This article is one of two on the O’Neill Blog this week that focus on confinement, human rights, and public health.
In October 2014, Kaci Hickox, upon her return to the United States, found herself confined to a tent outside of Newark, New Jersey’s University Hospital. Hickox, a nurse, was returning from Sierra Leone, where she had been caring for patients during what would eventually become the deadliest Ebola outbreak ever. Hickox had assented to tests that would determine if she was infected with the deadly virus, but despite testing negative and exhibiting zero symptoms of the disease, she was placed in mandatory quarantine.
Hickox was the first person quarantined under the joint policy announced between Governors Chris Christie (New Jersey) and Andrew Cuomo (New York) which stated that any traveler returning from West Africa with possible exposure to Ebola-infected persons would be held for 21 days (the incubation period for Ebolavirus, the period of time between exposure and onset of symptoms), regardless of how healthy they appear to be. The policy was in contradiction to others in place at airports receiving similar travelers—Chicago, Atlanta, and DC’s Dulles airports—which required a health screening at arrival, and asked those that passed to report daily temperature readings with thermometer given to them. Hickox would eventually file suit against Governor Christie and his administration, saying that her three-day detention in that tent was unlawful, and a violation of her civil and human rights.
The history of quarantines officially begins in 14th century Venice, when city officials would force ships arriving from infected ports to remain anchored offshore for quaranta giorni (40 days, in Italian). Since then, quarantines have continued to be tools for municipalities, states, or nations to prevent the introduction or importation of infectious diseases, often undermining the rights of the individual. In 1994, the United States passed the Public Health Service Act, which granted the U.S. Public Health Service the responsibility for preventing the introduction, transmission, and spread of communicable diseases from other countries. Today, this responsibility is taken on by the Centers for Disease Control and Prevention (CDC), whose new focus is less about routine inspections, and more about program management and intervention.
Hickox’s lawsuit contended that Governor Christie and his administration’s decision to detain and isolate her was based on politics, not science—that the decision to quarantine her was meant to show a tough stance on protecting the public from Ebola. The lawsuit contended that the Christie administration’s actions were based on flawed policy that was based on standards that were unnecessarily rigid, and more stringent than federal standards. Hickox and her attorneys felt that she was confined in spite of evidence supporting that she was not ill, and not a risk for spreading the disease. Udi Ofer, her attorney, said, “The decision to quarantine anyone must be made based on science, not fear and politics. In holding Kaci Hickox, the governor and the former head of the Department of Health not only violated her basic constitutional rights, but they did so without any scientific foundation.”
In June this year, the lawsuit was settled. Hickox did not receive monetary damages; instead, a change was made to New Jersey’s procedures for quarantine. Under the settlement, a person designated for quarantine is guaranteed the opportunity to hire and meet with an attorney, “send and receive communications, have visitors, present evidence, and cross-examine witnesses”. Also, oral thermometers will be used to determine if a person has a fever—Hickox originally registered a fever with a temporal thermometer, but not with an oral thermometer. Finally, and most importantly, the state must demonstrate why more restrictive quarantines, such as the one Hickox received, are needed over less restrictive ones.
Especially dangerous pathogens, such as Ebola, are sure to threaten national security again in the future; quarantine is but one tool in the toolbox that can be considered under such extreme circumstances as an Ebola outbreak. If it must be used, less restrictive options should be attempted prior to or in tandem with confinement. The 2014 New Jersey Ebola Quarantine serves as a reminder that to use such a tool without sound science or reasoning is to do so potentially at the expense of human and civil rights.
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This year’s #MeToo movement has triggered a national reckoning with sexual harassment and misconduct in the U.S. However, the movement began 10 years ago when Tarana Burke founded a nonprofit organization aimed at supporting survivors of sexual harassment and assault. Tarana explains that “from the start of #MeToo going viral and the recognition of my years of work preceding it, I have been happily allowing this wave of attention to shine a much-needed light on the fight to end gender-based violence. I founded the “me too” movement in 2006 because I wanted to find a way to connect with the black and brown girls in the program I ran.”
Tarana is a woman of color, and movements like this one have often shifted the conversation away from the experiences of people of color, as well as other marginalized groups of people who are most likely to experience sexual harassment, sexual assault and other forms or gender-based violence. According to Tarana, “what history has shown us time and again is that if marginalized voices — those of people of color, queer people, disabled people, poor people — aren’t centered in our movements then they tend to become no more than a footnote. I often say that sexual violence knows no race, class or gender, but the response to it does. “Me too.” is a response to the spectrum of gender-based sexual violence that comes directly from survivors — all survivors. We can’t afford a racialized, gendered or classist response. Ending sexual violence will require every voice from every corner of the world and it will require those whose voices are most often heard to find ways to amplify those voices that often go unheard.”
