a quarterly training newsletter from the Hepatitis C Support Project
Welcome to HepSquads, a new newsletter published by the Hepatitis C Support Project. The goal of this newsletter is to provide HCSP trainers with the necessary tools to help support them in their outreach efforts with timely updates, personal stories and other pertinent information.
Regular features of “HepSquads” will include a quarterly news summary, personal success stories from HCSP trainers, training tips and more.
Help us make this newsletter as effective as possible by telling us what you would like to see in the newsletter to help in your efforts. You can mail us at HCSP, PO Box 427027, San Francisco, CA 94127 or email us at firstname.lastname@example.org with your suggestions.
To learn more about HCSP Trainings and the upcoming schedule, click here.
Vol 12: April, 2006
Table of Contents
Lucinda K. Porter, RN
Have you ever thought of how many lives you may have changed? If you were to list everything you have done to inform, teach, care and advocate for others, my guess is that the list will be long. You are the eyes, ears, hands and heart of advocacy and change. You and your work are essential.
Because you are vital, it is important that you take care of yourself. This work cannot go forward without every one of us. This may be a labor of love, but one filled with challenges, particularly if you are on the front lines. The nature of this work puts you at risk for stress and burnout. Even those who are not visible to us are at risk. For instance, the people who edit, and design this newsletter may labor behind the lines, but this newsletter would not exist without them.
Those of us who work in advocacy and care-giving occupations are at a high-risk for burnout. Burnout refers to that feeling of being all used up. It may feel like you have nothing else to give, especially to yourself. No matter what your occupation, there is only one person who can monitor you for stress and burnout – you.
The good news is that job burnout is manageable, but first you need to recognize it. We all have our own warning signs. For instance, I know that burnout is around the corner when I lose my compassion. I usually feel warmth and empathy for those with whom I work. I have lost this when I notice an internal voice making critical or sarcastic remarks. If I ignore this subtext, then in a short time the pleasure will be gone from my work. Every little thing will annoy me. I will lose my effectiveness to be a good nurse. I will become the Nurse Ratchet of hepatology.
Burnout is a response when life is out of balance. This imbalance affects our bodies. We may be working too much and not taking time to sleep, eat, relax or exercise. This imbalance is a form of stress. When under stress, the human body will activate the fright or flight response. Our bodies do not discriminate between work-related stresses versus stress caused by the threat of a woolly mammoth attack. Either way it is a physiological experience.
The following are some signs and symptoms of burnout. Always consult your medical provider before self-diagnosing. Some of these signs may be caused by more serious and potentially life-threatening medical conditions.
• Persistent irritability or anxiety
• Physical signs of tension, such as teeth grinding, clenched jaws or fists, tight neck muscles
• Sleep difficulties
• Stomach and digestion problems
• Forgetfulness and reduced concentration ability
• Heart races, pounds or skips beats
• Showing up late for work or leaving early
• Taking more time off, particularly for illness
• Persistent exhaustion
• Decline in overall job performance
• Resentfulness, sarcasm, and cynicism
• Dreading going to work
• Increased consumption of alcohol, caffeine, tobacco, food
• Chronic health problems
• Chronic emotional and/or physical fatigue
• Fantasies of “dropping out” of society and leaving all responsibilities behind
• Feeling trapped, with no way out, possibly even suicidal
If you recognize that you are experiencing burnout, congratulate yourself. This is the first and most important step for dealing with it. If you are prone to guilt or shame, skip this. You did not intend for this to happen any more than you intended to catch a cold. Negative emotions just perpetuate the burnout. You do not need to beat yourself up – you need a solution.
Comparing our situation to our client’s situation is a trap for caregivers. If we think that everyone else is worse off than we are, then we keep putting others’ needs ahead of our own. This increases our guilt, which then increases burnout. Remember, this is a physiological problem. For instance, our thoughts and emotions may care a great deal about social justice, but our bodies do not. Comparing ourselves with the plight of others will not help burnout problems. It just perpetuates them.
