Monday, February 6, 2012

The AIDS Alphabet: N is for "NUKES" (NRTIs) and "non-NUKES" (NNRTIs)

The AIDS Alphabet: N is for "NUKES" and "non-NUKES"

An excerpt from life with NUKES, non-NUKES and other medications that fight HIV/AIDS from Journeys Through Darkness: A Biography of AIDS.

NNRTIs: Non-Nucleoside Reverse Transcriptase Inhibitors (a.k.a. Non-NUKES) are medications that inhibit the reverse transcriptase enzyme by binding directly to the enzyme. NNRTIs include: nevirapine (Viramune) and efavirenz (Sustiva).
NRTIs: Nucleoside analogue Reverse Transcriptase Inhibitors (a.k.a. NUKES) represent the earliest antiretroviral drugs. They act by incorporating themselves into the DNA of the virus and blocking an enzyme called reverse transcriptase, which HIV needs in order to replicate. NRTIs include: zidovudine (Novo-AZT, Retrovir), lamivudine (Epivir, 3TC), and stavudine (d4T, Zerit).


Journeys Through Darkness: A Biography of AIDS by Alina Oswald with Photographs by Kurt Weston

Excerpt from Chapter Eight: Modern Crucifixion"

The modern-day face of AIDS is not a face of death anymore, but rather is defined by new terms like “Crixi bellies,” “PI pouches,” “buffalo humps” or “sunken cheeks [syndromes].” It is partly a face of HAART regimens, the very medications vital for patients to sustain a normal life and lifespan. Therefore, especially in North America and Western Europe, the contemporary face of AIDS is associated with physical deformations that sometimes can transform a patient’s appearance beyond recognition.
Due to the new protease inhibitors he was on, called d4T, Kurt Weston was also starting to grow a buffalo hump and a stomach pouch (also known as a P.I. pouch). When he asked his doctor to switch him to a drug that wouldn’t distort his body, his doctor told him about a new medication at the time, an entry inhibitor that was coming up the pipeline and becoming available.
In 2003, FDA approved a medication called Fuzeon (or T20) supposed to fight HIV by not allowing the virus to enter the T cell. Because it is difficult to manufacture, the drug is extremely expensive and available only as an injection. Studies have shown that AIDS patients who are on Fuzeon may get skin rashes where they self-administer the shots, or some may become more prone to developing pneumonia.
Doctors put the photographer on Fuzeon and a combination of other medications. While on Fuzeon, Kurt has experienced very few side effects and he liked that very much. Also, to make best use of the medication and his time, he had no choice but to quickly learn how to integrate his shots into his daily schedule.
Ever since his diagnosis, AIDS has been a constant variable in the equation that describes Kurt Weston’s existence. In time and with the appearance of new treatments, the threat of his disease has turned from immediate to manageable. These days, AIDS has become more of a constant companion in his life rather than a threat, but it continues to influence, at least partly, all decisions, minor and major alike, that he has to make—be they related to his studies, to traveling or eating his meals.


Bethesda Angel in Central Park featured in Backbone, Alina Oswald's 2008 photography show and photobook with the same name. Photo by Alina Oswald. All Rights Reserved.
Bethesda Angel in Central Park. Photo by Alina Oswald.

    In general, some medications have to be taken with food, while others before or after meals at precise times each day, several times throughout the day, for the rest of the AIDS patient’s life. For this reason, people living with the virus and on such medications always have to take their treatments into consideration when planning their daily activities.
On mornings when he had to make it to school early, Kurt made sure to get all his medications ready the previous night before going to sleep. He lined up all his pills so they would be ready for him to grab on his way out the door the following morning.
But pills are only a small part of Kurt’s treatment. He also has to give himself daily injections.
To be able to self-administer the Fuzeon, he first has to prepare the fluid—that is to put sterile water in the Fuzeon vial and get it hydrated. Then he would store the container in the refrigerator until he’s ready to use it, which should be within twenty-four hours. The daily two Fuzeon shots have minimum side effects on Kurt, but, on the other hand, they’re also “a pain in the ass,” as he calls them, because they require a lot of knowledge, work, patience, and time. And Kurt has to deal with these treatments and medications every single day, no matter how busy or fast pace his day may be.
For a while, Kurt was also taking a trial medication supposed to reduce his lipodystrophy (or body fat mal-distribution), which is a side effect to some HAART regimens. This was a new and experimental drug supposed to keep his fat from accumulating in all the wrong places. Therefore, every single day, after getting his first medication started, he had to take his first dose of pills, and then start hydrating his second, trial medication. Kurt had to self-administer two vials of this medication, daily, in order to see any results. For a while it seemed to work nicely and he started losing his P.I. belly. He also learned to wear clothes that would hide whatever was left of it… Eventually, Kurt had to stop taking the trial medication because of its various side effects.
"Imagine... life on powerful medications..." by Alina Oswald

