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.
According to the CDC, approximately 2.7 to 3.9 million people are chronically infected with Hepatitis C (HCV) and of every 100 persons infected, 1 in 5 will die from the consequences of chronic infection. One of the means of dying from HCV is the development of hepatocellular carcinoma or liver cancer which is one of few cancers that have increased in incidence in the United States in the last 10 years with an estimated 42,220 new cases for 2018. These statistics translates to a projected 30,200 death in 2018 and of several hundred thousand deaths in the future, all because of a treatable infectious disease.
Among populations at risk for infection are adults born from 1945 to 1965, more commonly known as the “Baby Boomer” population, who had blood transfusions or organ transplantation prior to 1992 when screening for HCV began. They comprise approximately three-fourths of patients suffering from the disease. In 2013, both the CDC and US Preventative Services Task Force have recommended one-time HCV screening for this population.
However, in a recently published article titled Hepatitis C Virus Screening Trends: Serial Cross-Sectional Analysis of the National Health Interview Survey Population, 2013-2015[i], it was found that screening rates for baby boomers was only at 11.5%-12.8%. Other populations studied, both younger and older then baby boomers, had similarly low screening rates.
It was found that barriers existed at multiple levels which prevented the target population from being screened for HCV. These include low awareness of HCV prevalence and screening recommendations among healthcare providers as well as insufficient communication skills to impart the importance of screening to patients. Among patients, lack of knowledge of HCV infection and transmission and lack of health insurance to pay for screening was found to be barriers to the screening.
A recurring barrier that needs to be addressed in both patients and providers is the lack of education on the disease itself. Increasing efforts to raise awareness of the importance of screening as well as the availability of new treatment options that have exceptionally high cure rates should be undertaken so that individuals may avail of the one-time screening to determine the presence or absence of infection.
Another barrier that was found was the lack of adequate funding for HCV prevention and control and inadequate insurance reimbursement. These policies are not economically sound since screening is only a singular event and the cost of treating the illness during the early phases of infections is far less than the cost of treatment once the complications such as cirrhosis and liver cancer develop.
The need for a coherent national strategy is imminent since HCV is a national problem and causes more deaths than all 60 of CDC notifiable diseases combined. This is further exacerbated with the
[i]Kasting, M.L., Giuliano, A.R, Reich, R.R.et.al. Hepatitis C Virus Screening Trends: Serial Cross-Sectional Analysis of the National Health Interview Survey Population, 2013-2015, Cancer, Epidemiol, Biomarker Prev; 27(4) 1-11 (2018)
AIDSWatch 2018 is March 26 and 27. AIDSWatch is the nation’s largest annual constituent-based national HIV/AIDS advocacy event, bringing together hundreds of people living with HIV and their allies to meet with members of Congress and to educate them about the important issues at state for people living with HIV/AIDS in the United States.
In advance of AIDSWatch, Jeffrey S. Crowley and I released a new report, HIV Prevention in the United States: Federal Investments are Saving Lives and Strengthening Communities. The report details the history of HIV prevention in the US from the earliest years to today and identifies priority areas where more innovation is needed for forward progress in reducing HIV as a public health threat. Our goal is to tell the story of HIV prevention in a way that offers a compelling case for ongoing investments that will move us closer to ending the HIV epidemic.
Important progress has been made in reducing the size and scope of the HIV epidemic in the US, but the progress has been uneven with gay and bisexual men and transgender women, especially those who are Black and Latino/a, being disproportionately impacted. From 2008 to 2014, new HIV infections increased by 20% among Latino gay and bisexual men, and HIV rates rose for gay and bisexual men aged 25-34, even as rates fell in nearly all other groups. According to Centers for Disease Control and Prevention (CDC) data released yesterday estimating HIV incidence and prevalence in the US from 2010 to 2015, gay and bisexual men aged 25-34 and Latino gay and bisexual men saw a 32% increase and a 22% increase in new HIV infections respectively.
Federal investment in HIV prevention remains critically important. Our report states that federal investments must support continuing innovation to:
The report is intended to be a resource for policymakers and HIV community stakeholders and to inform deliberations related to federal investment in HIV prevention. The O’Neill Institute’s Infectious Disease Initiatives continue to work with an array of policymakers and stakeholders, including federal agencies, state and local officials, and community members and advocates, to support effective HIV and hepatitis prevention, care, and treatment. In addition to this report, O’Neill Institute reports, policy briefs, and guides provide information, research, technical analysis, and recommendations so that policymakers and health officials can streamline policies and services to better support people living with and affected by HIV and so community stakeholders have the tools they need to advocate for investment and progress in efforts to end the HIV epidemic.
