Like bills now moving through Congress, health care reform in Massachusetts sought to reduce the number of uninsured. But recent research shows that many of those now "insured" still can't access care or afford essential prescriptions.
Health care reform
in the Commonwealth of Massachusetts was passed in April 2006 with the goal of dramatically
expanding access to affordable health insurance for Massachusetts residents.This is the same goal articulated in
the U.S. Senate and House health care reform bills—both of which are designed to
reduce the number of people without insurance in this country.
As the national debate about the content of these bills continues, one question remains:Are you considered uninsured if you have health
insurance but you can’t access care or afford it?
In a report
recently released by Ibis Reproductive Health and the Massachusetts Department
of Public Health Family Planning Program researchers found that health care
reform in Massachusetts has accomplished much of what it set out to.On the whole, the low-income women and family
planning providers interviewed for the study said that access to both
preventive care and general reproductive health care has increased for many
low-income women throughout the Commonwealth.As one health care provider quoted in the report said, “When
people have health care, they’ll use it.”
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report also details a number of challenges that low-income women face in
accessing health care under reform in Massachusetts, challenges that may soon
confront the nation.
Many of the low-income
women interviewed said that it was difficult for them to access health services
due to a long list of forms and procedures required to prove and maintain
eligibility for the subsidized health insurance plans available under reform.Once on the plans, many were
frequently, and unnecessarily, pushed on and off the plans for which they
qualify.Health care formularies
under the subsidized plans were described as hopeless to decode and the list of
providers accepting their health insurance impossible to decipher, and rather
short.Some women also struggled
to afford their monthly medications such as contraception and prescriptions
needed for chronic conditions.
In addition, the
study team also found that health care for many women has not improved or has
gotten worse since reform.In the
Commonwealth, immigrants, young women, those with unstable employment, and
those experiencing common life changes face a multitude of challenges in
accessing care under reform.
planning provider quoted in the report explained that many immigrants were no
longer seeking care at her facility: “When
it became mandated for individuals to have health insurance, people were afraid
to come to medical facilities because they were under the assumption that if
they didn’t have health insurance they were going to be reported to the
though they may be covered under a parent’s insurance, may be unable to access
reproductive health care confidentially and may therefore choose to forego
variable employment often move rapidly in and out of eligibility for subsidized
plans depending on changes in their income.Each of these changes is accompanied by a slew of paperwork
to prove a woman’s low-income status. Also, women experiencing common life changes such as
pregnancy, starting or finishing college, or moving reported it was difficult
to keep up with the paperwork mailed to them that was required to document
eligibility for subsidized care.
One of the
lessons learned from the Massachusetts experiment for those working on national
reform is that the focus cannot only be on what services are included under
reform and for whom they are available, but on how reform is rolled out and
whether those the new system is intended to serve are able to access and use
it.National health care reform will
likely have much in common with the Massachusetts model.Based on what we have learned here, it
will be imperative for national policymakers to simplify enrollment and
re-certification procedures for those eligible to receive subsidized health
insurance .It will also be critical
to make sure that populations excluded from health care reform, as well as
those with insurance who cannot afford copays and prescriptions, even with
federal subsidies, are able to access health services.
multiple strategies should be used to help ensure that the initial uptake and
administration of health care plans under reform run smoothly, and that clients
and health care providers can access the information they need.This could include making sure that
health care providers get training and up-to-date information about new health
plans offered through an exchange or public option.In addition, we must make sure that consumers are educated about
what services are covered under their insurance and know how to maintain and
prove eligibility for subsidized insurance.
Without a detailed
and realistic plan for how national
health care reform will be implemented, many low-income women and men will fall
through the cracks of reform and be left with an insurance plan that they can neither
access nor afford.
And in other news, Donald Trump suggested that he can relate to Black people who are discriminated against because the system has been rigged against him, too. But he stopped short of saying he understood the experiences of Black Americans.
Donald Trump announced this week that he had selected Indiana Gov. Mike Pence (R) to join him as his vice presidential candidate on the Republican ticket, and earlier in the week, the presumptive presidential nominee suggested to Fox News that he could relate to Black Americans because the “system is rigged” against him too.
Pence Selected to Join the GOP Ticket
After weeks of speculation over who the presumptive nominee would chose as his vice presidential candidate, Trump announced Friday that he had chosen Pence.
“I am pleased to announce that I have chosen Governor Mike Pence as my Vice Presidential running mate,” Trump tweeted Friday morning, adding that he will make the official announcement on Saturday during a news conference.
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The presumptive Republican nominee was originally slated to host the news conference Friday, but postponed in response to Thursday’s terrorist attack in Nice, France. As late as Thursday evening, Trump told Fox News that he had not made a final decision on who would join his ticket—even as news reports came in that he had already selected Pence for the position.