The #MeToo movement should be placing the voices of those most affected by sexual harassment, sexual assault and other forms or gender-based violence at its center. To learn more about some of the voices that are currently missing from this important national conversation, check out the following:
It’s that time of year when people are feeling more generous than ever. Many Americans are donating to charitable organizations such as the Red Cross or the Salvation Army. Due to the surge of devastating natural disasters that struck the country this past year, many people have made additional contributions to help the victims rebuild their lives. Most charitable givers do not think twice about the benefits of donating to long-established and well known organizations such as these. However, a closer investigation can tell a different story—a story of mismanaged funds, alleged corruption, and excessive overhead costs.
Corruption is a major issue, which has been a hot topic of discussion recently with the International Federation of the Red Cross (IFRC) being linked to corruption accusations related to the Ebola outbreak in West Africa. From 2014 to 2016, the deadly Ebola virus spread throughout West Africa, killing more than 11,000 people and drawing a plethora of aid workers and medical professionals to the region. According to the IFRC, some of the responders fraudulently used funds earmarked for aid. In total, it is estimated that over $6 million was lost, which included $2 million in losses related to collusion between IFRC staff and bank employees in Sierra Leone, $1 million in fraudulent billing in Guinea, and $2.7 million in fraudulent cost inflation, payroll, and volunteer payouts in Liberia.
This isn’t the first time the IFRC has been criticized for botching relief efforts in major times of crisis or for its administrative and fundraising costs. In fact, there is a fairly long history of condemnation of the IFRC and its affiliated organizations. Back in 2005, the American Red Cross (ARC), a branch of the IFRC, stepped in to assist with Hurricane Katrina, which mostly devastated New Orleans, Louisiana. Reports detailed examples of how the organization failed to help hurricane victims. One example involved volunteers arriving with only bleach when people had no food or water, and other donations that were of little use. Another instance described how pastries arrived moldy and inedible because they were shipped without refrigeration. International observers claimed that elements were so bad that they were on the verge of criminal wrongdoing. Relief efforts in Haiti in 2011 following the devastating earthquake were also harshly critiqued. The ARC had raised almost a half a billion dollars yet had very little to show for all of the money that they raised. In 2012, the handling of Superstorm Sandy was also deeply concerning to many, despite an internal retooling effort. In fact, one Red Cross driver called the response “worse than the storm.”
How do you know that the money you are donating to charitable organizations goes to the people who need it the most and that excessive amounts are not being used on administrative costs, including enlarged salaries and huge overhead costs? The publication MONEY advises giving to charities that spend no more than 20% of their revenue on overhead costs. Individuals can search for these numbers on websites such as Charity Navigator.
The site reports that in fiscal year ending June 2015, the ARC spent 10.4% of its revenue on administrative costs and fundraising efforts. However, this is small compared to what some other charitable organizations and nonprofits spend on administrative costs. In 2012, the Diabetes Foundation, with the mission of informing and educating people about Type 2 diabetes, reported a total overhead of 83%. Friends of MS, a charity with a goal to help people with Multiple Sclerosis by supporting research and donating to programs that help those with the disease, reported a total overhead of 83.0% in 2012. Charity Navigator also has a page that lists and evaluates highly-rated national/international organizations.
There are approximately 1.4 million nonprofits in the United States, 1 million of which are public charities. Thus, there are a lot of organizations to choose from. However, before reaching for your wallet and donating to the first charity that comes to mind, this year do your due diligence and take a few minutes to research where and how your charitable donations are actually being spent.
This blog post was written by Sonia Canzater and Jeffrey S. Crowley of the O’Neill Institute, and originally published on December 6, 2017 on the HepVu blog. The original post can be found here.
These are the facts:
That last sentence above seems out of step with the first three. How is a curable disease still wreaking havoc on public health in this country? Why can’t we just treat and cure these people and make Hepatitis C a rare disease? The answers to these questions are complex, but those who work on Hepatitis C issues can agree on a key obstacle in achieving our goal of decreased Hepatitis C prevalence: we don’t invest enough in the prevention of Hepatitis C, or in the treatment of the disease.
Excluding health care expenditures through health insurance programs, the nation’s investment in a public health response to viral hepatitis (includingforms other than Hepatitis C) is a meager $34 million per year, of which nearly four of every five dollars is passed on to support state, local, and community efforts to prevent hepatitis transmission. On a related note, we do not have adequate viral hepatitis surveillance and monitoring systems in place to estimate the prevalence of Hepatitis C in every state, let alone every county or zip code in the United States. We know too little about the behavior of the disease within different populations, and we do not have enough information to identify emerging trends or to adequately target resources to changing needs. Without sufficient information on the scope of the problem, public health officials are at a great disadvantage on how to develop the best strategies to resolve it.
