Living in Fear — Children of Undocumented Suffer Health Problems

Check out this article from New American Media on how our immigration policies negatively impact the health and well-being of children of undocumented immigrants. You can read the article here.

The Battle Isn’t Over: What’s Next for the SafeRx Campaign

Knowing how to take prescription medications safely is incredibly important—especially for people who are limited English proficient (LEP) or have other difficulties understanding prescription medication labels.  New York recently passed landmark SafeRx legislation that will greatly increase many New Yorkers’ access to prescription medication. Under SafeRx, prescription pads will have to reflect a patient’s language preference and medication labels will become more patient-friendly. Pharmacies will be required to provide translation and interpretation services to LEP consumers. But while the passage of SafeRx represents a huge victory, we still have more work to do.

The law will go into full effect in late March of 2013. The New York State Board of Pharmacy (SBOP) is currently in the process of drafting recommendations for the implementation of the legislation. Unfortunately, the SBOP has failed to include stakeholders—advocates and LEP consumers—in the process. The SBOP has yet to schedule even one formal public hearing at which advocates and consumers can provide input on how to best implement the new law. Only one informal meeting has been mentioned, but not scheduled—and it’s in Buffalo. Not exactly an easy trip to make for many people around the state.

In response to the limited opportunities for stakeholder engagement, members of the SafeRx Coalition have published a report which discusses several key recommendations for the implementation of SafeRx legislation. (You can also read the accompanying cover letter to the SBOP here.) Through our recommendations, we hope to balance the interests of consumers and the pharmacy industry alike, while still meeting the health needs of New Yorkers.

Here’s a quick rundown of our recommendations:

Determine Pharmacy Primary Languages Fairly
Rather than selecting languages based on whether or not 1% of the general population speaks a given language, SBOP should require translation services in the top seven languages spoken throughout the state. This approach ensures that a uniform standard is applied statewide.

Standardize Prescription Labels
Prescription labels should be patient-centered. Labels should have clear directions, written in simple and large fonts.

Notify Patients of Their Rights
A Patient Bill of Rights should be translated into the selected languages and shared with consumers on pharmacy websites, in stores, and through other outreach.

Include Mail Order Pharmacies
Those count, too! Resources should be dedicated to assessing the language access needs of consumers who use mail order pharmacies and the services that these pharmacies currently provide. In fact, many mail order pharmacies actually have already begun providing language services.

Eliminate the Waiver Option
As the legislation stands now, pharmacies have the ability to opt-out of the requirement to provide language assistance services. But the whole point of the SafeRx campaign is that pharmacies have a federal obligation to do so. Pharmacies shouldn’t be given the ability to dodge their legal responsibilities.

Promote Liability & Accountability
SBOP should implement a plan to monitor and assess pharmacies’ compliance with the law.

Modify Prescription Pads
The NYS prescription pad should be revised to reflect if a patient is LEP and, if so, what the primary language spoken is.

If implemented correctly, SafeRx could improve business for pharmacies by improving customer service and consumer loyalty. For the healthcare system as a whole, SafeRx could dramatically reduce the 700,000 emergency room visits and 100,000 hospitalizations that occur every year when patients misunderstand how to take prescription meds [i]—saving the healthcare system over 3 billion dollars per year overall. [ii]  

With millions of New Yorkers who stand to benefit and millions of dollars to be saved, there’s no reason for the SBOP not to get on board with our recommendations.  And with the clock ticking toward when the legislation will take effect, the time to do so is now.

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[i] Daniel Budnitz, et al., National Surveillance of Emergency Department Visits for Outpatient Adverse Drug Events, Journal of the American Medical Association (JAMA), 2006; 296 (15):1858-1866.

[ii] William Shrank, et al., Educating Patients About Their Medications: The Potential and Limitations of Written Drug Information, Health Affairs, 2007; 26 (3):731-40.

Bridging Theory and Practice for Language Rights

Check out a newly published article in the Journal of Health Care for the Poor and Underserved, co-authored by Health Justice Director, Nisha Agarwal, on the importance of language access in the pharmacy setting. This is an area where the evidence about the importance of providing language concordant services for patients who are limited English proficient (LEP) keeps growing and, despite all the discussion in medical circles about “evidence-based” policymaking, we continue to face resistance at state agencies charged with protecting and advancing public health. Instead of collaborative discussions about how to improve access to prescription medications for immigrant communities and reducing health disparities, we hear complaints about how language assistance services might put huge chain pharmacies out of business – immigrant scape-goating at its worst.

