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Transcript of The Body's Live Chat on Fuzeon (T-20, Enfuvirtide)

Sponsored by Roche and Trimeris

October 25, 2004

Louise Perry


Greg Braxton
Following is the full transcript of The Body's live chat on Fuzeon (T-20, enfuvirtide), which took place on Oct. 25, 2004, at 9 p.m. Eastern Standard Time. The chat was sponsored by Roche and Trimeris, the makers of Fuzeon, moderated by The Body's editorial staff and hosted by Louise Perry, a registered nurse experienced with Fuzeon, and Greg Braxton, an HIV-positive person currently taking Fuzeon as part of his HAART regimen. This transcript has been edited slightly for grammar and clarity. In rare occurrences, additional follow-up information was obtained from the speakers after the chat's conclusion.

This is the second chat on Fuzeon that The Body has moderated this year; to see the transcript of the first chat, click here.

Thank you for joining this interactive live chat at TheBody.com! During today's chat, we will be discussing Fuzeon (T-20): how it works, how to make injections easier and much more. This chat has been sponsored by Roche/Trimeris, the makers of Fuzeon.

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Moderator 1: Thank you all for coming to The Body's live, interactive chat on the HIV medication Fuzeon, also known by the abbreviation T-20 or its generic name, enfuvirtide.

Moderator 1: The chat will begin shortly; please feel free to begin submitting your questions!

Moderator 1: Throughout the chat, we hope you'll also answer the poll questions you see on the left side of your chat screen. We'll post the poll results along with the full chat transcript later this week.

Moderator 1: Let the chat begin! Please feel free to submit any questions you have for our two speakers: Louise Perry, a registered nurse experienced with Fuzeon, and Greg Braxton, an HIV-positive person currently taking Fuzeon as part of his HAART regimen.

Moderator 1: Before our two speakers start to answer your questions, though, I'd like to ask them to say a little something about who they are and why they're here tonight. Louise, would you like to go first?

Louise Perry: Hello! I'm a nurse who has specialized in HIV and HIV clinical research since 1988. I am a Senior Research Nurse at Emory University School of Nursing, and see patients two days a week at the Infectious Diseases Clinic on Ponce in Atlanta. I'm dual board certified in HIV and in clinical research. I've participated in TORO 1 and 2 [the primary clinical trials that led to the approval of Fuzeon] and the Fuzeon early access program. I've had the pleasure of traveling the southeast, for the past year, as a Fuzeon Clinical Specialist presenting programs to M.D.s, mid-level providers, R.N.s in private practice, university-based hospital clinics, ASOs [AIDS service organizations] and ANAC [Association of Nurses in AIDS Care] programs. Additionally, I've had the privilege of instructing approximately 100 patients about the infinite possibilities in health by placing them on Fuzeon. Thank you for this opportunity to join you tonight to talk about Fuzeon!

Moderator 1: Thanks Louise! Greg, anything you'd like people to know about you?

Greg Braxton: I was diagnosed with AIDS in 1994. At the time, I was suffering from severe alcohol and drug addiction. Due to my addiction I was not adherent to my HIV meds. As a result, I became resistant to all available meds at the time. I never made any long-term plans because I did not expect to live very long. I got some hope when I [heard] the news that Fuzeon was in clinical trails. It is working for me today and I am able to plan my future. I just graduated with a B.A. degree.

Moderator 1: Thanks Greg! I think we're ready to start tackling everybody's questions. Fire away! (Remember: This is a moderated chat, so you won't see your question in the chat room until one of the speakers actually answers it.)

Moderator 1: Our live Fuzeon chat has begun; please continue to submit any questions you may have for Louise Perry, a registered nurse experienced with Fuzeon, or Greg Braxton, an HIV-positive person currently taking Fuzeon as part of his HAART regimen.

Moderator 1: Throughout the chat, we hope you'll also answer the poll questions you see on the left side of your chat screen. We'll post the poll results along with the full chat transcript later this week.

Moderator 1: Please excuse this brief delay! Our speakers are currently typing answers to your questions.

Original message from rice+beans: Do you ever have anyone inject Fuzeon for you? I just don't know if I could do that myself.

Reply from Greg Braxton: No. Unfortunately I haven't been able to convince my friend to do that. However, I have no problem doing it myself. I was a little nervous at first, but after the first couple of days it was not a problem.

