Surviving Hepatitis C in AZ Jails, State Prisons, and Federal Detention Centers.

Surviving Hepatitis C in AZ Jails, State Prisons, and Federal Detention Centers.
The "Hard Time" blogspot is a volunteer-run site for the political organization of people with Hepatitis C behind and beyond prison walls, their loved ones, and whomever cares to join us. We are neither legal nor medical professionals. Some of us may organize for support, but this site is primarily dedicated to education and activism; we are fighting for prevention, detection, treatment, and a cure for Hepatitis C, particularly down in the trenches where most people are dying - in prison or on the street... Join us.

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Wednesday, May 26, 2010

World Hepatitis Day: Pushing Harm Reduction

Few of you know that I've had a family crisis of late, and thus I haven't posted or even begun to write about last week's candlelight vigil at the AZ Department of Corrections. I've been kind of homeless since that night, living out of a storage unit and hotel room with my brother; before we run out of money we're heading off to camp along the Mogollion Rim. 

I'll try to write and post on May 19 before then ( here's some photos, at least) - I know that timing is important but this is just a blog and I'm only human. Besides, content matters, too, and the event really deserves better focus than I can give it under the conditions. Actually, I'm recovering from an assault perpetrated by an intoxicated friend. There are quire a few things going on, really - life is so complicated, is it not?


Here's my awesome display, by the way - it's got all sorts of Spanish language literature and promotes harm reduction. I was counting on our friens across the street coming over.





What I can say about the vigil at this point though, is that I was a lot more open to what a gathering of resistance at the ADC could be like this time, and amazed at what actually happened. People started telling their stories after Julie told hers. Somehow she just manages to mke those connections.

There were blessings exchanged between our usual suspects and the Indigenous and Latino groups who came over to join our protest, people embracing each other across language and cultural differences and connecting on a common understanding of what constitutes human rights - which includes medical treatment for prisoners. There was even sage and incense - we were both blessed ad smudged.

We gave them some literature (I had some printed up in Spanish) and expressed our solidarity with their cause (Repeal ALL that hateful AZ legislation). A good number of the folks who joined us are the hard core activists who have been keeping the 24/7 vigil at the capitol for the group.


The great thing about that whole night was that my big brother was narrating and interviewing people through the crowd over the course of the evening. Even when I'm in heated protest and he's my cameraman, he's busy looking for the light in people, catching them smile the moment they realize how good it felt to do the right thing - like drop me a few quarters when I was panhandling. I expected pictures of the people who turned their heads that day in irritation - Bill gives me the ones full of grace or love. 

I need to figure out how to edit the tape from Hepatitis Day for you so you can see it yourselves, and hear these stories... 


Anyway, once I saw it through my brother's eyes, I knew what magic had happened that night.That's what this vigil was all about - showing our ability to be there for each other, letting other folks with Hep C, families of prisoners, and potential victims of the state know that others are out here, care about what's happening, and that we're in it for the long haul - even if they're unable to be public. 

 
I guess enough said on that for now. We prayed and laughed and hugged and cried. And we simmered. Here's the more coherent press releases from SF and DC about what they did.

- Peg 



A welcome home hug from Julie.

















-------------------------------------------------from www.hivandhepatitis.com---------------------------------

Advocates Rally in San Francisco and Washington to Raise Awareness and Demand Funding for Hepatitis B and C

SUMMARY: Hepatitis advocates gathered in San Francisco and Washington, DC, on May 19 -- World Hepatitis Day -- to bring attention to chronic hepatitis B and C and to call for increased funding for public education, testing, treatment, and care. Speakers described their experiences with stigma, difficulty accessing treatment, and side effects and suboptimal effectiveness of current hepatitis C therapies, while expressing hope for new directing-acting HCV drugs that are expected to start becoming available in the next couple years.

By Liz Highleyman


Nick Panagopoulos (at podium) presents mayoral proclamation recognizing World Hepatitis Day to SF Hepatitis C Task Force co-chairs Randy Allgaier (left of podium) and Dominique Leslie.
(Photo: Liz Highleyman)
"We're here to give a voice and a face to a disease that remains in the shadows," said Randy Allgaier, co-chair of the [San Francisco Hepatitis C Task Force[http://www.hepcsf.org], speaking from the steps of City Hall. "San Francisco must move out of the shadows of this silent epidemic, because as we learned with HIV, silence equals death."

The local rally brought out about 50 activists under an unseasonable light rain.

Nick Panagopoulos from the office of Mayor Gavin Newsom -- who spearheaded the creation of the task force -- and Alex Randolph, aide to Supervisor Bevan Dufty, both presented proclamations recognizing World Hepatitis Day.

While the rally focused on hepatitis C, Allgaier applauded the new Hep B Free campaign which aims to raise awareness among the city's large Asian community, a group at especially high risk for hepatitis B.

Task force co-chair Dominique Leslie related her journey with hepatitis C, reflecting issues faced by many people with the disease. Leslie was diagnosed with non-A/non-B hepatitis in 1988, the year before the hepatitis C virus (HCV) was discovered. At the time, she was told not to worry and that she didn't need to do anything. By 2000, she began to develop symptoms of liver disease, but was told they were not due to HCV. Since then, she said she has been denied treatment twice because she is transgender, and she is now on the liver transplant waiting list.

"I joined the task force so other people don't have to go through what I face," she said. "I've been clean and sober for more than 20 years, but active drug users are being denied treatment and access to clinical trials."

Other speakers represented the diverse face of hepatitis C. Todd is an HIV positive former methamphetamine user who never used needles and believes he got HCV through sex. Today he is clean and sober, and both his HIV and HCV are undetectable, but "it was no picnic getting there," he said. 

Robin, an older woman who was diagnosed with hepatitis C years ago, has been free of the virus for 8 years with the help of holistic therapy including acupuncture. "HCV is the first virus for which we have a cure, but unfortunately the treatments are very difficult and they don't work for everyone," she said.

Jack and Havoc are 2 young men involved with UCSF's UFO Project for young injection drug users. Jack started interferon, but lasted only 3 months due to side effects; against all odds, however, he managed to clear HCV anyway. But Havoc, a member of San Francisco's new Drug Users Union, lacks permanent housing, has not been able to get on interferon treatment, and his liver disease is progressing.

Finally, Karen Aziz compared her experiences as a woman dually diagnosed with hepatitis C and breast cancer. When she learned she had breast cancer, she recalled, she was told about all the available treatment options and referred to a support group. 

"Companies sponsor walks for research, you see uplifting commercials, patients are lauded as heroes, and everyone shows compassion," she said. "It's quite the opposite for hepatitis C. "No company wants to sponsor a race for the cure for this disease. Our struggles are secret, silent, and lonely. We need funding for full medical care for everyone who needs it so a diagnosis of hepatitis C need not be a death sentence."





Below is a press release from the National Viral Hepatitis Roundtable about the Washington rally.
On World Hepatitis Day 2010, NVHR Capitol Hill Rally Attracts
Hundreds of Americans & Five Members of Congress to
Support Increased Federal Funding for Viral Hepatitis

Washington, DC -- May 19 -- Surrounded by a diverse group of 500 Americans from the viral hepatitis B and C communities united in common purpose on World Hepatitis Day 2010, the National Viral Hepatitis Roundtable (NVHR) today hosted a Capitol Hill rally urging swift action to fix the federal funding crisis for 5 million Americans afflicted with chronic viral hepatitis. With the support of a boisterous crowd, NVHR was joined by five Members of Congress, Congressmen Hank Johnson (D-Ga.), Mike Honda (D-Calif.), Charles Dent (R-Pa.), Anh "Joseph" Cao (R-La.), and Mike Cassidy, M.D. (R-La.), whom all pledged to make the promise of increased federal funding a reality this year and to address the viral hepatitis funding problem once and for all.