We’re taking our fight to the pages of research journals, as well as to the corridors of power in Albany and to the streets until we win. Join us in this effort! Send us an email and let us know that you’d like to join the coalition to ensure Safe Access for Everyone to prescription medications (SafeRx): healthjustice[at]nylpi.org.

Ready to Leave with No Place to Go

by Shena Elrington, Staff Attorney

Undocumented immigrants lack access to viable long-term care options. This is hardly surprising, given the surge in anti-immigrant sentiment, the serious budget crises facing federal, state and local governments and the piecemeal way in which we approach health care delivery. Although not surprising, the lack of long-term care options has very real consequences for both the lives of these immigrants and the overall well-being of the healthcare system.

A flurry of recent newspaper articles has brought the plight facing undocumented immigrants in need of long-term care into sharp focus. In the typical scenario, an undocumented immigrant suffers a catastrophic injury or illness, such as stroke, and is rushed to the emergency room, where she receives care, as required by federal law. The initial injury or illness may have been so severe that the patient becomes incapacitated, unable to feed or care for herself. The hospital then looks for appropriate long-term care facilities, such as nursing homes, to care for the patient. Finding such a facility, however, is nearly impossible because the patient cannot pay out of pocket and is ineligible for Medicaid because of her immigration status. The hospital, unable to find an appropriate facility to discharge the patient, chooses whether to continue to treat the patient, at a cost of several thousand dollars per day, for an indefinite period of time.

Some undocumented immigrants who find themselves in this precarious situation fare better than others. They all, however, live in a constant state of uncertainty, unsure of when the hospital will stop caring for them. And when the hospital terminates treatment, as it inevitably will, undocumented immigrants are faced with a truly terrifying range of “choices”, leading them closer and closer to death.

In September, a hospital in Atlanta refused to provide dialysis to nearly two dozen undocumented immigrants who had been receiving treatment for years. As deadly toxins built up in their systems, some immigrants sought care at various emergency departments, but were refused treatment because their conditions had not deteriorated significantly enough to trigger the hospital’s duty to provide emergency care under federal law. These immigrants were forced to wait until they were literally at death’s door to receive treatment. After much wrangling and public outrage, the hospital agreed to continue to provide dialysis for three more years.

But, what happens when that three-year period comes to an end?

Some hospitals, acting outside the federal immigration process, actually contract with private transport agencies to have these patients, with or without their consent, flown back to their home countries, without ensuring that there are any healthcare facilities in those countries able to support their needs. In essence, these immigrants are sent home to die. Based on our work with community partners and advocates, we know these “medical deportations” are not isolated events.

The perils undocumented immigrants in need of long-term care face are the direct result of failures in our immigration and health policies. Our current system mandates that hospitals provide care to undocumented immigrants when they are so ill that they require emergency treatment, at the most expensive point of access in the health care system – the emergency room – yet provides no real avenue for them to receive cheaper preventative care or be moved from more expensive acute care facilities to more appropriate, and less expensive, long term care facilities like nursing homes when necessary.

While health reform expanded the number of Americans eligible for Medicaid, it fell short of including undocumented immigrants – prohibiting them from even purchasing insurance within the exchanges. While the majority of undocumented immigrants are young and healthy, it is inevitable that tragedy will strike at one point or another and some immigrants will need long-term care. Our current policies make no provisions for this eventuality. Worst yet, there is virtually no oversight over hospitals that repatriate patients to their home countries, discharging them to family members or facilities abroad that often lack the means to properly care for them. And, there is little to no discussion of the legal and ethical breaches healthcare providers and hospitals may be committing by failing to discharge undocumented immigrants to appropriate healthcare facilities.

We need to discuss these issues, even if talking about them is difficult in a political climate where anti-immigrant sentiment runs rampant and budget cuts seem to always land on the backs of the poor, because some of our most fundamental values are at stake. Just a few weeks ago, we glimpsed the erosion of these values during a Republican presidential nominee debate, when the audience proudly affirmed their willingness to let a hypothetical 30 year old man who needed intensive care die because he opted out of health insurance. There is little doubt that this crowd would feel the same way about an undocumented immigrant in need of care, who had no access to insurance to begin with. Is this really the kind of world we want to live in?