As Rewire Editor in Chief Jodi Jacobson explained in a Thursday commentary, Pence “has problems with the truth, isn’t inclined to rely on facts, has little to no concern for the health and welfare of the poorest, doesn’t understand health care, and bases his decisions on discriminatory beliefs.” Jacobson further explained:
He has, for example, eagerly signed laws aimed at criminalizing abortion, forcing women to undergo unnecessary ultrasounds, banning coverage for abortion care in private insurance plans, and forcing doctors performing abortions to seek admitting privileges at hospitals (a requirement the Supreme Court recently struck down as medically unnecessary in the Whole Woman’s Health v. Hellerstedt case). He signed a ‘religious freedom’ law that would have legalized discrimination against LGBTQ persons and only ‘amended’ it after a national outcry. Because Pence has guided public health policy based on his ‘conservative values,’ rather than on evidence and best practices in public health, he presided over one of the fastest growing outbreaks of HIV infection in rural areas in the United States.
Trump Suggests He Can Relate to Black Americans Because “Even Against Me the System Is Rigged”
Trump suggested to Fox News’ Bill O’Reilly that he could relate to the discrimination Black Americans face since “the system [was] rigged” against him when he began his run for president.
When asked during a Tuesday appearance on The O’Reilly Factor what he would say to those “who believe that the system is biased against them” because they are Black, Trump leaped to highlight what he deemed to be discrimination he had faced. “I have been saying even against me the system is rigged. When I ran … for president, I mean, I could see what was going on with the system, and the system is rigged,” Trump responded.
“What I’m saying [is] they are not necessarily wrong,” Trump went on. “I mean, there are certain people where unfortunately that comes into play,” he said, concluding that he could “relate it, really, very much to myself.”
When O’Reilly asked Trump to specify whether he truly understood the “experience” of Black Americans, Trump said that he couldn’t, necessarily.
“I would like to say yes, but you really can’t unless you are African American,” said Trump. “I would like to say yes, however.”
Trump has consistently struggled to connect with Black voters during his 2016 presidential run. Despite claiming to have “a great relationship with the blacks,” the presumptive Republican nominee has come under intense scrutiny for using inflammatory rhetoric and initially failing to condemn white supremacists who offered him their support.
According to a recent NBC News/Wall Street Journal/Marist poll released Tuesday, Trump is polling at 0 percent among Black voters in the key swing states of Ohio and Pennsylvania.
What Else We’re Reading
Newt Gingrich, who was one of Trump’s finalists for the vice presidential spot, reacted to the terrorist attack in Nice, France, by calling for all those in the United States with a “Muslim background” to face a test to determine if they “believe in sharia” and should be deported.
Bloomberg Politics’ Greg Stohr reports that election-related cases—including those involving voter-identification requirements and Ohio’s early-voting period—are moving toward the Supreme Court, where they are “risking deadlocks.”
According to a Reuters review of GOP-backed changes to North Carolina’s voting rules, “as many as 29,000 votes might not be counted in this year’s Nov. 8 presidential election if a federal appeals court upholds” a 2013 law that bans voters from casting ballots outside of their assigned precincts.
The Wall Street Journalreportedon the election goals and strategies of anti-choice organization Susan B. Anthony List, explaining that the organization plans to work to ensure that policy goals such as a 20-week abortion ban and defunding Planned Parenthood “are the key issues that it will use to rally support for its congressional and White House candidates this fall, following recent setbacks in the courts.”
Multiple “dark money” nonprofits once connected to the Koch brothers’ network were fined by the Federal Election Commission (FEC) this week after hiding funding sources for 2010 political ads. They will now be required to “amend past FEC filings to disclose who provided their funding,” according to the Center for Responsive Politics.
Politico’s Matthew Nussbaum and Ben Weyl explain how Trump’s budget would end up “making the deficit great again.”
“The 2016 Democratic platform has the strongest language on voting rights in the party’s history,” according to the Nation’s Ari Berman.
Advocates say that U.S. Rep. Tim Murphy's "Helping Families in Mental Health Crisis Act," purported to help address gaps in care, is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.
The need for reform of the mental health-care system is well documented; those of us who have spent time trying to access often costly, out-of-reach treatment will attest to how time-consuming and expensive care can be—if you can get the necessary time off work to pursue that care. Advocates say, however, that U.S. Rep. Tim Murphy’s (R-PA) “Helping Families in Mental Health Crisis Act” (HR 2646), purported to help address gaps in care, is not the answer. Instead, they say, it is regressive and strips rights away from those diagnosed with mental illness. This leaves those in the LGBTQ community—who already often have an adversarial relationship with the mental health sector—at particular risk.
