B.J. Welborn of Charlotte is such a fan of the Affordable Care Act that she wrote President Obama a thank-you letter last fall. For $327 a month, the 64-year-old leukemia survivor got a Blue Cross policy that covered more than $100,000 a year for pills that keep her in remission.
But by the time the White House response arrived, Welborn was in a frenzy. A government error in her 2015 renewal led to the cancellation of her policy, which she discovered only when she tried to fill her February prescription.
As days ticked by without the needed medication, Welborn couldn’t get anyone at the insurance company or the federal exchange to resolve the problem.
“It’s just the perfect storm of mistakes and nobody can fix them,” she said. “I feel absolutely wiped out by this battle.”
Welborn’s quandary illustrates not only the benefit of the act but an ongoing challenge.
N.C. health insurance officials say complaints dropped in 2014, even as a problem-plagued federal website debuted and the ranks of the insured swelled. That’s because people like Welborn, previously denied insurance for expensive medical conditions, had accounted for the bulk of calls before the act took effect. Starting last year they had a guarantee of coverage and, in many cases, federal aid to help pay for it.
The catch? When you pair private insurance companies seeing a surge of customers with a federal agency making millions of monthly payments, small mistakes can spiral into massive headaches. Some customers report spending hours on the phone trying to get the two bureaucracies to work together.
“The process stinks,” said Hardie Steitz of Charlotte, who spent more than 50 hours trying to resolve a problem that remains under appeal. “Insurance companies are run like a business. The Affordable Care Act is run like the government. How do you merge those two philosophies together to get a working relationship?”
The N.C. Department of Insurance can help customers get both groups on the line to hash out issues. But Susan Nestor, director of the department’s Health Insurance Smart NC program, said her staff can’t make it quick and easy.
“To your consumers who say it takes a lot of time, we’d say, ‘Yeah. That’s exactly what we’ve found,’” she said.
As some customer-service challenges related to the ACA are resolved, new ones emerge. Website failures that nearly torpedoed the system’s start-up in fall 2013 were largely gone a year later when 2015 sign-ups began. But Smart NC saw a spike of calls in September and October, as customers got renewal rates – sometimes with big hikes – and had to decide whether to switch plans.
Now people with subsidized insurance are filing 2014 tax returns, which can bring surprises about how much they owe. Meanwhile, people who remain uninsured and are hit with a 2014 tax penalty might qualify for one more chance to enroll this spring.
A costly lifeline
Thirteen years ago, Welborn was diagnosed with chronic myeloid leukemia, a cancer of the blood. Her doctor put her on Gleevec, a pill that has greatly extended survival. But that victory comes at a cost: Welborn says the drug runs $9,284 a month, or about $111,400 a year, almost double what she paid initially.
Gleevec has become emblematic of one of the biggest challenges of controlling health care costs. High-priced specialty drugs accounted for about 1 percent of all prescriptions in 2013 but more than 25 percent of pharmacy spending. Costs keep rising, even as new drugs come online.
For years, Welborn, a writer who now works grading exams, got coverage on her husband’s insurance. But she’s divorced now, so she was thrilled when she went to the ACA exchange in 2014 and got a $764-a-month policy from Blue Cross and Blue Shield of North Carolina. She paid $327, with the federal government making up the difference. By year’s end she had paid about $9,000 out of pocket for all her medical costs. She thought that was a good deal.
Greg Stephens, executive director of the Birmingham-based National CML Society, agrees. “For most patients we’re still having substantial co-pays – $2,000, $3,000 a month,” he said. While the ACA mandates prescription drug coverage, he said, each policy has its own complexities.
“Some days,” Stephens said, “I’m just as confused as the first day this came out.”
Last November, Welborn called the federal exchange to update her income for calculating her 2015 subsidy. Her monthly payment rose to $493 and her out-of-pocket costs went up.
But Welborn was still so grateful she wrote the president a thank-you letter.
Her January bill from Blue Cross was for the full premium, $907. Welborn paid her share and sent the company a note saying the government should be covering the rest. When she tried to fill her February prescription, she says, the mail-order company said her policy had been canceled.This copyrighted story comes from The Charlotte Observer, produced in partnership with KHN. All rights reserved.