The Hypocrite’s Oath: Latino Immigrants and Health Access in the Hamptons

This post, by Health Justice Director Nisha Agarwal, first appeared on the Race-Talk.org blog and is also available on Huffington Post.

Like many New Yorkers did this summer, I boarded a Hampton Jitney from the east side of Manhattan in late August and made my way to the finger tips of Long Island.  Instead of landing on the beach, however, I found myself in the crowded office of a small community-based organization bursting with children and parents, canned goods and clothing swaps, and the bilingual chatter of Latino immigrants seeking help for any number of different problems.  I was with a colleague, and we were there to meet a client.  Here is her story:

In late July, Laura was rushed to the emergency room of a local Hamptons hospital due to severe stomach pains.  She is only a teenager, undocumented, uninsured, and uncomfortable speaking anything but Spanish to discuss complicated health matters.  After some ten hours spent unattended on a hospital gurney, Laura was finally seen by a surgeon the following morning.  No one explained to her, in a language she could understand, why her stomach was on fire or why she was about to receive an operation.  Turns out it was appendicitis.

Laura was admitted to the hospital for 24 hours after her surgery and then summarily discharged, even though she was still in pain.  No one talked to her about a discharge plan or explained self-care strategies to use in the wake of her operation.  All she knew, through the help of family members advocating on her behalf, was that there was still a drainage tube in her body, and she would have to go to her surgeon’s private office to have it removed.

At this private office, Laura was told that she would have to pay $1500 upfront to extricate the tube, and if she didn’t pay it they couldn’t do the procedure for her.  The emergency room of the hospital where she was originally treated, and to which she returned after this extortionate demand, also refused to remove the tube, insisting again that she go to the surgeon’s private office.  Her fear mounting, Laura turned to her primary care physician and the local community group for help.  Together they advocated with the hospital and the surgeon to have the fee for the tube removal reduced to $300.

Sitting in the surgeon’s waiting for the second time, Laura and her family were subjected to a verbal assault by the physician who initially treated her.  She was the reason he and his assistant had to get up in the middle of the night to come to the ER and operate, he shouted.  She was ungrateful for the fact that he wasn’t getting paid for the services he was providing to her.  Oh, and he also wanted to know—in front of all of the other patients in the waiting room—was she in the country legally or illegally? Only after his anger was vented did the surgeon remove the drainage tube from Laura’s body, but as a parting gift, he also reneged on their payment arrangement and billed her $5000.

As a civil rights-oriented health care lawyer in New York City, I thought I knew what racial and ethnic disparities in health care looked like, and how they manifested themselves.  But Laura’s case surprised even me.  Here we had potential violations of federal and state discharge planning laws, language access regulations, patient dumping statutes and financial assistance laws, not to mention flagrant disregard for the medical profession’s codes of conduct and a whiff of fraud and consumer protection violations.

What is more, hers is potentially not the only story of its kind.  In our interview, Laura’s sister mentioned another family member who had been turned away from the emergency room of the same Hamptons-area hospital.  The director of the community-based group where we were conducting the interview also knew of a similar case.  To her, the mistreatment was targeted toward a specific patient population.  As an Irish-Catholic nun, she noted, she had little problem accessing high-quality, respectful care from the same surgeon who treated Laura.  However, the same was not true for the low-income Latino/a residents of the community whom she served.

Since meeting with Laura, I have wondered how cases like her come into being.  What are the factors that allow doctors—people who have pledged to do no harm—to exhibit openly hate and bias, to take actions that actually threaten the lives and well-being of some category of their patients?  What are the dynamics that make it acceptable for immigrant patients seeking relief from pain and illness to be turned away from their local houses of healing?  How does this happen in a place known to be the summer playground of New York’s financial and cultural elite?  Do the Haves not have enough?

