Showing posts with label stigma. Show all posts
Showing posts with label stigma. Show all posts

Sunday, January 27, 2019

Hepatitis Stigma: Barriers To Treatment - Burden Of Disclosure

Stigma and Discrimination 
Welcome to weekend reading, its a cold Sunday here in Michigan, hope its warmer in your part of the world. Today we have an article and podcast for the people of Australia, covering the negative impact of stigma and discrimination associated with the hepatitis C virus (HCV). 

Barriers To Treatment 
Let's start with a review of an Australian study published in PLOS One over at NAM, titled: Barriers to HCV treatment access from the drug user's point of view: stigma, complex lives and damaged veins, written by Keith Alcorn. According to the PLOS One study, based on patient interviews, some participants reported they were treated poorly by health care professionals, for instance, physicians and pharmacists. An excerpt for the study; 

Finding supportive and non-judgmental care
Participants discussed their experiences of stigma and discrimination in health care settings. Examples included emergency doctors telling participants they ‘were sick of dealing with you junkies’ (male, group 3, 34 years) and pharmacists making participants wait for lengthy periods before being served, speaking to them in a poor manner and generally not observing common courtesies to customers with injecting histories. Often, discussion of stigma centred around participants’ sense that clinicians viewed them as inappropriate clients to be receiving DAA treatment, which resulted in the internalization of these messages. 
I still hide it, no matter what… I just won’t do it…um, and yeah that’s from fear of judgment I’d say but I don’t think it would have really mattered. It’s more from me… it’s the stigma within as much as the stigma without. (male, group 4, 56 years)
Read the patient-friendly article here, study here.
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New Podcast - Burden Of Disclosure

Over at Hepatitis Victoria, Judith Gorst, a practice nurse and counsellor, talks about stigma and discrimination surrounding blood-borne infections; especially when disclosing status to friends, family and health care professionals. Listen below or here: Stigma & healthcare: Should you disclose your hepatitis status?

Listen To All Podcasts
Viral Hepatitis Playlist: Hepatitis Victoria

Hepatitis Victoria - Stigma and Discrimination

Unfortunately, people knowing, or thinking, you have hepatitis B and/or hepatitis C, can mean they treat you differently to other people. This can be distressing, and contribute to internal feelings of shame or other unpleasant feelings. It can also have a real effect on your social experiences, including the services you are provided with, and the quality of those services.

We aim to give you more information about stigma and discrimination: what it means; when you have to disclose you have hepatitis B and/or C; what your rights are if someone has treated you poorly; and, issues to consider if you work with people who have hepatitis B and/or C. 

Thanks for stopping by!

Friday, January 11, 2019

Hepatitis C: What happens when the doctor blames you for your own cancer?

The Washington Post
What happens when the doctor blames you for your own cancer?
By Monica Bhargava
As a trainee at an academic medical center, I observed weekly conferences where the care plans of new cancer patients were determined by a large team of expert physicians. The words “lung cancer” — followed by “nonsmoker” — often elicited murmurs of sympathy. I wondered whether this sympathy would lead to longer and more meaningful clinic visits with the patient in question, and whether the opposite would be true for the Vietnam veteran who had smoked for 40 years. The tight link between tobacco and lung cancer has hardened into stigma, and the potential for care disparities is real...
Those dealing with addiction and hepatitis C, a blood-borne virus often transmitted through sharing needles or other equipment to inject drugs, face a similar stigma. A high percentage of health-care professionals exhibit negative attitudes toward patients with substance use disorders, perceiving them as morally deficient or lacking self-control, and leading to reduced access to care...
Continue reading: 

Friday, March 2, 2018

Viral hepatitis: not just a silent killer but also a silencer

Viral hepatitis: not just a silent killer but also a silencer
BMC Blogs - 01 March 2018
Raquel Peck 
On Zero Discrimination Day (March 1st), the World Hepatitis Alliance (WHA) is encouraging the hepatitis community to challenge misconceptions and speak out about the devastating impact of stigma and discrimination across the globe.

Stigma and discrimination around viral hepatitis has long prevented people from speaking openly about their illnesses. For those brave enough to disclose their status, their reward, more often than not, may be social exclusion, diminished employment opportunities or unjust barriers to receiving healthcare. This harsh reality can have a devastating impact on an individual’s personal life and psychological well-being and prevent people from accessing much-needed diagnostics and treatment. There is no doubt that stigma and discrimination further perpetuate the epidemic of viral hepatitis.