Welborn began calling the exchange and Blue Cross. By Feb. 20, she said she had spoken to six ACA customer representatives, two supervisors, a specialized caseworker and the federal government’s Advanced Resource Center. At Blue Cross she had been through three customer reps, two supervisors and the vice president of customer service.
And she wasn’t getting answers. The insurance company said the problem came from the federal exchange. The government staff kept saying things like, “The computer won’t let me fix the problem.”
Some help, new issues
Welborn’s policy was restored after the Observer contacted Blue Cross and the U.S. Department of Health and Human Services.
A federal spokeswoman said she couldn’t discuss Welborn’s situation but assured a reporter it was being straightened out. Shortly afterward, Blue Cross told Welborn her subsidy and her policy had been reinstated.
Blue Cross spokeswoman Ryan Vulcan said last week that the federal marketplace sent two files on Welborn, one with a subsidy and one without. The second submission overrode the first, Vulcan said, so when the marketplace sent a cancellation, apparently trying to eliminate the duplication, the company dropped the only policy it still had on file.
Vulcan says Blue Cross should have sent a cancellation letter, but Welborn says she never got one.
There was also a new twist: Blue Cross said in reviewing Welborn’s records, the company discovered she had missed a payment in 2014. Welborn disagrees, and she says she’s baffled by the series of bills she has gotten.
In the first three months of this year, Welborn got three bills for amounts ranging from $741 to $1,814, without explanation of the varying totals. The oddest came on March 4, when she was told to pay $1,614 to cover “1/01/15 to 1/01/15.”
Welborn says she’s through wrangling. She will become eligible for Medicare when she turns 65 in May, and she plans to wait it out.
Early in her struggle, Welborn told her story in an online forum for people with her disease. A woman in Massachusetts who had just switched medications sent her a month’s supply of Gleevec.
Welborn is using that to tide her over, and hopes to get another month’s supply from the manufacturer’s assistance program for the uninsured.
“Sometimes you’ve got to acknowledge defeat,” she said. “Sometimes things are too big.”
The following is a guest post by Liah Caravalho, program specialist with the Office of Legislative and External Relations at the Law Library of Congress. Liah’s previous contributions include: Magna Carta Event Celebrates Constitution Day and An Interview with Kenneth W. Mack, Inaugural Lawrence D. Biele Professor of Law.
On Wednesday, March 11, 2015, the Law Library of Congress hosted Meg McAleer, senior archives specialist from the Manuscript Division for a power lunch program in celebration of Women’s History Month to discuss civil rights activist Rosa Parks and her experience processing the Rosa Parks Manuscript Collection.
Rosa Parks made her indelible mark on American history when she courageously refused to relinquish her seat to a white passenger on a Montgomery, Alabama bus. Parks’ subsequent arrest on December 1, 1955 became the impetus for the Montgomery Bus Boycott in which African-Americans avoided riding city buses to protest segregated seating. What is less commonly known, according to McAleer’s account of processing the collection, is that Parks’ powerful and poignant writings reveal a woman who was acutely attuned to the systemic discrimination of the segregated South and was actively involved in the civil rights movement well before and after that fateful December day. She was “more than a one-act play,” McAleer said.
The Rosa Parks Collection, which is on loan to the Library for 10 years from the Howard G. Buffett Foundation, spans from 1866-2006 and contains 7,500 items and 2,500 photographs. McAleer and her colleagues had the fascinating, albeit challenging, task of organizing the items in an accessible way for Library of Congress researchers. They methodically organized the items into categories such as–family papers, correspondence, writings, honors (including Parks’ Presidential Medal of Freedom and Congressional Gold Medal), financial records, books, and what McAleer called “miscellany,” a category for an assortment of items that do not quite fit into a larger category. For example, Parks’ recipe for “featherlite” pancakes is in the miscellany category. McAleer explained that this recipe and other such items “connect us to her [Parks] as a person.” Additionally, other items such as Parks’ poll tax receipt from 1957 remind us of the discriminatory voting practices that occurred in the Jim Crow South as a means to hinder African-Americans from exercising their voting rights by requiring literacy tests and imposing poll taxes. Parks, according to McAleer, voted for the first time in the 1940s after numerous attempts to pass voting tests and was required to pay retroactive poll taxes when she finally passed the voting test.