"NVHR has a simple and direct message for Washington: we are not going away and we will no longer be ignored. Until Congress and the Administration act once and for all to fix the funding crisis, we will be unrelenting in demanding adequate federal funding for viral hepatitis screening, education, and intervention programs for 5 million Americans," vowed Ms. Lorren Sandt, NVHR Chair and Executive Director of Caring Ambassadors Program, based in Portland, OR. "In the absence of federal leadership, the annual costs of viral hepatitis to Medicare and Medicaid could reach $85 billion in the coming decade. Swift federal action now will help millions of Americans and help mitigate an otherwise inevitable fiscal disaster. The time for action is now. Our community and our nation cannot afford any more delays."

Today's rally featured 500 Americans from all walks of life united in their cause to urge Washington to act. Representing 11 states and the District of Columbia, the rally featured speakers representing NVHR, the National Alliance of State and Territorial AIDS Directors, the District of Columbia Department of Health, Veterans Aimed towards Awareness, the Association of Asian Pacific Community Health Organizations, Community AIDS National Network, Hepatitis B Foundation, Greater Washington Viral Hepatitis Support Group, Harm Reduction Coalition, North General Hospital, Hepatitis Education Program, Chinese American Medical Society, Hepatitis B Initiative-DC, National AIDS Treatment Advocacy Project, Hepatitis C Support Project, Hepatitis C Association, and many others. The rally also featured a Silent Vigil in tribute to those individuals lost to hepatitis B or C.

Approximately 1 in 50 Americans are afflicted with chronic viral hepatitis B or C -- with most unaware they are infected, especially African Americans and Asian Americans. Without detection and treatment, chronic viral hepatitis leads to liver cancer, cirrhosis, or liver failure. In the absence of federal leadership, the research firm Milliman estimates that public and private payers' cost of treating chronic viral hepatitis C alone will more than triple by 2024 to $85 billion annually. Medicare and Medicaid would absorb a disproportionate share of these added costs.

Earlier this year, the Institute of Medicine (IOM) released a landmark report blasting the federal government for its inadequate response to this crisis. Since the January 2010 release of the IOM report, the Administration has done little to help assuage the viral hepatitis community. The Administration's budget proposal for 2011 would fund the Division of Viral Hepatitis at a level actually lower than allocated a decade ago during the Clinton Administration.

Bipartisan legislation, HR 3974, "The Viral Hepatitis and Liver Cancer Control and Prevention Act," sponsored by Representatives Mike Honda (D-Calif.), Charles Dent (R-Pa.) and 36 other House Members would correct this shortfall. The Honda-Dent legislation would increase the ability of the CDC to support state health departments in their prevention, immunization and surveillance, and referral to care efforts. Much of the Honda-Dent legislation tracks with the IoM's recommendations.

NVHR is a coalition of more than 150 public, private, and voluntary organizations dedicated to reducing the incidence of infection, morbidity, and mortality from chronic viral hepatitis that afflicts more than 5 million Americans. For more information, visit www.nvhr.org.

5/21/10

Source

National Viral Hepatitis Roundtable. On World Hepatitis Day 2010, NVHR Capitol Hill Rally Attracts Hundreds of Americans & Five Members of Congress To Support Increased Federal Funding for Viral Hepatitis. Press release. May 19, 2010.

Sunday, May 23, 2010

Sneaking up on the Boomers.

This was apparently a response to the Institute of Medicine report we posted about earlier - with a special focus on the generation now at greatest risk for complications of hep C...

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The Hepatitis C Generation

Thanks to a disease that lays dormant for up to 30 years, Baby Boomers well past their wild years are starting to suffer the consequences. 
 
Jan 11, 2010 | Updated: 11:04 a.m. ET Jan 11, 2010

When Alan Franciscus was diagnosed with hepatitis C in 1996, his first question was, "Am I going to die?" When his doctor assured him that many treatment options were available, he had a second question: "What is hepatitis C?" Looking back,  Franciscus, a 61 year-old San Francisco resident says: "One of the most disturbing things to me was I had never heard of it. I really did not know a thing about it."

Franciscus' question, it turns out, is not such a bizarre one to ask. Despite affecting 1 percent of the population, hepatitis C remains a disease generally misunderstood by the general public with little in financial commitments from the federal government. The CDC's National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and Tuberculosis Prevention had a budget of almost $1 billion for 2008. Only 2 percent of that was allocated to hepatitis B and hepatitis C despite both viruses being five times more prevalent. "No one really knew what hepatitis C was," Franciscus remembers. "A bunch of coworkers thought I got it from eating bad food."

A newly-published Institute of Medicine Report on hepatitis B and C, published today, underscores how this lack of understanding and attention has played out. Although the risk factors for hepatitis C are widely known and completely preventable, the IOM estimates that between 2.7 million and 3.9 million Americans have contracted hepatitis C.

But the most startling detail about hepatitis C may not be its prevalence, but the population it affects. Two-thirds of those with the virus are Baby Boomers, adults in their 50s or 60s who may have experimented with intravenous drugs decades ago. For many of them, the Summer of Love is a hazy, distant memory from their youth. But hepatitis C, which is transferred by contact with infected blood, has a particularly long incubation period, often 20 or 30 years. That means that the side effects of one drug use in the 1970s could now start to show. "Even though Boomers moved on with their lives, they could be living with an infection that happened many years ago," says John W. Ward, division director for the Center for Disease Control's Division of Viral Hepatitis. "Now, they're aging into a period of their lives when Hepatitis C could become manifest through physical symptoms." One study published last May estimates that, in the next 20 years, total medical costs for Hepatitis C patients will nearly triple, from $30 to $85 billion. 

Hepatitis C is a serious challenge for both doctors and public health officials, largely because of its long incubation period. An individual infected with hepatitis C can live the majority of their life not knowing they were infected. In fact, the new IOM report suggests this is usually the case: 75 percent of those with hepatitis C don't even know they have it. And unlike other forms of the hepatitis virus, like A and B, there is no known vaccine. So the virus continues to be transmitted through exposure to infected blood, often injection drug use. Boomers may have also become infected by a blood transfusion or organ transplant before 1992, when officials began screening the blood supply for the disease.

Of those infected with the virus, about 60-70 percent will develop chronic liver disease. For about 40 percent, a months-long regimen of shots and pills will eradicate the virus. But many will continue to live with the disease as a chronic condition; 1 to 5 percent will die of the consequences of liver disease. Some expect to see these conditions become significantly more prevalent as Boomers' cases move from virus to disease. One study, a Milliman Report published in May 2009, predicted that the number of patients with advanced liver disease will be four times greater than it is today by 2029. Cases of cirrhosis, scaring of the liver, will also quadruple. 

This means that right now, before that wave hits, is a particularly critical juncture for early detection and treatment of hepatitis C, particularly among the Boomer population. "There's a window of opportunity to identify the disease early," says Ward. Hepatitis C is usually diagnosed with a simple blood test and patients found positive have a number of options in disease management. They can monitor levels of certain liver enzymes, charting any advancement in liver disease, and make lifestyle adjustments to manage the disease such as eliminating alcohol.

So, if the test is so easy, and the risk largely pooled in a specific demographic, why do so many cases go decades undiagnosed? Doctors say it has a lot do with the stigma surrounding liver disease. "If Uncle Bernie says he has cirrhosis, it's like, 'well how much was he drinking?' says Allan Wolkoff, chairman of the American Liver Society and a professor at the Albert Einstein School of Medicine in New York City. "We need to work on that. Good people get liver disease; kids get liver disease. You can get liver disease through little or no fault of your own." In a study of patients in a liver clinic in Iowa, 57 percent of Hepatitis C-positive people reported having experienced stigma associated with their infection. Given that, it's easy to see why well-to-do Boomers rarely get tested for a disease often associated with junkies and alcoholics: neither they, nor their doctors, think to even ask.

Both the IOM and CDC want to change that. The IOM report recommends a comprehensive public education and surveillance campaign, as to increase awareness of the disease, following in the model of HIV/AIDs public awareness campaigns in the 1990s. "As in the case of HIV/AIDS," the report concludes, "increasing general public knowledge about hepatitis B and hepatitis C can be expected to reduce discrimination toward infected people, reduce transmission, and increase early diagnosis and treatment that ultimately save lives." A lot of this, says Wolkoff, hinges on doctors: "there's a certain amount of physician education necessary. Even a small rise in physicians talking about this, talking about it with their patients, could make a big difference.