Moderator 1: Our live Fuzeon chat has begun; please continue to submit any questions you may have for Louise Perry, a registered nurse experienced with Fuzeon, or Greg Braxton, an HIV-positive person currently taking Fuzeon as part of his HAART regimen.

Original message from Zoe Gold: It's easy to take pills in public, but how about injections?

Reply from Greg Braxton: That can be a little tricky. I try not to do that, but sometimes it is unavoidable. In that case I try to find somewhere private. The washroom always works well.

Original message from Roger: Hello. I have been on Fuzeon for a year and my concern is about the lumps I have developed at the injection sites. They will not go away and I am running out of areas to inject. I inject in a roll of fat (the only fat left on my body) around my waist. Others may have the same concern. Other than that, Fuzeon has been a lifesaver for me. Thank you in advance. Roger.

Reply from Louise Perry: [After the chat, Louise clarified and added new details to her original response; the revised version follows.] Roger, I agree with you; this drug can be a miracle drug! Two really important items to check: Do you rotate as many sites as possible (not just using your waist)? Do you utilize a massager after every injection for 10-20 minutes? For help in locating additional injection sites and tricks for injecting in thin patients, please see the nurse in your clinic.

Moderator 1: We're in the thick of our live chat on Fuzeon! Please continue to submit any questions you may have for Louise Perry, a registered nurse experienced with Fuzeon, or Greg Braxton, an HIV-positive person currently taking Fuzeon as part of his HAART regimen.

Original message from SaminKS: Has anyone become resistant yet?

Reply from Louise Perry: [After the chat, Louise clarified her original response; the revised version follows.] There is no laboratory assay to test for resistance, but yes, patients have become resistant.

Original message from rice+beans: Greg, what other HIV medications are you taking?

Reply from Greg Braxton: Presently I am on a phase 2 trial study of a new protease inhibitor called TMC114. This is boosted by Norvir [generic name: ritonavir]. I am also taking Viread [generic name: tenofovir] and Epivir [generic name: lamivudine; also known as 3TC]. This combination is working well for me. I did see results from the Fuzeon even before I started the experimental regimen.

Original message from earthpen: Will there be another formulation of Fuzeon available in the near future that is oral?

Reply from Louise Perry: [After the chat, Louise clarified her original response; the revised version follows.] I so wish there was an oral formulation!! Unfortunately, because the protein is so large, at this time there is no way possible to deliver this drug orally. Sorry!

Moderator 1: Please excuse this brief delay! Our speakers are currently typing answers to your questions.

Moderator 1: While you're waiting for the next response, you may want to pass the time answering the poll questions you see on the left side of your chat screen. We'll post the results along with the full chat transcript later this week.

Original message from 21JumpSt: Will a hot/cold pack minimize injection site reactions? Which? Hot or cold?

Reply from Louise Perry: [After the chat, Louise clarified her original response; the revised version follows.] Great question! Please try your own research. Some patients apply ice prior to injections to decrease the sensation, and apply ice after their injection to prevent any discomfort. Other patients apply heat after their injections to help absorb their medicine. See which one works best for you. The best defense against injection site reactions (ISRs) is to commit to rotating through as many injection sites as possible and, importantly, to commit to using a massager on your injection site for 10-20 minutes.

Original message from BlueMoon: How bad do the injection [site] reactions look? Is it something other people would notice or is it just painful for you?

Reply from Greg Braxton: My [injection] site reactions are generally quite mild. Occasionally I will have some minor swelling and a bruise. This may happen maybe once a month and only lasts for a few days. Right now I cannot actually see the injection sites. When I do see them, they may look like small red spots about the size of a dime. They are not bad enough to cause me not to go swimming. People usually don't pay attention to them unless they know what they are looking for. Other users may have a different experience.

Original message from pinky: I've heard you can now inject twice at the same time as oppose to once every 12 hours -- please let me know [if this is true].

Reply from Louise Perry: WOW! You are certainly up on things! Roche/Trimeris are doing a study to see how effective and safe two injections once a day would be, but it is still in clinical trials! They would want you to wait until they have completed their studies before you try this delivery. OK?

Moderator 1: You're sitting in on our live Fuzeon chat -- thanks for coming! Please continue to submit any questions you may have for Louise Perry, a registered nurse experienced with Fuzeon, or Greg Braxton, an HIV-positive person currently taking Fuzeon as part of his HAART regimen.

Original message from Iceberg: Does Fuzeon need to be taken with food?