We recently launched our Holding Governments Accountable: World Hepatitis Alliance Civil Society Survey Global Findings Report, which surveyed civil society organisations from 72 countries to better understand experiences of stigma and discrimination across the world. The findings confirmed and quantified what we had long suspected: stigma is felt in almost every corner of the globe (people from 93% of countries surveyed reported stigma and discrimination to some degree) and its impact is far-reaching (respondents reported on average 6 different types of stigma and discrimination).

Continue to full article:

Tuesday, May 30, 2017

QUEST TO QUASH THE STIGMA: Joshua Roberts hopes to quash the stigma surrounding hepatitis C

Joshua Roberts has lived with hepatitis C most of his life, now he's cured and wants to quash the stigma so others can get help
Rachel Baxter

Joshua Roberts is on a mission to quash the stigma surrounding hepatitis C – a virus that is slowly killing more than 200,000 Australians.

A former sufferer himself, last year Mr Roberts spoke up about his experience in an article published by the Guyra Argus.

Since then, the Guyra resident said a number of people had come forward in his community who were before suffering in silence, due to fear of being socially shunned.
Continue reading....

Tuesday, May 23, 2017

Living with Hepatitis C Virus: Misinformation appears to be the underlying cause of this stigma

Canadian Journal of Gastroenterology and Hepatology
Volume 2017 (2017), Article ID 3268650
11 pages

Review Article Living with Hepatitis C Virus: A Systematic Review and Narrative Synthesis of Qualitative Literature
Laura E. Dowsett,1,2 Stephanie Coward,1,2 Diane L. Lorenzetti,1,2,3 Gail MacKean,1,2 and Fiona Clement1,2

Received 21 November 2016; Accepted 20 March 2017; Published 26 April 2017

Background and Aims. The lived experience of HCV has not been well documented in the literature. The aim of this systematic review was to understand the experiences of living with Hepatitis C Virus (HCV). Methods. Five databases were searched from inception until January 19, 2015. Studies were included if they focused on adults diagnosed with HCV; reported experience living with HCV; and described original research. Results. 46 studies were included. Studies found that participants had reduced quality of life due to physical symptoms. Due to physical symptoms and discrimination, many participants switched to part-time work or quit their jobs. Many individuals reported negative experiences with the healthcare system; themes of feeling unsupported, not having adequate information, and not feeling involved in decisions were reported. Stigma significantly impacted those living with HCV. Conclusions. Published literature indicates that those with HCV often feel stigmatized and unsupported in their care, relationships, and work environments, while simultaneously coping with physical and psychological symptoms. This synthesis points to areas where greater education, compassion, and patient-centered healthcare could improve the experience of people living with HCV.

Discussion Only
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A sizeable body of qualitative research was found that explored people’s experiences of living with HCV, many of which included people’s experiences with the healthcare system. Although the studies included a variety of population groups, common themes emerged which focused on the varying ways in which being diagnosed with and living with HCV affected people’s quality of life. Both living with the symptoms of HCV and being diagnosed with HCV contributed to the impact that HCV had on people’s lives.

For example, the stigma associated with being diagnosed with HCV affected people’s careers, relationships, and experiences with the healthcare system, as did the physical and mental health symptoms associated with HCV (e.g., fatigue, weakness, nausea, pain, depression, and anxiety).

Study participants also described having a reduced quality of life due to HCV symptoms, such as fatigue, pain, nausea, and psychological changes. Although often seen as an asymptomatic disease, these studies found that the symptoms of HCV result in considerable disruption to daily living. Three studies investigated the impact of HCV on one’s career and found that, due to physical symptoms and discrimination, many participants switched to part-time work, quit their jobs, or changed employment sectors. Additionally, the published literature suggests that, for some, an HCV diagnosis strengthened their personal relationships, while, for others, it weakened relationships; symptoms of HCV (whether physical or emotional) and fear of transmission were the factors most cited for contributing to deteriorating relationships. These findings are important as they underscore that while no clinically relevant symptoms may be present, HCV can still substantially impact a patient’s life.