The importance of surveillance in monitoring the Hepatitis C epidemic
In every state, health care providers are required to report newly diagnosed cases of Hepatitis C to the state public health authority. Most reports provide sparse information on each case, often lacking data such as age, gender, location, or risk behaviors. This often limits the usefulness of these reports to a mere headcount. Currently, only 14 states conduct Hepatitis C data collection that even remotely captures the granularity of information needed to develop a statistically reliable understanding of the scope of the nation’s Hepatitis C problem. These states are funded by the Centers for Disease Control and Prevention (CDC) to provide this “enhanced surveillance” of Hepatitis C, which includes verifying the validity of each case, contacting health care providers and laboratories to ensure all cases are reported, and collecting other information such as demographic data, risk factors, and location that can aid in understanding the proliferation of the illness in a community.
In addition to strengthening Hepatitis C surveillance by funding all states and some local jurisdictions to gather far more granular data in a standardized form, other existing data sources can provide critical supplementary information. Insurance claims data, laboratory reports, and clinical care data are readily available, but not being utilized uniformly. HepVu provides an invaluable tool for public health authorities to better understand the impact of the illness on a statewide level. However, having more consistent and reliable local-level data would help inform tailored strategies that deploy scarce public health and health care resources to prevent new infections, screen and diagnose cases, and treat those infected.
Key recommendations to improve Hepatitis C surveillance on the path to elimination
Even modest increases in our public health investment could have a big impact. While we need more funding for a range of services and activities, including funding to make treatment more accessible, strategic investments are needed to strengthen our national system of monitoring the Hepatitis C epidemic.
In a brief we published in June 2017, we identified five actionable priorities for strengthening how we monitor Hepatitis C:
1) Expand and standardize reporting to the CDC: Policymakers should phase up active surveillance of Hepatitis C in more states and territories, as well as work with local jurisdictions in identified hot spots. We call for the CDC’s Division of Viral Hepatitis (DVH), working with congressional appropriators, to develop a five-year plan for building the capacity to conduct active surveillance in the great majority of U.S. states.
2) Utilize electronic medical records to collect data on Hepatitis C cases and the cure cascade: State epidemiologists should be funded to establish and utilize an integrated electronic medical records database, which would also provide matching metrics with cases, such as race, age, gender, and progress of treatment.
3) Fund epidemiologic research using clinical data sets: Clinical care data are a largely untapped resource that holds great potential for better informing responses to Hepatitis C and relies on data that already exist. In addition to the CDC, we believe that agencies across HHS and in other Departments such as Veterans Affairs and Defense should be directed to fund epidemiological research on Hepatitis C.
4) Integrate improved monitoring of Hepatitis C with responses to the opioid crisis: The nation is increasingly recognizing the scope of the public health crisis we are facing related to opioid abuse. Preventing and treating Hepatitis C must be elevated as a signature component of the national response to opioid abuse.
5) Establish and monitor Hepatitis C elimination plans across major U.S. health systems: Strategic plans are needed to eliminate Hepatitis C in the United States. One example is the Cherokee Hepatitis C elimination project, wherein the tribe aims to screen 85% of Cherokee Nation health patients between the ages of 20 and 69 by the end of 2018. The Department of Veterans Affairs is also leading the way toward eliminating Hepatitis C in the Veterans Health Programs. Other public programs and systems should develop their own elimination plans, including the Ryan White HIV/AIDS Program, the Health Centers Program, and various correctional systems in the U.S.
With curative drug therapies now available, it is feasible to eliminate Hepatitis C in the U.S. but this will require more public attention, expanded access to treatment, and strategic investments to improve monitoring and strengthen the public health response to Hepatitis C in states and communities all across the country.
[I thank Noor Shakfeh, a Syrian-American who has lost family members to the Syrian regime, and Sara Afshar, who directed and produced Syria’s Disappeared, for inspiring this piece, and for deepening my own understanding of solidarity.]
Though they have disappeared from the headlines, the depravities of the Syrian regime during the war that has raged inside the country for more than six years – a war full of war crimes, crimes against humanity, and even acts of genocide – are on prominent display, thanks to YouTube and intrepid journalists. They were most visibly on display a year ago as the regime and its Russian allies rained death upon the people of Aleppo, but have extended from the murderous crackdown on peaceful protesters even before the war began to the regime’s continually aiming their bombs on hospitals and health workers.
Yet all but hidden from view is another set of massive crimes against humanity that the Syrian regime has perpetrated – the murder of tens of thousands of people in its detention centers and military hospitals. The victims include at least 17,700 people killed through December 2015 through torture and inhuman conditions (such as starvation and lack of medical care) in detention facilities, and another 5,000-13,000 people hanged at a single military prison in Damascus (the Saydnaya Military Prison), also through December 2015. Thousands more detainees have likely been murdered in the past two years.
