Expert Columnist post for the Hepatitis Policy Project at the O’Neill Institute for National and Global Health Law
Written by Richard J. Wolitski, PhD, Director, and Corinna Dan, RN, MPH, Viral Hepatitis Policy Advisor
Office of HIV/AIDS and Infectious Disease Policy, Office of the Assistant Secretary for Health,
Department of Health and Human Services
Viral hepatitis poses a serious threat to the health of millions of Americans from all walks of life. It accounts for more deaths in the United States than all other reportable infectious diseases combined. New infections are on the rise across the country as a result of injection drug use that has been driven by the opioid crisis that is gripping communities across the country. The severity of this problem was recognized by the editors of the American Journal of Public Health in what is certain to become an iconic cover. The February 2018 issue features an in-your-face cover image of a man injecting drugs into his scarred and scabbed arm. It is disturbing. It forces you to take notice, and it is not easy to forget.
Although the image is shocking for the cover of a journal, the editor’s choice to put this topic front and center is not. What is surprising is that has taken so long. New hepatitis C (HCV) infections have been increasing since 2009 and new hepatitis B (HBV) infections have remained stable or increased slightly after declining for more than three decades. The increase in new infections among young adults has resulted in increases in HCV transmission from pregnant women to their infants. Almost every one of these HCV infections could have been prevented; each new infection represents a failure of health care providers and health care systems.
We are losing ground in the battles against viral hepatitis despite the fact that we’ve made important scientific advances in prevention, care, and treatment. Vaccination against HBV infection is highly effective, but until recently required 3 doses. A new vaccine recently approved by the FDA can be delivered in two doses, which could increase the percentage of persons who are fully vaccinated against HBV. HCV can now be cured with an 8 to 12 week course of once daily oral medication that is more than 95% effective if taken as prescribed and has few the side effects. We cannot cure HBV infection at this time, but antiviral treatment can lower the amount of virus, prevent disease progression, and may prevent sexually transmission to others.
Why have we been backsliding in recent years, instead of moving forward? It’s not that we do not have the tools needed to get the job done. It’s not that we haven’t used these tools effectively. It’s not that we do not have a vision or a plan. We have had a national plan addressing viral hepatitis since 2011. CDC and other HHS agencies have put forward their own plans that are aligned with the National Viral Hepatitis Action Plan that include efforts to monitor, prevent, and treat new and existing cases. These plans also address the need to expand diagnosis, care, and treatment of viral hepatitis, especially among groups that have been most heavily affected. These plans lay out strong, science-based frameworks for mounting effective, comprehensive actions to combat viral hepatitis.
The National Academies of Science, Engineering, and Medicine (NASEM) convened a panel of experts from around the country to assess what it would take to eliminate viral hepatitis as a public health threat in the United States by 2030. Their 2016 and 2017 reports concluded that that viral hepatitis elimination is possible with existing prevention and treatment methods. It is important to keep at least two things in mind about their conclusions: (1) elimination is not the same as eradication of these infections—prevention, care and treatment would all still be needed for years to come, and (2) that achieving the goal of elimination will require “considerable will and resources.”
We strongly support the goal of eliminating viral hepatitis. It is the goal that we are all ultimately working to achieve. We also believe it is important to set realistic expectations for policy makers and to set performance targets that are achievable. We must make the best possible use of available resources and leverage technology, partnerships, policy changes, and other approaches that have the potential to result in lasting, sustainable viral hepatitis programs that are not dependent on one type of funding for their survival.
A key to the long term success and sustainability of viral hepatitis efforts is greater integration into existing health care services in ways that support the client in making the best possible choices he or she can and having access to the most appropriate and most effective services and programs that will keep them healthy. We believe that this can be accomplished by taking a patient-centered approach- considering the health threats that each person faces and developing a plan that allows that client to access both preventive health care and treatment for existing illnesses.
But creating and sustaining change cannot stop there. The changes also have to make sense to the people who are footing the bill. They need a return on their investment such as reducing health care costs, serving more people in need, increasing profit, recognition of innovation, or feeling good about helping others. If a change is not reinforced by a resultant benefit, it doesn’t stand a chance of being sustained.
There are clear benefits of greater integration and colocation of HIV, viral hepatitis, STD, TB, substance use disorder treatment, overdose prevention, comprehensive syringe services, primary health care, housing and employment services. In many cases, behaviors place people in situations where they are at increased risk for multiple physical and mental health problems. Many of these problems do not occur independently of each other. They are often intertwined with each other and affect the social and economic well-being of individuals, families, and communities. Understanding the needs of the individual and what’s important to them can support a more holistic approach to health and wellness that meets people where they are at, addresses their most critical needs—the ones that most endanger their immediate health and well-being, and helps them identify their own lasting solutions in novel ways that are feasible, self-reinforcing, and habit forming.