As has been mentioned previously on this blog, this has been a long, hot summer of hate and injustice against Latinos and immigrants, and I can’t help but think that the vitriol spewed into our airwaves is creating a space—a social sanction—for overt acts of harm.  After all, Long Island is the place that anti-immigrant provocateur Steve Levy calls home, and whose blistering comments against the undocumented are only the most public example of the kind of anger that led to Marcelo Lucero’s brutal murder two years ago this fall.  Levy and others like him have also complained that Mexican “anchor babies” are the reasons hospitals on Long Island are in financial distress.  It should come as little surprise to us, then, that some physicians at these very hospitals have adopted a hostile attitude toward those patients that they see as a threat.

As a health care advocate, I have to be attuned to these broader dynamics around race and immigration, for they are directly impacting the clients I serve.  And, as racial justice activists, we all have to be vigilant of the many manifestations of hate – not only in the extreme examples of violent crimes and assaults, but also the quiet, painful attacks that take place in our schools, workplaces and hospitals.

(Not) Born in the USA

This post is by Macharia Edmonds, a summer intern with the Health Justice Program and a law student at Northwestern University School of Law in Chicago, IL.

Too often in this country, the treatment of those not born in America differs from those born within our borders.  Some New York hospitals have done the unthinkable and are discharging some non-citizen patients to their death.  These hospitals are practicing what is called medical deportation.  This occurs when a hospital discharges a severely injured, sometimes disabled, non-citizen patient who is in need of long term care to a medical facility in their home country.  Unfortunately these facilities are usually not equipped to adequately treat the patient’s medical needs and the patient often suffers considerable pain and sometimes death from this lack of treatment.

Under New York state law, a patient is required to sign off on a discharge plan which details any health care arrangements needed after the discharge.  These patients are sometimes incapacitated or can have a limited English proficiency which makes understanding the choices they are dealt with difficult if not impossible.  In situations where the patient does not speak English the hospital can and should provide an interpreter.  In situations where the patient may be incapacitated, things become more complex.  If the patient is not able to consent to a discharge then the hospital should look to either an appointed surrogate or a family member.  If there is no one from these groups available to decide, there is often confusion as to who has the right to make this decision.

The New York State Legislature has attempted to address this issue by introducing S7429 and A8647C, a bill that creates a three person panel which would be in charge of making these decisions in the absence of other family or appointed representatives.  This panel would presumably be able to protect patients from being denied adequate medical treatment.  This bill is well intentioned but has a number of issues.  Some of these issues include who is allowed to serve on this panel, the lack of information given to the patient and family during the decision making process, and the lack of restrictions and regulations on discharges to foreign medical facilities.  NYLPI has offered and will continue to offer to the Senate and Assembly suggestions for this bill so that it ensures these patients who are incapacitated and not able to advocate for themselves receive the proper medical care.  No matter what country you are a citizen of, simply being a human being should require a certain level of care.

Leaving Undocumented Immigrants Behind

This post is by Shena Elrington, Staff Attorney and Simpson Thacher & Bartlett Public Interest Fellow in the Health Justice Program at NYLPI.

On March 23, 2010, President Obama signed the Patient Protection and Affordable Care Act into law.  The legislation represents the most sweeping reform of the American health care system since the New Deal.  Although the legislation calls for nearly universal health coverage – reducing the number of the uninsured by 32 million by 2019,  it fails to extend such coverage to undocumented immigrants, creating a large coverage gap that will inevitably strain the burgeoning health care system.

The new legislation prohibits undocumented immigrants from purchasing private health insurance in newly formed state exchanges at full costs and receiving premium tax credits or cost-sharing reductions to help purchase insurance.  Notwithstanding the new legislation, undocumented immigrants may still receive emergency care under the Emergency Medical Treatment and Active Labor Act (EMTALA) and Emergency Medicaid.  Neither EMTALA nor Emergency Medicaid, however, provides undocumented immigrants with adequate care.  EMTALA, for instance, requires only that hospitals screen individuals for emergency medical conditions and stabilize (or appropriately transfer) individuals with such conditions.  Beyond screening and stabilizing individuals, EMTALA imposes no additional obligations on hospitals to provide care.  Emergency Medicaid is only available to individuals – regardless of immigration status – who are so acutely ill that the failure to receive medical attention would place their health in serious jeopardy.  Health care providers are often unfamiliar with Emergency Medicaid’s eligibility requirements and deny coverage to undocumented immigrants based on their immigration status.  Both EMTALA and Emergency Medicaid focus on providing care only when individuals are at their sickest and when the cost of treatment is at its highest.  From both a health and financial standpoint, it makes little sense for undocumented immigrants to initially engage the health care system at this point.

