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Making a Difference in Your Community

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 alanfranciscus@hcvadvocate.org with your suggestions.

Alan Franciscus
Editor-in-Chief, HepSquads

To learn more about HCSP Trainings and the upcoming schedule, click here.

Vol 6: October, 2004
Table of Contents

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A Simple Guide to Effective HCV Presentations: Part 1
Alan Franciscus

ONE OF THE MOST DIFFICULT tasks as an HCV educator is to present information in a way that encourages learning and understanding of the complexities surrounding hepatitis C. In general, presentations can be a profound experience for the presenter as well as the audience.

Information can be presented in a variety of ways. HepSquad trainers typically use two common formats. One is the formal lecture or didactic (educational or teaching) style. The second presents information in an interactive environment such as in a workshop. These types of presentations require different teaching techniques. Since techniques differ depending on the format, it is common for a person to excel at one type of presentation but not the other. This is most likely due to the experience and comfort level of the presenter.

This article is part one in a series of tips for HepSquads trainers to help them improve their educational efforts. Part one will focus on general information about presenting in a workshop environment. HCSP Train the Trainer workshops, held across the United States, are two-day workshops conducted in an interactive format, usually limited to 50 people or less. But many of the principles described in this article can be applied to any type of educational workshop. Future articles in this series will offer more in-depth information to provide trainers with practical tools. It should be noted that people’s teaching styles differ, just as people have different ways of learning. This is by no means a definitive guide for presentations, but a compilation of ideas that have worked for our trainers. I would be interested in hearing what works well for you or how you convey information on the subject of hepatitis C. I am especially interested in interactive exercises, so if you have any to share, please contact me at alanfranciscus@hcvadvocate.org.

Beginning a Training Session
The beginning of a presentation is one of the most important components of any successful teaching session. Your introduction sets the tone. This is usually the most difficult part of the entire presentation, since the presenter is setting the goals of the training and trying to win over the participants. As the saying goes, “you never have a second chance to make a first impression,” so use this opportunity well.

Classroom Environment
The room where you teach should be comfortable (not too cold or hot), with good lighting and plenty of room for participants to move around or break into smaller discussion groups. Make sure you can be heard by everyone in the room. You may want to use a microphone, but be careful that you still connect with the audience. Too much technology can sometimes interfere with achieving the rapport you need to establish with your audience.

The Presenter - BE REAL!
The first part of the presentation establishes your expertise. You can mention a degree or title you have earned, the work that you do, and/or how the topic has affected you. A word of caution, though: Don’t ramble on about yourself. Instead try to make your introduction brief, interesting, and to the point, and connect it to the topic at hand.

Some examples:
• I am a counselor at a local community-based organization that provides support and services for people with hepatitis C.
• I am a street outreach worker living with hepatitis C.
• I am a medical provider giving care and support to people living with hepatitis C.
• I am a person living with hepatitis C. HCV has greatly affected my life and I want to do what I can to help provide support and services for other people with hepatitis C.

Tell your audience the purpose of the workshop. Be as specific as you can.
For example:
• This workshop is geared towards street outreach workers, and I’m going to talk about the ways you can catch hepatitis C as well as ways to prevent transmitting hepatitis C to others.
• The goal of this workshop is to provide you with a basic understanding of hepatitis C.
• The goal of this workshop is to provide you with counseling messages that you can use with your clients.
• The goal of this workshop is to provide you with information that will make it easier to communicate with your patients.

A presenter should know the audience and dress accordingly. Wear comfortable and appropriate attire that will not offend anyone. The same applies to the use of language. Project your voice clearly (loud but not too loud) and pace your presentation. This will help people to absorb and understand information and allows time for questions.

Connecting with the Audience
People listen, connect with, and care about a presenter who is willing to put himself or herself out in front of a group of people. It is intimidating to be in front of strangers, but remember that most people in a workshop have given presentations, are aware of how vulnerable you are, and will try to make you feel as comfortable as possible. Try to put your physical person out in front of the audience—don’t hide behind a lecture stand or notes. Make sure your notes don’t block your face. Speak in a conversational tone that is evenly paced and spoken with authority. When you are speaking, avoid standing in one place. Move around (but not too much) and make eye contact with people in the audience. Look for friendly faces and concentrate on those people first. After a while, you will be able to read body language so well you will be able to know when to reiterate key points or simply ask if the audience understood the information presented.