An important step for burnout recovery is to identify the cause. Are you working too much? Do you have too many responsibilities? Are you giving too much and saying “yes” too often? Is witnessing the pain of others becoming unbearable? Are you frustrated with how your clients are treated or mistreated? Are there factors outside of work that are contributing to burnout? Are there multiple causes?
The next step is to identify your resources and support system. Start with a mentor or supervisor. A good supervisor will counter burnout by working in partnership with you. Larger organizations usually offer human resources assistance. Consult with someone in that department or ask to be referred to an expert. Talk to close family, friends and colleagues about your concerns.
Exercise caution and good sense when talking to co-workers about your situation. You may get good advice and support from co-workers. However, take care not to start more fires in the process. If others are having problems at work, this may lead to griping and gossiping. This can sap time and energy. The goal is to recover from burnout, not add to it. If the source of your problem is a shared-problem, discuss this with your supervisor.
Self-care is the cornerstone for prevention and recovery from burnout. Your body, mind and spirit all need attention. A good place to start is by figuring out what you need most. You may need exercise, time with friends, sleep, a vacation, a reduced workload, a four-day workweek, etc.
Tips for Preventing or Recovering from Burnout
• Take breaks in your day. A break means a break. Do not work at your desk. Find a quiet place to eat. Take a walk.
• Breathe. A few deep breaths can release tension.
• Set limits – say “no.”
• Practice compassion and put yourself first on your list.
• Delegate responsibility. Sometimes we do a task because it is easier to do than to train or ask someone else to do it. This is short-sighted. In the end, delegation of work will serve you well.
• Do not bring your work home. If you find yourself thinking about work, remind yourself that the work will still be there in the morning. You can attend to it then.
• Never, ever fret about work when it is time to sleep. If you find yourself doing this, distract yourself with music or relaxation methods.
• Remember the expression, “All work and no play makes Jack a dull boy”? Be sure to take time off from work. On days off, pursue activities that give you pleasure. Do not fill your time off with a laundry list of things to do unless this truly gives you a lift.
• Prioritize. Your “to do” list will never be blank or at least not for very long. A great way to shrink your to do list is to cross off items without doing them. Try it – it feels liberating.
• Keep your sense of humor. If you have already lost it, get it back.
• Learn how to manage your time. There are books and classes on the subject.
• Get support. Talk to friends, loved ones or a counselor about your situation.
• Develop mantras or expressions to help maintain perspective. Some suggestions:
• Rome wasn’t built in a day and neither will this project be
• The word “no” is a complete sentence
• “Saving the world” is not part of my job description
• If I were on my deathbed looking back at this project, how important would I think it is?
• This task can wait another 30 minutes while I eat lunch
Those who work on a volunteer basis are especially prone to burnout. Paid employment is usually well-defined, whereas unpaid work may lack structure. However, no one is paid to work him or herself into an early grave, so why do this freely?
Hepatitis C is a community problem that needs a community solution. We cannot do this alone. Remember to remind yourself how important you are to this cause. If you notice others who may be overburdened, talk to them. We need to remind each other how important we all are.
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Medicare Drug Plan Deadline is May 15
Four months after its inception, the new Medicare prescription drug program (Part D) is finally beginning to run a bit more smoothly. When the program went into effect on January 1, so many people had problems that several states (including California) stepped in to ensure that patients could continue receiving their medication. By now, many eligible people have already enrolled in a drug coverage plan, but if you haven’t, time is running out. Eligible individuals must enroll by May 15, 2006, or else they will have to wait until November 15 to sign up, and then will have to pay a penalty (at least 1% of the premium per month of delay) for as long as they stay on the plan. “Extra help” is available for low-income people. Several articles about the new drug coverage by benefits specialist Jacques Chambers can be found on the HCV Advocate web site (www.hcvadvocate.org/hepatitis
/living_w_hepatitis_C.asp#2). Information from the federal government is available at www.medicare.gov or by calling 1-800-MEDICARE.