The torture and murder of Syria’s prisons are not entirely hidden. Survivors, family members, and a handful of defectors have spoken to human rights groups, including Amnesty International. In August 2013, a Syrian military defector, known as Caesar, smuggled more than 28,000 photographs of murdered prisoners out of the country. And now British journalist Sara Afshar has brought these crimes – and their survivors – to screen in the documentary Syria’s Disappeared. (I write “crimes,” yet how really can words describe the inhumanity of an interrogator who jumps up and down on a prisoner – any prisoner, any person, but here, ones whose only “crime” was calling for their country to be free – to break his ribs, or running electric shocks through a person’s body and watching as she turn blue?)
I recently watched Syria’s Disappeared. Two things stood out to me. One was just what I described, a reminder – though alas, one that we have far too often in this world, if rarely as powerfully presented or painful to witness – of the inhumanity that is in our midst. But the other message stood at the opposite end of humanity. I saw people who had every reason to whither away from life – former detainees who had survived life’s worst and experienced the ultimate powerlessness of torture, along with family members of victims – defy their and their loved ones former captors. Instead of being beaten into a life of hiding and fear – a response that would have been more than understandable – they became the most tireless and indomitable of advocates for justice and for the freedom of those still detained.
How can, how should we response to this duality, the two ends of the spectrum of humanity?
There may be nothing we can do – short, perhaps, of dropping everything to join the survivors and their families in campaigning for justice and the freedom of those who remain detained and might yet be saved – that would truly match the urgency of the moment. But on a smaller scale, we can act. You could join Amnesty International in calling for the U.S. and Russian governments to press the Syrian government (and other armed groups) to disclose the whereabouts and fate of those detained. You could raise awareness – your own and that of others – by viewing (or even hosting) Amnesty International’s Tens of Thousands exhibition, or hosting a screening of Syria’s Disappeared. Join the Syrian Families for Freedom, a movement of disappeared and detained Syrians. And of course, you can contact your congresspeople and the administration to urge that they do what they can, in their positions of authority.
For some people, in a single moment, life takes a turn both unexpected and unwanted, in the worst possible ways – the accident that turns a man who was known as Superman into a quadriplegic, the mother who buries her son, an unarmed black man killed by police. But somehow they find deep meaning in their unexpected new life – advocating for the rights of people with disabilities, advocating for police reform and racial justice. Or, advocating for justice against perpetrators of the grossest of human rights violations, and freedom for their victims who might yet be saved. Those who seek to destroy justice and the people who demand it may instead create the most passionate advocates for justice.
Perhaps the lesson for those of us not thrust into these situations is that we who are ourselves fortunate beyond imagination to be free of those horrors can choose a quest for justice and stand in solidarity with those who have had tragedy, and worse, thrust their way. The causes of the parents whose child dies of hunger, the husband whose wife dies in childbirth, the young adult who loses his parents to a car crash on unsafe roads, the parents who lose their child to gun violence, and yes, the mother who loses her son and the democracy advocate who loses his friends to the torturers of Syria’s prison and the regime whose policies they carry out – their causes can become our cause too. We who are not put in these situations have the luxury of choosing which causes to make our own. We may not be able to devote ourselves to all of them, but we have the responsibility to make our choices – and to act.
Our capacity to make a difference may seem painfully limited compared to the injustices around us. Those actions I proposed for Syria, knowing the political situation and the gravity and urgency of what is happening in Syria’s detention facilities, yes, to me too, they seem wholly inadequate. But we do what we can – and if enough of us act, impossible destinations may come within reach.
And no matter what the result, our acting will make this difference: it will demonstrate to those families of Syria’s disappeared, and to the survivors, that they are not alone, that others are joining in what has become the cause of their lives – that we will march alongside those who are “armed with…love.”
That solidarity is of real value. The Syrian regime sought to strip those who demanded nothing more than freedom and democracy of every ounce of power and human agency. Yet survivors and family members of the disappeared have refused to lose their beliefs, in their ideals or in themselves. In our standing with them, they can see that they have, indeed, kept alive that hope for a free and democratic country, and for justice. We can be proof of their power to shape the world. The regime sought to decimate their ability to influence the course of events. Instead, they have achieved a rare level of power, touching the lives and affecting the actions of people the world over, mobilizing others in the causes they hold dear, mobilizing others to stand for the best of humanity.
Yes, Syria’s torturers sought to extinguish the humanity of their victims, to assert that those demanding freedom were somehow less than human. They failed. Instead, they proved that the humanity of their victims was beyond the reach of their cruelest acts. May that inspire us all to give our own humanity its truest expressions.
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The views reflected in this blog are those of the individual authors and do not necessarily represent those of the O’Neill Institute for National and Global Health Law or Georgetown University. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.