Wednesday, March 28, 2012

The AIDS Alphabet: W is for (AIDS) Warriors

The AIDS Alphabet: W is for Kurt Weston, AIDS Warrior

Photographer Kurt Weston sees his AIDS as a battle.  And he needs to be a warrior willing to fight the virus that is destroying him.  
      “I never really wanted to just give up, even when I had the KS lesions.  I think part of it was the fear of dying, but I didn’t just wait for it to happen,” he says, explaining his source of positive attitude during the course of our phone interview.
Kurt Weston & Ambrose. Photo by Alina Oswald
      Diagnosed with AIDS in 1991, the award-winning visual artist considers protease inhibitors a miracle that literary saved his life.  But, as he was restoring his health, he was also becoming legally blind, diagnosed with CMV retinitis in 1994.
      “I was devastated because here I had spent my life working as a photographer and as a visual artist and I was no longer capable of doing this… or so I thought, because I couldn’t see anything in focus.  I don’t see anybody’s face,” he says.  “I see… like, if you look at the palm of your hand.  That’s what I see of a person’s face.  So, I didn’t think I could ever photograph again.”
      Fortunately, it turned out he could.  And his first challenge was finishing the 1999 calendar for the Asian/Pacific Crossroads.

The above is an excerpt from my article "Warrior Within," originally published in A&U Magazine--America's AIDS Magazine, an article also available online at www.aidsmuseum.org, the National AIDS Museum site.
My own Lensbaby Angel now part of the National AIDS Museum collection. 




Dark Angel, himself a kindred soul

During the past decade, while documenting the AIDS pandemic, I've come to meet quite a few AIDS warriors. Each one of them has left an imprint on my life, still visible today. I owe them more than they can ever imagine. These kindred souls have offered me (and others willing to stop and listen)  the opportunity to look at life through a refreshing perspective, one unafraid to deal with the reality of life, as raw, crude and cruel as it is. In the process, it may not always offer a happy story locked inside one of these happy bubbles we've come so accustomed to (unfortunately). Instead, it takes us on the darker side of life, a path I've been on ever since I can remember, and offers the possibility of hope. Through it all, hope shines like a weak (at first) ray of sunshine, trying its best to peek through the blackness. It takes a warrior (in this case, an AIDS warrior) to be able to hold on to that weak light, while still surrounded by the pitch darkness. It takes the "droplets of hope" best selling author Joel Rothschild talks about in his book, Hope--A Story of Triumph. It takes the courage to wake up every day and decide to make the best of it, and help others while at it, like Dab Garner and his AIDS Bear, Anthony Johnson, founder of BOLT (Bringing Our Lives Together), Robert Breining, Founder of POZIAM and many others, be they infected with the virus, affected by it or just wanting to make a difference in putting an end to the pandemic.

Dab the AIDS Bear. Lensbaby Photo by Alina Oswald


One of the warriors who've have an immense impact on my life is Kurt Weston. What makes a warrior, in this case an AIDS warrior and what defines him as an AIDS warrior? Here're a few excerpts from Journeys Through Darkness: A Biography of AIDS, a book that tells the story of AIDS through the story of Kurt Weston, excerpts that deal with the notion of AIDS warrior.

Hope you'll enjoy the read.

As always, thanks for stopping by,

Before I leave, I'd like to ask: Who are your warriors/AIDS warriors and why?

I'd love to hear from you. Thanks again,
Alina 


Surviving extreme situations, natural and/or man-made:

Journeys Through Darkness
    Kurt Weston believes that any kind of extreme situation, be that a disease, war or natural calamity that people are put in, can bring out the positive or negative aspects of their personalities. In the case of AIDS, this duality holds true for those living with the virus, and also for the others. There are times when some individuals who are not infected consider themselves above the virus and the disease. They see AIDS as a punishment sent by God to those who deserve nothing better.
    The truth is that AIDS is a very human disease caused by a very human virus—the Human Immunodeficiency Virus. Since its worldwide outbreak in 1981, HIV has been perpetually mutating, transforming, hiding and disguising itself inside and on the bodies of those it has infected. Yet, the related stigma and prejudice, the isolation and fear always associated with the disease have stood the course of time. Something else that has been forever associated with this disease has been the mark (or stigma) it puts on its victims. This is only one aspect of what we’ve learned to know as “the face of AIDS,” and its persistent and perpetual transformation. One has to be a warrior to survive something of this magnitude.