Speaking of drug coverage, several pharma-ceutical companies offer payment assistance programs for low-income patients. The Partnership for Prescription Assistance (www.pparx.org or 1-888-477-2669), launched last year, is a central site for help with prescription coverage. The two major companies that manufacture hepatitis C therapies also offer assistance: Roche’s Pegassist (1-877-734-2797) and Shering-Plough’s Commitment to Care (1-800-521-7157). For more information, see the March HCV Advocate.
Injection Drug Users Often Don’t Get
Hep C Treatment
While shared use of injection drug equipment is the most common route of hepatitis C transmission, injection drug users (IDUs) have traditionally been considered poor candidates for therapy – and have often been excluded from clinical trials and denied treatment. In the March 1, 2006 issue of Clinical Infectious Diseases, Holly Hagan and colleagues reported that in a study of 404 young HCV positive IDUs in Baltimore, New York, and Seattle, 96% had factors that are commonly considered contraindications to hepatitis C treatment, including recent drug use, alcohol use, and depression.
But, according to Hagan, “Even [IDUs] who are actively using drugs show low rates of reinfection and similar treatment completion rates.” Several studies have shown that IDUs can adhere to and benefit from anti-HCV therapy. For example, in the February 2006 European Journal of Gastroenterology and Hepatology, Geert Robaeys and colleagues reported that in a cohort of 406 chronic hepatitis C patients in Belgium and the Netherlands, rates of non-adherence did not differ significantly between IDUs and non-IDUs, and the sustained virological response (SVR) rate was actually slightly higher among the IDUs. Further, there were no significant differences in adherence or response rates between active and recovering IDUs, or those who were and were not participating in methadone maintenance programs. Robaeys and colleagues concluded that “it is no longer justifiable to withhold treatment [from] chronic hepatitis C patients who use intravenous drugs.” In an editorial accompanying Hagan’s report, Brian Edlin and Michael Carden discussed the importance of offering hepatitis C treatment to all patients who could benefit. Treatment of IDUs, they emphasize, “is the battleground on which efforts to control HCV infection in the developed world will be won or lost.”
Coinfection News from Recent Conferences
The annual Conference on Retroviruses and Opportunistic Infections, held February 6-9 in Denver, featured some 70 presentations on viral hepatitis and HIV/hepatitis coinfection. Manel Crespo and colleagues (abstract 81) reported data suggesting that 24 weeks of treatment with pegylated interferon plus ribavirin is sufficient for most HIV/HCV coinfected people with genotype 2 or 3 HCV, and that rapid virological response by week 4 predicts eventual sustained response (some earlier research suggested coinfected patients might benefit from longer treatment). Based on data from the APRICOT study, Douglas Dieterich and colleagues (abstract 856) also found that rapid virological response at four weeks predicted SVR, this time in a study of coinfected patients with harder-to-treat genotype 1. Like Crespo, Alison Uriel and colleagues (abstract 854) reported that prolonged interferon-based therapy was not associated with a higher SVR rate compared with standard therapy. Looking at liver disease progression, Pablo Barreiro and colleagues (abstract 859) reported that successful hepatitis C treatment was associated with less severe liver damage, and that fibrosis scores decreased over time after completing therapy. For conference abstracts and webcasts of presentations, see www.retroconference.org/2006.
The Second International Workshop on HIV/HCV Coinfection took place January 12-13 in Amsterdam. Based on data from the APRICOT and the Spanish PRESCO trial, Vincent Soriano suggested that HIV/HCV coinfected patients may respond better to higher weight-based doses of ribavirin. In the PRESCO study (abstract 36), higher blood levels of ribavirin predicted early virological response at weeks 4 and 12. In another presentation, Kristina Jones (abstract 38) reported that fatigue was twice as common as depression (70% vs 33%) during hepatitis C treatment in a study of 93 coinfected individuals. Fatigue – which was strongly associated with anemia, a side effect of ribavirin – typically developed during the first few weeks of treatment then subsided, while depression came on more slowly. Since fatigue may be misdiagnosed as depression, Jones recommended using standardized diagnostic questionnaires. Those who experience depression can still be treated for hepatitis C with integrated psychiatric care; however, Jones recommended against starting all patients on preventive antidepressants before beginning HCV therapy, since two-thirds of patients never develop depression.