Actions speak louder than words. Actions are the foundation of what’s required to turn around the negative viral hepatitis trends that we have been seeing in the data, in our communities, and too often within our own families and among our friends. We need to choose our actions wisely and focus on the things that are in our power to change or that can support others to take necessary actions when we cannot. Among the things we can influence, we need to choose those that will provide the greatest benefits to the greatest number of people.
A key objective for us is to promote an accurate understanding of the magnitude of the problem of viral hepatitis, its severity, the challenges, the solutions, and what it would take to achieve the vision of the National Viral Hepatitis Action Plan.
A goal without a plan (that is feasible and implemented) is just a wish.
— Antoine de Saint-Exupéry (paraphrased)
The opinions expressed in this blog are the writers’ own and do not necessarily represent the official policy of the Department of Health and Human Services.
This blog post was authored by Dr. Daniel Lising, Research Assistant for the O’Neill Institute’s Hepatitis Policy Project. Daniel is an LLM in Global Health student at Georgetown University Law Center.
In recent months, the spotlight has been trained on the alarming opioid crisis and even the President of the United States declaring it to be a health emergency after a report stated that drug overdoses killed approximately 64,000 people in the United States in 2016. However, very little has been said on silent killers that occurs because of needle exchange behavior which occurs with opioid abuse. Commonly associated with such practices is HIV but another one of such diseases is Hepatitis C.
Hepatitis C is a contagious liver disease caused by the Hepatitis C virus which affects an estimated 2.7 million to as high as 5 million people in the United States. It can manifest as a mild acute illness occurring within the first 6 months of exposure to the virus. Approximately 15-25% of these infected will recover from this infection but a majority would progress to chronic Hepatitis C.
A most alarming fact of this type infection is that approximately 70-80% of people with Acute Hepatitis C will manifest will be asymptomatic or be without symptoms. Moreover, chronic hepatitis C is asymptomatic as well thus leaving a person with no clue that he has already contracted a potentially fatal illness.
Chronic hepatitis C is a leading cause of chronic liver disease such as cirrhosis and liver cancer and nationally accounts for more than 30% of liver transplant indications among adults. These complications once in the end stage liver disease stage costs up to $59,995 annually in 2011 USD and which is 2.5 times more expensive than the early stages of stages of chronic liver disease. The economic costs are staggering given the number of people suffering from the disease.
Approximately three-fourths of patients suffering from the disease are adults born from 1945 to 1965 who have had blood transfusions, dialysis or organ transplants prior to 1992 when testing for the virus began and those who used injection drugs or used intranasal cocaine. However, men and women in the 20-29 age group has also been noted to have increasing number of infections. In California, rates of 55 percent for men and 37 percent among women in that age group has been noted. These data are consistent with increases in hepatitis C infection throughout the country.
These facts illustrate the importance of early diagnosis of hepatitis C positive individuals before their illness progresses to the more debilitating chronic liver disease. Of particular concern is the baby boomers which could potentially been infected for decades without symptoms ever coming about. Early diagnosis is of even greater importance now since the advent of new antiviral therapy that represents a significant improvement over earlier treatment protocols and has shown outcomes consistent with cure after treatment of approximately twelve weeks.
Despite these advances, hepatitis C is severely underfunded both federally and states-wide. Certain state legislatures like California have allocated funds for pilot projects to curb the rising tide of infections but these remain insufficient to dent the quandary of increasing hepatitis C infection.
Targeted mechanisms are needed for different at-risk populations so that there is increase awareness and so that behaviors may be changed to prevent the further spread of this once deadly illness. Such mechanisms can take the form of syringe service programs which exchanges used syringes for new ones. However, these kinds of programs must be implemented without the associated threat of incarceration for possession of illicit substances. Furthermore, capacity building of primary care facilities and health personnel is also essential so that vulnerable segments of the population can have access to testing and effective treatment.
The necessary first step for all these is the express recognition of the States and Federal government of the Hepatitis C “emergency”.
The realities of health inequities may be too well known to shock us any longer. People in richer countries live longer than those in poorer countries. And within countries, people who are rich live longer than people who are poor, people with more education longer than people with little schooling. Practically everywhere, certain populations, like indigenous peoples, fair badly when it comes to the potential to live long, healthy lives.