    In its early days, the psychological and physical burdens the epidemic brought to patients yielded to destructive, negative behaviors in some individuals. Faced with an imminent death sentence, some of those infected developed a “screw it all” attitude, and went on maxing out their credit cards and living totally irresponsible lives because they knew they were going to die soon anyway and didn’t mind leaving somebody else to clean up their mess at the end.
    Other AIDS patients did just the opposite. They became more responsible for their own lives and for the lives of those around them.
    Kurt Weston met these kinds of people when he started attending AIDS-related workshops at some of Chicago’s AIDS service organizations. Test Positive Aware was the first ASO [AIDS Service Organization] he visited. TPA provided a helpful resource and a link to professionals who could help Kurt with his health insurance and medications, and also provide informative AIDS education. The organization also became a means of communication between the artist and others who were also infected.

Finding other AIDS warriors, guardian angels and kindred souls willing to teach others how to live in a "surviving mode":

    So, Kurt joined their group and listened to what they had to share. And their AIDS success stories touched his life in the most positive way, fueling his own desire to survive the disease. In time, the photographer got to know these early-AIDS survivors better and discovered that they were the ones willing to go the extra mile doing whatever it was necessary to fight the virus that was destroying them.
    To this day, Kurt Weston considers these kindred souls his guardian angels, his first contact with the early AIDS warriors he later met in his life. They helped him take his first steps toward surviving the disease, while injecting in him a belief system that he, too, could turn his fate—his AIDS—around and transform it into something more manageable, into something that did not necessarily have to be a death sentence.
    But learning how to stay alive required the photographer to take on some responsibilities of his own, including devotion and commitment to his life, and also a lot of time, money, and effort. These were the bases of living in a “surviving mode,” which meant focusing solely on living one day at a time, while slowing down his life to bare necessities in order to stay alive.

Sunday, March 25, 2012

The AIDS Alphabet: V is for Venus Fly Trap (VFT) Plant

The AIDS Alphabet: V is for Venus Fly Trap, the only carnivore plant in the world

What would you be willing to do to stay alive? In a previous post I mentioned amaroli, or auto-urine therapy (aka drinking your own urine). Another therapy involves injecting oneself--IV (intravenous) or IM (intramuscular)--with an enzyme extracted from Venus Fly Trap plant. VFT is the only carnivore plant on our planet. Here's an excerpt from Journeys Through Darkness: A Biography of AIDS, which deals with VFT and its use among AIDS patients before the advent of HAART medications. What are the benefits of VFT for an individual living with HIV/AIDS? Find out from a story told to me by AIDS warrior and award-winning photographer Kurt Weston.

Hope you'll enjoy reading about Kurt's experience with VFT. As always, thanks for visiting me here, and also thanks for stopping by to say 'Hi" yesterday, at 2012 NYC Rainbow Book Fair.

Alina Oswald
Author of Journeys Through Darkness: A Biography of AIDS

Excerpt from Chapter Four:Self-Reflections:

Another alternative treatment SWAN [Surviving With AIDS Network] members tried involved a substance called Carnivore, extracted from the Venus Fly Trap, or VFT, the only carnivore plant in the world.
    Like humans, the many varieties of VFT plants are genetically different from each other. VFT has very thick, fleshy leaves, or petals, with traps (or “teeth”) at their end. The plant can create a red pigment in its tissue, which is supposed to attract the insects (some experts believe that it is also used to protect the plant from sunburn). When a fly lands on it, the petal closes and kills the fly with its “teeth,” and then digests the fly with the help of an enzyme within the VFT plant.
Killer Flower on the Big Island of Hawaii
    The theory was that this particular enzyme, the juice within the plant, could help treat HIV. The enzyme would digest (or disintegrate) the protein in the HIV, and therefore destroy the virus. Patients could buy it from a company in Germany and they could give themselves Carnivore shots intramuscular or intravenous… so Kurt did both.
    Another treatment he also tried required injecting himself with a substance called Iscador. Ten injections cost eighty dollars. Iscador was a therapeutic homeopathic preparation created from mistletoe, a very poisonous plant, which is fatal if ingested.
    But the mistletoe story doesn’t start with AIDS or with Christmas. In ancient times, pagans in Northern Europe held orgies before mistletoe altars. This reverence translated into the Christian ritual of hanging mistletoe over doorways at Christmas time. The pagan orgies became, through the years, the custom of kissing under the mistletoe.