Very few of these study participants with HCV reported positive experiences with the healthcare system. Themes of not feeling supported, stigma, not being given adequate information, and not feeling involved in decision-making were frequent in the literature. Although these represent only a small sample of individuals with HCV who interact with healthcare, these finding were generally consistent across studies, and may help practitioners better recognize the specific needs of patients with HCV. Poor experiences with diagnosis and treatment highlight the need for patient-centered care, with a focus on supporting and educating patients with HCV. For example, offering HCV education sessions to newly diagnosed patients may help patients feel more supported within the healthcare system.

Stigma significantly impacted those with HCV.
Two contributing factors to HCV related stigma were consistently identified: fear of transmission and association with injection drug use or risky behaviour.

Misinformation appears to be the underlying cause of this stigma.
It is likely that education, within the healthcare system, for family and friends of individuals diagnosed with HCV, and public education may reduce the stigma associated with HCV. Knowledge about the causes of HCV, as well as transmission mechanisms and transmission patterns, may reduce the feelings of stigmatization felt by those diagnosed and, in turn, may have positive implications such as more interest in being tested for HCV, increased disclosure, and improved quality of life.

At the time of diagnosis, individuals can experience feelings of distress, shame, unconcern, and relief. While most experience a feeling of shock, those who are current drug users are often not surprised and see diagnosis as inevitable. Awareness of these poor experiences with diagnosis may help illuminate areas where diagnosis communication can be improved; confusion, inadequate information, diagnosis over a phone, and diagnosis in an institutional setting all lead to feelings of dissatisfaction among those with HCV. These findings should be taken into account when considering how, where, and by whom HCV screening should be done.

Two limitations of this synthesis are as follows: non-English language studies were excluded and nearly all of the included studies were conducted in English speaking countries, with a large number being completed in Australia and the UK. Two strengths are as follows: a range of countries and a variety of populations were represented in this synthesis, and there was a lot of consistency across the studies. This means that the themes identified here are likely to be transferable to similar contexts.

Additionally, by its nature, this body of literature is difficult to synthesize; there is significant heterogeneity within the studies that have been included due to the variety of at-risk population categories, the diversity of topics explored in each paper, and the vast number of experiences captured by the included papers. Although organized by theme, this systematic review does not intend to suggest that the experiences across all populations (e.g., injection drug users and general population) are the same. However, remarkable consistency of themes across all studies does suggest that different populations may have similar experiences with HCV.

Continue reading.....

Friday, March 31, 2017

Abstract - A dirty little secret: stigma, shame and hepatitis C in the health setting

Original article
A dirty little secret: stigma, shame and hepatitis C in the health setting

Jane Megan Northrop
Correspondence to Dr Jane Megan Northrop, Adjunct Researcher, School of Health Sciences, University of Tasmania, Private Bag 135, Hobart, TAS 7001, Australia;


While recent medical innovation shows great promise in treating hepatitis C (HCV), it remains a condition associated with profound stigma. HCV is a bloodborne virus (BBV) most commonly transmitted in high-income countries by injecting drug use, and it is the stigmatising association between the two which is deeply problematic for those with HCV.

A qualitative study undertaken in 2002 found that disclosure in health settings places those with HCV in positions of pronounced vulnerability. Disclosure is a primal scene, an interface, where the stigma of HCV, replete with connotations of disease and deviance, potentially transforms those affected into shamed subjects. Standard precautions protect health workers and minimise the transmission of contagion, measures which, in theory, also mitigate the requirement of those with BBVs to unnecessarily disclose their blood status.

However, questions on pre-employment health checks, concerns that health treatments might adversely affect the liver and an ethical need to pre-emptively inform healthcare professionals undertaking exposure prone procedures are occasions when those with HCV confront the decision to disclose their blood status.

This paper employs Goffman's model of actual and virtual social identities, along with Douglas' notion of dirt and pollution, to examine the dilemmas around disclosure those with HCV negotiate within the health setting. Discriminatory responses by healthcare professionals elucidate the stigmatising potential HCV carries. The subsequent reticence by those with HCV to disclose their blood status risks less than optimum healthcare. Recent studies indicate that stigma occurring in health settings remains a perennial concern for those with HCV.

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Sunday, June 14, 2015

Senator Ian Macdonald on mission to remove hepatitis C stigma

Senator Ian Macdonald on mission to remove hepatitis C stigma

EXCLUSIVE: Conservative Queensland Senator Ian Macdonald and his nephew are on a mission to tackle the stigma around hepatitis C and help improve access to life-saving treatments.