Questions are an essential aspect of the teaching process. Questions give you valuable information about your audience and can give you feedback as to whether or not your presentation is coming across clearly. The question and answer process can build greater rapport with members of your audience.

Encourage questions from audience members who are less vocal or less likely to speak up. Be sure to make eye contact while listening to and answering questions. Also, try to anticipate what kinds of questions you are likely to get. It is important to have a thorough knowledge of the topic in order to handle any questions. It is easier to answer a question if you have prepared for it in advance. If you do not know the answer to a question, say so. Never try to bluff your way through an answer. Your audience will know if you are bluffing, and this can lower your credibility. People will respect a response of “I don’t know” or “I’ll have to get back to you with an answer.” However, if you do choose the latter, make sure you get back to the person asking the question.

Encourage interaction among the audience. Sometimes the most valuable information is what the participants hear from others in the group. People respond and learn from their peers and “real world” situations.

Setting Ground Rules
There is nothing worse than having a chaotic workshop. It helps to have everyone set the ground rules. This simple act gives your audience more ownership in the group. People are more likely to adhere to guidelines they have helped create rather than to those set by someone else. The most important issues that need to be decided are cell phone usage and cross-talking. I have never conducted a workshop where the audience wants cell phones ringing or people cross-talking or carrying on side conversations during the presentation. These can disrupt the entire workshop.

Content and Timing
Focus the content of your presentation on the major points you want to convey. Do not try to cover too much material. Stick to the main points you want to cover. During the presentation, if someone asks a question that is not pertinent to the topic, would require too much time to cover, or may confuse people, don’t be afraid to say:
• Your question is important, but I’m afraid we just don’t have enough time to cover it in this workshop.
• The short answer is _________. Unfortunately, we can’t really answer the question in the detail it deserves with the remaining time.
• I’m afraid that we don’t have time to discuss your question. If you like, we can talk about it privately during a break or after the workshop.

If there are too many questions, let the audience know that time is running short. However, limiting audience questions should be discouraged, since it can interfere with the crucial interactive nature of workshops. It is perfectly reasonable to ask people to hold their questions until the end of the presentation or a particular topic you are discussing. Your audience also wants to stay on track and will respect your efforts to stay focused.

Use Humor
Use humor, but use it wisely. When the session is becoming overwhelming or intense, add some levity and try to move on. There is nothing worse than gloom and doom when you are trying to motivate people to make positive changes.

Speak with Passion
Use passion when you speak. Speaking from the heart can be powerful. People are usually moved by hearing from someone who cares enough to share his or her feelings.

The Medium
Convey information in as many different forms as possible, such as written materials, lecturing, and group discussion. It is best to mix technology forms (Power- Point, overheads, flip charts, props, and visuals). The more variety you use, the more the audience will be engaged. However, be careful that you don’t overwhelm people with too many visuals. Another rule of thumb is be prepared for technology glitches. It is inevitable that equipment will not work, so prepare a backup plan that can replace a presentation that depends on technology. For example, a simple question and answer session can be rewarding for you and your audience. A back-up plan can transform a potential disaster into a more powerful experience if the presenter really knows the topic.

Lastly, make sure you reiterate and summarize any important information that you want your audience to learn. This can be accomplished by asking the audience for “take home” points. You may also want to restate the goals that you set at the beginning of the presentation.

Future HepSquads articles will provide more indepth discussion of the topics in this article as well as other tools to help in your efforts. With time and practice, you will increase your skills and comfort level. Before you know it, you may find this a rewarding and enjoyable experience.

A special thank you to Lucinda Porter for her advice and help with this article

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News Roundup
Liz Highleyman

On September 13, California Governor Arnold Schwarzenegger signed SB 1159, a bill that allows cities and counties to authorize the sale of up to 10 syringes in pharmacies without a prescription. Sharing needles to inject drugs is one of the primary routes of hepatitis C, hepatitis B, and HIV transmission. Studies show that expanded availability of clean needles—either through syringe exchange programs or through over-the-counter sales—significantly reduces infectious disease transmission without increasing rates of drug use. “My administration supports this measure because it will prevent the spread of HIV, hepatitis, and other blood-borne diseases among injection drug users, their sexual partners, and their children,” Schwarzenegger said. Only four states now prohibit the non-prescription sale of syringes.