A Kind of Venus Fly Trap (VFT) carnivore plant. Photo by Alina Oswald


    Mistletoe is a parasitic plant that grows in the bark of trees and does not obey many of the laws of the plant kingdom—it stores up chlorophyll and stays green throughout the year, indifferent to light. The name “mistletoe” comes from a Celtic word meaning “all-heal,” thus its historical use as remedy for pretty much everything from nervous complaints to bleeding wounds and tumors. Many years later, traditional Chinese and Korean medicine discovered a variety of uses for mistletoe.
    In the early twentieth century, Rudolf Steiner, the creator of anthroposophy (a human oriented spiritual philosophy) introduced the plant to modern medicine. He used medical mistletoe, called Iscador, as a potential cancer treatment and mistletoe extract injections as immune system stimulants.

    While at SWAN [Surviving With AIDS Network], Weston hasn’t tried only the extreme treatments, the Iscador and Carnivore, but also therapies like acupuncture, yoga, meditation and massage, which enhanced his inner strength and gave him new hope that he would survive the disease. Through this kind of gentle treatments, the photographer met wonderful people who offered him the spiritual support he needed to get through that stage in his life. They stood by his side when the PCP, KS and CMV were ravaging his body and they helped him come through.
    These alternative therapy practitioners did not dress like regular doctors. The photographer remembers his Chinese acupuncturist looking like a witch doctor, a Bohemian, wearing wild clothes and carrying with him various herbal preparations. He used to put needles in different parts of Kurt’s body… like the voodoo with his voodoo dolls.
    During his first visit, the acupuncturist did an analysis on Kurt, placing three fingers on his wrist to take his pulse—that was the photographer’s energy pulse or “chi”—which measured the essence of life flowing through his body. The acupuncturist then told Kurt that his chi was really strong, thus making Kurt feel that he had enough life force to survive the disease.
    Most of the volunteers donating their time and kindness to organizations like Test Positive Aware were not infected, yet they were not afraid to work with infected people, to talk to them and comfort them, to touch and hug them, give them massages and embrace them with their bodies and their spirits. To this day Weston thinks of these volunteers as being “the best of humanity.”
    One particular lesbian woman, called Hannah, was what Weston considers his first “warrior.” She took her philosophy from the Native American culture. She was teaching tai chi and yoga classes at TPA because she believed in the power and benefits of moving energy. Hannah believed that one’s physical body can be controlled by one’s mental attitude, and that by combining the power of one’s mind with the power of one’s will, a patient could affect the outcome of the disease process.
    Hannah would end her yoga class by doing a relaxation exercise where she would team up students and have them massage each other so that they could be relaxed and meditative. One time she teamed up with a man whose face and body were covered in very severe KS lesions. Anybody else would have used rubber gloves before touching the poor guy, but not Hannah. She did not hesitate massaging and relaxing him, and was not afraid to touch his lesions. She was completely fearless, inspirational, and motivational.
    And for Kurt she was a tremendous inspiration in strengthening his survival instinct. It was through Hannah that the photographer realized that there were people who could create an inspirational energy in others, and who could give others hope.

Monday, March 19, 2012

The AIDS Alphabet: U is for (Auto-)Urine Therapy

The AIDS Alphabet: U is for Auto-Urine Therapy

The question is: what would you be willing to do to stay alive? Would you drink your own urine?

Believe it or not, drinking urine, otherwise known as amaroli or auto-urine therapy is practice for quite a few people, not only individuals living with HIV/AIDS or any other life-threatening disease. Some offer a full list of health benefits related to drinking one's urine...