Yet the tremendous nature of this injustice ought to shock us still. It ought to shock us that the residents of one mostly white suburb of St. Louis can expect to live to be over 91 years old – 35 years more than residents of another St. Louis suburb, where most residents are black. It ought to shock us that South Asian women who are among the poorest segment of the population are almost five times less likely to be attended by a skilled birth attendant – one of the most important interventions for reducing maternal mortality – than they would be if they were part of the wealthiest segment. And it ought to shock us that the TB incidence in Canada’s indigenous Inuit people is more than 270 times that of non-indigenous Canadians.
Such inequities coexist with a new political commitment to address them, as the world entered the Sustainable Development Goals era of Leave No One Behind several years ago. Redressing these health inequities is a momentous task, a challenge for our generation if Leave No One Behind is to avoid joining the ranks of Health for All by 2000 – the promise of the 1978 Alma-Ata Declaration on primary health care – as a noble promise that proved fatally empty. Indeed, even the Millennium Development Goals, lacking a focus on equity, failed to substantially and consistently reduce health inequities.
Certainly many efforts, from local to global initiatives, are underway to support the goal of leaving no one behind when it comes to health – and indeed, when it comes to life itself. The O’Neill Institute and a number of partners would like to add one more: that all countries develop National Health Equity Strategies. Through a partnership with Stop TB and USAID, and many others, we are developing a guide on National Health Equity Strategies.
What are National Health Equity Strategies? Some wealthier countries have these – if not quite as we propose. They delineate ways, in the health sector and beyond, to narrow health disparities, with particular attention and strategies to address health needs of certain marginalized populations.
Under National Health Equity Strategies as we are proposing, countries would tailor their responses to health inequities to the particular circumstances of all populations experiencing such inequities – not only some populations – and with extensive analysis to ensure that resulting strategies can address all major contributors to health inequities. The National Health Equity Strategy would include specific actions to take across populations and across the many causes of health inequities, seeking to narrow, and ultimately close entirely, these disparities – these injustices. The National Health Equity Strategy would not exist as a stand alone initiative. These actions should then be integrated into national strategies in health and other sectors.
Of course, good strategies alone cannot change the social and political dynamics that have led to persistent marginalization. Accordingly, the action plans would be backed by comprehensive accountability strategies. These would include regular monitoring and evaluation of measurable, time-bound targets; ongoing structures for continued, high-level political and community engagement in reviewing progress and recommending changes (these could build on existing structures), and; additional accountability strategies.
For example, targets might include reducing the proportion of migrants reporting mistreatment at health facilities by 50% within three years, narrowing the gap in life expectancy between indigenous and non-indigenous populations by four years within four years, reducing the number of people experiencing long-term homelessness by 80% within five years, reducing child marriages by 60% within five years, and reducing the number of people with mental disabilities in long-term mental health institutions by 100% within five years. Additional accountability strategies, meanwhile, could encompass human rights education and training, regular local and national health assemblies, legislation requiring public participation in health-related policymaking, and health equity impact assessments.
Integral to the concept of and proposal for these health equity strategies, linked to one of their central goals of empowering populations experiencing health inequities, members of marginalized populations would be in leadership positions in the process of developing the strategies and in follow-on structures. This would be at least one concrete opportunity for populations who are frequently sidelined from decision-making processes to instead be central to them.
Where are we in the process of developing this guide? An initial draft is nearly complete, with the assistance of a global Advisory Committee, with more than a dozen members. It includes people who are themselves members of marginalized communities, individuals who are work for international organizations, and a former minister of health, among others.
We believe it vital that our process of developing this guide be as broad and inclusive as possible. Accordingly, beginning in March and lasting for approximately two months, we will be holding an open, primarily online, consultation on the guide. Along with the opportunity to read and provide us feedback on the draft of the guide and related summary material, we plan to hold several webinars, and may have other means of engagement as well (such as possibly an online discussion group). We hope that you will participate.
Besides receiving feedback on the guide to improve its quality and accessibility, we aim to raise interest in putting this approach into practice, from governments that could spearhead these strategies to civil society organizations and communities experiencing health inequities that could advocate for them. Therefore, we would welcome your sharing information on the guide – such as this blog – with anyone whom you think might be interested in this initiative.
In addition, we would welcome your input in several areas:
If you have anything you would like to share in these areas, please email me (firstname.lastname@example.org). And if you would like to participate, you can email me or have a look as March nears at the O’Neill Institute’s event page, which will provide more information on the timing and process for the consultation as soon as it is available. We look forward to your thoughts and participation.
Posted in Global Health, Human Rights, Resources; Tagged: accountability, consultation, discrimination, health disparities, health equity, health equity strategies, Leave No One Behind, marginalized populations, national health equity strategies, participation, right to health.