Senator Macdonald’s nephew Ian Pengelly, 44, was born with a form of haemophilia and contracted the potentially-deadly hepatitis C virus as a young teenager from the unscreened blood-clotting factor he was given as a part of his treatment during the 1980s.

This week, with the support of his uncle, Mr Pengelly is speaking publicly about his battle with the disease for the first time, and will detail his journey in a new book to be launched by Hepatitis Australia in Parliament House on Tuesday.

Around 230,000 Australians are believed to be living with chronic hepatitis C, a blood-borne virus which affects the liver and kills around 600 people each year.

But only about one or two per cent of people with hepatitis C are currently getting any treatment because of the stigma attached to the illness and debilitating side-effects associated with traditional treatments.

Monday, June 23, 2014

Stigma Surrounding HCV and Other Barriers to Hepatitis Care

Medscape Infectious Diseases

Hepatitis C Care: Check Your Biases at the Door

International Conference on Viral Hepatitis (ICVH) 2014
Helen-Maria Lekas, PhD, Gloria J. Searson, MSW, Alyson L. Harty, RN, BSN, William Thompson
June 23, 2014

Editor's Note: During the International Conference on Viral Hepatitis, held in New York, some of the participants in a panel discussion titled "Patient Perspectives on What Providers Need to Know About Stigma and Other Barriers to Hepatitis Care"[1] convened afterwards for a discussion. During the conversation, they discussed the stigma surrounding hepatitis C and some of the barriers to diagnosis and treatment for patients. 

Living With Hepatitis C

Helen-Maria Lekas, PhD: My name is Helen-Maria Lekas. I am from Columbia University, and I am in New York at the International Conference on Viral Hepatitis. I'm here with a panel of experts, including Gloria Searson, Alyson Harty, and William Thompson. I would like to start by asking you about stigma. As patients and experts living with hepatitis C virus (HCV) infection, what do you want your providers to know about the stigma associated with the disease?

Gloria J. Searson, MSW: Stigma is horrible. I don't want to be looked at or judged, and I don't want you to bring your biases into the room with us. I just want you to treat me as a human being and take care of the problem.

Alyson Harty, RN, BSN: I agree, from both the provider and patient perspective. When I was 17 and I found out I had HCV, I didn't want to tell any of my friends. You don't want your friends knowing that you have a virus because it's often associated with other viruses that have a broad stigma against them, and there is no need. You got it -- however you got it, you got it -- let's solve the problem.

Dr. Lekas: What can providers do to ameliorate the stigma associated with HCV?

William Thompson: One thing that I find very important is the support group that I go to. We get a lot of information from the doctor and we also get a lot of information from other patients. To me, stigma is like "sticks and stones can break my bones." It doesn't really affect me. I don't think anybody can say anything to me that would make me feel bad about my condition, especially when you have conditions yourself. It's all up to the individual in how you feel about it.

Persisting Barriers to Diagnosis and Treatment

Dr. Lekas: I'm very glad to hear that you don't internalize other people's stigmatizing attitudes. If we leave stigma aside, what are some of the other barriers that patients are encountering in getting care for HCV?

Ms. Searson: Patients don't have the same care teams available to them for HCV that they did for other diseases. One of the good things about HIV was that they had funding and manpower to help deal with teaching the patient things that the doctor may not have been able to get through to the patient, or convince the patient of the urgency of something. They even had someone there to provide the education and support so that they can buy into the fact that they had the disease. There are some systemic barriers that we have to fix in healthcare in general. It is disproportionately dispensed in different areas, in different ways, and we have to make sure that people can access the same things wherever they are geographically. That's one of the largest barriers. The treatments are good, but we can't just take them without understanding them. So, who is going to provide that education is the key.

Dr. Lekas: Do you think that patients with HCV know about the new treatments coming down the pipeline?

Ms. Harty: It varies. You have your highly educated patients who know that they have HCV and who have been following the disease and the press releases, and then you have patients who were told back in the late 1990s and early 2000s that they have this problem but nothing can be done about it. There is a wide variety, and we need re-education for those patients who were turned away from care. For example, they may have been told that because they were black or obese that the treatment wouldn't work for them. We need to relink these patients back to care, as well as screen the 80% of patients who we know haven't been tested.

