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Louise Perry is a nurse who specializes in HIV and has extensive Fuzeon experience.


Greg Braxton has been taking Fuzeon since 2002 and will share his first-hand experience.

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Profiles

Louise Perry, R.P.N.

Louise Perry is a senior research nurse for the KHARMA Project, a study being conducted by the Emory University School of Nursing to reduce high-risk activities and improve HIV treatment adherence among HIV-positive women. Since January 2003, she has been a consultant for Roche, delivering presentations on fusion inhibitors and Fuzeon (enfuvirtide, T-20) to physicians, nurses and other healthcare workers in private practices, university clinics and AIDS service organizations throughout the southeastern United States. She has held a range of research and clinical positions over the past two decades, including a recently concluded three-year stint as Clinical Director of Infectious Diseases Research at Emory University.

Ms. Perry graduated from the University of Virginia School of Nursing in 1968, and completed 40 hours of graduate-level physical assessment at the Georgia State University School of Allied Health. She has been licensed as a registered professional nurse in Georgia since 1973, is a certified practitioner in gerontology and is nationally board-certified in HIV/AIDS and clinical research. She has previously served as a chapter president for the American Association of Critical Care Nurses, a member of the American Heart Associationís Board of Directors and a member of the Executive Committee for AID Atlanta, the largest AIDS service organization in the southeastern United States.

Greg Braxton

With a 27-year history of drinking, using drugs and sleeping with hundreds of women, Greg Braxton's AIDS diagnosis in 1994 came as no surprise. He'd blown through a string of careers because of his addictions: steel mill worker, Chicago police officer, taxi driver, bus driver. At the time of his diagnosis, he was still struggling with his crack cocaine addiction, which would often cause him to neglect to take his meds.

A Downward Spiral
This destructive cycle went on for several years, during which time he was frequently admitted to his hospital's intensive care unit. "I was extremely sick, and a few times they didn't know if I would live or die," Greg says. "I was always able to pull myself together, but would get sick again, with pneumonia, histoplasmosis and other opportunistic infections."

At one point, he even suffered a heart attack, although this didn't deter him from his use of crack. He just thought he'd accidentally taken too much at once. It wasn't until the summer of 2001 that Greg finally got his addictions under control. Although he had entered substance abuse treatment previously, this time, he says, something "clicked." He managed to stay focused and struggled to change his life. With a laugh, Greg recalled the real reason he entered treatment that final time: He was trying to escape a drug dealer he owed money.

Greg spent nine months in one of the largest substance abuse programs in Chicago, Haymarket Center. Once he completed the program, he was placed into a transitional community living program called AIDS Care. Since then, Greg has been in an independent-living group home that provides him with the support and structure he says he needs in order to fully recover from so many years of drinking and drugging.

"I couldn't have stayed sober without it," Greg says. "I needed the structure. If you need something it is always there. I'm pretty independent now, but at first I had to take it slowly." There are substance abuse counselors and support groups available if he needs them. He tries to attend at least three Alcoholics Anonymous meetings a week.

Once he was in recovery, Greg was finally able to adhere to his HAART regimen. But by then he had exhausted his options: By failing to take his meds on time for so many years, he had become resistant to most of the available medications. His CD4 cells continued to drop and his viral load continued to rise. "I never thought beyond two or three years, didn't make any plans as far as employment and going back to school, because I never expected to live that long," Greg said. "Then a friend gave me information on this new drug, T-20 or Fuzeon, and that's when I really got hope."

Since his medications were no longer working, Greg assumed he had little time left to live. He never imagined he would be around long enough to see the younger of his two sons graduate from high school (which he did in the spring of 2004), or his daughter give birth to his first grandson, who is now two years old. "It's really a miracle for me to see my grandson," Greg acknowledges. "I didn't think I would see my kids grow up. I remember telling my kids that I had AIDS and my daughter was crying. I really thought I would die soon."