The CDC may also play a role, particularly in the testing of Boomers. Right now, the organization recommends that anyone who ever tried injected illegal drugs or had a blood donation prior to 1992 be tested. But patients may make compliance with such a regulation difficult—they may not, for example, volunteer information about that one time at Woodstock—the CDC is considering a blanket, age-based screening recommendation. "We're launching studies to see if it's feasible and makes sense," says Ward, the CDC official. "Just like everyone over 50 should have a check for colon cancer, it might fit into an age-based checklist of preventative services."

Franciscus did not know much about hepatitis C when he was diagnosed. But he quickly learned one thing: there was not nearly enough information available to patients like him. So he founded the HCV Advocate, a newsletter that now gets 400,000 visits online each month and is his new, full-time job. He regularly speaks across the country, to health providers and educators, on the subject. "The key is going to be public awareness and educating medical providers, to ask questions and get people tested," says Franciscus. "If you catch it early, nobody will die from Hepatitis C." 

 Find this article at http://www.newsweek.com/id/230061

Down Under: Working with what you've got.

And the Australians, again. I think we have a lot to learn from them. This is from the Hepatitis Australia website, http://www.hepedu.org.au/  which is designed specifically with health care professionals in mind.
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Considerations for working with people in custodial settings

Set realistic goals in education about safe injecting practices

While people in custodial settings are in principle entitled to the same level of health care and information as the general community, in practice they are unable to adequately protect their own health due to the current constraints of the prison environment. Research indicates that the prevalence of injecting drug use in custodial settings is very high. In the general community around one percent of people inject, while in custody approximately 25% of inmates continue to inject in extremely hazardous circumstances. Prison inmates have limited access to the means of preventing hepatitis C transmission. Needle and Syringe Programs (NSPs) have not been implemented in any Australian prison. Other harm reduction measures such as peer based drug education and bleach provision are available in some jurisdictions but not all. Therefore, it is unrealistic for educators to provide detailed instruction to inmates on safe injecting practices when there are limited provisions to ensure inmates have the opportunity to implement safe practice.

Due to the fact that safe injecting practices are nearly impossible to achieve in custodial settings, alternative methods of administration should be explored such as smoking, snorting, swallowing or shafting (rectal administration). However, another deterrent to effective harm reduction strategies is the discrepancy in the type of sanctions imposed for injected as opposed to non-injected illicit drug use in custodial settings. It has been suggested that the efficacy in detecting cannabis as opposed to heroin may cause some inmates to switch to injecting routes of drug administration. 

There are some provisions to encourage safe injecting in custodial settings such as the provision of bleach and instructions about washing syringes with soapy water.

Inmates with hepatitis C also need to be provided with information on the risks associated with unsafe injecting practices and the potential for re-infection with different hepatitis C genotypes.

Evidence suggests that people with hepatitis C who are exposed to potential infectious blood can be infected with more than one genotype at a time, which can impact on the natural history of disease progression and treatment efficacy.

Considering the barriers in custodial settings, it is important that inmates are provided with information on safe injecting in the context of access to NSPs in the post release setting.

Set realistic goals in education about health maintenance

Educators need to be aware of the relevance and applicability of information provided to inmates on health maintenance activities, for example, healthy diet, exercise and managing stress. Inmates will have limited control over the food they eat and therefore, need to be provided with information that allows them to make healthy choices from the available food. Discussions about regular exercise and stress management need to be adapted to the context of custodial settings and could provide inmates with useful and tangible health maintenance advice. For example, developing an exercise program that accounts for limited space such as the inmate’s cell or at the gym could be useful.

Education programs need to be tailored to the custodial setting and take into account the resources that are available to inmates. However, people living in custodial settings still need to be equipped with relevant health maintenance information for their return into the community.

Provide practical advice about infection control principles

Tattooing and body piercing pose a particular problem in custodial settings where these procedures are often performed by untrained operators without access to sterile equipment. In addition, other potential sources of blood to blood contact include using blunt hair clippers, sharing razors injury, self harm, fighting and physical and sexual assaults. Spread of hepatitis C through sexual transmission in the context of sexual assault where blood and skin trauma both occur is a possibility.

Education programs which include practical information about the principles of infection control and all the potential sources of hepatitis C transmission could provide inmates with the ability to reduce the risk associated with blood to blood contact in custodial settings. 

People who work in custodial settings may not be interested in learning about hepatitis C beyond worksafe issues. Occupational health and safety is the responsibility of the employee’s organisation, however, hepatitis C educators may be contracted to provide specific training about hepatitis C transmission and prevention and infection control. 

Acknowledge structural barriers that may prevent access to specialist health care

Structural barriers may prevent or inhibit inmates from accessing health care including hepatitis C treatment and related specialists services such as testing and monitoring. Availability of antiviral therapy for hepatitis C is variable between the states and territories and between custodial settings in the same jurisdiction. The number of inmates treated in all Australian jurisdictions remains low. Hepatitis C treatment availability is restricted by limited correctional health budgets because the costs of hepatitis C treatment must be carried by State and Territory governments. It is also a policy issue that requires concerted lobbying to improve access to treatment for inmates.

Testing for hepatitis C using PCR technology is also limited for inmates due to financial restrictions, therefore, confirmation of a hepatitis C diagnosis may not be possible in custodial settings. Therefore, educators must consider these barriers when providing inmates with information on accessing hepatitis C treatment. At the same time, it is vital that educators provide inmates with information and guidance on accessing hepatitis C services post release from prison.

While it is important to acknowledge the structural barriers, it is vital that educators advocate for inmates to have access to health care including hepatitis C treatment, hepatitis A and B vaccination and monitoring tests such as PCR and liver function tests whilst incarcerated.

Provide adequate information for release from custodial settings

Although it is important to consider the barriers to hepatitis C education in custodial settings and to focus providing relevant information in the context of inmates’ limited access to resources and supports, it is equally as important to provide inmates with information on all aspects of hepatitis C including access to specialist treatment services, NSPs and information and support services for their release into the community. Developing specific education programs that target inmates due for release is one method of ensuring the information is provided to those that need it.

Overcoming hepatitis C education fatigue among inmates

Some inmates may experience hepatitis C education fatigue or overload, believing that they have “heard it all before” and believe they are well informed about hepatitis C. Acknowledging that some inmates are informed about hepatitis C is crucial to avoid fuelling the fatigue and subsequently turning them away from the safety message. At the same time using creative and interactive education strategies such as games, videos and knowledge quiz activities could make learning about hepatitis C more interesting.


National Centre in HIV Epidemiology and Clinical Research. (2006). Hepatitis C Virus Projections Working Group: Estimates and projections of the Hepatitis C virus epidemic in Australia 2006.
Ibid.

Hellard, M., Crofts, N. and Hocking, J. for the Burnet Institute: Epidemiology & Social Research Unit. (2004). Hepatitis C virus among inmates in Victorian correctional facilities: report of the prevalence of hepatitis C virus and the risk behaviours associated with the transmission of hepatitis C virus in Victorian correctional facilities.

Hellard, M., Hocking, J.S. and Crofts, N. (2004), ‘The prevalence and risk behaviours associated with the transmission of hepatitis C virus in Australian correctional facilities’, Epidemiology and Infection 132, pp. 409-415.

Anti-Discrimination Board of New South Wales (ADBNSW). C-Change - Report of the enquiry into hepatitis C related discrimination. 2001; Sydney: Anti-Discrimination Board of New South Wales.
Dolan, K. (2000). The epidemiology of hepatitis C in prison populations. In: Commonwealth Department of Health and Aged Care (Ed.), Hepatitis C: Informing Australia's National Response, 61-94. Canberra: Commonwealth of Australia.

Bowden, S., McCaw, R., White, P.A., Crofts, N. & Aitken, C.K. (2005). Detection of multiple hepatitis C virus genotypes in a cohort of injecting drug users. Journal of Viral Hepatitis; 12(3): 322-324.

HCV Advocate: Treating HCV in Prison.