At the same time, the governor vetoed AB 2871, a bill that would have made it easier for local governments to operate needle exchange programs. Currently, in order to run a needle exchange, cities and counties must declare a public health emergency, which must be renewed every 2-3 weeks. According to bill sponsor Representative Patty Berg (DEureka), the proposal was intended to reduce “red tape.” A dozen California cities and counties currently operate needle exchange programs, but more have said they would do so if the law were changed.

A German study published in the July issue of Hepatology found that hepatitis C treatment is “reasonably safe and sufficiently effective” in HCV positive individuals receiving methadone maintenance therapy. The study included 100 subjects, 50 on stable methadone maintenance for at least six months and 50 who had not used illicit drugs or opioid substitution for at least five years. All were treated with Peg- Intron plus ribavirin. During the first eight weeks of treatment, patients on methadone were five times more likely than non-methadone control subjects to either ask to stop HCV therapy or to discontinue due to nonadherence (22% vs 4%). After eight weeks, however, rates of discontinuation were similar (10% vs 8%, respectively). Treatment discontinuation due to side effects or virological failure was somewhat more common in the methadone group (20% vs 12%), but the difference was not statistically significant. No serious psychiatric events occurred in either group (although 15 patients in the methadone arm and 10 in the non-methadone group took antidepressants during therapy). End of treatment response rates were 50% in the methadone group and 76% in the non-methadone arm. After 24 additional weeks of follow-up, however, the corresponding sustained virological response (SVR) rates were 42% and 56%, indicating that the relapse rate was higher in the non-methadone group. (Since relatively few patients completed a full course of treatment, the difference did not reach statistical significance.) Although the response rate was lower among patients on methadone—which the researchers attributed to lower “compliance and reliability”— a substantial proportion did achieve SVR, supporting the recommendation in the latest National Institutes of Health consensus statement that hepatitis C patients receiving methadone should be considered for therapy on an individual basis.

Data from two major studies of hepatitis C treatment in patients coinfected with HIV were published in the July 29 issue of the New England Journal of Medicine, followed by a third related study in the September 3 issue of AIDS. In Roche’s APRICOT trial, 860 HCV/HIV coinfected patients were randomly assigned to receive standard interferon plus ribavirin, Pegasys monotherapy, or Pegasys plus ribavirin for 48 weeks. After 72 weeks, 40% of patients treated with Pegasys / ribavirin achieved SVR, compared with 20% of those receiving Pegasys monotherapy and 12% of those receiving standard interferon/ribavirin. Among patients with genotype 1, the corresponding rates were 29%, 14%, and7%; for those with genotypes 2 or 3, the rates were 62%, 36%, and 20%.

Study ACTG 5071 included 133 participants randomly assigned to receive standard interferon or Pegasys, both with escalating doses of ribavirin. After 72 weeks, the overall SVR rates were 27% for Pegasys/ribavirin and 12% for standard interferon/ribavirin. Among subjects with genotype 1, the corresponding SVR rates were 14% and 6%; for those with genotypes 2 or 3, the rates were 73% and 33%, respectively.

The Spanish study reported in AIDS included 95 coinfected patients assigned to receive either standard interferon or Peg-Intron plus daily ribavirin. The overall SVR rates were 44% for Peg-Intron/ribavirin and 21% for standard interferon/ribavirin. Among those with genotypes 1 or 4, the corresponding SVR rates were 38% and 7%; among subjects with genotypes 2 or 3, 53% and 47%, respectively, achieved SVR. These are the highest SVR rates yet seen in a coinfected population, and were particularly impressive for patients with genotype 1.

It remains unclear why the SVR rates varied in these studies. Although the differences in response rates between the various treatment arms were statistically significant in all three trials, it is not possible to make comparisons between them due to different study populations and trial designs. While a good end-of-treatment response rate was seen in ACTG 5071, the relapse rate was high for subjects with genotype 1, perhaps because the study started patients at a lower initial dosage of ribavirin. In addition, ACTG 5071 included more blacks (about 33%) than APRICOT (about 10%), a group that responds less well to interferon-based therapy. Interestingly, both brands of pegylated interferon yielded impressive results—Pegasys in APRICOT and Peg-Intron in the Spanish study. However, APRICOT was much larger than the other two trials, and thus has more statistical power.

