reverse the effects of an opioid overdose) grew at a far more rapid rate, with naloxone spending increasing 90,205 percent since 2011.

According to the IMS Institute for Healthcare Informatics, in 2016, close to one-fourth of buprenorphine prescriptions were covered by Medicaid programs. The amount of spending varies widely among states, even within the group that took the ACA’s Medicaid expansion. For example, in Indiana, close to 17 percent of buprenorphine prescriptions in 2016 were paid for by Medicaid. In other states, such as Ohio, where almost half of buprenorphine prescriptions are covered by the program, that proportion is much higher.

“Those states with expanded Medicaid coverage are likely to have a higher proportion of buprenorphine prescriptions covered by Medicaid and a smaller proportion paid for by cash compared to states that have not expanded Medicaid coverage,” the IMS study authors wrote.

Because the Urban Institute only collected prescription data on buprenorphine, naloxone and naltrexone and not methadone, another opioid treatment, spending is actually even higher than reported, said Clemans-Cope. (Methadone treatment is not reported in the CMS data the organization used in the report.) It also only looked at prescription medication spending and didn’t account for dollars utilized for, for example, therapy or other co-morbidities that occur alongside addiction, such as HIV or Hepatitis C.

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