Here's an American take on harm reduction and treatment for HEP C in jail/prison. Check out the HCV Advocate newsletter if you haven't already - they have each monthly issue in a downloadable format. And here are their top 10 downloads (fact sheets) for April - both in English and Spanish. Great resoruce.
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Treating Hepatitis C in Prison
October 2009 HCV Advocate

Liz Highleyman


Hepatitis C is much more common among people in jails and prisons compared to the population as a whole, and it is estimated that about one-third of people with HCV in the U.S.  – approximately 1.5 million – pass through the correctional system each year.

In recent years an increase in the number of prisoners with advanced HCV-related liver disease and growing public health awareness about the need for treatment has collided with ever-rising healthcare costs and, now, a stubborn recession eating away at correctional system budgets. 

How Common Is It?

The high prevalence of hepatitis C in prisons is largely attributable to the fact that sharing drug use equipment is an efficient means of transmission, and a substantial proportion of prisoners are incarcerated for drug-related offenses.  

Epidemiological studies have observed prison HCV infection rates in various areas the U.S.  ranging from about 10% to more than 50% (averaging around 30%-40%), compared with approximately 2% for the general population.  A recent California study found about half of women and 40% of men entering state prisons had hepatitis C, while a survey of shorter-term jail inmates in Chicago, Detroit, and San Francisco found an infection rate of 13%.

Many individuals enter prison already HCV-infected, but a significant number acquire the virus behind bars.  In addition to injection drug use – which occurs despite strict rules and the challenges of obtaining drugs and needles – inmates may contract HCV through non-sterile tattooing or exposure to blood during fights.


Furthermore, increasing evidence indicates that sexual transmission of HCV is more common than previously believed, especially when it involves “rough sex,” exposure to blood, or concurrent infection of HIV or other sexually transmitted diseases.  Coerced unprotected anal sex would presumably be particularly risky.

Advocates and public health experts have urged prisons to adopt harm reduction strategies such as condoms, clean needles, and methadone maintenance.  The World Health Organization recommends that prisoners should have access to condoms and bleach for cleaning injection equipment, and several countries and some U.S.  states have implemented various harm reduction measures.  But officials in most jurisdictions oppose this approach, arguing that it condones prohibited behavior. 
Whom to Treat, and When?
The Centers for Disease Control and Prevention (CDC) recommends that all incoming inmates should be screened for HCV, and those who test positive should be evaluated for treatment.  But these guidelines are not mandatory, and states have widely varying polices.  Some jurisdictions do not offer routine antibody screening, fearing that testing would obligate them to provide treatment. 

Incarcerated people may not receive appropriate hepatitis C treatment for a variety of reasons, potentially turning a limited term of incarceration into a death sentence.  Cost is the most commonly cited factor.  A year of treatment with pegylated interferon plus ribavirin costs around $25,000.  Jails holding short-term inmates have an incentive to withhold treatment so the expense becomes someone else’s problem.  Longer-term institutions may delay therapy so long that prisoners are eventually released or become too sick to benefit.  

Many clinicians have traditionally been unwilling to offer hepatitis C treatment to people with conditions assumed to predict poor adherence or response, including ongoing drug use.  Some feel similarly about giving interferon to people with pre-existing depression or other psychiatric conditions.  

While incarceration often leads to “enforced abstinence,” and most prisons offer 12-step programs, many inmates manage to continue using drugs behind bars.  Older guidelines recommended that patients should be abstinent from drugs or alcohol for at least six months before starting hepatitis C treatment.  According to current National Institutes of Health and AASLD guidelines, however, active drug users and those receiving maintenance therapy such as methadone should not automatically be denied treatment.  

Treatment for chronic hepatitis C is indicated when people begin to experience liver disease progression.  But a majority of people with chronic hepatitis C never go on to develop advanced disease, and therefore may not need therapy.  The challenge is determining in advance who falls within which group in a prison setting.

Many prisoners who were infected with HCV years or decades ago are now reaching the later stages of disease, with rising rates of advanced fibrosis, cirrhosis, hepatocellular carcinoma (HCC), and end-stage liver failure.  Recent analyses of inmates of the Texas Department of Criminal Justice, for example, found that 54 people per 100,000 had HCC and 131 per 100,000 had end-stage liver disease. 
In a presentation to the NCCHC (National Commission on Correctional Health Care), hepatologist Bennet Cecil estimated that about 20% of prisoners with hepatitis C have advanced liver disease, so about 6% of all prisoners – 20% of the one-third believed to be HCV-infected – are potentially eligible for treatment.

Liver disease progression is best determined by liver biopsy; a significant proportion of patients experience disease progression despite persistently normal liver enzyme (ALT and AST) levels.  As with HCV antibody screening, prison jurisdictions vary in their policies regarding biopsies – which are themselves expensive – and treatment.  Liver transplantation is even more restricted due to its extremely high cost, the shortage of donor livers, and the associated political controversy.

The Federal Bureau of Prisons recommends treatment according to AASLD criteria, but states set their own policies.  Some offer treatment as seldom as they can get away with, leading to several legal challenges based on the premise that withholding standard-of-care therapy violates the Eighth  Amendment prohibition against cruel and unusual punishment.

Treatment Effectiveness

A growing body of evidence shows that people in correctional settings and former inmates can be successfully treated for hepatitis C, though sustained response rates tend to be lower than those observed in clinical trials.

In the October 1, 2008 issue of Clinical Infectious Diseases, D.  Maru and colleagues reported findings from a study of inmates at Connecticut Department of Correction facilities treated with pegylated interferon plus ribavirin during 2000-2006.  Sustained virological response (SVR) rates were 43% for patients with HCV genotype 1 and 59% for those with genotypes 2 or 3.  This compares with overall average response rates of about 50% for genotype 1 and 70%-80% for genotypes 2 or 3 for the hepatitis C population as a whole.

More recently, K. Chew and colleagues reported in the August 2009 Journal of Clinical Gastroenterology that inmates at Rhode Island Department of Corrections facilities treated with the same regimen had somewhat lower SVR rates, 18% for genotype 1 and 50%-60% for genotypes 2 and 3.  

Hepatitis C treatment in correctional settings presents numerous challenges.  A disproportionate number of prisoners are black, and a large body of research shows that people of African descent respond less well to interferon-based therapy.  But surprisingly, the Connecticut and Rhode Island studies did not see differences in sustained response rates between black and white patients.

Many prison inmates with hepatitis C are coinfected with HIV, which both accelerates liver disease progression and impairs response to treatment.  Side effects of interferon-based therapy can be difficult under the best of circumstances, but dealing with depression, fatigue, and malaise can be even harder given the hardships of life on the inside.  Furthermore, frequent transfers between facilities and release before treatment is completed can lead to interruption of therapy and treatment failure.

On the other hand, incarceration also offers some unique opportunities.  As noted, an estimated one-third of people with hepatitis C pass through correctional facilities annually, many of whom belong to underserved populations and might not otherwise have access to HCV screening and treatment.  

Treatment in prison allows for directly observed therapy, frequent monitoring of early response and drug tolerance, and counseling and support around adherence and side effects management.  It is critical, however, to provide pre-release planning to ensure continuation of care in the community.

Both treated inmates and those who do not need treatment can receive education about how to prevent HCV transmission (including using condoms and not sharing needles) and encouraging liver-healthy habits such as limiting alcohol consumption and maintaining a healthy weight.  In addition, those who are not already immune should be offered hepatitis A and B vaccination.

It should also be emphasized that successful treatment does not protect against future infection, and there is no vaccine for hepatitis C.  A study reported at the Interscience Conference on Antimicrobial Agents and Chemotherapy in September found that 22% of current or former prisoners in Vancouver who achieved sustained response to interferon-based therapy became re-infected with HCV.  Re-infection was mostly attributable to injection drug use (76%), though 15% had other known risk factors including tattooing, piercing, sexual activity, or direct contact with blood during a fight.

Changing Policies
While there is ample research indicating that many inmates need hepatitis C treatment and interferon-based therapy can be successful in prison settings, evidence is not always enough to encourage greater access to appropriate care.  

Many states are unwilling to shoulder the cost of treatment, and some that once provided relatively good care have scaled back in the wake of the ongoing budget crisis.  In California, in fact, the budget deficit is so severe that the state is releasing prisoners early.