In the case of AIDS, especially in a time before the advent of the Lazarus-effect HAART medications, AIDS patients were willing to try anything, anything, to stay alive... including drinking their own urine.

What's like to drink your own urine? How does it taste? When should you drink it and how? Here's AIDS warrior and award-winning photographer Kurt Weston's experience with amaroli.

Hope the excerpt will answer some of your questions. For more answers, check out Journeys Through Darkness: A Biography of AIDS.

As always, thanks for visiting here anytime and on 3/24 at the Rainbow Book Fair.

Alina Oswald
Author of Journeys Through Darkness: A Biography of AIDS


Excerpt from Chapter Four: Self-Reflections


During 1993 and 1994, while Kurt continued to monitor his SWAN [Surviving With AIDS Network] workshops in Chicago, people would attend for a while, and then some of them would just quit coming. They were either too sick to leave their homes or already dead. It was typical for those attending AIDS support groups to see individuals participating and talking to others during the meetings and then disappearing, like they’ve never existed. And it was very frightening for the rest of those attending and trying to survive the disease… Years later, this real-life aspect of AIDS support groups was forever immortalized in the Broadway musical—and later on movie—RENT.
    While the conventional medicine didn’t have much to offer at the time and the only treatment available was making them extremely sick and weak, people living with the virus were desperate to try pretty much anything that could remotely improve their quality of life, and they would listen to anybody who could possibly offer them a chance to survive. AZT was a first positive step toward finding an AIDS treatment, but not all patients could manage staying on the drug.
    A lot of them felt so sick while taking the medication that they quit caring about living. If the drug, which was supposed to keep them alive, made them feel so awful, what was the point of being alive in the first place. Some would rather be dead and end the suffering altogether.
    Other patients believed in a conspiracy theory, that the Big Pharma (the large network of drug companies) was trying to make money off AIDS patients and that the chemicals in the AIDS drugs were poisonous and doing them more harm than good. So a lot of infected people refused to take the AZT or go through chemotherapy. They attempted a more natural approach to fighting their AIDS.
    A lot of those attending SWAN workshops also became extremely interested in alternative treatments. Therefore, a lot of alternative medical practitioners showed up at SWAN meetings to inform the patients of other ways they could fight the virus.
    “There’s a lot of fakery in the world of alternative treatments,” Weston explains. “And some practitioners were preying on people with life threatening, terminal illnesses. [But] if some [medical] doctor came to you and said that you were gonna die because you had this [disease] and there was nothing available to help you, and then somebody else came and said ‘I know something that they don’t know. I’ve got this thing that could help you.’ Wouldn’t you be tempted to try it?”
    During the SWAN meetings alternative medical practitioners showed patients how to keep themselves healthy using therapeutic nutrients, Chinese herbs, and acupuncture. They also discussed very extreme therapies like Ozone therapy, auto-urine therapy or the benefits of various plant extracts and enzymes. That way, patients could get a better understanding of the various possibilities available—other than just chemicals—to treat their HIV. That way, AIDS patients could become more proactive fighting their disease.
    Alternative treatments were very expensive and patients who wanted to try them couldn’t afford to try every one of these treatments. Most of the patients were on disability and didn’t have much money to spend on experimentation, even on those who could potentially extend their lives. In addition, it would have been very time-consuming, plainly not smart and simply not possible for each individual in the SWAN group to experiment with every one of the available alternative treatments.
    So, SWAN participants decided to take turns, and then get together and share what worked and what didn’t work. If it worked, than it was worth the money. If not, then the others didn’t have to give it another thought.
    Each member of the SWAN group volunteered to try various things. For example, one person would take herbs, another would attend an acupuncture session or try urine therapy, while yet another individual would go through a session of Ozone therapy or take yoga classes or massage therapy sessions. And regardless of their experiences, either if they found them helpful, successful or just plain gross, participants would come back to the following SWAN meeting to discuss and share their trials and thoughts with the rest of the group.
    Weston himself has tried some of the most extreme treatments. “I did try drinking urine,” the photographer confesses. “Because one of the Chinese medical practitioners said that some people got very good results from drinking their own urine… so I did that. And I don’t believe that it really did work, but I was willing to try anything.”

