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 another 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 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, and 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.
Micrograph of Marburgvirus (credit: The University of Texas Medical Branch at Galveston)
Last month, the Ugandan Ministry of Health (MOH) declared an outbreak of Marburg Virus Disease (MVD) in Eastern Uganda. To date, three cases have been reported (two confirmed, one probable), and all have died, resulting in a case-fatality rate of 100% for the outbreak. News of the outbreak led many to wonder: what is Marburg?
In a sense, Marburg is Ebola’s sister. More accurately, Marburgvirus is member of Filoviridae, a family of viruses that includes Ebolavirus, meaning they are similar in their structural and genetic makeup. They both cause severe hemorrhagic fever in humans and other non-human primates, and both have very high case-fatality rates. The endemic zones for the two viruses overlap a great deal, as they are both found in Central Africa. Scientists have long suspected that bats are somehow connected with the transmission of Ebolavirus to humans, while with Marburg, the association is known.
Marburgvirus was discovered in 1967, as a result of two simultaneous outbreaks in Germany and in Serbia; the disease is named for a town north of Frankfurt. (Note: the first Ebola outbreak in 1976 was actually two simultaneous outbreaks as well, though much closer together geographically, such that they were determined not be the same outbreak until several years later.) The German and Serbian outbreaks were similar in that they both involved laboratory workers that had become exposed to the virus after handling African green monkeys that had been imported from the same source in Uganda.[i]
Historically, MVD outbreaks have been fewer than those of Ebola – the CDC recognizes twelve, not including the current outbreak. Similar to the current outbreak, MVD outbreaks tend to be small, with respect to the number of fatalities. Twice, however, MVD outbreaks have been large: 128 died in northeastern Democratic Republic of Congo between 1998-2000, less than 100 miles from the Ugandan border; later, in 2004-2005, 227 died during and outbreak in Angola. The majority of outbreaks have taken place in or stemmed from Uganda or neighboring Kenya; the Angola outbreak and a small outbreak originating in Zimbabwe are outliers.
So, should we be fearful of a large-scale outbreak of Marburg, similar to what we saw in 2014-2016 in West Africa? No… but perhaps yes.
Marburg outbreaks, like Ebola, tend to emerge suddenly. But the mysterious nature of Ebola—its unclear linkage with its not-yet-fully-understood viral reservoir—is a characteristic not shared with its sister, Marburg. As such, health authorities within the Marburg endemic zone, such as in Uganda and Kenya, are able to respond to outbreaks somewhat effectively, using contact tracing to determine the source of the disease. In most cases tends to be a cave where bats roost, where a hiker has unwittingly wandered in and exposed themselves, or where bats have been collected for laboratory use. The regional expertise, public health infrastructure, and the developed understanding of Marburg make outbreaks within its endemic zone more capably dealt with.
However, as we hopefully learned from the West African Ebola outbreak, we should know that, like Ebola, Marburg may emerge outside of its endemic zone, and in places with weak public health infrastructures, microscopic doctor-to-patient ratios, and inexperience with diagnosing the disease. Marburg may be less temperamental or volatile than her sister, but that doesn’t mean we should treat her with kid gloves. She deserves as much attention and respect as her sister.
[i] Siegert R. Marburg Virus. In. Virology. New York: Springer-Verlag; 1972; pp. 98-153.
This World AIDS Day the world is facing perhaps the most complex political and epidemiologic environment in the history of the global AIDS pandemic. To tackle this environment we need an equally sophisticated response that builds new evidence for what’s really working at a macro level, refuses to accept the current funding realities, and mobilizes human rights frameworks in powerful new ways to advance the fight against HIV.
The good news of the moment is that the new UNAIDS report shows that the pace of HIV treatment scale up has increased for the third year in a row—with a net of 2.7 million new people added to treatment and a total of 20.9 million accessing treatment. This reflects shifts in HIV policies across the world toward treatment for all without requiring people living with HIV to wait to reach a certain CD4 level (damage to the immune system) before starting. The more troubling news is that HIV funding is deeply in peril. For the second year in a row the Kaiser Family Foundation found that international aid funding to fight HIV declined—by US$511 million from US$7.5 billion to US$7 billion. While national governments in countries with high HIV burden are increasing their funding to fight AIDS, the pull back in donor funds threatens scale up across the board.