But deferring treatment can be “penny wise and pound foolish.” Treatment at earlier disease stages can prevent more serious consequences requiring much more expensive management later on. 
As reported in the November 2008 issue of Hepatology, a mathematical modeling study by J.  Tan and colleagues showed that without using biopsies to determine disease stage, treating all HCV-infected inmates with pegylated interferon plus ribavirin would be cost-saving for all ages and genotypes.  This strategy, however, would expose many people who do not need therapy to unnecessary side effects.  If pretreatment biopsies were performed, treatment was still cost-saving for prisoners of all ages and genotypes found to have advanced fibrosis or cirrhosis.

Some studies suggest that interferon-based therapy may help slow liver disease progression even if it does not produce a sustained virological response.  Furthermore, inmates who are treated and cured will not go on to transmit HCV to others, either in prison or in the community after release.  

Given these benefits – and the humanitarian imperative to provide good care for people in government custody – advocates and legislators are working to expand access to hepatitis C education and treatment.

In the future, new treatment options may help turn the tide.  Directly-targeted oral agents may be better tolerated, produce higher response rates, and be effective with a shorter course of therapy, tipping the balance toward prompt, presumptive treatment.

Selected References:

Chew, K. et al.  Treatment Outcomes with Pegylated Interferon and Ribavirin for Male Prisoners With Chronic Hepatitis C.  Journal of Clinical Gastroenterology 43(7): 686-691.  August 2009.

Farley, J. et al.  Treatment of HCV infection in intravenous drug users in inmates of correctional institutions, Canada: four year follow up − significant likelihood of reinfection.  49th Interscience Conference on Antimicrobial Agents and Chemotherapy.  San Francisco.  September 12-15, 2009.  Abstract H-219.

Hennessey, K. et al.  Prevalence of infection with hepatitis B and C viruses and co-infection with HIV in three jails: a case for viral hepatitis prevention in jails in the United States.  Journal of Urban Health 86(1): 93-105.  January 2009.

Maru, D. et al.  Clinical outcomes of hepatitis C treatment in a prison setting: feasibility and effectiveness for challenging treatment populations.  Clinical Infectious Diseases 47(7): 952-961.  October 1, 2008.

Tan, J. et al.  Treating hepatitis C in the prison population is cost-saving.  Hepatology 48(5): 1387-1395.  November 2008.

Harm Reduction debate in Australia

This recent news clip is from the Aussies, who are at least having a public dialogue about Hep C harm reduction interventions:
-----------------------------------

Needle exchange 'would prevent hep C transmissions'

ABC.net.au
Updated Wed May 19, 2010 7:50am AEST
 
Drug 
reform groups and the ACT Greens are pushing for a needle exchange 
program to be set-up at the prison.
Drug reform groups and the ACT Greens are pushing for a needle exchange program to be set-up at the prison. (AAP : Julian Smith)
 
The ACT Greens and drug reform groups have seized on a possible hepatitis C transmission in Canberra's jail to renew their push for a needle exchange program.


There are high levels of hepatitis C in the Alexander Maconochie Centre.

Eighty-two detainees were tested in the last survey and Health Minister Katy Gallagher says 65 per cent of them had the virus.

She says there is evidence one detainee contracted the virus while in the jail.

"So this is our first case where there is evidence to support transmission of hepatitis C whilst in custody," she said.

ACT Health says the man is considering legal action.

"I've heard that there is a view that if there was a needle exchange program this may not have occurred," she said.

She says a needle exchange would bring health benefits but it would also create serious industrial problems.

But Greens MLA Amanda Bresnan says only a needle exchange will prevent transmissions.
"We can't bury our head in the sand about this. We should be providing safety to prisons and prison guards," she said.

Bill Bush from Family and Friends for Drug Law Reform says the Government has a responsibility to introduce an exchange program.

He says the Government is using the discomfort of prison officers as a fig leaf instead of engaging in dialogue.

Opposition corrections spokesman Jeremy Hanson says the possible transmission is one of a long list of failures at the prison.

"We have prisoners now being infected with hep C, we have prisoners protesting on the roof, we have guards taking weapons home - we have a whole range of problems in this jail," he said.

"I think it makes an absolute mockery of [Corrections Minister] Simon Corbell's management of this facility."

The Government says it will review the idea of a needle exchange program later this year.

Wednesday, May 19, 2010

ACT-UP is Alive and Well...

This article seemed relevant both because people with Hep C are often coinfected with HIV, and because ACT UP has a lot to teach the Hep C advocacy community about the urgency of finding a cure. Too often the State justifies under-investing in hepatitis patients because it's a disease that may still take anther 20-30 years to kill, and even then, they remind us, only about 15-20% of patients who have chronic hepatitis will develop serious liver damage, including cirrhosis and liver cancers. 

The scale of Hep C infection far exceeds that of HIV, however, so even if HIV was more deadly and acted more quickly, at our present levels of investment in prevention and treatment, HEP C will kill far more. And the number of people infected by Hep C has already far exceeded those with HIV. As an illustration, for the month of April, 2010, the AZ Department of Corrections had custody of 183 prisoners they had identified as HIV+. That same month, the identified Hep C+ prisoner population was 6,096. 

Think on that for a moment. About 50-70% of people with Hep C don't even know they have it, too.

The absolute numbers of new Hep C infections have come down across the country since 1992 (at which time it became possible to screen blood products for the virus, drastically reducing infections caused by transfusions and dialysis), deaths from advanced liver disease have still been rising, due overwhelmingly to hepatitis. In fact, unless there is dramatic intervention in the infectiousness and destructiveness of the virus, the mortality rate from liver disease is expected to double by the year 2020. 

Those of us who have Hep C or love someone with it are tired of being told to "wait and see". We will work cooperatively with our partners as much as possible to leverage resources and get public support behind fighting this illness, but the State must remain ever mindful that every passing day without treatment brings those we love closer to what may be a terrible fate...and introduces thousands more to the possibility of the same. We saw the same thing happen with the AID epidemic, because the lives of most of those affected were so devalued by society. We would never have come as far as we have with AIDS research and resources for patients had it not been for people Acting Up. 

We know what "wait and see" brings, and it is not an acceptable response to this epidemic. We aren't waiting any more.


Happy World Hepatitis Day, by the way.


-----------------------------





POZ Magazine
February 3, 2010
by Trenton Straube 
 
After almost 20 years, AIDS activist group ACT UP is making news again. But what are their targets in 2010, and who is joining their fight? 

Can HIV history repeat itself? The AIDS Coalition to Unleash Power (ACT UP) experienced its headline-grabbing heyday two decades ago. But in the past several months, the group has once again garnered media attention in efforts to shake up the status quo.

Members of a Philadelphia chapter helped shut down the U.S. Capitol Rotunda in July while protesting for HIV/AIDS issues. An ACT UP chapter formed in Wisconsin to take on a local AIDS service organization (ASO). Another started up in San Diego to salvage the county’s HIV/AIDS services from massive budget cuts. And as if on cue, religious conservatives got in a kerfuffle over a Harvard University exhibit titled ACT UP New York: Activism, Art, and the AIDS Crisis, 1987–1993.

POZ wondered whether this flurry signals underlying shifts in the culture—and in the HIV community—that could herald the return of ACT UP. We spoke with recent headliners for some insight.

But first, a quick history lesson. ACT UP launched in 1987 as a social movement to confront the government, big pharma and general public for ignoring the AIDS crisis. It consisted of autonomous chapters that sprung up across the globe. They conveyed their messages through politically charged posters and slogans such as “Silence = Death.”

Most famously (or infamously), they staged nonviolent acts of civil disobedience—such as chaining themselves to the balcony of the New York Stock Exchange in 1989—that forced the world to take note of the AIDS epidemic. And it worked.

“Every single thing that people with AIDS have today is because of ACT UP—every med, every legal protection, insurance, housing protection, their representation of people with AIDS in public, safe sex itself,” says Sarah Schulman, a journalist and former member who is posting a collection of interviews with ACT UP New York members on actuporalhistory.org.