“We believe that this legislation will result in outdated, biased, and inappropriate treatment of people with a mental health diagnosis,” wrote the political action committee Leadership Conference on Civil and Human Rights in a March letter to House Committee on Energy and Commerce Chairman Rep. Fred Upton (R-MI) and ranking member Rep. Frank Pallone (D-NJ) on behalf of more than 100 social justice organizations. “The current formulation of H.R. 2646 will function to eliminate basic civil and human rights protections for those with mental illness.”
Murphy and Rep. Eddie Bernice Johnson (D-TX) reintroduced HR 2646 earlier this month, continuing to call it “groundbreaking” legislation that “breaks down federal barriers to care, clarifies privacy standards for families and caregivers; reforms outdated programs; expands parity accountability; and invests in services for the most difficult to treat cases while driving evidence-based care.”
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Some of the stated goals of HR 2646 are important: Yes, more inpatient care beds are needed; yes, smoother transitions from inpatient to outpatient care would help many; yes, prisons house too many people with mental illness. However, many of its objectives, such as “alternatives to institutionalization” potentially allow outpatient care to be mandated by judges with no medical training and pushed for by “concerned” family members. Even the “focus on suicide prevention” can lead to forced hospitalization and disempowerment of the person the system or family member is supposedly trying to help.
All in all, advocates say, HR 2646—which passed out of committee earlier this month—marks a danger to the autonomy of those with mental illness.
Victoria M. Rodríguez-Roldán, JD, director of the Trans/GNC Justice Project at the National LGBTQ Task Force, explained that the bill would usurp the Health Insurance Portability and Accountability Act (HIPAA), “making it easier for a mental health provider to give information about diagnosis and treatment … to any ‘caregiver’-family members, partners or spouses, children that may be caring for the person, and so forth.”
For the communities she serves, this is more than just a privacy violation: It could put clients at risk if family members use their diagnosis or treatment against them.
“When we consider the stigma around mental illness from an LGBT perspective, an intersectional perspective, 57 percent of trans people have experienced significant family rejection [and] 19 percent have experienced domestic violence as a result of their being trans,” said Rodríguez-Roldán, citing the National Transgender Discrimination Survey. “We can see here how the idea of ‘Let’s give access to the poor loved ones who want to help!’ is not that great an idea.”
“It’s really about taking away voice and choice and agency from people, which is a trend that’s very disturbing to me,” said Leah Harris, an organizer with the Campaign For Real Change in Mental Health Policy, also known as Real MH Change. “Mostly [H.R. 2646] is driven by families of these people, not the people themselves. It’s pitting families against people who are living this. There are a fair number of these family members that are well-meaning, but they’re pushing this very authoritarian [policy].”
Rodríguez-Roldán also pointed out that if a patient’s gender identity or sexual orientation is a contributing factor to their depression or suicide risk—because of discrimination, direct targeting, or fear of bigoted family, friends, or coworkers—then that identity or orientation would be pertinent to their diagnosis and possible need for treatment. Though Murphy’s office claims that psychotherapy notes are excluded from the increased access caregivers would be given under HR 2646, Rodríguez-Roldán isn’t buying it; she fears individuals could be inadvertently outed to their caregivers.
Rodríguez-Roldán echoed concern that while disability advocacy organizations largely oppose the bill, groups that represent either medical institutions or families of those with mental illnesses, or medical institutions—such as NAMI, Mental Health America, and the APA—seem to be driving this legislation.
“In disability rights, if the doc starts about talking about the plight and families of the people of the disabilities, it’s not going to go over well,” she said. “That’s basically what [HR 2646] does.”
Rodríguez-Roldán’s concerns extend beyond the potential harm of allowing families and caregivers easier access to individuals’ sensitive medical information; she also points out that the act itself is rooted in stigma. Rep. Murphy created the Helping Families in Mental Health Crisis Act in response to the Sandy Hook school shooting in 2012. Despite being a clinical psychologist for 30 years before joining Congress and being co-chair of the Mental Health Caucus, he continues to perpetuate the well-debunked myth that people with mental illness are violent. In fact, according to the Department of Health and Human Services, “only 3%-5% of violent acts can be attributed to individuals living with a serious mental illness” and “people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.”
The act “is trying to prevent gun violence by ignoring gun control and going after the the rights of mentally ill people,” Rodríguez-Roldán noted.
In addition, advocates note, HR 2646 would make it easier to access assisted outpatient treatment, but would also give courts around the country the authority to mandate specific medications and treatments. In states where the courts already have that authority, Rodríguez-Roldán says, people of color are disproportionately mandated into treatment. When she has tried to point out these statistics to Murphy and his staff, she says, she has been shut down, being told that the disparity is due to a disproportionate number of people of color living in poverty.