Ms. Searson: The campaigning and awareness are out there for those who access social media or the Internet or who watch television, but there is a whole group of people who do not access information the way it is being disseminated. If you are not in the healthcare system or working with a substance abuse group, a senior population, or a veterans' group, you still may be out of the loop for hepatitis. We need the healthcare team around patients who get HCV to understand them as a whole -- where they are and what may or may not be necessary for this particular patient to get through treatment. The pills and the medications only address one barrier, and that's the biological barrier. They don't address the personal issues or the systemic barriers, and they certainly don't address the infrastructure and lack of healthcare providers able to deal with this disease.

Improving on the HIV Model for Hepatitis C

Dr. Lekas: Would you propose a team-based approach for hepatitis C, like that for HIV, with a provider, a medical physician, and a nurse?

Ms. Harty: We need a lot more funding for that. Personally, working in a private office, I know that we don't have the funds to hire a psychiatrist. I am the social worker, psychiatrist, and nurse -- all of the above. It takes a lot of manpower to put people through this therapy, and the providers also need more support from the states and the private insurers who don't pay for psychological therapy unless the patient has Medicaid and can access a therapist. It is very hard for privately insured people to get the psychological therapy that they need.

Dr. Lekas: Do you think the HIV model is a good one?

Ms. Harty: Definitely.

Ms. Searson: Yes, especially because this is a complicated thing to explain, and you want to have people you can trust, like we have with case managers in HIV. But here is one thing I would like to see be different from the HIV model: We did not bring the case managers along in the science, so they were not able to offer the support to patients around understanding the disease and the importance of medication, because they were left out of the education. If you create a team, then all of them have to have the necessary information. In HIV, that is where we made some missteps; we kept the science separated from the prevention and services, and there was no interaction. The patient was better known by the people who knew the least about the disease itself and the benefits of treatment. Without that knowledge, how could those who have the confidence of the patient convince the patient of the importance of being treated? That is why we have people who are still not detectable, as well as the continuing struggles of being on multiple regimens, because the patients didn't get buy-in from the people that they trust.

Mr. Thompson: At the facility that I go to, Mount Sinai, the doctors work as a team. They all discuss the patient and reach a conclusion about where they are going with the patient and what their expected results are. They are very informative. I didn't know that I had stage 4 cirrhosis or that it could be stabilized. To me, stage 4 meant I was going to continue to decline. I didn't know that the liver repairs itself, and that with the elimination of the HCV infection the liver can regroup and reverse, to a point -- it's not going to be a completely healthy liver again. But I learned all of this from the doctors and the team where I get care. How well the doctors work together depends on the facility that you go to.

Dr. Lekas: With the massive restructuring of our healthcare system, this is a good note to end on. How HCV treatment will be integrated into this restructuring is an important issue.

Thank you all.

Source - Medscape

Friday, January 17, 2014

Treatment of Chronic Hepatitis C Virus Infection: Some Remaining Obstacles in the United States

Treatment of Chronic Hepatitis C Virus Infection: Some Remaining Obstacles in the United States

Liver International
Accepted Articles, Accepted manuscript online: 13 JAN 2014

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Accepted Article (Accepted, unedited articles published online and citable. The final edited and typeset version of record will appear in future.)

Review Article

Gloria Searson1, Ellen S. Engelson2,  Damaris Carriero1,3, Donald P. Kotler1,2,*
DOI: 10.1111/liv.12467

This article is protected by copyright. All rights reserved.

Publication History
Accepted manuscript online: 13 JAN 2014 01:05AM EST
Manuscript Accepted: 6 JAN 2014
Manuscript Revised: 25 DEC 2013
Manuscript Received: 27 JUN 2013

Keywords: effectiveness research;  health disparities;  substance abuse; alcoholism;  chronic liver disease

Hepatitis C infection is an important problem in inner city neighborhoods, which suffer from multiple health disparities. Important factors in this population include alcoholism and substance abuse, mental illness, and homelessness, which may be combined with mistrust, poor health literacy, limited access to health care, and outright discrimination. Systemic barriers to effective care include a lack of capacity to provide comprehensive care, insufficient insurance coverage, poor coordination among caregivers and between caregivers and hospitals, as well as third party payers. These barriers affect real world treatment effectiveness as opposed to treatment efficacy, the latter reflecting the world of clinical trials. The components of effectiveness include efficacious medications, appropriate diagnosis and evaluation, recommendation for therapy, access to therapy, acceptance of the diagnosis and its implications by the patient and adherence to the recommended therapy. Very little attention has been given to assisting the patient to accept the diagnosis and adhere to therapy, i.e., care coordination. For this reason, care coordination is an area in which greater availability could lead to greater acceptance/adherence and greater treatment effectiveness

These are exciting times in the field of Hepatitis C virus (HCV) infection. After many years of ominous predictions, the outlook fo r HCV-infected patients has im proved substantially with the introduction of direct acting agents (1, 2). However, it is too soon to declare victory. It has even been said that we are only ‘at the end of the beginning’ of the struggle (3). There are several remaining obstacles. The purpose of this paper is to enumerate and discuss some of the remaining barriers to effective HCV treatment in the United States, predominantly from an inner city perspective.