Photo: Hindustan Times
Tomorrow is World Tuberculosis (TB) Day, which commemorates March 24, 1882, when Dr. Robert Koch announced that he had discovered the cause of TB, mycobacterium tuberculosis. Today, TB is preventable, treatable and curable. Yet in 2016 there were 10.4 million new TB cases and 1.7 million deaths—a higher number of deaths than any other infectious disease globally and more deaths than HIV and malaria combined. This is inexcusable.
While the world committed to end TB as a public health threat by 2030, at the current rate of decline, it will take until 2182 to reach WHO targets, 152 years beyond the target. An effective response to TB in line with the vision of the Sustainable Development Goals to leave no one behind requires concerted effort to address the deep, underlying structural issues, particularly the pervasive human rights violations that drive TB.
TB is a disease of poverty and inequality, and is driven by lack of access to quality health care, including effective medicines and rapid diagnostic tools and inadequate access to determinants of health such as nutrition, sanitation, safe and healthy working environments and health-related information. Poverty and discrimination increase the likelihood of TB exposure and infection, and significantly impact the extent to which individuals have access to TB prevention and quality TB care, services and support.
Some populations are at especially high risk of TB due to social marginalization, environmental, biological and/or other behavioural factors, including indigenous persons, migrants, prisoners and detainees, people who are homeless, miners, people living with HIV, people who use drugs, and children. For example, indigenous persons have TB incidence rates up to 270 that of the general population.
Addressing Human Rights Barriers to TB
To address human rights barriers to TB, the O’Neill Institute has partnered with the Stop TB Partnership and USAID to focus on several areas concerning TB and the law, including confinement and TB and the right to health of migrants.
Laws inconsistent with human rights standards fuel the TB epidemic, including those that deprive individuals of the right to liberty of person by allowing for the excessive use of confinement including mandatory hospitalization, treatment and involuntary isolation. Instead of coercive and confinement approaches to TB, countries should prioritize ensuring individuals have access to fully resourced community-based, rights promoting TB programs, which many individuals may understandably prefer to long-term hospitalization and have been shown to be extremely successful, including in the context of MDR-TB in resource-poor settings.
Incarceration and detention, especially in over-crowded prisons that lack the resources to meet minimal prison standards for health, safety and cleanliness, further fuels TB as such settings become TB incubators. Prisoners have been found to have TB prevalence rates up to 1,000 times the general population, due to overcrowding (including due to high incarceration and pre-trial detention rates) and inadequate provision of TB services and non-realization of determinants of health in carcereal settings. Further, laws inconsistent with human rights standards (e.g., laws criminalizing behaviors and identities such as non-adherence to TB medicine, HIV, sex work, drug use, same-sex sexual conduct) and selective enforcement of criminal laws result in high rates of imprisonment and disproportionately impact the poor and marginalized.
Legal barriers and lack of underlying determinants of health for migrants also fuel high TB rates, including exclusion from health insurance coverage, lack of provision in law guaranteeing access to health services, and for undocumented migrants, lack of legal status, which may leave migrants vulnerable to occupational risks, exploitation and discrimination. In some high-burden TB countries, discriminatory laws and inadequate labor protections for migrant workers is further compounded by social and economic inequality and stigma. These inequities and rights violations increase the risk of TB for migrants and may also impede access to TB testing and interfere with continuity of care.
To end TB by 2030, countries and the global community must meaningfully respect, protect and fulfill the right to health for all and take concerted efforts to address legal, policy and social barriers for the most vulnerable, including persons deprived of liberty and migrants. If we fail to ensure that migrants and prisoners have access to TB prevention, treatment, care and support, as well as proper nutrition, sanitation and safe, healthy working and living environments, there will be many millions more preventable TB infections and deaths, as well as millions more households facing the catastrophic costs of TB. If countries continue to allow for—and promote—practices such as mandatory and excessive hospitalization, isolation and treatment and fail to invest in rights-promoting community-based care, if we continue on the current path with such an inadequate rate of decline, then we will not end TB as a public health threat until 2182.