It’s ironic that one of the movement’s biggest successes—advocating for the introduction of protease inhibitors, first available in the mid-’90s—helped usher in its near extinction. By the late ’90s, it seemed, the battle had been won. Local and federal AIDS groups were up and running. Meds were available. And once fewer people were dying, fewer people were protesting. With a few notable exceptions, the movement became defunct.

Or maybe it just went into hibernation, waiting to be reawakened. 


Such was the case last summer in Madison, Wisconsin. A group of about 10 activists (some HIV positive, some not) wanted to challenge a local ASO called AIDS Network to improve the quality and variety of care it offered. Aware of ACT UP’s history and name recognition, they decided to form a chapter.

The group spearheaded old-school protests outside the network and posted the ASO’s financial documents online. The tactics garnered attention.

But did they get results? In fact, AIDS Network has increased its client reassessment rate, opened a part-time food pantry and started a mental health service. “Our clients always received great care,” the network’s executive director Karen Dotson tells POZ. “I’m very proud of what we’ve done in the last year and a half that I’ve been here.”

But she says the recent improvements were in the works before ACT UP Wisconsin started acting up. She questions the activists’ mission: “Are they a diverse group? Are they focused on people living with HIV/AIDS? Or are they just concerned with critiquing AIDS Network?”

“This is not about me,” counters ACT UP Wisconsin’s Bob Bowers. “It’s not about Madison or AIDS Network. This is about the bigger picture. For us to take a stand here, we’ve seen a ripple effect across the United States. Friends in Key West [Florida] are cheering us on. They’re wanting to form chapters in Arizona and California.”

Bowers’ fellow activists describe the bigger picture as a scenario all-too-often playing out across the nation. Many of today’s AIDS organizations are stuck in an ’80s mentality of only offering prevention and helping clients “from diagnosis to death,” says Greg Milward, a chapter member. ACT UP can nudge these ASOs out of the past, pressuring them to offer integrative services such as dental care and programs for mental health and substance abuse.

In many cases ASO clients are so grateful for any services, especially in the midst of a great recession, that they don’t dare question or complain, adds Della Haugen, also a chapter member. And if they do feel mistreated, they don’t speak out because they fear being penalized. ACT UP can empower them and give them a voice.

“We feel it’s important to have the ACT UP chapter because so much accountability needs to be out there,” Haugen says. “Even if the issues with the local ASO are resolved, there are other issues to bring up.” Indeed, the group has also met with U.S. Congressman Dave Obey (D–Wisconsin) regarding lifting restrictions on needle-exchange programs.

Activists certainly have their work cut out for them. But the main challenge, as Bowers sees it, is that “there’s an incredible sense of complacency within the HIV/AIDS community because they think that this work is being done.”

Mike Tidmus would agree and disagree with that statement. The San Diego blogger has no illusions about California’s inability to get the AIDS-related work done. He’s well aware that the state’s budget has imploded. In Wisconsin, the focus is on redirecting funds. In California, it’s on salvaging them.

Tidmus launched an ACT UP chapter last summer in hopes of doing just that. He also envisioned the group fighting HIV/AIDS stigma in the gay community as well as working to make medical marijuana, which is legal there, cheaper for people with an AIDS diagnosis.

But only about eight people showed up for the first ACT UP meeting, and there was even less interest in holding a protest. “I tried to light a fire to get people to show up for an annual [state AIDS office meeting], and it sort of fizzled,” he recalls.

“There’s a lot of apathy,” Tidmus says. “People who might have been involved in the ’80s or ’90s are on [HIV meds] now, so it’s not the big deal it was before.” In other words, to paraphrase ACT UP founder Larry Kramer: If there’s no outrage, there’s no ACT UP.

But notable exceptions come to mind. ACT UP Philadelphia has been meeting most every Monday night since 1988. Part of its longevity, says member Jose de Marco, is that its members “are people of color, a mixture of straight, gay, homeless, substance users—we reflect AIDS in this country.”

The Philly chapter takes up causes important to its members, such as local housing issues and global AIDS programs. In addition, de Marco notes that, despite using social networking sites such as Facebook to get messages out, ACT UP Philly still believes in taking it to the streets, to corporate boardrooms and even to the U.S. Capitol.

So when its members learned last fall that the state of Pennsylvania had failed to use more than $11 million in available federal funds and had to send the money back to Washington, they knew how to channel their outrage.

They staged an in-your-face direct action at a state AIDS funding meeting. They promoted it, filmed it and posted the clips online. They made headlines—just like they did back in the ’80s.


Tuesday, May 18, 2010

Children should be seen, heard, and screened for Hep C.

Many Kids With Hepatitis C Are Missed

AZCentral.com
May. 2, 2010 11:00 PM
Health Day


SUNDAY, May 2 (HealthDay News) -- Many children with hepatitis C go undiagnosed and untreated, which can lead to severe liver damage later in life, a new study warns.

Researchers from the University of Miami Miller School of Medicine noted that national data shows that between 0.2 percent and 0.4 percent of children in the United States are infected with hepatitis C.

Based on that data, they thought they would find about 12,155 cases of pediatric infection in Florida, yet only 1,755 cases were identified, a mere 14.4 percent of the expected number of cases.

"Our study showed a lack of adequate identification of hepatitis C virus infection in children that could be widespread throughout the nation," said lead researcher Dr. Aymin Delgado-Borrego, a pediatric gastroenterologist and assistant professor of pediatrics.

Hepatitis C is like a "ticking bomb," she said. "It seems harmless until it explodes."

Most children and adults infected with hepatitis C do not have symptoms or only nonspecific symptoms, such as fatigue or abdominal pain, Delgado-Borrego said.

She planned to present the findings Sunday at the Digestive Disease Week conference in New Orleans.

Delgado-Borrego chose Florida for the study because it is one of the few states that requires all cases of the infection to be reported to the local health department
.

"Not only was there a lack of proper identification, but among the children that have been identified the percentage of those receiving medical care is extremely and unacceptably low," she said.

Based on these data, Delgado-Borrego's group found only about 1.2 percent of children with hepatitis C were receiving treatment by a pediatric hepatologist.

Most young children get the infection from their mothers while in the womb. That accounts for about 60 percent of the infections in young children, Delgado-Borrego said. Teenagers can get it through IV drug use and other substance abuse, she added.

So why are so many kids missed? According to Delgado-Borrego, there's a widespread lack of awareness of the condition and adequate screening is not often done. Moreover, children are too often not referred to treatment.

"Primary care doctors should screen all children who are at risk for hepatitis C infection, such as those whose mothers are infected," Delgado-Borrego said.

In addition, infected children should be referred to specialists, she added.

"Early identification of pediatric hepatitis C infection would likely help us cure the infection in over 50 percent of children that currently have it," Delgado-Borrego pointed out. "This would save children from liver damage as well as possible liver failure, liver cancer and even early death," she added.

Dr. Marc Siegel, an associate professor of medicine at New York University, said that, "this is a pretty shocking study."

Siegel said early diagnosis of hepatitis C is very important, especially in children. "Because if kids have it they have a lifetime of exposure to it, so the chances of damage to the liver is very high," he explained.

Hepatitis C is the leading cause of liver transplantation, Siegel noted.

More information
For more information on hepatitis C, visit the U.S. National Institutes of Health.

Monday, May 17, 2010

Get to know your US Representative via HR 3974.

Whether or not you make it to the candlelight vigil Wednesday night, try to take 5-10 minutes to call you U.S. Representative about this bill in the House, in recognition of World Hepatitis Day. Lets make sure they all take notice. There's an easy link below.

---------------from our friends at Hepatitis Central: great resource------------------


Hepatitis Central

The Future of Hepatitis: Time to Get Political

May is Hepatitis Awareness Month, and there is no better time to participate in the much-needed improvement of viral hepatitis prevention, control and surveillance programs.
by Nicole Cutler, L.Ac.