The medical and economic burdens of HCV have been increasing for the past 3 decades (4, 5), and will continue to rise for the next 15 years. The burden of managing HCV-infected patients will fall increasingly on public institutions, i.e., inner city hospitals, clinics and community health centers, and the costs will shift progressively to public payers, such as Medicaid and Medicare (5). Official estimates of disease prevalence in the United States range from around 4 million (6) to as high at 7 million (7 ). The largest subgroup, comprising almost 80%, was born between 1945 and 1965 (8). Other cohorts of HCV-infected individuals exist, including immigrants, patients with sexually transmitted HCV infection, plus other routes of transmission, including nosocomial. A majority are unaware of their HCV serostatus (9).

There are multiple obstacles to access of effective antiviral therapy in all countries, with variations within and between them for different subgroups of patients. The barriers can be classified as virologic, host, and systemic. Virologic factors will not be considered here. Host factors may be modifiable or non-modifiable. In addition to age, sex and HIV co-infection, genetic factors exist, such as the IL28B polym orphism, which partially explain the observed racial variation in treatment re sponse (15). While hepatitis C has its highest prevalence in a cohort defined by birth year, it is an especially important problem in African-American communities. The authors’ institutions treat residents of Harlem and surrounding neighborhoods in New York City, which have high prevalence rates for HCV infection and other co-morbidities (10). Similar conditions exist in many inner-city environments in the US.

It is not appropriate to discuss HCV infection in African-Americans without noting the presence of health disparities in general. In a recent publication, Williams and colleagues noted that overall death rates in African-Americans are 30% higher than in Caucasians (11), with higher death rates for 10 of the 15 leading causes of death, though not for liver cirrhosis. Health disparities also exist in HCV infection, in terms of higher prevalence (6) and poorer response to therapy (12). Despite these facts, African-Americans have long been under-represented in clinical trials (13). To identify and reduce such disparity, the FDA Safety and Innovation Act, recently passed by Congress, requires the FDA to report annually on the inclusion of subjects by age, sex, race, and ethnicity in clinical trials supporting applications of new drugs and medical devices (14).

Important host factors that are potentially modifiable include substance abuse, mental illness, and homelessness. A co-morbidity that ha s received very little attention is alcoholism. Alcohol accelerates hepatic fibrosis in mono- and co-infected patients with HCV infection (16, 17). A prospective, case-control study published in 1999, of chronic viral hepatitis, alcoholism, and the development of chronic liver disease at Harlem Hospital Center (18) showed that the combination of HCV infection and heavy alcohol intake, but not HCV infection or alcoholism alone, significantly promoted the development of chronic liver disease. The cohort was followed for four years and death rates were numerically higher in the HCV plus alcohol group. The authors called for greater attention to the management of alcoholism to mitigate the development of chronic liver disease, even in the absence of effective anti-HCV therapy at the time. In a review of HCV-infected patients followed over a 15-year period in clinics in Scotland, the fraction of cirrhosis attributable to heavy alcohol intake was estimated at 36%, and at 61% for heavy drinkers (19). Importantly, since active alcoholism is an absolute contraindication to anti- HCV therapy, the subgroup at most risk of disease progression often is excluded from treatment. Recent studies from Switzerland and France have demonstrated reasonable rates of sustained viral response in alcohol-dependent patients (20,21). Poorer responses to anti-HCV therapy in the US VA system were felt to be related more to poorer treatment adherence than a direct effect of alcohol intake (22). Maintaining adherence to treatment may be as important or even a more important goal than enforcing abstinence. A study to test this hypothesis would be one comparing the effects of abstinence and harm reduction. However, while determining the relative importance of HCV and of alcohol intake, including amount, drinking pattern, and chronicity, in liver disease progression is of interest, the ultimate goal of therapy should be to cure both conditions. Other host factors may affect treatment adherence, however. Simoni and colleagues analyzed 13 studies in HIV infection that used electronic drug monitoring. Demographic variables such as sex, age, economic status, education level, plus depression and substance abuse, did not fully explain a lower level of adherence observed in African-American subjects (23). The authors cited evidence that mistrust , poor health literacy, in equalities in access to health care, as well as outright discrimination might be responsible for the differences. Patient mistrust acts synergistically with nihilism and stigmatization to confound attempts at therapy. Patients whose clinical problems are related to socially unacceptably behaviors may be especially prone to feeling stigmatized, while caregivers may unconsciously express bias. Cultural competence, which involves developing attitudes, behaviors, and policies that enable effective work in cross-cultural situations, are routine medical education and core competency initiatives, but have not overcome the prevailing host barriers.