There are some 7 million undocumented immigrants in the United States, with an estimated 700,000 living in New York State. Sooner or later these individuals will need health care and will likely receive this care at the emergency stage.  The Affordable Care Act offers some hope for folding this population into the health care system in the form of $11 billion support for the creation of community health centers in underserved communities.  Absent federal immigration reform – an issue as divisive as health reform itself, individual states will need to ensure that undocumented immigrants are not left entirely out of the fold.  Failing to do so will only end up being more costly in the future.

Holding the United States Accountable for Medical Repatriation

On April 19, NYLPI’s Health Justice program joined the Seton Hall University School of Law in submitting a report to the United Nations Human Rights Council on the subject of involuntary medical repatriations of undocumented immigrants from hospitals.   As we have written previously on this blog, NYLPI has be co-convening a statewide working group on the problem of hospitals in New York transferring undocumented immigrant patients who need long-term care to international health care facilities, where the quality of care provided may not be adequate.  The Seton Hall University School of Law has been similarly concerned about the practice of medical repatriation in New Jersey.

Together, NYLPI and Seton Hall have submitted this human rights report as part of the UN’s Universal Periodic Review of the United States, in the hope of bringing the global community’s attention to the problem of international patient dumping and, through this external scrutiny, to bring domestic decision-makers to the table to discuss concrete solutions.  We will keep you posted!

Combine and Conquer: The Day Immigration Met Health Reform in Our Nation’s Capitol

By, Nisha Agarwal, Director of the NYLPI Health Justice Program.

Right now, five hundred thousand immigrants and their allies are rallying in Washington, DC, having traveled from across the country in caravans of buses to demand humane and just immigration reform.  Also right now, the votes are being tallied and negotiated on the most comprehensive health reform package in two decades.  For those of us who aren’t in DC ourselves, Twitter tracks the movement on the ground for the immigration march:

From @thenyic: ‘Senator Schumer on conference call with 220 buses (11000 people!) heading from NY to DC for the March for… http://fb.me/vlRfj4w5

From @nakasec: We are here!!!!! Can you hear the sounds of drumming??? Yes we can! Hal soo it dah!! Si se puede!! #immigration #m4a #dreamact

Meanwhile, email lists and blogs are active, urging last minute phone calls and petition signatures to get Democrats to vote with their hearts on health care reform, and not from their fear.

Every day I work at this meeting point between immigrant rights and health equity, but it is not every day that I can see these issues reverberate on a national scale.  Today, however, they echo and re-echo, and I listen in awe and gratitude to my fellow activists and allies.  This is a progressive moment, and it is because we have made it one.  In all the bickering about the details of the legislative packages and the concern about the eventual outcome of HCR and CIR—important arguments and worries to have—we shouldn’t forget what has already been accomplished: Both the push for health care reform, which is nearing its end, and the fight for immigration reform, which is just beginning, are strong, durable movements that progressives have built, with massive ground operations and multiple, coordinated perspectives tightly networked through cyber-space.  We have shown that power can be built from the ground up, even in the wake of decades of reactionary national government and the collapse of the global economy, and in the face of a deep blue hate.  I am optimistic that we will win health care and immigration reform, and I am proud of the structures we have created to do so.  We here at NYLPI’s Health Justice Program are in full solidarity with all of our friends in DC right now.  Si se puede.  Hal soo it dah.  Yes we can.

Balancing the Scales of Health Justice for Uninsured Immigrants

This post features Liane Aronchick, a volunteer attorney at New York Lawyers for the Public Interest.  She has coordinated the Working Group on Medical Repatriation at NYLPI since October 2009.

Less than a month after the devastating earthquake in Haiti, the U.S. military halted airlifts to treat seriously injured Haitians from Port-au-Prince to Florida hospitals.  The decision to halt came quickly after Florida Governor Charlie Christ requested that the U.S. Department of Health and Human Services reimburse the hospitals that were treating the injured Haitians, causing speculation that hospitals did not want to treat Haitian patients without some kind of compensation.