The medical accomplishments of today are often a result of the hard work and dedication of the previous generation. For those who enjoy pristine health, it is easy to take the evolution of modern medicine for granted. But when it comes to medical issues that combine healthcare and politics, those with chronic viral hepatitis don't have the luxury of taking medical progress for granted. Marking the 15th anniversary of Hepatitis Awareness Month in the United States, May 2010 is a prime opportunity to demonstrate political solidarity in an effort to raise viral hepatitis awareness.

There is no question that the primary culprits of chronic viral hepatitis, the Hepatitis B and Hepatitis C viruses, are major health problems worldwide. Even though those with either viral strain have a better chance of eliminating the virus with early detection and treatment, chronic viral hepatitis often goes undetected until it has progressed to advanced liver disease. Unfortunately, chronic viral hepatitis is the most common reason for a liver transplant in the United States, and frequently leads to cirrhosis, liver failure or liver cancer.

A division of the National Academy of Sciences, the Institute of Medicine announced study results in 2010 proving that chronic viral hepatitis is in need of resources to match its toll on the public health system. The researchers concluded that more funds are required to boost knowledge and awareness, surveillance and healthcare services for chronic viral hepatitis. Upon realizing these specific needs as outlined by the Institute of Medicine, most who understand the prevalence and severity of viral hepatitis are ready to demonstrate a political stance in favor of funding for this disease.

Below are two opportunities to get involved in the union of healthcare and politics - with the overarching goal to endorse viral hepatitis prevention, control and surveillance programs.


1. March in Washington - On May 19, 2010, which also happens to be World Hepatitis Day, a rally in Washington D.C. will be held at the United States Capitol. Sponsored by the National Viral Hepatitis Roundtable, the goal of this march is to demand that Congress fully funds hepatitis programs in the U.S.

2. Support Bill H.R. 3974 - Otherwise known as the Viral Hepatitis and Liver Cancer Control and Prevention Act of 2009, bill H.R. 3974 was written to amend the Public Health Service Act to direct the Secretary of Health and Human Services to establish, promote, and support a comprehensive prevention, education, research, and medical management referral program for viral hepatitis infection. This program will lead to a marked reduction in the disease burden associated with chronic viral hepatitis and liver cancer.

Since this important bill is currently in the first step of the legislative process, public support counts. By letting your U.S. House of Representative know (via phone call or email) that you support this bill, you are making your desire to enhance hepatitis awareness known. You can reach your Representative by calling the Capitol Switchboard at (202) 224-3121, or email Representatives directly from writerep.house.gov.

Because there are so many worthy causes and limited resources, government-sponsored programs to improve prevention, education and access to medical care always involves dedicated advocates. When it comes to the tremendous burden of viral hepatitis on America's health and well-being, there are few worthier causes. With this in mind, there is no better time than now to get political by joining the March 19, 2010 rally or conveying your support of H.R. 3974 - because the efforts we make today will make a difference in hepatitis awareness tomorrow.


References:
http://cdc.gov/mmwr/preview/mmwrhtml/mm5917a1.htm, Hepatitis Awareness Month --- May 2010, Retrieved May 7, 2010, Centers for Disease Control and Prevention, 2010.

http://www.experiencefestival.com/a/1960s_-_Events_and_trends/id/4726438, 1960s Events and Trends, Retrieved May 6, 2010, Global Oneness, 2010.

http://www.govtrack.us/congress/bill.xpd?bill=h111-3974, H.R. 3974: Viral Hepatitis and Liver Cancer Control and Prevention Act of 2009, Retrieved May 7, 2010, govtrack.us, 2010.

http://www.hepb.org/advocacy/awareness_month.htm, May is National Hepatitis Awareness Month, Retrieved May 7, 2010, Hepatitis B Foundation, 2010.

http://www.iom.edu/Reports/2010/Hepatitis-and-Liver-Cancer-A-National-Strategy-for-Prevention-and-Control-of-Hepatitis-B-and-C.aspx, Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C, Retrieved May 7, 2010, Institute of Medicine, 2010.

http://www.natap.org/2010/HCV/032610_03.htm, The Institute of Medicine report on viral hepatitis: A call to action, Retrieved May 7, 2010, Hepatology, March 2010.

http://www.nvhr.org/calltoaction.htm, A Call To Action!, Retrieved May 6, 2010, National Virus Hepatitis Roundtable, 2010.

FDA Considers Expanded Use of HCV Drugs

Good for all those advocates who petitioned the FDA. I'm going to drop the feds a note about this, too. If this means they can start trying to treat people with serious mental illness - who automatically get ruled out for treatment now because the drugs are so hard on the body and mind - then this is awesome. I hate it when they experiment on prisoners, but with-holding treatment is experimentation too, so I hope this at least gives some of them more options than they have now.

-----------------

HEPATITIS C NEWS

from hepcassoc.org

April 30, 2010

ROCKVILLE, Md. -- The FDA heard public testimony Friday on establishing a compassionate use program that would allow severely ill hepatitis C (HCV) patients access to investigational, direct-acting antiviral agents.

One of the current treatments for HCV -- pegylated interferon alfa-2a and ribavirin (Rebetol) -- is highly toxic with a response rate of about 50%, clinical data show. That number is much lower in real-world cases, according to a number of physicians who testified during the public hearing.

The FDA understands current treatment options are not good enough, an official said. "Current control of hepatitis C is not working," said Peter Lurie, MD, of the FDA's Office of the Commissioner.

Friday's meeting was called in response to a petition by groups seeking access to the drugs for individuals often excluded from clinical trials.

Clinical trials are only open to a small subset of real-world HCV patients, noted Diana Sylvestre, MD, who treats HCV-infected intravenous drug users in the San Francisco area. Yet, there are many HCV patients who cannot tolerate current treatments, she said.


Her patients are rarely accepted into clinical trials, she said, because of their drug use, comorbidities, and mental illnesses.

Other patient populations who might benefit from expanded access include those with cirrhosis, HIV, or hemophilia; those awaiting transplant or post-transplant patients who have a recurrence of HCV; and African Americans and Hispanics.

Several physicians urged special consideration for minority patients, who are disproportionately left out of clinical trials. A recent study confirmed that members of ethnic minorities do not fare as well as expected with current HCV treatments.

The FDA instituted compassionate use programs in the 1970s and such drugs as trastuzumab (Herceptin), bevacizumab (Avastin), and erlotinib (Tarceva) have all been made available before formal FDA approval under an expanded access protocol.

One major expanded access program involved breakthrough HIV therapies in the '90s. "Anecdotally, the results were so striking," said Jeffrey Murray, MD, deputy director of the FDA's antiviral products division. "They did save lives."

Murray noted that the FDA is working on a guidance document on the use of direct-acting antiviral agents, which should be released sometime this year.

If approved, an expanded access program could be applied to several novel HCV treatments currently in clinical trials.

One of the most advanced is the protease inhibitor telaprevir from Vertex and Johnson & Johnson.

Results from a phase II trial showed that when telaprevir was added to pegylated interferon alfa-2a and ribavirin among patients who hadn't responded to treatment, the virus was significantly more likely to be eradicated.

Harm Reduction: Taking it to the Streets

I stumbled across this story below on a progressive blog this morning (via an awesome California blogspot for the "Off the Streets Project", a harm reduction effort in Modesto, Stanislaus County), and it set me off on a seven-hour writing tirade. You get spared most of it, though, so you have enough energy left to read about these folks. 

Among other things, this group promotes needle exchange programs, which are outlawed in their city. A couple of activists went out and distributed free syringes anyway, and got arrested for it. Looks like the sheriff alrady had it in for them because of some like-minded blogger pissing him off. These folks haven't just been blogging and committing civil disobedience, though - they've also been going into neighborhoods and engaging people and literally cleaning up the streets to get rid of dirty needles. In the process they help build connections between community members and raise awareness about combating infectious, bloodborne diseases like Hep C.

I hope we're doing a lot of that here. I feel so out of touch with the streets - I used to work them, doing outreach, back in Michigan.

Anyway, read on and then come back up here and check them out at the source. That's how we started to get a grip on HIV: with good old-fashioned community-building and harm reduction methods, even though it meant dragging some sheriffs and lawmakers kicking and screaming into the real world. It's hard to believe that in 2010 there's still so much hysteria from some people over things like needle exchange and condom distribution...but then, look at some of the nonsense that comes out of Maricopa County and the State House. If there are still whole communities in Cali afraid of needle exchange in the streets, then I guess pushing harm reduction in the prisons and jails here may be a little more difficult than we originally thought...