The host barriers to effective treatment may become institutionalized so that caregivers do not aggressively promote and patients do not aggressively seek proven therapies. These biases may be resistant to change.

A substantial proportion of patients currently presenting for HCV testing are aware of their HCV status or of the presence of liver disease (G. Searson, personal observations). In many cases, patients had been told by a health care provider one, two, or three decades ago that they were going to be OK or that their liver tests were relatively normal and not to worry, and now are being told that they have a serious disease. It is especially difficult for the medical establishment to engage patients who exist outside the formal health care system. The Affordable Care Act may be helpful in expanding coverage to some people, but it will not aid people who harbor a fundamental mistrust in the health care system. Community-based organizations may be helpful in this situation; fostering trust by helping people to feel at ease through non-judgmental treatment; creating an environment where people may be more truthful about personal matters: self-worth, future prospects, or even existential concerns.

Systemic barriers to effective care are multiple and diverse. Perhaps the most important is the lack of capacity of our system to provide comprehensive care to our patients. Mental health issues especially often are unrecognized, overlooked, or undertreated. In HIV infection, Ryan White funding allowed the development of a comprehensive care model, with resources devoted to social work needs, including food and shelter, as well as mental health needs. Such support is not available for HCV-infected patients.

Lack of insurance, or insufficient insurance coverage, is common among HCV-infected patients (24). Poor coordination between caregivers and hospitals and between caregivers and third party payers may lead to unanticipated treatment interruptions. Few institutions have a centralized system for toxicity management, relying on standard emergency services. However, a visit to an Emergency Department or a hospital admission is likely to lead to treatment interruption for a patient irrespective of the presenting complaint. Few hospitals have direct- acting anti-HCV agents on formulary and the patient is “supposed to” bring his/her outpatient medications to the hospital, which may not occur in the face of an emergency.

There are two ways to evaluate treatment success: efficacy and effectiveness. Most discussions are centered on the notion of treatment efficacy, which can be defined as the number cured/number treated, and which reflects the world of clinical trials. Inclusion and exclusion criteria minimize the host factors interfering with therapy while the study design and pharmaceutical support minimize the systemic obstacles to therapy. A more accurate measure of treatment success from a public health standpoint is treatment effectiveness, which can be defined as the number cured/number infected. Its importance is seen in the example of alcoholism.

As discussed above , alcoholism increases the risk for developing chronic liver disease, but is a contraindication for therapy, including inclusion in clinical trials. For this reason, alcoholism does not affect measured treatment efficacy though it markedly reduces treatment effectiveness, as might be measured by the prevention of chronic liver disease. Measured rates of effectiveness for pegylated interferon and ribavirin averaged 3.5% in clinical experience (25, 26), while the effectiveness in the registration trials ranged from 12-17%, and efficacy in the same trials aver aged around 45% (discussed in 25).

Recent and emerging advances in therapy will allow the role of new regimens on treatment effectiveness to be determined, especially the application of interferon-free regimens. Treatment efficacy for genotype 1, treatment-naïve patients in clinical trials averaged 40-50%, using pegylated interferon and ribavirin (27), compared to around 75% in trials also using a directing agent (1). However, real world results in an inner city population in New York City showed an efficacy of 14% in genotype 1 patient s. In addition, a recent presentation showed an SVR rate of 43% using a direct acting agent in a similar patient group (28). Treatment effectiveness, including cost effectiveness will require closing the gap between clinical trials and real world results. Depending on the specific community, net effectiveness also may require improvements in the prevention of risk behaviors, which may lead to reinfection after SVR (29). Furthermore, improvements in efficacy are irrelevant for a patient who remains unengaged with the formal health care system.