McAleer also described how the collection revealed the personal relationships that Parks had with her mother, Leona McCauley, and her husband, Raymond Parks, who was also an activist in the NAACP– having served as an advocate in the Scottsboro Boys case, as well as her more estranged relationship with her father, James McCauley. Parks’ autobiographical writings about her early life and her other writings about the Jim Crow South often reflected on the horrors and humiliation she and other African-Americans experienced from being denied access to certain schools, libraries, and restaurants to the discriminatory practices in employment, housing and education. In particular, Parks’ writings reveal that the Emmett Till and the Jeremiah Reeves cases ignited a determination in her to work on social justice issues. In fact, prior to her December arrest, photographs and memorabilia from the collection show that Rosa Parks received activist training at the Highlander Folk School, a social justice training school, where Parks worked with other prominent civil rights leaders.
Furthermore, McAleer shared that the love letters and cards that Parks wrote to her husband addressed the personal price their family had paid as a result of her act of protest on December 1, 1955. He lost his job as a barber and she was ostracized and later let go from her job as a seamstress at the Montgomery Fair Department Store. Financial records from the collection indicate that loss of their employment resulted in years of poverty before they finally reached a level of financial stability.
In closing, McAleer’s findings from the Rosa Parks Manuscript Collection painted a much more complex and radical Rosa Parks than the quiet seamstress who refused to give up her seat on a segregated bus. During the Montgomery Bus Boycott, she often traveled alone to participate in political rallies, interacting with the political elite of her era such as First Lady Eleanor Roosevelt and Mr. and Mrs. Thurgood Marshall. In subsequent decades, Parks campaigned and worked for U.S. House Representative John Conyers, supported Malcolm X and the Black Power Movement. Rosa Parks had a “deep sense of reverence,” McAleer said. She was well aware of the importance of “showing up to do work for something greater than oneself.”
Congressional Budget Plans Get Two-Thirds of Cuts From Programs for People With Low or Moderate Incomes
How early accountable care efforts shaped payment reform in the ACA and bipartisan reform ever since
The Center for Medicare and Medicaid Innovation recently announced the creation of the Next Generation Accountable Care (ACO) Model, which builds on the experience of the existing Pioneer ACO Program and Medicare Shared Savings Program (MSSP). This new model offers an opportunity for participating organizations to assume greater financial risk, including capitated payments; provides greater payment and care coordination flexibility; allows ACOs to earn great shared savings than in previous Medicare accountable care programs; and make needed adjustments to financial benchmark calculations. At the same time, CMS is in the process of making changes to the MSSP following the solicitation of public comment on a proposed rule released in December. These developments are an opportunity to further refine Medicare ACOs and set participating organizations on a more sustainable path for years to come, as we noted in our comments filed in February.
The path to Medicare ACOs began in 2005 with the CMS Physician Group Practice (PGP) Demonstration, a five year shared savings demonstration program that included 10 provider organizations. By the fifth performance year, all 10 of the physician groups achieved benchmark performance on at least 30 of the 32 quality measures, while 7 achieved benchmark performance on all 32 measures. Seven of the physician groups shared in savings during at least 1 of the 5 performance years.
Based upon the early demonstration of the potential for ACOs, the Center for Health Policy at Brookings in partnership with the Dartmouth Institute for Health Policy and Clinical Practice launched a comprehensive research effort to refine and promote the shared savings concept. In addition to published articles on accountable care, in 2007, Brookings/Dartmouth launched ACO pilots at five health care organizations (HealthCare Partners, Monarch HealthCare, Tucson Medical Center, Norton Healthcare, and Carilion Clinic). Through shared savings arrangements with commercial health plan partners, the pilot sites led to better understanding of the fundamental lessons of accountable care implementation and practice. Following the establishment of the pilot sites, Brookings and Dartmouth created the ACO Learning Network in order to foster the sharing of best practices and help providers, payers, and other related stakeholders understand and succeed at accountable care.