Even the progressive blogger below was afraid to identify themselves. What's in store for us, I wonder? Anyway, our hats are off to these folks...

-------------------------------------------

Modesto Harm Reduction Activists Still Facing Jail

By Anonymous

In Modesto, two harm reduction activists, Brian Robinson and Kristy Tribuzio (the “Mono Park 2”), are facing significant sentences from a local court. And this for offering a voluntary service, a syringe exchange program (SEP) that elsewhere in California and in most industrial countries is taken for granted. Indeed, the nation’s drug czar, Gil Kerlikowske, has stated at a Congressional hearing that “needle exchange programs have been proven to reduce the transmission of blood-borne diseases.”

Modesto (pop. 209,000) is in Stanislaus County, where the economic slowdown has helped fuel substance abuse. According to the National Insurance Crime Bureau (NICB), Modesto has a higher rate of auto thefts than any other metropolitan area in America, a fact that contrasts strikingly with the image that the city fathers would like to project. And U.S. Attorney McGregor Scott referred to the Modesto area as “ground zero” for the meth problem nationwide.

In April 2009, Robinson and Tribuzio were arrested. Immediately after the arrest, Tribuzio not only lost her job with drug services in Stanislaus County but also her credentials to work as a substitute teacher. Furthermore, she was unable to continue in her education master’s program. Such multidimensional attacks on her right to work raise issues of proportionality.

Rationale of SEPs

In the health world, most people take it for granted that injecting drug users (IDUs) should have access to sterile injecting equipment. Contrary to the views of the apparatchiks in Modesto, SEPs do not encourage drug use. An IDU who is determined to inject will do so, with “dirties” or even with sharpened ballpoints.

Needle sharing brings with it the transmission of HIV and Hepatitis B and C, all of which are potentially lethal illnesses that are known to ravage vulnerable populations. Unlike gays, IDUs are an especially difficult population with which to make contact. A number of them are homeless.

The focus on using one-off needles is a continual reminder to IDUs to take care of their health. Often, the SEP clients collect needles for their circle of acquaintances. That helps avoid “dirties” littering parks and streets. Contrary to stereotypes, IDUs are not folks that just want to die. The SEP is an excellent mode to facilitate users making first contact with, for example, detox/rehab units, maintenance (with methadone) programs, a wide range of information or testing for HIV or HEP B or C.

Fresno SEP

In 1999, the California legislature legalized SEPs giving each county leeway as to implementation. Before it became acceptable to the powers that be in Fresno (on December 16, 2008), it had taken 14 years of underground activity on the streets and painstaking organizing.

In Fresno, the SEP makes basic medical treatment available. An M.D., Marc Lasher, a specialist in the field of substance abuse, is always in attendance with helpers. This facility takes place inside a bus that he drives to a discreet location in a cul-de-sac where the SEP takes place.

Dr. Lasher notes that “this is the standard of care established by the surgeon general, the CDC [Centers for Disease Control] and NIDA [National Institute on Drug Abuse] — that when a health provider comes across an IDU and that person is not willing to go into detox or rehab, then the health personnel should provide them with access to syringes to prevent them causing further harm to themselves or to other people.”

Fresno’s SEP distributes approximately 360,000 clean, one-way needles annually, most in exchange for those brought in by the users themselves who carefully collect their own and those around them.

The police in Fresno have not been afraid to arrest people for this voluntary work. For instance, Jean Rodrigues, one of the founders of the Fresno SEP, was arrested [when?] for the contents of her car (needles and paraphernalia). She took the rap so that other volunteers would not have to experience the multiple impacts of a trial. Fortunately, the DA dropped all the charges.

Dr. Lasher assured me that “getting organized and legalized didn’t happen overnight.” It entailed the painstaking work of persuasion: “We started meeting with the Board of Supervisors individually. We put together five or six doctors as a team and went and talked to them individually.”

The Fresno SEP is financed by a private foundation but currently has a two-month shortfall in its budget. One month is almost covered by the generally impoverished IDUs themselves who are all asked to make a donation, however small.

What Went Wrong in Modesto?

So how did it happen that the Modesto SEP was targeted? The answer lies both in the complicated local politics and, arguably, Robinson’s decision to distribute flyers announcing the service instead of using word-of-mouth.

Before the April 2009 busts, there had been a report by the Stanislaus County Civil Grand Jury in 2008 (see www.stancounty.com/bos/agenda/2008/20080715/Corr01.pdf starting on page 22) that supported an SEP. A number of significant institutions in the county supported that recommendation including the Health Department. However, the Board of Supervisors, the DA and the sheriff were unanimously against it.

Especially curious in the Modesto story is the role of a self-styled libertarian blogger, “Robert” (http://thehive.modbee.com/node/16466). It seems that prior to the events described here, Robert was involved in an altercation with the sheriff although what part this has played is unclear. From the chronology, it appears that Robert’s blog played a key role in the sheriff’s decision to make arrests, although the blog contains only his own prejudices and those of his supporters.

Robert’s main objection in Modesto was that needles were given away for none in exchange. Dallas Blanchard, who runs the Fresno SEP, explains that issue as follows: “The police may seize the user’s needles. What should I do? Give somebody none and then have him share a dirty needle?”

Current Situation: February Hearing

The situation for the Mono Park 2 is critical. On February 1, there will be a hearing at which a judge will decide whether the defense will be permitted to advance the legal argument of medical necessity. Before the November 9 hearing, they had not expected charges to be dropped. However, Tribuzio says they had thought there might be “some sort of reasonable alternative, such as an infraction with a fine.” Yet, the deal on the table from DA Birgit Fladager was harsh. Tribuzio notes that it included “a stay away order from an area in which 65+ needles had recently (November 8) been cleaned up in just a two-block radius.”

On November 9, the DA rejected any compromise and offered Robinson as the organizer of the activity a jail term of 30 days and Tribuzio probation for three years. If they contest the case, both could receive up to one year in jail on paraphernalia charges.


A Rollback Pattern Emerging?

The events in Modesto might be mistaken for provincialism and mediocrity. However, there are indications that this arrest is part of a wider rollback attempt.

An article, “Panic in Needle Park: Return of the Fearmongers,” in the January 6 Counterpunch (www.counterpunch.org/papa01062010.html) suggests that there is an ongoing attempt to turn this issue into a political football rather than a health issue. Anthony Papa’s article describes how three significant figures — John Gilbride (DEA), Bridget Brennan (special narcotics prosecutor of New York City) and Peter Vallone, Jr. (D-Queens, NYC City Council) — attacked a two-year-old pamphlet by the N.Y. Department of Health that explained New York’s harm reduction policies. Unusual for the GOP, Mayor Michael Bloomberg defended the pamphlet.

Other SEPs in rural areas of California have already been closed. The combination of California’s insolvency and provincial prejudice may prove lethal. One possible danger if the Modesto rollback succeeds is that it will make supervisory boards even more reluctant to back SEPs.

Tribuzio sees part of the problem in the power given to counties to make decisions for which they are ill-equipped: “I think that one of the biggest problems is that California law is inconsistent. It forces very important public health decisions to be left up to the politics and law enforcement influence of individual communities that are not equipped with the resources and education to be able to make the necessary decisions.”

Health issues getting turned into political footballs is a backward trend to note. And all this is taking place with the AIDS movement in a state of structural weakness. On the other hand, the federal government announced in November of last year that its longstanding ban (since 1999) on SEPs would be lifted. Let us hope that science holds sway here rather than the dogma and stereotypes backed by political calculation.


ackground Reading
Details on the Mono Park 2 (through October 2009):

http://stopthedrugwar.org/chronicle/605/mono_park_2_modesto_needle_exchange_arrest

Brian Robinson’s blog: http://offthestreetsproject.blogspot.com//

Needle exchange programs: http://en.wikipedia.org/wiki/Needle_exchange

The author of this article has chosen to remain anonymous.


February 1st, 2010