April 8, 2007
Reverend Batiste with his son, Quentin
Table of Contents
As a veteran, the Reverend Frederick Batiste of New Orleans had been prepared to fight battles. But nothing could have prepared him for this: a battle with HIV that has lasted an incredible 21 years.
Before he was diagnosed back in 1983, Fred didn't know what was going on with his body. He just kept getting infections. Then he got the news that changed his life.
Diagnosed at a time when the general public was just becoming aware of the term "AIDS" -- and anxiety and misinformation were widespread -- Fred showed great courage despite his fears.
He was the first to get in front of his church and announce that he had the virus. His hope was that by sharing his story, he could help others. He has continued providing support to members of his community through the Nineveh Baptist Church Friendly Members Healthcare Ministry, focusing on prevention of HIV/AIDS. The ministry also provides referral services and education to people with HIV who don't know where to go or what to do. It has become his life's work.
Fred is now on his fifth regimen since he began HIV treatment in 1988; his doctors have had to adjust his meds every two to three years. He's had problems with side effects, ineffective meds and meds to which he developed resistance.
Then one day Fred's doctor told him he had few options left. The good news was that Fuzeon, the first fusion inhibitor, had recently been approved for patients who had experienced treatment failure with previous drug regimens. While he was willing to try anything that would help to stabilize his disease, Fred was a little apprehensive about injections. As he puts it, "I hate needles."
Fred's doctor started him on on a regimen in February 2003 with Fuzeon, Invirase, Videx EC, Viread and Kaletra. At that time, Fred's viral load was over one million and his CD4 cell count was 27. He also takes Bactrim to prevent pneumonia, Prozac for depression and an antifungal for his skin. Fred also suffers from epilepsy and takes Keppra to keep it under control.
Since he started his regimen, Fred's CD4 count went up to 136 and his viral load decreased to around 100,000. "The stuff is great. My viral loads have come down. My CD4s are shooting up. It keeps me healthy, I'm not as sick as I was before, I've gained weight back and all that good stuff."
Fred is lucky in that he has an excellent doctor who follows him closely. Since 2000, his doctor has regularly performed resistance tests to make sure Fred's meds are still working against the virus. Fred's other health problems make him a difficult case, however. His doctor is about to change his HIV regimen again because it appears that his epilepsy drug interacts with some of his anti-HIV meds.
Apprehensive at first about the prospect of injecting himself with the Fuzeon twice a day, Fred adjusted quickly. "The injections were kind of hard at first, and I was not too willing. It takes about two or three days to get used to it, and after that it becomes part of your regular medicine schedule. To me, it's easier than pills. I wish the whole cocktail could be injections rather than pills. With pills, you have to swallow, swallow, swallow!"
For a while Fred attended a Fuzeon support group where he learned some tips to help him inject himself with the Fuzeon and reduce the injection site reactions that affect most patients who take Fuzeon. "I've learned how to reduce some of the pain and nodules that it causes. My Fuzeon group taught us about massaging with a hand-held massager. It moves the drug in faster, so there's less pain. They also taught us how to reach the fatty parts on the back of our arms. I also use lidocaine to numb the spot. I put it on 30-45 minutes before the shot. The area is numb, and you don't feel any pain."
Despite his long battle with HIV/AIDS and a daily drug regimen that would overwhelm most people, Fred maintains an incredibly positive attitude toward life. Divorced with two children and two grandchildren, Fred is grateful that his family is HIV negative. Stated in his matter-of-fact way, "They're affected by my disease, but not infected."
When asked what advice he would give to others who are HIV positive and in need of a drug like Fuzeon, he responded, "I'm not a rich person, but I've been given a wonderful, wonderful chance, and I hope that everybody can get the same opportunity. If they're afraid of injections, they just need the desire to get better. A lot of people aren't aware of the drug. This stuff is great. I'm a harder subject than some of the rest of them, but it keeps me healthy. I'm on it to stay!"
Reverend Batiste gives his thanks to the Veterans Administration, Nineveh Baptist Church, National Minority AIDS Council, Balm in Gilead, Inc. (for giving him the courage to disclose his HIV status to his church), and Brother to Brother Peer Support Group. He hopes others can share the same blessings and treatment that he has received.
This material was developed independently through an unrestricted educational grant from Trimeris.