Reply from Louise Perry: Good question! Fuzeon can be taken in whatever way YOU wish! What's your preference?

Original message from Cookie: Hey Greg, I read your story and it's really incredible. Did you ever use intravenous drugs? If so, wasn't it hard for you to inject?

Reply from Greg Braxton: Great question Cookie. Most people don't think to consider that. I was not an injection drug user so I did not have that problem. It could be a trigger for a few, especially if they are early in recovery. I don't think it will be a problem for most injection drug users because the whole process is so much different. Of course, this should be discussed with the physician if someone suspects it may be a problem.

Original message from mariamaria: I'm getting a little fed up with being told that I'm causing my own ISRs by not injecting properly. I was trained by the people who ran the trials in San Francisco. I was retrained (and learned nothing new) about a year after starting Fuzeon. What is being done to find the precise cause of the nasty, painful, sometimes debilitating ISRs many of us get?

Reply from Louise Perry: I'm sorry that you are having such a difficult time with your injections! You are not causing these ISRs; the protein you are injecting is large and can cause skin reactions. Your technique is important and you've double-checked that possibility. Good! Rotation of sites is as important as using a massager for 10-20 minutes after every injection. For additional assistance with successfully managing ISRs, please schedule a nursing visit at your clinic. Congratulations for being on Fuzeon for a year!

Original message from dumont: How do you remember to take your meds every day? That's a problem that I tend to have. I've only been on my meds for six months. Do you have any special tricks?

Reply from Greg Braxton: For me, having a routine is the key. You have to find a routine that works for you. There are many tricks you can do. For example, if you take meds just before bedtime, you could always place a shoe on the bed. My short-term memory is not what it used to be so I have to create a habit that I do every day. My meds are in the same place and I take them in the same order at the same time. I very rarely forget, but it does happen. If it does, I don't beat myself up, but figure out why I forgot and make adjustments. Hope that helps some.

Original message from sammy: I have been taking Fuzeon for five months and my viral load and T cells have only changed by a small 10% both ways. Does it take a long time for the Fuzeon to work?

Reply from Louise Perry: Are you feeling discouraged? Here you've done these injections twice a day and your counts are not what you expected! Hang on! There are some patients who respond slower than others, but many reach their virologic and immunologic peaks at six months! E-mail us next month with your great new news!!!

Original message from Cookie: How do you travel with a drug like this? I mean, will customs let you back into the country? And will they let you on the plane with needles? And what if the police stop you?

Reply from Greg Braxton: Since I have been on Fuzeon, I have had to travel by plane three times in the United States. I have had no problem at all. Fuzeon [comes with] a very nice traveling case to hold meds, needles, a small used needle box and other supplies. It is very compact and works well. There is also a card, which your doctor can sign to authorize the needles. I never had to show my card. It went through the X-ray machines with no problem. I have heard stories of others who traveled out of the country and they also report having no problem.

Original message from Dutch: Is it worldwide that Roche decided to change the syringes? I do miss the feature of the old ones that had this spring mechanism where the needle shot back into the syringe at the end of the injection. But, other than that, I find the present mechanism of the new ones fine, except that I have to withdraw the needle and always some precious Fuzeon gets lost, besides the fact I never have the feeling I injected all the medication since some always stays behind in the top of the syringe. Perhaps this is not important? Thanks for your comments.

Reply from Louise Perry: [After the chat, Louise clarified her original response; the revised version follows.] Dutch, how wise you are! My suggestion is this: Prior to injecting drug, pull air back in your syringe 1/10th of a cc, and then inject. This will keep you from losing any drug prior to injecting and it will decrease any chance of the medicine burning your skin upon injection. Push your plunger all the way to the hub of the needle and you will have absorbed all the medicine. Are you able to inject at least 0.9 cc? If yes, you are getting enough medicine.

Original message from mr_man: Why did you decide to take Fuzeon? Was it your only option?

Reply from Greg Braxton: I was out of options. I had been through just about every regimen. None worked because I was not adherent to any regimen. After about a year off the street drugs and taking my meds religiously, I was ready for Fuzeon. It actually changed my life before I started taking it. I started to make long-term plans and [went] back to school.

Original message from Joe: Ms. Perry, you think this drug has more or less side effects than other HIV medications?

Reply from Louise Perry: Hey Joe! Great question! As a researcher who has participated in the clinical research of most of the HIV drugs, I think this drug has many fewer side effects than all the other drugs! The 96-week data showed patients on Fuzeon and other antiretrovirals had less side effects than those patients just on antiretrovirals!