Hepatitis C in Latinos and African Americans
Recent research continues to shed light on racial and ethnic differences in the natural history of chronic hepatitis C. In the February 2006 Journal of Viral Hepatitis, Rita Lepe and colleagues reported data from a retrospective analysis of 1,225 hepatitis C patients – 227 Hispanics, 490 African Americans, and 508 whites – at a hepatology clinic in Chicago. Hispanics had higher liver enzyme (ALT, AST, and alkaline phosphatase) levels and more portal inflammation than whites or African Americans. Hispanics were also more likely than African Americans to develop cirrhosis. Interestingly, given that hepatitis C is usually more aggressive in men, this study found that Hispanic women were more likely to develop cirrhosis than Hispanic men (56% vs 45%). The authors suggested that the high frequency of cirrhosis in Hispanics “could be related to a cofactor such as nonalcoholic fatty liver disease, particularly in Hispanic women.”
In the January 2006 issue of Clinical Infectious Diseases, Brian Pearlman from Emory University discussed HCV infection in African Americans. Hepatitis C is more prevalent among African Americans than in any other racial group in the U.S.: while they make up just 12% of the population, African Americans account for about 22% of chronic HCV cases. Compared to whites, blacks have a lower rate of spontaneous viral clearance and respond less well to interferon-based therapy. For example, Norbert Brau and colleagues reported in the April 2006 Journal of Viral Hepatitis that African American patients with genotype 1 HCV had a lower SVR rate than whites using conventional interferon plus ribavirin (6% vs 14%), but the difference between black and white subjects with genotypes 2 or 3 was not statistically significant. While some data suggest that African Americans have a lower rate of fibrosis progression compared to whites, they are more likely to develop hepatocellular carcinoma once they progress to cirrhosis. In related news, in late March patient advocates criticized Shering-Plough for excluding “hard to treat” African Americans from a Phase II clinical trial of the experimental agent SCH 503034; the company said blacks would be included in a later study looking at higher doses of the drug.
HCV Transmission Update
Sexual activity has traditionally been regarded as a rare route of hepatitis C virus (HCV) transmission, but recent clusters of apparently sexually transmitted HCV, mostly among HIV positive gay men, have led some to reconsider this assumption. At the February Retrovirus conference, Mark Danta from London’s Royal Free Hospital (abstract 86) gave an update on a cohort of 111 HIV positive men diagnosed with acute hepatitis C. The men who contracted HCV had three times more sex partners (30 vs 10) in the past year than men who remained HCV negative. Other significant risk factors included unprotected anal intercourse, fisting, use of sex toys, group sex, sexual activity under the influence of recreational drugs, and concurrent sexually transmitted diseases (STDs). Roel Coutinho and Thijs van de Laar (abstract 87) reported on 29 cases of acute HCV seen in Amsterdam since 2000, all but one in HIV positive gay or bisexual men. Like Danta, the Dutch researchers found HCV infection was associated with fisting and STDs that cause genital ulcers. In the January 1, 2006 Journal of AIDS, Annie Luetkemeyer and colleagues reported on a series of nine cases of acute HCV infection in HIV positive men seen at the University of California in San Francisco. Sex with men was the only risk factor reported by six of these individuals, while two reported unprotected sex with women, and three had concurrent STDs. Another report at this year’s Retrovirus conference concerned acute HCV infections in HIV positive heterosexual women. J. Ghosn and colleagues (abstract 843) analyzed data from 402 patients recently infected with HIV in the French PRIMO Cohort. Two women and three men also had acute HCV. Because none reported “classical risk factors” such as injection drug use or blood transfusions, the researchers concluded that “[t]he only identified risk factor for HCV acquisition was unsafe sex.” For more information, see the April HCV Advocate. Given the uncertainty about sexual transmission, prevention educators should suggest barrier protection—such as latex condoms and gloves—for people who are not in mutually monogamous heterosexual relationships.
