Rob From Los Angeles: A Fuzeon Veteran
This material was developed independently through an unrestricted educational grant from Trimeris.
A Long, Rocky Road
As one of the first people in Los Angeles to enter the initial clinical trial for Fuzeon (T-20, enfuvirtide) in 1999, Rob is the go-to guy for information about taking the drug. During the first two years of the trial, he had to inject himself four times a day instead of twice a day as now required. And the drug had to be refrigerated back then, so travel was a hassle. "Now those things have changed," he says. "There are fewer injections and you no longer have to keep it refrigerated."
Rob had no qualms about giving this new drug a shot -- no pun intended. His desire to stay healthy erased any doubts he may have had about trying an experimental, injectable treatment. A 57-year-old retired banker who was diagnosed in 1987, back when AZT (zidovudine, Retrovir) was the only HIV treatment on the market, Rob knew by 1999 that he was running out of treatment options. Since his days on AZT monotherapy, Rob had been on a merry-go-round of drug regimens, adding new meds as they became available and removing older ones that began to fail. Like everyone else who was infected with HIV in the 1980s and early '90s, Rob didn't start combination drug therapy until HAART became available in 1996.
"There was never a problem with side effects," Rob said of his previous meds, although he did develop two humps on his back during the 1990s. (Both were removed with surgery.) But inevitably, "the drugs would begin to fail, and I would get about two years, two and a half years out of each drug run." Despite Rob's near-perfect adherence, none of the many regimens he took were powerful enough to lower his viral load below 3,000, and few were able to help his CD4 count.
It was a stroke of luck that brought Rob into the Fuzeon study in 1999: His HIV doctor at the time happened to be one of its investigators. Rob's doctor knew that he was an excellent candidate for the study, since he had never been exposed to several of the drugs used in the trial and was willing to adhere to a complicated treatment regimen. Now, four and a half years later -- a longer stretch than for any other regimen he's tried -- Rob is still taking the same five drugs: abacavir (Ziagen), amprenavir (Agenerase), efavirenz (Sustiva, Stocrin), ritonavir (Norvir) and the Fuzeon. The regimen consists of at least one drug from every class of HIV meds. "I'm hitting the virus at all three points: in the beginning of the life cycle, in the middle and in the end before it reproduces," he explains. As a testament to his commitment, he has missed virtually no doses of his regimen in four and a half years. His motivation? "I want to live another day to take another dose."
The Fuzeon-based regimen finally put Rob's health on the right track. "It wasn't until I started Fuzeon in 1999 that things really started to improve," he says. "My CD4 cells initially climbed to 300, and today they are around 800. My CD4 percentage was zero in 1993, and is now up to 22. And my viral load has been undetectable [below 50 copies/mL] almost since I started taking Fuzeon."
Rob is on Medicare, although Medicare currently has no prescription drug program, leaving him with only partial coverage of his medications. Fortunately, although the clinical trial Rob entered has long since ended, the drug's manufacturers, Roche/Trimeris, continue to supply him with his Fuzeon at no charge -- which takes a pretty hefty weight off his wallet, considering the drug retails for more than $20,000 per year.
Self-Injections? "Such a Minor Thing"
Rob's two years spent serving in the Navy in the late 1960s as an operating room technician -- and 12 years as an HIV-positive patient -- left him completely unfazed by the prospect of taking Fuzeon injections twice a day. "It's a very simple procedure. I'm familiar with sterile procedures and how that applies to injections. Plus, when you're living with HIV, you have your blood drawn for testing every month or two, and you get very used to needles."
The most important part of adjusting to HIV treatment, Rob explains, is putting aside fears and discomforts. "Something I've noticed is that [people] often don't give a lot of things a chance. They have a reaction to a drug and they're ready to throw it out the window and not take it anymore. Almost every drug that you start has some reaction in your body, whether it's sleep loss, diarrhea, fatigue. You need to give the drug a chance. There are things that you may need to change in your lifestyle to accommodate it. It's a matter of whether you want to deal with it and live, or not deal with it and die."
When it comes to Fuzeon injection site reactions, Rob gets them almost every time. "I get a lump or a hard knot underneath the skin, and it takes about eight days for the lump to go away. They're not noticeable externally unless you put two or three too close together, so you need to move the injection sites around." Rob has also had bouts of bronchitis and bacterial pneumonia, relatively rare side effects that he says are associated with Fuzeon, and for which he was at a greater risk due to his history with HIV-related pneumonia.
What does Rob say to those who may be apprehensive about self-injections? "It is such a minor thing. You don't even feel the needle. I guess people have stigmas, but somebody living with HIV is totally familiar with needles [because blood must so frequently be drawn for testing]. There are people in my support group who say, 'I could never do that.' But you do what you have to do. Diabetics do it all the time. It's not a hard thing to do."
Besides, Rob adds, what other choice does a person taking Fuzeon ultimately have? "You need to figure out what you've got to do to get past that, because the Fuzeon is what keeps you alive."
Highs and Lows
Since his HIV diagnosis in 1987, Rob's health has certainly seen its peaks and valleys. The deepest of the valleys came between 1992 and 1993, when he was hit with Pneumocystis carinii pneumonia twice and his CD4 count plummeted from 400 to zero, where it remained for three long years. During that time, Rob says, his weight fell dramatically, he was frequently exhausted and had to treat his immune system with particular care. "I was teetering there for a while," he says. The addition of indinavir (Crixivan), and later ritonavir, to his treatment in the mid-1990s brought his CD4 count back up to around 200, and since he began his Fuzeon-based regimen in 1999, it has steadily climbed to its current level of 800.
