On June 6–9 leaders from government, private sector, and public health will get together in Cape Town, South Africa for the first ever Mobile Health Summit. Mobile Health (referred to as mHealth) is an emerging field that seeks to use mobile technology to improve access to and quality of health care particularly in regions where the disease burdens are highest. Though many programs are still in the pilot and feasibility stage, mobile health has been shown to have the ability to increase access to information, experts, and technology.
Programs include those that let patients access medical information, advice, and counseling, and let providers access patient records and expert colleagues remotely. One program that will be discussed at the summit is the Mobile Alliance for Maternal Action (MAMA), a joint venture between USAID and the U.S. manufacturer Johnson & Johnson that will be launched in Bangladesh, India, and South Africa. Under this program, pregnant or postpartum women can register to receive SMS or voice messages specific to their stage of pregnancy or their baby’s stage of development. Such messages might suggest local foods that provide good prenatal nutrition or remind them of when it is time to seek vaccinations for their child.
Mobile Health also involves the development of technology and equipment to improve medical care. One of example of this that can improve the reach of maternal health care is an ultrasound machine with mobile technology built in which enables it to send images back to a central location where they can be viewed by trained health care professionals.
The Summit is organized by the mHealth Alliance, which was founded by the United Nations Foundation, Rockefeller Foundation, and Vodafone Foundation to develop and deploy sustainable mobile health models, and the GSMA which represents mobile operators, handset makers, software companies, equipment providers, Internet companies, and media and entertainment organizations. With more than five billion mobile subscribers worldwide, the organizers believe that mobile technology has the ability to enable access to health information and services in places that otherwise would not have it and will use the summit to further the understanding and adoption of mobile technology.
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A number of research studies will also be released at the summit including the results of a survey of mobile technology and health in 112 countries. This comprehensive picture can serve as a baseline to measure progress as technology improves and the number of mHealth programs grows.
Live updates will be available online throughout the summit.
If Donald Trump is looking for someone who, like himself, 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, then Pence is his guy.
This week, GOP presumptive presidential nominee Donald Trump is considering Mike Pence, among other possible contenders, to join his ticket as a vice presidential candidate.
In doing so, Trump would pick the “pro-life” governor of a state with one of the slowest rates of economic growth in the nation, and one of the most egregious records on public health, infant and child survival, and poverty in the country. He also would be choosing one of the GOP governors who has spent more time focused on policies to discriminate against women and girls, LGBTQ communities, and the poor than on addressing economic and health challenges in his state. Meanwhile, despite the evidence, Pence is a governor who seems to be perpetually in denial about the effects of his policies.
Let’s take the economy. From 2014 to 2015, Indiana’s economic growth lagged behind all but seven other states in the nation. During that period, according to the U.S. Department of Commerce, Indiana’s economy grew by just 0.4 percent, one-third the rate of growth in Illinois and slower than the economies of 43 other states. Per capita gross domestic product in the state ranked 37th among all states.
Income inequality has been a growing problem in the state. As the Indy Starreported, a 2014 report by the United States Conference of Mayors titled “Income and Wage Gaps Across the US” stated that “wage inequality grew twice as rapidly in the Indianapolis metro area as in the rest of the nation since the recession,” largely due to the fact “that jobs recovered in the U.S. since 2008 pay $14,000 less on average than the 8.7 million jobs lost since then.” In a letter to the editor of the Indy Star, Derek Thomas, senior policy analyst for the Indiana Institute for Working Families, cited findings from the Work and Poverty in Marion Countyreport, which found that four out of five of the fastest-growing industries in the county pay at or below a self-sufficient wage for a family of three, and weekly wages had actually declined. “Each year that poverty increases, economic mobility—already a real challenge in Indy—becomes more of a statistical oddity for the affected families and future generations.”
In his letter, Thomas also pointed out:
[T]he minimum wage is less than half of what it takes for a single-mother with an infant to be economically self-sufficient; 47 percent of workers do not have access to a paid sick day from work; and 32 percent are at or below 150 percent of the federal poverty guidelines ($29,685 for a family of three).
Despite the data and the struggles faced by real people across the state, Pence has consistently claimed the economy of the state is “booming,” and that the state “is strong and growing stronger,” according to the Northwest Indiana Times. When presented with data from various agencies, his spokespeople have dismissed them as “erroneous.” Not exactly a compelling rebuttal.
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As a “pro-life” governor, Pence presides over a state with one of the worst infant mortality rates in the nation. Data from the Indiana State Department of Health reveals a “significant disparity” between white and Black infant mortality rates, with Black infants 1.8 times more likely to die than their white counterparts. The 2013 Infant Mortality Summit also revealed that “[a]lmost one-third of pregnant women in Indiana don’t receive prenatal care in their first trimester; almost 17% of pregnant women are smokers, compared to the national rate of 9%; and the state ranks 8th in the number of obese citizens.”
Yet even while he bemoaned the situation, Pence presided over budget cuts to programs that support the health and well-being of pregnant women and infants. Under Pence, 65,000 people have been threatened with the loss of food stamp benefits which, meager as they already are, are necessary to sustain the caloric and nutritional intake of families and children.
While he does not appear to be effectively managing the economy, Pence has shown a great proclivity to distract from real issues by focusing on passing laws and policies that discriminate against women and LGBTQ persons.
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.
These facts are no surprise given that, as a U.S. Congressman, Pence “waged war” on Planned Parenthood. In 2000, he stated that Congress should oppose any effort to recognize homosexuals and advocated that funding for HIV prevention should be directed toward conversion therapy programs.
He also appears to share Trump’s hatred of and willingness to scapegoat immigrants and refugees. Pence was the first governor to refuse to allow Syrian refugees to relocate in his state. On November 16th 2015, he directed “all state agencies to suspend the resettlement of additional Syrian refugees in the state of Indiana,” sending a young family that had waited four years in refugee limbo to be resettled in the United States scrambling for another state to call home. That’s a pro-life position for you. To top it all off, Pence is a creationist, and is a climate change denier.
So if Donald Trump is looking for someone who, like himself, 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, then Pence is his guy.
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.”