Your opportunity to influence what could be an important new tool to address health equity is fast approaching. Beginning on April 9, we will be launching a global consultation on a draft guide to a promising approach to addressing vast health inequities within countries, National Health Equity Strategies. We invite you to join us.
The O’Neill Institute, in partnership with Stop TB, USAIDS, and many others who have been generous in giving their time and ideas, has developed this guide as a tool to enable countries to achieve universal health coverage that is truly universal and, beyond that, to live up to the central promise of the Sustainable Development Goals: to Leave No One Behind.
Today’s health inequities mean that in countries rich and poor, people living in different neighborhoods in the same city may have life expectancies that differ by a decade, or even several decades. Such differences even among neighbors arise from a host of factors. These include different levels of access to quality health care, but extend much deeper into people’s overall life conditions, from the air they breathe (who lives in the most polluted areas?) to the water they drink (who does not have access to safe drinking water?), from the safety of their streets (who lives in neighborhoods with the greatest crime?) to the quality of their jobs (who works in the most dangerous industries)?
As we recently described in more detail, this approach to health equity is one that would both cover a full range of the determinants of health – health equity cannot be achieved otherwise – and all populations who are experiencing these inequities. The health equity strategies and specific actions to achieve them would be incorporated into national plans in the health and other sectors. Critically, the strategies would be developed in a highly participatory manner, with leadership drawn from marginalized populations, from populations suffering from these health inequities, with poorer health — and all the life consequences of poorer health.
I noted above that our partners for this initiative include Stop TB, yet the strategies would encompass all health issues, by no means limited to tuberculosis (TB). What, then, is the link to TB? The answer goes to the nature of TB – and to why, if we are truly concerned about particular health issues, a sweeping approach to health equity such as National Health Equity Strategies is a very valuable way to go.
TB is a disease of social, economic, and political marginalization. Marginalized populations suffer from TB disproportionately – in some cases dramatically so. Many indigenous peoples experience TB rates that are dozens of times higher than their non-native national counterparts; and 270 times higher in the case of Inuit people of Canada. Prisoners similarly experience vastly disproportionate high levels of TB; one study involving Mexican prisons found TB prevalence 1,000 times that of the general population. Other populations with disproportionately high levels of TB, such as migrants, urban slum dwellers, and homeless populations, are also severely marginalized and experience a range of health inequities.
There are no biological realities of these groups that increase their vulnerability to TB. Rather, their vulnerability comes from their social realities, such as overcrowded and unsanitary living conditions, poor nutrition, and lack of access to quality health care. It will take more than targeted outreach or other focused interventions to end their heightened vulnerability to TB. To address TB, these underlying conditions – and the human rights violations that contribute to them – urgently need to change.
This is not new, of course. A decade ago, the Commission on the Social Determinants of Health highlighted the centrality to our health of the totality of our lives and the social and environmental factors that affects us. And it was hardly the first to point to the importance of the social determinants of health, long understood in the field of public health.
Yet our response is deeply inadequate, though approaches such as Health in All Policies and health impact assessments are grounded in this understanding. The fifteen years of the Millennium Development Goals, for all their progress in improving global health – and from reduced maternal and child mortality to increased AIDS treatment, there were immense gains – they did little for health equity within countries. There, progress was generally limited, and entirely absent in some cases. In 2000, women in the top wealth quintile in developing countries were three times more likely (p. 2) than women in the poorest wealth quintile to deliver with the assistance of a skilled birth attendant. The same was true in 2014. And during the same period, while in upper-middle-income countries the stunting gap between children in rich and poor households generally decreased, that gap increased in many lower-income countries (p. 10).
To bring an end to these health inequities, only a deliberate, comprehensive approach will do, beginning to address not only health inequities directly, but through action on key determinants of health, participatory approaches, and accountability, undercutting marginalization itself. That is precisely the intent of National Health Equity Strategies. Join our consultation, and together, let us take on health inequity.
This post was written by Brenna Gautam and Rebecca Reingold.
In the U.S., there is a profound stigma around being homeless and negative stereotypes about people experiencing homelessness are commonplace, painting them as lazy, addicted, mentally ill and potentially dangerous. Such stigma and stereotypes frequently distract us from serious challenges faced by people who experience homelessness, such as gender-based violence.
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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.