This is an especially perilous moment in the history of the epidemic because things are going right on many fronts—but progress could not be more fragile and the relative success in some areas means that reaching the rest gets harder not easier. For example in many of the countries with the highest rates of HIV in the world a significant portion of people living with HIV know their status. On average in East and Southern Africa UNAIDS reports that 76% of people know their status and in South Africa the estimate is 86%. While this is a huge success, these countries continue to have large numbers of new HIV transmissions. This is in part because many who know their status are not on effective HIV treatment to halt transmission and HIV-negative people have limited access to proven HIV prevention technologies. But it is also likely that many of those who do not know their status—the 25% who are hardest to reach—are among those having sex and experiencing HIV transmission. Younger people in their 20s, for example, are among the most sexually active populations yet have far lower knowledge of their status while key populations such as men who have sex with men are less likely to know their status and successfully suppress the virus than their peers in many countries. So we have to start thinking differently and acting on the epidemic we face in 2018 not the one we faced a decade ago.
We need, in 2018, to be far more serious and precise about the impact of international efforts to fight HIV and the intersection of aid dollars and the national health system. Here at Georgetown’s O’Neill Institute we recently launched a new project with South African researchers to look at exactly how donor funded efforts are augmenting the national response at front-line facilities. We hope to start understanding a bit better how policies set at the highest levels, specifically regarding which funding source will support which services, play out by the time those policies trickle down to what people in health facilities experience.If we are serious about achieving global goals on HIV there is no alternative to increasing the efficacy and impact of these funds. Ours is a small contribution to the broader agenda that PEPFAR, the Global Fund, the World Bank, and other HIV financing agencies need to address head on—in an era of still growing needs, how can international funds build synergies in practice, not just in theory, with clear and identifiable benefit for communities affected by HIV?
Even if we succeed in increasing the efficacy of the funding we have there is no way out of the reality that more funds are needed. Recent data have shown, for example, that in the places where funding has been sufficient we have achieved key milestones against HIV. Where it’s not, we are failing. East and Southern Africa, for example, has seen ambitious levels of funding including from international sources like PEPFAR and Global Fund that are driving powerful results—like the recent evidence from the PHIA studies showing remarkable progress toward “epidemic control” in key countries. These striking results mean that HIV could move from a crisis to a manageable epidemic in these countries, but only if resources are sufficient to take scale up through to success. This it stands in stark contrast to West and Central Africa where funding has lagged far behind and, as a result, the region has just 35% of PLHIV on treatment and just 25% of all PLHIV achieving viral suppression.
We have to be serious about where the challenges are. A spate of good news in select East and Southern African countries is showing what’s possible. But over-emphasis on some leading countries—where it must be noted far more work is still required to turn possibility into reality—could blind us to the broader needs. The recent PEFPAR strategy is just one example—setting out what are notably ambitious goals for 13 key countries. But with neither PEPFAR nor Global Fund sufficiently financed for the task at hand, neither has a strategy to address the broader context in which the country facing the largest number of new HIV infections, South Africa (not one of the 13), is not on track to reach “epidemic control” as originally planned, countries in the region like Angola and Mozambique are further from success, and epidemics in West Africa led by those in Nigeria and Cameroon are not being met with anywhere near the level of effective response as in the South. Diagnosing the problem correctly has to be part of the solution in a pandemic that follows trade routes not national borders.
Finally, we need to start treating human rights as a truly integral part of the strategy to attack the HIV pandemic. My research has shown that countries that protect a constitutional right to health perform better on key health indicators—and HIV is a key part of that story. Where rights are well enshrined and, most importantly, where rights-supporting organizations like Section 27 in South Africa, Kelin in Kenya, CEHURD in Uganda, and many more are well funded, there is a real opportunity. In these contexts, policy actors seeking to advance access and equity are better able to break into closed bureaucratic policy cycles and force issues ranging from how budgets are spent to which drugs are available to whom into the open. It holds the potential to make HIV and health policy better than it would otherwise be at tackling real life challenges. The most recent UNAIDS report focused in on the Right to Health and with good reason. In 2018, Human Rights have to move beyond first generation rights and the important role they have played in protecting people living with HIV from discrimination and avarice and take the rights of access to scale—in the court rooms, but most importantly outside in all the venues where policy is made.
All of this comes at a time of rising global populism and weakened international institutions. Yet time and time again the global AIDS response has overcome seemingly intractable contexts—breaking the power of multinational pharmaceutical companies to set high prices and expanding financing for scale up through the global financial crisis are just two examples. The coming years, though, are likely to dictate the course of the epidemic—we can miss this opportunity because it is too complex for easy slogans or we can be real about the challenge and use all the tools of 2018 to halt HIV.
Matthew Kavanagh, PhD is visiting professor at Georgetown University and director of the Global Health Policy and Governance Initiative at the O’Neill Institute.
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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.