Based on promising results such as those seen in the APRICOT trial, Hoffman La Roche in September asked the U.S. Food and Drug Administration (FDA) to approve Pegasys plus ribavirin for the treatment of HCV/HIV coinfected individuals. The FDA gave the request “fast track” status, meaning the company’s application will be considered more quickly. It is estimated that some 300,000 Americans are currently coinfected with HCV and HIV, and there is, at present, no treatment regimen approved for this population. The Pegasys/ribavirin combination is approved only for the treatment of hepatitis C alone, although many doctors already use this regimen for their coinfected patients.

In related news, in July Roche requested that the FDA approve Pegasys for the treatment of chronic hepatitis B. The three medications currently approved for hepatitis B treatment are standard interferon alfa-2b (Intron-A), lamivudine (3TC or Epivir-HBV), and adefovir (Hepsera). Clinical trials have shown that Pegasys works better than either the older standard interferon or lamivudine in patients with both HBeAg-positive and HBeAg-negative variants of HBV. In a study reported in the September 16 issue of the New England Journal of Medicine, 537 subjects with HBeAg-negative HBV (which is more difficult to treat) were assigned to receive Pegasys monotherapy, lamivudine monotherapy, or both drugs together. After 48 weeks of therapy and a 24-week follow-up period, 43% of patients treated with Pegasys alone achieved HBV viral loads less than 20,000 copies/mL, compared with 29% of those receiving lamivudine alone. Those who received both drugs had a response rate (44%) similar to that seen in the Pegasys monotherapy group. Patients receiving Pegasys were also more likely to achieve normalized ALT (59% vs 44%) and disappearance of HBV surface antigen. Roche said it expects the FDA to grant approval of Pegasys for hepatitis B in early to mid-2005.

Over the past 10 years, outcomes for liver transplants in people with hepatitis B have improved dramatically, according to a study published in the August issue of Liver Transplantation. Today, post-transplant survival is similar in HBV positive and HBV uninfected patients. Much of this success is due to the introduction in 1990 of hepatitis B immunoglobulin (HBIG), injected antibodies that prevent recurrence of HBV infection of the new liver graft. The advent of lamivudine has also improved survival rates.

Unfortunately, there is no equivalent antibody therapy to prevent post-transplant recurrence of hepatitis C, which is the most common reason for liver transplants in the U.S. Some past research (including a recent analysis of the United Network for Organ Sharing transplant database) suggested that liver transplantation is less successful in hepatitis C patients than in people with other types of liver disease, primarily because HCV usually reinfects the new liver soon after the procedure. According to a study in the September issue of Liver Transplantation, however, long-term transplant outcomes are similar in patients with hepatitis C and those with liver failure due to other causes. Researchers examined the medical records of 165 HCV positive patients who underwent liver transplantation; subjects were followed for up to 12 years. The most common cause of transplant failure or death among these patients was HCV recurrence. Nevertheless, 10-year outcomes in the hepatitis C patients were similar to those in patients undergoing liver transplants for other reasons. After 10 years, liver graft survival rates were 64% for HCV positive individuals, compared with 51% for uninfected patients. Poor outcomes were associated with older age of both the recipient and the donor, high HCV viral load, and decreased immune function. “Long-term outcomes, specifically patient and liver graft survival, are as good for patients with hepatitis C as they are for patients with almost any other cause of liver disease,” study author Michael Charlton told Reuters Health.

In related news, a recent Spanish study published in the September issue of Hepatology showed that post-transplant HCV recurrence was more severe when using livers from living donors rather than cadavers. Researchers analyzed 116 consecutive patients undergoing liver transplantation at a single medical center. After a median follow-up of about two years, severe hepatitis C recurrence (indicated by the development of biopsy-proven cirrhosis or clinical symptoms of liver decompensation) occurred in 22% of patients overall. But the rate of severe recurrence differed significantly based on the source of the donated liver: 18% (17 of 95 cases) among those who received cadaver livers, compared with 41% (9 of 22 cases) among those who received livers from living donors. The researchers could not say with certainty what factors accounted for this difference, but suggested that higher rates of biliary complications might contribute to fibrosis, or that liver regeneration, when using a graft from a living donor, might promote HCV replication.

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