Original message from Joe: I just can't get myself to inject. I tried but couldn't. How did you get yourself to do it? I can't find someone to help. Are there nurses who will help?

Reply from Greg Braxton: That is a difficult situation. The best advice I can think of is to consult with your doctor about it. He may be able to refer you to someone who can do it for you or, even better, help you to overcome your fears. There are others who feel the same way you do so you are not alone. I encourage you not to give up hope. I think you will eventually be able to do it.

Moderator 1: This chat will be wrapping up in about 10 minutes! If you've missed any of the chat so far, keep in mind that a full transcript will be available on TheBody.com later this week.

Moderator 1: In addition, I hope you'll answer our final poll, which you should be able to see on the left side of your screen. We'd love to know what you thought of this chat!

Original message from aquaCfoam: Greg, are you in a Fuzeon support group?

Reply from Greg Braxton: Yes! It does help. I have picked up a lot of great tips and also am developing some friendships. It also feels good to give input to others who are new [to] Fuzeon or considering going on it in the near future. Also, the food is great!

Original message from Cookie: How do I find out about a support group in my area for Fuzeon. My doctor doesn't know of any. Any virtual support groups?

Reply from Louise Perry: Cookie, great question! Support is so important! Would you be willing to start a group at your M.D.'s? Do you have any AIDS service organizations in your city? Do you have a social worker you could talk to about forming a group? My last suggestion would be your pharmacy: We have StatScript (a specialty pharmacy) in Atlanta and we meet monthly to encourage, motivate, share science and discuss specific questions about ISR management.

Moderator 1: We'll be wrapping up this chat within the next several minutes; if you have any more questions about Fuzeon you'd like answered, please submit them now!

Moderator 1: And again, I hope you'll answer our final poll, which you should be able to see on the left side of your screen. We'd love to know what you thought of this chat!

Original message from Nixon: Has anyone ever been hospitalized for the injection site reactions?

Reply from Louise Perry: [After the chat, Louise clarified her original response; the revised version follows.] Nixon, hey! Thanks for the question. Approximately 1-3% of people have had to discontinue their use of Fuzeon due to injection site reactions. I am not aware of any patients that have required hospitalization due to ISRs. Our suggestions are these to manage your ISRs: use good handwashing, [use] good injection techniques, religiously rotate ALL your anatomical sites and massage with a vibrator for 10-20 minutes after EVERY injection!

Moderator 1: I'm afraid we only have time to answer one more question; my apologies to all of you who have submitted excellent questions we couldn't get to tonight!

Original message from hiver1964: Greg, what made you want to talk about this tonight? I could never do this!

Reply from Greg Braxton: Thanks for asking. This is one of the ways I am able to accept my condition. Just like I talk about my addiction to other recovering addicts, I talk about [how] I manage and overcome obstacles related to HIV infection. I really believe that this helps me more than those I try to serve. Also, it is my way of chipping away the stigma associated with HIV. I do this by addressing non-HIV audiences as well. It took me many years to get to that point. Please never allow anyone to pressure you into talking about anything you feel uncomfortable with. You will know if and when the time is right.

Moderator 1: Our interactive chat on Fuzeon has now concluded. Thank you, Louise and Greg, for taking the time to answer all these questions!

Moderator 1: And a shout-out to everyone who asked questions or took the time to join our chat tonight: Thank you for making this such an informative discussion!

Greg Braxton: This was truly my pleasure. Thank you for allowing me the opportunity. I also appreciate all of the great questions. I want to personally thank all who submitted questions as well as those who followed along.

Louise Perry: DITTO! All of you had great questions, and it was a privilege to share thoughts and experiences with you. The tips I've shared have been passed on to you from other patients, and they wish you great success with this drug!

Moderator 1: A full transcript of this chat, including the results of the polls you answered, will be available on TheBody.com later this week.

Moderator 1: To those of you whose questions we were unable to answer tonight: I'm sorry we couldn't get to you! Please try visiting The Body's Fuzeon page at www.thebody.com/treat/fuzeon.html for more information, or ask our experts at www.thebody.com/experts.shtml.

Moderator 1: You can also visit Roche/Trimeris' Fuzeon Answer Center at www.fuzeon.com.

Moderator 1: Thank you all again; enjoy the rest of your night!


Copyright © 2004 Body Health Resources Corporation. All rights reserved.


  
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