But to this day, Rob says, "My lungs are my weakest link. ... I still have to sometimes pause in the middle of a sentence to take in more air." He adds this last detail with a laugh -- not one of discomfort or nervousness, but the laugh of a person who has accepted such tradeoffs for what he sees as a much greater prize: life. He used to smoke lightly, he admits -- about a pack a week. He quit smoking in 1989, though, when his HIV doctor told him that cigarettes destroy T cells. "That was all I needed to hear," Rob says.
Finding -- and Providing -- Emotional Support
Since 1995, Rob has served on the board of LA Shanti, the first AIDS organization in Los Angeles delivering direct services to clients, such as prevention, treatment education and emotional support. He is also an involved member of the organization's Programs Committee. "I'm very involved in getting the word out to those who are newly diagnosed about what changes they may expect in their life, the options that they have and the services that are available," he says.
"The more you resist this disease, the faster it takes hold. You have to have a positive attitude."
In 1993, Rob also joined one of LA Shanti's emotional support groups for HIV-positive people, after his CD4 count first dropped to zero and he began to develop HIV-related illnesses. He joined the group in hopes of meeting others whose health was in a similar state and who could offer advice on getting through it. "I really needed people to lean on," he explains, "because I didn't want to [be a burden to] my friends."
But as his health slowly improved through the late 1990s and early 2000s, thanks to the development of more effective drug regimens, Rob found his role within the support group shifting. Now, he says, "I'm not in as much need of the group as I was in the beginning. Now the group gives me the opportunity to share my experiences with its newer members. ... Sometimes it makes me feel like the messenger."
Rob now finds the support he needs in other ways. He counts himself extremely fortunate, in that he has a devoted partner (who is also HIV positive) of 12 years and several core groups of friends with which he spends most of his free time, all of whom are comfortable with his HIV status. Only one friend, he said, distanced himself after learning Rob was HIV positive. "I respect it," he said. "I think he just didn't know how to deal with it. We still exchange Christmas cards."
Staying Centered With Many Interests
One of Rob's greatest passions is bridge, a card game he picked up during his tour in the Navy. Every Thursday for the past 28 years, Rob has gathered with the same group of friends to spend several hours playing bridge. Through it all -- his wilder days in the 1970s and early '80s, his HIV diagnosis in 1987 (and his disclosure to friends in the bridge group a couple of years later), his deteriorating health through the '90s and his inspiring recovery -- the same group has come together to enjoy a common interest and the comfort of each other's company. "It's my therapy," he says.
And then, of course, there's travel -- Rob's other great release. Though he's reluctant to call attention to it -- he readily acknowledges the blessings that have touched his life and allowed him to enjoy the rewards of a successful banking career -- one of the few luxuries Rob likes to afford himself is a periodic dip into his savings for a trip somewhere around the world. His last trip was to Cancun, where, long removed from the party scene he enjoyed in his younger days, he and his partner spent their time relaxing by the beach and reading good books.
Finding Doctors and Friends You Can Count On
Rob's doctors, too, have proven to be a key source of support for him. Each of them -- he's had three since his HIV diagnosis in 1987 -- has been a true advocate for his care, he says: "They have all been supportive, understanding, good listeners, and I feel they've genuinely wanted to work with me to make sure I was receiving the best treatment available." Rob acknowledges that getting great HIV care is a two-way street -- "A person has to be willing to open up, ask questions and work with his doctor," he says. But he also believes strongly that he wouldn't be where he is today without the presence of doctors who truly cared about his well-being, and showed it. "They have all been incredibly wonderful, caring people," Rob says, "and they have become my good friends."
Rob takes none of his good fortune, particularly not his friends, for granted. In fact, he sees his successful relationships in the same practical, optimistic light that he views much of his life. Many people "try to make [friends] into something they can never be," he says. He knows from experience: He's gone through his share of friends who couldn't provide him with the support he needs. "One of my doctors once told me, 'You need to rethink some of the people you have in your life, and if they're making demands on you that you cannot fulfill and it's making you unhappy, you need to create some distance.' It's the best advice I ever had; friends should love you unconditionally, and shouldn't judge you. ... It was painful, but it was really good advice."
Acceptance and Comfort
This deep-seated feeling that you must accept what you can't change may be what keeps Rob so relentlessly upbeat. This philosophy has also helped him maintain his friendships, his romantic life and his relationships with doctors -- and, perhaps, has given him the will to stick through so many failed treatment regimens and health problems in order to become the healthy, hopeful person he is today. "Spending all that energy saying, 'I wish I didn't have this disease' is not going to change it -- it's a waste of energy," he says. Rob would much rather accept the fact that the HIV, the treatments, the side effects and the injections are all a part of his life now, and pour his energy into the things in his life that matter to him the most.
And what about the future? "I'm comfortable. I don't have any plans to go anywhere from here," Rob says. He speaks these words with the laid-back certainty of a man who has come closer than he'd care to admit to seeing his life slip away, and who appreciates the present far too much to be concerned about what the future may hold.
This article was provided by TheBody.
Add Your Comment:
(Please note: Your name and comment will be public, and may even show up in
Internet search results. Be careful when providing personal information! Before
adding your comment, please read TheBody.com's Comment Policy.)