In conjunction with these ACO learning activities, Brookings and Dartmouth began discussions with the Congressional Budget Office (CBO) about how accountable care could be expanded to Medicare. In December 2008, the CBO included the idea of bonus-eligible organizations (BEOs), based on ACO principles, in their budget options book. In their budget options book, CBO noted the important contributions of three organizations: Brookings, MedPAC, and CMS. During the ongoing health reform debates in 2009, Brookings continued to provide thought leadership to members of Congress on how to develop ACOs for Medicare. A bicameral bill, Patients’ Choice Act, sponsored by Republicans in May 2009 included a Medicare ACO demonstration program, which closely resembled what is now the MSSP.
Following modestly favorable scoring by the CBO and growing bipartisan support for a Medicare ACO program, the MSSP model was included in the Medicare program as section 3022 of the ACA. The ACA also created CMMI as a way to foster the development of innovative payment and service delivery models to reduce program health system costs while maintaining high quality care. In January, 2012, CMMI launched the Pioneer ACO for 32 advanced health systems ready to implement accountable care. A few months later, in April 2012, the first round of MSSP participants organizations was announced. As an open-enrollment program, the MSSP currently has 405 participating ACOs, including 89 new organizations that began in January 2015. There are currently 19 Pioneer ACOs after nearly a third of the original organizations left the program as a result of dissatisfaction with program requirements and less favorable results than expected. Medicare ACOs collectively serve 7.8 million beneficiaries.
The evidence on Medicare ACOs to date is encouraging, but also highlights some areas for further improvement and development. Roughly half of all Medicare ACOs have been able to reduce costs below their financial benchmark with approximately a quarter reducing costs significantly enough to qualify for shared savings. Meanwhile nearly all ACOs have been able to improve their performance on 33 quality measures.
The relative success and value of ACOs to date has been a driver for continued bipartisan support. In fact, bipartisan legislation introduced last year to repeal and replace the SGR included incentive payments for providers who receive a significant portion of their revenue from an alternative payment model (APM), such as an ACO. Similarly, the latest SGR repeal proposal released this week includes a five percent bonus to providers who receive at least 25 percent of their Medicare revenue through ACOs and other APMs in 2018-2019. We anticipate that bipartisan support for ACOs will continue into the future.
With the recent announcement of the Next Generation ACO Model and ongoing refinement of the MSSP, CMS has also indicated a clear commitment to continuing to advance accountable care models. There are many challenges ahead, which we and other organizations have addressed in comments and policy briefs; however, there are also great opportunities ahead to continue improving accountable care and helping organizations advance to increasing financial risk over time. The Center for Health Policy will continue to support these efforts in the coming years through the ACO Learning Network, our policy work, and collaboration with those implementing and practicing accountable care across the country.Authors
- S. Lawrence Kocot
- Ross White
Say you’re a pediatrician whose 8-year-old patient is showing symptoms of Attention Deficit Hyperactivity Disorder. That’s not unusual, up to 12 percent of American kids are diagnosed with it.
But you know that in general, ADHD treatment tends not to work as well in poor kids, like your patient, as it does in their better-off peers. And you also happen to know that the symptoms began two months after the patient’s father was incarcerated. It might be ADHD, or it might just be horrible stress. What do you do?
This is the kind of challenge that routinely faces pediatricians at Boston Medical Center, where most of their patients comes from the inner city, says Dr. Michael Silverstein, chief of the hospital’s division of General Academic Pediatrics.
In a study of 156 young patients just out in the journal Pediatrics, Silverstein and colleagues report some success with an experimental intervention they designed to address such challenging cases.
They found that with a relatively modest investment — about a week of training for a care manager that the patients’ families interact with anyway — they could “move the needle” on ADHD symptoms and social skills, he says.
I asked him to elaborate. First, the background:
General pediatricians tend to be fully equipped to treat straightforward cases of ADHD, Dr. Silverstein says, but for tougher cases like the one described above, and many among BMC’s population of vulnerable kids, they need specialists to address the more vexing issues. One proven model of providing that expertise is called “collaborative care.”
The pediatrician is “driving the boat,” he says, but the specialists “essentially provide what we call ‘decision support.’ They say, ‘For someone like who you’re describing to me, I would try something like this.’ They give the rules of the road to the primary care doc, but the primary care doc drives.