The United States Department of Health and Human Services (HHS) recently announced the formation of a new “Conscience and Religious Freedom Division” which will sit in the HHS Office for Civil Rights. HHS says that this new division has been established to “restore federal enforcement of our nation’s laws that protect the fundamental and unalienable rights of conscience and religious freedom.”
What does this new division really do?
This new division can be viewed as part of a stream of freedom of religion and conscience laws that have been passed in several states and offer legal protection to people who refuse services based on their religious beliefs. These laws have taken various forms, including Religious Freedom Restoration Acts (RFRAs). RFRAs have been passed by twenty-one states with many other states considering similar bills.
Specific exemptions for medical providers have been proposed or enacted in several states as well. Florida tried and failed to pass a bill that would have allowed religious health care facilities to refuse to “administer, recommend, or deliver a medical treatment or procedure that would be contrary to the religious or moral convictions or policies of the facility or health care provider”. In 2016, Mississippi passed a law that prevents the state government from pursuing discrimination complaints against organizations or individuals who refuse to provide counseling, sex-reassignment surgery, fertility treatment, and other services that are against their conscience or religious beliefs. Civil rights groups have challenged the constitutionality of the Mississippi law. Also in 2016, Tennessee passed a law that allows counselors and therapists to turn down treating patients based on “sincerely held principles”.
At the national level, conscience laws already exist, so while the new HHS division cannot act outside the current laws, it will increase enforcement of these laws. Health care providers will be able to file complaints with the HHS Office of Civil Rights if they believe that they have experienced discrimination because they have:
What are reactions from the civil rights and public health community?
Several women’s and LGTBQ rights groups as well as medical organizations have come out against the creation of the new division. For example, the National LGBTQ Task Force stated “health professionals have a duty to care for all of their patients regardless of one’s gender identity, sexual orientation, faith, creed, race, political views or disability.” These groups believe that new regulations will create an unequal system of healthcare where cases of denied and delayed medical care could disproportionately impact vulnerable populations.
Notably, the new division comes from an administration that has already come under fire for threatening healthcare coverage for vulnerable populations and releasing guidelines banning certain words from use in budget submissions to Congress.
What are the implications of the new division going forward?
This division as well as laws and regulations that allow doctors to refuse to treat patients based on their conscience and/or religious views have broad and severe implications for several vulnerable and underserved populations. HHS cites abortion, physician-assisted suicide and sterilization as examples of types of procedures that would be covered, but enforcement could extend to support health care providers in refusing to treat transgender and LGBTQ people. Transgender and LGBTQ people, people living with HIV, and others from marginalized communities already face stigma and several barriers to access to care, and this division opens up the door even further.
The division and the laws and regulations that it will help to enforce ultimately obscure the professional duty that healthcare professionals have to treat patients regardless of race, gender, sexual orientation, and gender identity.
This blog post was co-authored by Natalie Dobek, a second-year law student at Georgetown Law and a research assistant at the O’Neill Institute.
Many thanks to Yashaswini Mittal for her significant contributions to this article, and especially for her and her team’s work at Vidhi Centre for Legal Policy fighting stigma and discrimination against people affected by leprosy in India, through their groundbreaking public interest litigation.
Last Sunday was World Leprosy Day, an annual opportunity to raise awareness of leprosy, increase access to rapid effective treatment (Multi-Drug Therapy) which stops the spread of the disease with the first dose and prevents avoidable disabilities, and to take concrete steps to address pervasive legal and societal discrimination against persons affected by leprosy. Leprosy may have been present as far back in human history as 1550 B.C. in Egypt and 660 B.C. in India and people affected by leprosy have long suffered from stigma, discrimination and ostracism.
Leprosy is caused by mycobacterium leprae, and affects the skin, nerves, respiratory tract and the eyes. Leprosy can cause discoloring and loss of sensation in the skin including the ability to feel pain which can lead to injuries; if left untreated, nerve damage can cause permanent and debilitating disabilities including paralysis in the hands and feet, reabsorption of fingers and toes into the body, corneal ulcers, blindness, loss of eyebrows and deformity of the nose. While leprosy was eliminated as a public health problem in 2000 and in most countries by 2005, in 2016, there were 216,108 new cases of leprosy registered globally, two-thirds of which were in India. Between two and three million people globally are living with leprosy-related disabilities.