Medication also interferes with patients’ traveling schedules. Kurt Weston avoids being away from home for longer than a week, partly because he doesn’t have enough room in his suitcase to carry medication for more than six or seven days at a time. When he travels, the photographer has to bring with him the Fuzeon kits containing the syringes, alcohol swabs, medications, sterile water and all the vials with the actual medication. He has to pack them so that they don’t break or get damaged in any way, and then pray to God that at the airport nobody stops him to ask why he’s carrying all those syringes and vials with him.
The entire process is a hassle, but Weston prefers it to taking lots of pills that give him lots of negative and powerful side effects. With the Fuzeon injections, he only experiences a hard tiny bump at the place where he administers the injection, and only because it takes awhile for the drug to disperse from under his skin. But to take a drug whose only problem is that it has to be injected is not a big deal for Weston. He has been on other drugs that gave him all kinds of “unpleasant” side effects.
Some of the medications he’s tried throughout his years of living with AIDS gave him neuropathy (which is numbness in his extremities, hands and feet), while others caused him to have severe diarrhea, “Like I take the drug and an hour later I’m having bowel movements, five minutes apart,” he recalls. Yet other drugs had the power to send him into a complete druggy and groggy state of being.
Weston considers Sustiva a “horrible drug” that used to send him into a perpetual delusion. While struggling to minimize the side effects as much as possible, he first tried taking the medication at night, before going to sleep. But as it turned out, while the pills were making him dizzy, they were also keeping him from falling asleep. Not willing to give up, he then tried taking Sustiva during the afternoon, several hours before going to bed, but that made him feel “out of it,” as if he were on sleeping pills for the rest of the day. 
Norvir, a protease inhibitor that came in oversize pills, gave him diarrhea, and because it had a lot of alcohol in it, it also made him sleepy. He had to take eight capsules of the medication in the morning and another eight at nighttime, daily. 
Drugs like Zerit and ddI gave him neuropathy. While he hasn’t been on these medications in quite a long time, the numbness in his extremities has started to improve slowly, yet it has never gone away completely. When it comes to neuropathy, the photographer still has his good days and his bad days, especially when he has to stand or walk for a long time. Even these days, he still experiences a tingling sensation in his limbs, although it’s not a constant pain anymore. 
Other side effects can be even more serious, depending on the type of medications the patients are on. The new HAART regimens have radically transformed the progression and manifestation of AIDS, but their unquestionable benefits came with a price tag. While the unattractive fat accumulations caused by these drugs cannot always be noticed, it doesn’t mean that they cannot cause significant problems for patients. Sometimes the erratic fat accumulations happen deep inside the body, in the arteries, causing AIDS patients high cholesterol and triglycerides levels, thus increasing the risk of blocking their arteries, which can lead to heart attacks or even death.
Some AIDS patients on certain HAART regimens require open-heart surgery. Weston has never had to go through anything like that, but a good friend of his who was on the new drug regimens wasn’t that lucky. She died of a massive coronary. She was forty-eight.
Same meds supposed to keep HIV from replicating in patients’ bodies can also be responsible for the new look of the perpetually changing “face of AIDS,” sketched by the fat accumulations anomalies associated with the new HAART regimens. The dents and valleys of fat deposits redefine patients’ entire physical appearance, transforming individuals into “human freaks” because their stomachs are blown out like balloons, while everything else is shrinking away and veins are sticking out on their arms and legs, and they look like someone starving in Africa.
"Lava Face" Copyright 2010 by Alina Oswald. Photographer's Note: I believe that, in some way, this "face" can also be interpreted as the Face of AIDS... without the makeup.
Sometimes their disfiguration is so advanced, so severe, that patients refuse to go out in public, because they can cover everything else but their faces. The loss of fat in their faces gives them a gnawed appearance, which can be quite drastic. As a result, many of them find no other solution but to become prisoners in their own homes, of their own disease, this time not because of KS lesions, but of the very medications that have radically turned their lives around. 