The hospitals vehemently denied refusing patients simply because they could not afford care, but the controversy nevertheless highlights the adversarial stance that hospitals take when required to provide health care to non-citizens. When a seriously injured and uninsured patient arrives for treatment at a hospital, the hospital’s priorities shift, placing financial compensation above treatment and care when that patient is a non-citizen. The hospital will stabilize the patient, but the caliber of long-term care and follow-up deteriorates based on the patient’s nationality.  Indeed, it has become a regular practice in hospitals to repatriate uninsured non-citizens in need of long-term and intensive care to hospitals in their home countries—where resources are often scarce and treatments are limited. This practice is known as “medical repatriation” or “medical deportation.” What’s more, transferring hospitals fail to sufficiently investigate whether the transferee hospitals are even capable of providing the care the patient needs. In effect, the American hospital dumps the patient on an ill-equipped and poorly stocked hospital, potentially condemning the patient to death, but somehow it is permissible because the patient is a non-citizen.

Advocates and service providers in New York are banding together to strike a balance to the inequitable treatment that uninsured immigrants receive in American hospitals. New York Lawyers for the Public Interest, the New York Immigration Coalition and the New York Academy of Medicine have collaborated to create a working group on medical repatriation.  The goals of the working group are to 1) determine to what extent medical repatriation is being practiced by hospitals in New York State, 2) research the causes of repatriation, and 3) to develop long and short-term strategies to counter the practice.

To determine the extent and scope of the medical repatriation in New York State, researchers conducted structured interviews with service providers, including social workers, attorneys, policy workers and advocates, who are on the front-lines of patient advocacy.  The research revealed that, on average, hospitals in the New York area face approximately four repatriation cases per year.  While the majority of hospitals maintain that they do not repatriate patients against their will, the voluntariness of the patient’s departure is often murky when she never intended to leave the country. The hospital does not want to continue to provide the patient with uncompensated treatment. The patient no longer needs hospitalization, but she has nowhere to go and no one to care for her in the United States due to her lack of insurance. Left with little alternatives, the patient “elects” to depart, but mostly because she has no other choice.

The decision to repatriate an immigrant patient stems from a variety of social and legal factors. From the legal end, hospitals are bound by both state and federal laws to treat patients arriving with emergency medical conditions, regardless of the patient’s ability to pay. Due to the patient’s lack of insurance, however, the hospital is often unable to discharge the patient once the need for hospital-level care has ended. Hospitals are then forced to make economic decisions that prioritize financial resources over patient care, causing the patient’s and the hospital’s interests to diverge.   When the relationship between a large private hospital and an undocumented and uninsured immigrant patient becomes adversarial, it is more often than not the patient who suffers.

Communication between the patient and the hospital is a key social factor contributing to the repatriation trend.  When patients are unable to communicate with and understand their health-care providers due to a language or other barrier, their decision to return to their home country is not fully informed.  They do not realize that their decision to return to their home country could impede legal re-entry into the United States in the future, or compromise the quality of health care that they receive after they have been transferred.  Even when the patients are aware of their rights, their inherently weakened position in relation to the hospital impedes communication further; they may fear contesting the decision to repatriate because, as an undocumented immigrant, they are already on unequal ground.

The working group on medical repatriation has emerged to level the playing field between hospitals and immigrant patients. To counter the social causes of repatriation, a team of pro-bono attorneys will mobilize and intervene when a patient is at risk of repatriation without her consent.  This “legal rapid response team” would screen the patient for public benefits eligibility, educate patients and their families, in their own language, on their rights to appropriate discharge and about the immigration implications of their decisions to repatriate, and would otherwise conduct the kind of bedside advocacy that hospitals do not do once the relationship has turned adversarial. The team could also engage with hospital administration to negotiate alternatives to the international discharge, or when all else fails, pursue litigation. To affect the legal causes of repatriation, the working group could advocate for policy changes that benefit both hospitals and patients, like increased state funding for charity care or stronger civil and criminal penalties for inadequate discharges.

Importantly, the goal is not to generate or perpetuate adversity between hospitals and patients, but rather, to “fill the gaps” in patient services that hospitals do not often have the resources or training to provide.  Undocumented, uninsured and severely injured immigrants are featherweights on the scales of health justice. We on the working group want to weigh in.