While leprosy is curable and is not transmitted through casual contact (leprosy is transmitted through droplets from the nose and mouth when there is close contact with untreated cases), people affected by leprosy continue to face widespread stigma and discrimination, particularly in countries with higher prevalence, such as India, Brazil and Indonesia. Some of the stigma stems from the belief that leprosy is punishment for ‘sins’ or ‘immoral behavior,’ due to the history of ostracism of those with leprosy and their families (and fear that acquiring leprosy will result in the same), and lack of knowledge and misconceptions of leprosy.
In some places in the world, legal discrimination against people affected by leprosy is far reaching and courts themselves have historically played a role in exacerbating entrenched stigma around leprosy. For example, in one 1913 case in India, during which the matter for discussion was what kind of leprosy was grounds for divorce, one judge stated “[d]eformity and unfitness for social intercourse arising from the virulent and disgusting nature of the disease would appear to be what has been accepted in both the texts and the decisions as the most satisfactory test.” This appalling line has been widely cited and relied upon by subsequent courts, including as recently as 1974.
Discussions concerning public health, isolation and other forms of confinement and quarantine were integral aspects of debates surrounding leprosy law and policy in the 19th and 20th century, including during the International Leprosy Congresses. Consequently, a number of countries enacted or revised existing laws concerning leprosy during the 1920s-1930s. Despite the introduction of treatment for leprosy in the 1940s, a 1954 WHO review of leprosy legislation found that countries continued to utilize ineffective isolation and other measures despite the limited infectiousness of leprosy: “It would not only appear to be difficult to justify some existing practices in the light of our present knowledge of the disease but also, in some instances, they would appear to be in contradiction to the facts regarding its communicability ….” While it has now been 64 years since WHO expressed concern over the use of inappropriate infection control practices which were not science or evidence-based, many ineffective and discriminatory laws which impede human rights and exacerbate stigma are still in place today.
For example, a recent legal challenge and groundbreaking interim decision of the Supreme Court of India asks the Indian Government for an explanation of the basis for which 119 federal and state laws discriminate against persons affected by leprosy. While the final decision in the case is still pending, the legal challenge highlights the legal provisions that deny persons affected by leprosy their right to equal treatment under personal laws, employment and movement within public places. Several laws highlighted within the case also allow for indefinite detention of persons affected by leprosy, including children, solely on the basis that they are suffering from leprosy. Notably, in addition to failing to meet human rights standards, these laws are not based on risk of infection or evidence since they do not reflect the difference between an untreated person affected by leprosy and a person who has been administered with the first dose under Multi-Drug Therapy (the treatment for leprosy according to the WHO). Persons who have been administered with the first dose under MDT are rendered 99.99% non-infectious, thereby eliminating any basis for curtailing the rights of such persons for the benefit of public health.
Discriminatory laws also empower law enforcement officials to expel persons who appear to be suffering from leprosy from markets, educational institutions and public conveyances without requiring any proof of treatment or non-infectiousness. Consequently, persons affected by leprosy are denied access to markets for buying vegetables, fruits or groceries for feeding themselves or their family members, access to education institutions and public conveyances that are necessary for them to be able to access treatment for the disease.
In addition, several stigmatizing and otherwise problematic laws discuss leprosy in the same vein as ‘lunacy,’ for example discussing what ought to be done with ‘lepers’ and ‘lunatics’, as though there should be similar interventions for people affected by leprosy and for people with mental illness. The derogatory term ‘leper’ is still used in Indian laws enacted as recently as 2012.
With arguments that ring similar to the 1954 WHO report, the Petitioners in the Vidhi case highlight that the discriminatory laws “irrationally treat persons affected by leprosy as a separate class on the basis of a medically inaccurate and outdated conception of the infectious nature of the disease” without taking into account the effectiveness of the standard treatment for the disease, impeding Constitutional rights to dignity, equality and freedom of movement.
Beyond the 119 laws expressly discriminating against people affected by leprosy, societal stigma and the continued use of ‘colonies’—currently there are approximately 700 in India—underscore that much must still be done to ensure meaningful equality for people affected by leprosy. Societal discrimination reaches beyond those who have leprosy, impacting those who live in the colonies. For example, advocates have highlighted that simply having an address in a leprosy colony can result in disqualification from applying to jobs and denial in school admission.
Yashaswini says that the court decision is a “significant first step towards addressing laws which perpetuate the stigma around leprosy, dissuade affected persons from going to public health establishments to access treatment, and curtail their right to liberty and equality.” Let us hope that the final decision of the court will be effective, swift and meaningful, and reach beyond the confines of the courtroom and into society.
 Madras High Court, Kayarohana Pathan v Subbaraya Thevan (1913).
 Supreme Court of India, Swarajya Lakshmi v GG Padma Rao (1974).
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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.