    Drinking one’s own urine is also known as auto-urine therapy or amaroli. Before being used as a treatment, amaroli began as a spiritual practice used by yogis of old times to purify their bodies in order to allow the consciousness to expand to its original, cosmic state. In present society, amaroli has re-emerged as an effective alternative therapy used worldwide.
    For internal use, individuals can drink from one to three glasses of their urine per day. Conditions and optimal use may vary if drinking the urine is done while fasting. Midstream urine should be sipped like tea. For external use, individuals can rub their urine on cuts and bruises.

    In the case of AIDS, the theory behind this “treatment” was that the urine contained dead viral fragments that, if re-ingested, could help the immune system, just like taking an attenuated virus and emulating one’s immune system to attack the virus.
    The whole concept made Kurt vomit. He describes the experience as “horrifying.” But on the other hand, the urine was free and he had nothing to lose.
   

Friday, March 16, 2012

The AIDS Alphabet: T is for T Cell and T Cell Count

The AIDS Alphabet: T is for T Cell and T Cell Count
For AIDS warrior and award-winning photographer Kurt Weston, T is also for Thomas Nyland (the subject of award-winning photograph "The Last Light") and Terry Roberts


T cells: Also called CD4 or T helper cells, T cells are part of the immune system cells. Their role is to recognize—and then coordinate attacks against—any foreign invaders like bacteria, viruses, or fungi.
T cell count: T cell count [or sometimes T count] measures an individual’s immune system. It is calculated per unit of blood. A healthy person’s T cell count can vary but it’s usually approximately one thousand (to twelve hundred). 


One cannot talk about T Cell Count without also talking about Viral Load:

Viral Load (VL): Viral Load measures the amount of HIV in the patient’s blood. Two tests—T cell count and Viral Load—measure the evolution and the stage of the HIV infection in a patient’s body. A low T cell count and a high viral load determine an advanced stage or progression of the disease. HAART regimens can keep the viral load at an undetectable level and the T cell count close to the normal range.

AIDS patients have to test and monitor their T cell count and viral load on an ongoing basis. The lower the T cell count, the higher the viral load, and the more serious health problems (more advanced stages of AIDS). But, with the advent of HAART medications, AIDS patients and their physicians can better control the disease. Nowadays an undetectable VL is the norm, a 'norm' that cannot take it for granted, though. But right after the introduction of HAART treatment, AIDS patients still have a depressed immune system. Doctors had to put them on immunotherapies to help stimulate their immune system.

I'd like to offer you a peek into the immunotherapy experience and much more, as told to me by photographer Kurt Weston, during our interviews for Journeys Through Darkness: A Biography of AIDS. Here's an excerpt from Chapter Seven: Seeing the Future (Life Without Va)

Hope to see you on 3/24 at NYC Rainbow Book Fair! As always, thanks for stopping by,
Alina Oswald




The new HAART medications have saved Kurt Weston’s life. Bringing his immune system to a level that doctors considered “safe” was another story and required additional work, time, and treatments.  When he initially started taking Crixivan, Kurt’s immune system was virtually non-existent; therefore the medication, no matter how powerful, could not be as effective as doctors would have liked. They decided to try to boost Kurt’s immune system using immunotherapy—a treatment used to rebuild an individual’s impaired immune system, usually involving the administration of several cycles of immune system stimulants, called immunomodulators. 
    One example of an immunomodulator is Interleukin-2, a substance naturally produced by the body to stimulate its immunity. When the immune system is compromised and deteriorates below a certain level, like in the case of HIV/AIDS or cancer patients, the body cannot produce enough necessary Interleukin-2 and doctors can then intervene and administer a commercial version of the substance in order to boost the body’s immunity. For AIDS patients, Interleukin-2 has the potential to halt HIV progression by maintaining the T cell count in a normal range for prolonged periods of time. Interleukin-2 can also be used for cancer treatment, to prevent the reproduction of cancerous cells.
    For two consecutive years, between 1999 and 2000, Kurt Weston had to go through several Interleukin-2 cycles as part of his immunotherapy. During this time, the photographer received the medication several times a day, five days per cycle, every other month.
    The treatment was helpful and definitely necessary, because the stronger Kurt’s immune system was getting, the better the new HAART medications could help him regain his health and allow him to live an almost normal life. But the treatment also had severe side effects, similar to the ozone therapy ones, including a hundred and four degree fevers and rigors. And because of these side effects, by the second day on Interleukin-2, Kurt started feeling very sick. On the third day, he was holding on to dear life.