And because it’s so hard to get busy people into the same room at the same time, the communication between the primary care doctor and the specialist is mediated through a ‘care manager’ intermediary.” (Ideally, a child psychiatrist would be right down the hallway, but that’s “pie in the sky” for under-resourced hospitals like the BMC, he notes.)
Research has shown that collaborative care works well, “but at BMC and places like it, this way of delivering care is probably necessary but not sufficient.” The reason? “A lot of kids with symptoms of ADHD don’t get better even when treated optimally. Why is that? You give them access to proper medication, the diagnosis is made properly, yet they don’t get better. And we homed in on three reasons that kids with ADHD symptoms may not get better that really were relevant to our population:
• The first is that we know that parents of children with ADHD have a disproportionate burden of mental illness themselves. You could imagine a child’s improvement trajectory might not be as good if his mother is depressed.
• Also, in general we see a guardedness about going to the doctor for behavioral problems — that’s not in everyone’s cultural frame of reference. So the idea of medication for inattention might not be where everyone is at. These are potentially stigmatizing conditions, so lots of times people recommend a course of action — medication or something else — but the families aren’t quite there.
• And the third reason is that we know that for certain children with ADHD, behavioral therapies work really well in addition to medication, but our families tend not to have access to those.
So we developed an intervention that was hung on the structure of collaborative care, where the care managers who serve as intermediaries between specialists and generalists are trained to address those three things.
The care manager typically would be bilingual, usually a woman in her mid-twenties. We would train this person in an interactional technique called motivational interviewing. It’s a very non-judgmental, client-centered way of interacting with a patient or patient’s family that lets them – the patient’s mother or father — explore why or why not they might be ambivalent to engage with care on behalf of their child or their own mental health.
So the care managers that were providing an enhanced level of care had week-long training in motivational interviewing and also had training in the fundamentals of how to help parents manage what we sometimes call oppositional behaviors in their children in a much more positive way, reframing certain behaviors.
It included some really concrete parenting techniques that might be applicable to kids with ADHD or oppositionality. In essence, that’s what the enhanced care arm of this study got — a little more than a week of training for these young women.
In terms of outcomes, the study looked at a couple of things: We looked at the traditional symptoms of ADHD, which would be inattention and hyperactivity/impulsivity. We looked at oppositionality and we looked at social skills, which some people think is more important. Looking at kids a full year down the line, we were able to move the needle in these categories.”
So now what?
“The researcher in me wants to replicate this and be sort of guarded in interpreting the results,” Silverstein says. “Provided these results hold up, I think it’s an issue of implementation, and when people talk about the Patient-Centered Medical Home, we really have to think about what this has to look like for specific populations that have specific challenges.
I’ve been making the case that a thoughtful, coordinated way of providing care for low-income kids is through mechanisms that address the health of both generations, parents and children, and pay attention deliberately to issues of trust of the health care system and cultural brokerage.
That’s our hypothesis. One of the things about a study like this — a randomized trial is widely seen to be the gold standard in proving what happens when you do something — but when that something is complicated or has multiple facets to it, you’re often left saying, ‘Why, why did this particular project generate these results?’ And that’s a viable next step – to figure that out.
My gut sense is that the active ingredient of our care model was that this motivational interviewing component started a cascade of events that led to more discussion between family and pediatrician around prescribing patterns of ADHD medication and other culturally acceptable ways of addressing the symptoms.
At the end of the day we can’t say, ‘We know exactly what the active ingredient of this was.’ But it had to do with meeting the families where they are and having them accept certain elements of the care.”
Readers, reactions? Thoughts about using a model like this even in better-off families?
For more than three years, Devon Jones gave himself weekly shots of testosterone to align his body with the feeling that he was male. The shots worked. Jones’ voice dropped, body fat shifted from his thighs and breasts into his neck and stomach, and he sprouted facial hair.
But then last year, Jones, a 27-year-old author who lives in Dorchester, stopped taking the hormone.
“I realized that wasn’t the look I was ultimately going for,” Jones said. “I wanted to still have breasts that had substance to them, they’d really shrunk and I wanted that back.”