Harris also expressed frustration at the hostility she and others have received attempting to take the lived experiences of those who would be affected by the bill to Murphy and his staff.
“I’ve talked to thousands of families … he’s actively opposed to talking to us,” she said. “Everyone has tried to engage with [Murphy and his staff]. I had one of the staffers in the room say, ‘You must have been misdiagnosed.’ I couldn’t have been that way,” meaning mentally ill. “It’s an ongoing struggle to maintain our mental and physical health, but they think we can’t get well.”
Multiple attempts to reach Murphy’s office by Rewire were unsuccessful.
LGBTQ people—transgender, nonbinary, and genderqueer people especially—are particularly susceptible to mistreatment in an institutional setting, where even the thoughts and experiences of patients with significant privilege are typically viewed with skepticism and disbelief. They’re also more likely to experience circumstances that already come with required hospitalization. This, as Rodríguez-Roldán explained, makes it even more vital that individuals not be made more susceptible to unnecessary treatment programs at the hands of judges or relatives with limited or no medical backgrounds.
“Forty-one percent of all trans people have attempted suicide at some point in their lives,” said Rodríguez-Roldán. “Once you have attempted suicide—assuming you’re caught—standard procedure is you’ll end up in the hospital for five days [or] a week [on] average.”
In turn, that leaves people open to potential abuse. Rodríguez-Roldán said there isn’t much data yet on exactly how mistreated transgender people are specific to psychiatry, but considering the discrimination and mistreatment in health care in general, it’s safe to assume mental health care would be additionally hostile. A full 50 percent of transgender people report having to teach their physicians about transgender care and 19 percent were refused care—a statistic that spikes even higher for transgender people of color.
“What happens to the people who are already being mistreated, who are already being misgendered, harassed, retraumatized? After you’ve had a suicide attempt, let’s treat you like garbage even more than we treat most people,” said Rodríguez-Roldán, pointing out that with HR 2646, “there would be even less legal recourse” for those who wanted to shape their own treatment. “Those who face abusive families, who don’t have support and so on—more likely when you’re queer—are going to face a heightened risk of losing their privacy.”
Or, for example, individuals may face the conflation of transgender or gender-nonconforming status with mental illness. Rodríguez-Roldán has experienced the conflation herself.
“I had one psychiatrist in Arlington insist, ‘You’re not bipolar; it’s just that you have unresolved issues from your transition,'” she said.
While her abusive household and other life factors certainly added to her depression—the first symptom people with Bipolar II typically suffer from—Rodríguez-Roldán knew she was transgender at age 15 and began the process of transitioning at age 17. Bipolar disorder, meanwhile, is most often diagnosed in a person’s early 20s, making the conflation rather obvious. She acknowledges the privilege of having good insurance and not being low-income, which meant she could choose a different doctor.
“It was also in an outpatient setting, so I was able to nod along, pay the copay, get out of there and never come back,” she said. “It was not inside a hospital where they can use that as an excuse to keep me.”
The fear of having freedom and other rights stripped away came up repeatedly in a Twitter chat last month led by the Task Force to spread the word about HR 2646. More than 350 people participated, sharing their experiences and asking people to oppose Murphy’s bill.
Alexander’s bill has more real reform embedded in its language, shifting the focus from empowering families and medical personnel to funding prevention and community-based support services and programs. The U.S. Secretary of Health and Human Services would be tasked with evaluating existing programs for their effectiveness in handling co-current disorders (e.g., substance abuse and mental illness); reducing homelessness and incarceration of people with substance abuse and/or mental disorders; and providing recommendations on improving current community-based care.
Harris, with Real MH Change, considers Alexander’s bill an imperfect improvement over the Murphy legislation.
“Both of [the bills] have far too much emphasis on rolling back the clock, promoting institutionalization, and not enough of a preventive approach or a trauma-informed approach,” Harris said. “What they share in common is this trope of ‘comprehensive mental health reform.’ Of course the system is completely messed up. Comprehensive reform is needed, but for those of us who have lived through it, it’s not just ‘any change is good.'”
Harris and Rodríguez-Roldán both acknowledged that many of the HR 2646 co-sponsors and supporters in Congress have good intentions; those legislators are trusting Murphy’s professional background and are eager to make some kind of change. In doing so, the voices of those who are affected by the laws—those asking for more funding toward community-based and patient-centric care—are being sidelined.
“What is driving the change is going to influence what the change looks like. Right now, change is driven by fear and paternalism,” said Harris. “It’s not change at any cost.”