One can divide treatment effectiveness into several components (30). Effective therapy includes the availability of efficacious medications as well as a system to evaluate patients appropriately, recommend therapy, provide access to therapy, as well as patient compliance with the evaluation and recommendations as well as adherence to therapy. Developing efficacious medications is the task of the pharmaceutical industry, while making diagnoses and treatment recommendations plus providing access to therapy are tasks for the health care system. Accepting the diagnosis and adhering to therapy is the job of the patient and patient advocates. While great effort has gone into developing efficacious therapies and an increasing amount of attention is being given to screening, diagnosis, and evaluation, less attention has been placed on treatment access and very little attention has been given to assisting the patient to accept the diagnosis and adhere to therapy, i.e., care coordination. For this reason, care coordination is an area in which greater availability, supported by a currently nonexistent funding source, could lead to greater acceptance/adherence, and greater treatment effectiveness. The elements of care coordination, which include individual counseling, education, behavioral modification, and other support, are the same for the management of many diseases.

In summary, if we can overcome the obstacles to care delineated above, then treatment effectiveness will equal efficacy.


Wednesday, November 6, 2013

Hepatitis C, stigma and cure

Hepatitis C, stigma and cure 
Hello Folks,
Being diagnosed with hepatitis C is overwhelming enough, the negative stigma associated with the disease is nothing short of debilitating. Sadly, our culture is a culture of blame, particularly surrounding drug use, the biggest stigma linked to the virus.

Additional psychological distress caused by living with a stigmatized disease can get in the way of initial HCV testing, an important first step toward ensuring optimal care to avoid possible liver damage. Only after knowing your hepatitis C status can steps be taken to seek out life-saving treatments.

Hepatitis C, stigma and cure

Recently, an article titled "Hepatitis C, stigma and cure" published in the October issue of  World J Gastroenterol, looked at the social stigma attached to HCV, consequences of living with the chronic infection, and new drugs to treat the virus.
The global hepatitis C epidemic is estimated to include 130–170 million people worldwide. In the United States an estimated 2.7–3.9 million people are living with the virus, more than 2 million of these people are baby boomers, with around 75 percent unaware they are infected - because they haven't been tested. In a year, 80,000 new infections will occur and close to 15,000 Americans will die from the disease.
New Drugs
The disease is curable, especially with so many new drugs making their way to FDA approval. I assume that if you're reading this post then you probably already know recently the Antiviral Drugs Advisory Committee reviewed two new agents.
Gilead's Sofosbuvir, a nucleotide analog NS5B polymerase inhibitor was reviewed on October 25 and Johnson & Johnson's Simeprevir a protease inhibitor on October 24. The committee recommend the approval of Simeprevir, in combination with pegylated interferon and ribavirin for the treatment of adult genotype 1 patients with compensated liver disease, including cirrhosis. As for sofosbuvir, the panel voted unanimously in support of approving the drug in combination with just ribavirin for treating adult HCV genotypes 2/3 and in combination with pegylated interferon/ribavirin for genotype 1 and 4 treatment-naive patients. For detailed information please download the FDA review package for sofosbuvir and simeprevir.
The FDA does not have to follow the advice of its panels, but most often will. The U.S. health regulators are scheduled to decide whether to approve sofosbuvir by Dec. 8, and simeprevir by Nov. 27.
With interferon-free therapies so close to FDA approval and so many in clinical trials the promise of treating hepatitis C without interferon is becoming a reality. According to new data from this months AASLD meeting in Washington, new agents have been shown in clinical trials to shorten treatment duration, lower toxicity and improve efficacy.
Interferon-Free Genotype 1
This week published online in "The Lancet" researchers suggest that the fixed-dose combination of sofosbuvir-ledipasvir alone or with ribavirin has the potential to cure most patients with genotype-1 HCV including those with compensated cirrhosis or who have previously failed treatment with protease inhibitors.
The Links 
AASLD - Updates
Check Out - Interferon Free Combinations
AASLD Website
Browse Abstracts

AASLD Coverage
Commentary/Abstracts/Videos @ Healio
Capsule Summaries, review by experts and slides @ Clinical Care Options CCO
CME/CE with commentary by Michael Smith @ MedPage Today
Commentary/Abstracts with coverage by Liz Highleyman @
Slides/Abstracts @ NATAP