In related news, a report in the November 5, 2005 issue of Pediatrics suggested that HCV may be transmitted by sharing jewelry for body piercings. In this case report, a 17-year-old woman who had repeatedly tested HCV negative (when donating blood) became HCV positive about a year after receiving a navel (bellybutton) piercing. She reported no sexual or drug-related transmission risk factors, but often swapped piercing jewelry with a friend who had several transmission risk factors. Prevention educators should include sharing of piercing jewelry in the list of potential risk factors for HCV transmission, along with sharing of personal hygiene items.
Experimental Drug Development
With a pipeline full of hepatitis C drug can-didates, there has been no shortage of both promising and disappointing news. The status of investigational HCV therapeutics was discussed at the second annual Viral Hepatitis Drug Discovery and Development Meeting held in Boston in February. During the past few months, Valeant reported that its experimental agent viramidine was not as effective in a clinical trial as the related drug ribavirin, though it did cause less anemia. Idenix announced that it would modify ongoing Phase IIb trials of its nucleoside analog polymerase inhibitor valopicitabine (NM283) to use lower doses, in an effort to reduce gastrointestinal side effects.
On the brighter side, Vertex announced positive results for its protease inhibitor VX-950. In a Phase 1b trial, four of the eight patients who received VX-950 plus Pegasys achieved undetectable HCV viral load by the end of the 14-day study. And preliminary data from a Phase II study show that all 12 patients with genotype 1 HCV who received VX-950 achieved undetectable HCV RNA after four weeks of therapy. In March, the FDA granted “fast-track” status to another HCV protease inhibitor, Shering-Plough’s SCH 503034 (for information about enrolling in a Phase II trial of SCH 503034 in previous nonresponders, see www.clinicaltrials.gov/ct/show
/NCT00160251). Finally, further back in the pipeline, Peregrine Pharmaceuticals announced that its antiviral agent tarvacin appeared safe and well-tolerated in a Phase I trial including 24 previous nonresponders or relapsers with HCV; tarvacin is a monoclonal antibody that targets phospholipids and stimulates the immune system to destroy virus particles and infected cells.
Herbal remedies are commonly used by people with hepatitis C but, like pharmaceutical drugs, some can cause potentially dangerous side effects. In February, Australia’s Therapeutics Goods Ad-ministration (equivalent to the U.S. FDA) required that preparations containing black cohosh (Actaea racemosa or Cimicifuga racemosa) must carry a warning about liver toxicity (although it is not certain this herb was the culprit in the few reported cases of liver damage); black cohosh is commonly used to manage menopause symptoms such as hot flashes. In related news, researchers from the University of Toronto reported in the February 15, 2006 issue of Free Radical Biology and Medicine that phytochemicals in green tea may also cause liver damage at high doses. In mice, low doses of certain polyphenols and catechins in green tea had an antioxidant effect, but high concentrations caused liver injury. While the amounts of these chemicals in brewed tea are safe, consumers should be wary of high-dose supplements.
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The Hepatitis C Support Project has launched a new program to help trainers with their educational efforts. Included are tools to help you educate others. Listed below are various files to download and use for your training needs.
1. One Day 2006 is the entire slide presentation that we are currently using for our trainings. Included in the slides are notes – just click on the note function. Format: MS PowerPoint
2. Overview of HCV in English is a template for general information about hepatitis C in English. Included in the slides are notes – just click on the note function. Format: MS PowerPoint
3. Overview of HCV in Spanish is a template for the above file in Spanish. Format: MS PowerPoint
4. HCV Myths is a presentation about various myths about hepatitis C. Included in the slides are notes – just click on the note function. Format: MS PowerPoint
5. Game: Hepardy contains a sample game board, questions/answers. Format: MS Word.
6. Crossword Puzzle: Puzzle #1 and answers Format: Adobe pdf.
To access these files just cut and paste the following into your browser:
Your browser must be enabled for ftp.
To enable ftp in Internet Explorer
1. In internet explorer, click on tools, internet options, advanced
2. Then click on Enable folder view for ftp
3. Scroll down
4. Click on Use passive ftp
Please keep checking back – we will be posting additional files to help educate people about hepatitis C. If you have any suggestions for information that will help you, please email email@example.com
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