Some patients are even willing to risk their physical lives in order to be able to have some kind of social life, because, after all, what good is feeling healthy when they cannot enjoy life. So, they decide to stop taking their AIDS medications and go on so-called “drug holidays” until they start regaining some of their normal physical appearance.
Some others ask professionals to inject substances like Newfill in their faces to regain at least part of their normal looks. The treatment is very expensive and costs thousands of dollars for one session. Most of the time, it is not covered by medical insurance. In addition, the patients need to go through several sessions in order for them to see any improvements.
In 2006, the Food and Drug Administration has announced the approval of a new once-a-day pill for treating HIV/AIDS. The pill, called Atripla, became available in the United States and it was supposed to be made available to fifteen other countries, including South Africa, Uganda, Botswana, Rwanda, Haiti, and Vietnam.
The FDA approval of Atripla offers a potentially easier way for HIV/AIDS patients to keep up with their medications, thus allowing them more time to concentrate on other aspects of their lives. For patients who cannot or don’t want to deal with the drug side effects two or three times a day, a once-a-day pill can have its benefits, but that doesn’t mean that it works for all patients.
Confirmed by the early 2007 HIV/AIDS updates, medical professionals consider Atripla a convenient once a day pill. It is not a breakthrough and not a one-pill-fits-all HIV patients. Many newly diagnosed individuals and those co-infected with hepatitis cannot take Atripla. It can take one to three months or more to adjust to the medication. Some patients develop rashes severe enough to switch to other regimens. There are no studies yet showing that Atripla is safer, less toxic or more capable to increase lifespan than other medications. Related post-exposure prophylaxis studies are expensive because they require a large sample size. 
Typically, there has to be a certain level of medications in a patient’s body in order to keep the virus in check. So, taking one large pill a day, at the beginning of the day, creates a significant stress on the liver, because the liver is the organ through which all drugs are processed. A once-a-day pill may be convenient to the patient, but it may not be as convenient to the body that has to process a huge dose of medications and then sustain itself throughout the day. In addition, the one-time-a-day medication is not really a new drug, but rather the combination of three drugs already available on the market.
“[Basically, pharmaceutical companies] are taking these three drugs and putting them together in one pill,” Weston comments, “and they probably up the amount of drug in those pills, because it has to get you through twenty-four hours in one dose. So, you’re probably taking the drugs that are currently available already, but you’re just taking them in one combination pill.”
Kurt Weston is not impressed by the once-a-day treatment because he doesn’t really like the idea of taking “one large blasting dose” of medication once a day. Therefore, although his doctor offered him the option to put him on a once-a-day medication, he rejected the idea and opted for continuing with his twice or three times a day treatment.
Swan Lake, Hamburg, Germany. Copyright 2006 by Alina Oswald.

The photographer is more interested in phasing out his drug therapy, keeping the drugs at a plateau level and doing it in a way that would not stress his organs. To him, learning how to deal with his medication begins with learning to understand his entire body, his entire universe—the physical and spiritual part of it—something he learned to master while in Chicago, through his SWAN [Surviving With AIDS Network] experience and the first “warriors” he met at Test Positive Aware.
While doing so, Weston believes that his surviving AIDS has helped him resurrect not only as a person, but also as an artist. Despite all the obstacles, his AIDS and his blindness have offered him a second chance to life in general, and to his professional life, in particular. So, he took his chances and did the best he possibly could with them, while never thinking of giving up.

2 comments:

  1. Thanks John! These are images I've taken over the years, from shooting HIV/AIDS related events in NYC (Angel in Central Park) to photographing live lava flow in Hawaii (Lava Face) and further.

    I really appreciate your comments and stopping by my blog,

    Alina

    ReplyDelete