From Crack Addict to College Grad
Greg started Fuzeon as part of a clinical trial in November 2002. He took the drug in combination with Epivir (3TC, lamivudine), Norvir (ritonavir), Viracept (nelfinavir), and TMC-114, an experimental protease inhibitor. "At that point I was out of options," he said. "If my doctor told me to jump off a building I would -- as long as I had a parachute!" By sticking to his regimen, Greg saw his viral load plummet to around 13,000 and his CD4 cells rise from 1 to 75.

That same year, Greg decided to finish college. He will graduate in October 2004 with a degree in applied behavioral science, which he will put to use in the HIV community. "That's all because of the Fuzeon, the hope that it gave me," he says. "I haven't got to undetectable yet, but to me this is a big improvement from over a million copies to 13,000!"

Learning to Adjust
When asked what he thought when his doctor told him that he would have to inject Fuzeon twice a day, Greg, who never even injected during his crack addiction, replied, "The thought of injections didn't bother me too much because I had experience injecting Procrit for anemia. I wanted to do whatever was necessary to get the virus under control. The first three or four times I injected I had to play the training video to do it. After that it became second nature. It really was no big deal considering the benefit I was trying to get from the drug."

It was actually the preparation of Fuzeon that concerned Greg. "It seemed a little complicated at first because you have to mix the drug, and I had a little apprehension about that," he said. "But after my doctor went over the training video with me, I was confident that I could do it."

How does Greg work the twice-daily injections into his schedule? "It takes an adjustment; you have to plan," he explains. "I mix two batches at night, inject one and do the other in the morning. You have to allow time for it to come out of the refrigerator and warm up. By and large, I've adjusted to it quite well. It doesn't burden me."

And what about his adherence? "I've been on Fuzeon for a year and half and I might have missed only three doses."

Although Greg has heard people in his Fuzeon support group talk about injection site reactions, he says that his are pretty much average. "Sometimes I inject and have very little reaction at all, and sometimes I get a little bruise there. On average, it's just something that's barely noticeable to me. It's nothing that would prohibit me from injecting. I have to look around for a fresh site to inject. I have problems injecting in my legs and arms, so I stick to the abdomen area and I seem to do okay."

So how long will Greg stay on Fuzeon? "As long as necessary, that's my outlook on it. If medications come out that will allow me [to] take pills, then I'll do that. But I'll inject as long as I have to because I'm getting results from it."

The Power of Support
For people who may be considering taking Fuzeon or are just getting started with it, Greg firmly believes in the importance of attending a support group. "You can get honest feedback on the pros and cons of injections," he says. "The bottom line is, if this is what you need to do to save your life, then you learn how to manage it, and get over the fears of injecting. If you don't have a support group in your area, then talk to people who are on it [Fuzeon] and get feedback, ask questions."

Any injection tips? "It's amazing how many small tips you can pick up in the Fuzeon support group," he says. "The main one that has affected me is using a small vibrator to massage the site right after the injection. It helps diffuse the medication and the injection site reaction is much less severe."

Empowering Himself and Others
Greg's turnaround in life has been nothing short of remarkable. His health has improved, as has his romantic life: Almost two years ago, he found a new girlfriend, and they're still going strong. Greg has also discovered a passion for exercise -- an obsession that's yielded benefits in several ways. He says, "My addiction for drugs and alcohol have switched to exercise. Even in recovery, my T cells plummeted, my viral load was a million and my T cells were 1. The only thing that kept me going was juicing and exercise."

In his studio apartment, Greg keeps 10-15 pieces of exercise equipment, including a stationary bike, total gym, power flex for strength training, a cross bow and a rowing machine.

Despite his exercise regimen and being a full-time college student, Greg contributes the rest of his spare time and energy to the HIV/AIDS community. He leads a support group for HIV-positive Alcoholics Anonymous members; he's a member of various AIDS policy and planning groups; and he serves as a board member of the agency that runs the independent-living group home where he lives in Chicago.

Whenever he's asked, Greg speaks freely about substance abuse and HIV -- for colleges, for high schools, wherever he is needed. "It's a way of giving back; it's 12-step work," he says. "Having HIV is something negative, so I can flip it to a positive; I can use my disease to prevent others from getting it. I really get a lot out of doing that."

Comments? Feedback? Greg would love to hear from you.

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