And Jones wants the option of getting pregnant and having a child, something he could not do while testosterone overpowered estrogen in his body. It’s not clear if he will be able to get pregnant now.
“I’ll only know that when I try,” he said.
Jones still use male pronouns. The changes to his voice are permanent. But as estrogen again becomes the dominant hormone in Jones’ body, the hair on his face doesn’t grow as quickly and his body fat has shifted back.
“I have a more curvy feminine shape. I’m more comfortable now with people being confused. So it’s an evolving process. It’s weird to be in the middle of it right now actually, and talking about it,” Jones said, his voice trailing off.
Jones is part of a growing group of young adults who are genderfluid and are using hormone therapy and surgery to create bodies that matches this identity.
“It’s molding my body to fit my mind, physically changing myself so that I feel more comfortable as a person,” said Dale Jackson, a 33-year-old author who lives in Atlanta. Jackson takes a low dose of testosterone for two reasons. First, because he’s worried that a full dose would exacerbate his anxiety. And second, because a half dose helps him moderate the effects.
“I like the idea of being in the middle,” Jackson said. “This allows me to explore my masculine side, but I don’t want to push it too far.” Jackson does not want a big bushy beard or arms so hairy “that gorillas were looking at me like, is that our cousin?”
Both Jones and Jackson are under the care of physicians who are helping them pursue a more gender neutral body. But there are no guidelines. So far, in the emerging world of transgender medicine, protocols assume that patients want to end up on one end of the spectrum or the other, male or female, says Dr. Tim Cavanaugh, who runs the transgender health program at Fenway Health.
“[The guidelines] really don’t address this idea of gender spectrum or gender fluidity, but we we see it a lot,” Cavanaugh said.
An estimated 100 to 150 of Fenways Health’s 1,500 transgender patients are genderfluid. Most of the genderfluid patients are transitioning from female towards male. So how do doctors know how much testosterone will produce the effects these patients are looking for?
“To a certain extent we’re making it up, but I’d like to think of it more as finessing the regimens that we have based on the individual person’s desires and needs,” Cavanaugh said. “[It’s difficult], especially with testosterone. Testosterone is very potent and even when we try to prescribe low doses, every person responds in a different way.”
Some doctors are uncomfortable with the idea of using medicine to experiment with changing social norms.
“But from the point of view of the Medical Society, this represents a population that is underserved,” said Dr. Marian Craighill, who chairs the committee on lesbian, gay, bisexual and transgender matters at the Massachusetts Medical Society. “We are definitely looking for more and more places where patients can go to get good and appropriate medical care.”
Doctors have lots of questions about transgender health, says Dr. Lachlan Forrow, director of ethics at Beth Israel Deaconess Medical Center. “But the fundamental driving factor has to be asking those questions as a way of compassionately and professionally helping this person in front of me.”
Some providers are guided by Catholic or other religious teachings that frown on any biological manipulation that changes the body. Father James Bretzke, who teaches moral theology at Boston College, says there’s a vigorous debate underway about gender theory that is testing that teaching.
“There is a line that would say there are only two genders and they are tied physically to the female and male genitalia,” Bretzke said. “Whereas many other theologians would argue that, at least to some extent, gender is a product of social construction.”
If gender is a product of social construction, then using medicine to fix every patient’s discomfort may not be the best long term solution, Cavanaugh says.
“I hope we are headed to a place where we recognize that gender is not one thing or the other, not male or female, and that culturally we can become more comfortable with that idea,” Cavanaugh said. “Hormones and surgery are always going to be options for people, but I really hope that we won’t feel compelled to use them as much as we do now.”
But for now, some genderfluid patients say they can not find peace without medical intervention.
“I had an incredible amount of dysphoria around my chest, it was consuming. I got to the point where in order for me to thrive and to do the work I wanted to be able to do and just live my life, I needed to have surgery,” said Taan Shapiro, a 33-year-old a teacher and parent in Boston who had surgery to create a flatter, more masculine looking chest.
Shapiro, who uses the pronouns they and them, says some strangers assume they is a teenage boy, others that Shapiro is female. Shapiro is not planning any more surgery or hormone therapy.
“Where I am is where I’m at and I feel good about myself,” Shapiro said, “[in a place] somewhere between male and female.”