Monday, March 12, 2012

The AIDS Alphabet: S is for SWAN, Surviving With AIDS Network

The AIDS Alphabet: S is for SWAN or Surviving With AIDS Network


Photographer Kurt Weston, shared with me the story of SWAN (Surviving With AIDS Network), for the biography Journeys Through Darkness. Here's an excerpt.

As always, thanks for visiting! Look forward to seeing you at the 2012 NYC Rainbow Book Fair

Alina Oswald
www.alina-arts.com
Author of Journeys Through Darkness--A Biography of AIDS



Journeys Through Darkness
In 1993, after Kurt Weston went out on disability, a whole cascade of AIDS opportunistic infections started ravaging his body. His immune system became so deteriorated that purple blotches of KS lesions started to cover his face, body and his insides. At the same time, CMV continued to spread, attacking and scarring his retina and carving holes in his esophagus and creating enough damage for his doctor to wonder how Kurt was able to still be standing.

But he was still alive. If AIDS was to kill him soon, the photographer didn’t want just to hang around waiting for death to come and take him. He was determined to fight until his last breath, so he started to search for new ways to stay alive.
That’s how he found out about other AIDS organizations, like Northside HIV Treatment Center and AIDS Alternative Health Care Project. He started frequenting these ASOs too, and met people who were experimenting with alternative and Chinese ways of treating HIV. They were looking for unconventional ways to help them survive because too many of them had bad reactions to AZT.

Kurt also noticed that these individuals were not sharing their experiences with anybody. They would only whisper about their results with trying things like acupunctures, massage, yoga or the more drastic ozone treatments or drinking their own urine and other similarly bizarre therapies.
Their keeping secret this kind of information intrigued Kurt. He became interested in learning more about the various ways that could keep him—and others like him—alive. The photographer also realized that he needed to find a way to bring together those experimenting with alternative treatments to allow them to openly share their experiences with the others, so that everybody would become more aware of all possible ways to fight the virus. 

Swan on Hamburg Canal. Photo by Alina Oswald
So, in 1993, Kurt Weston founded SWAN. Surviving With AIDS Network was a grassroots group that met twice a week for one or two hours. Afterwards people could hang around to socialize and ask more questions. SWAN offered a safe place for people living with the virus to exchange their AIDS survival stories and experiences, no matter how extreme or bizarre they were.

For instance, because many AIDS patients experienced wasting syndrome and their bodies were losing muscle, becoming frail and with a skeleton appearance, Kurt invited nurse practitioners to his SWAN meetings to monitor the amount of muscle mass of the participants. It was a trade-off between patients and nurse—patients would go and help medical professionals in clinics and in return they would get a free BEI or Bio Electric Impedance test measuring their amount of muscle mass, thus monitoring the wasting process caused by AIDS.

Swan Canal in Hamburg, Germany. Photo by Alina Oswald
Kurt also brought in medical doctors to talk about the latest medications coming up the pipeline. That’s how SWAN participants found out about the life saving HAART (or Highly Active Anti-Retroviral Treatment) regimens, the protease and entry inhibitors that started to be FDA approved only years later in the mid-nineties. That’s how SWAN members and participants learned about the upcoming drug called Fuzeon, which was FDA approved only in 2003. The entry inhibitor, supposed to keep HIV from entering (and then destroying) the T cell, took forever to hit the market because it was a complex drug that was extremely difficult to manufacture. Fuzeon is now available only as an injection. Fifteen years after being diagnosed with AIDS and over ten years from the founding of SWAN, Kurt Weston made Fuzeon part of his drug regimen.

One of the doctors who volunteered speaking at SWAN was an HIV specialist who was in particular dedicated to his work. Kurt noticed that the doctor was truly paying attention to his patients, treating not only the disease, but also the person it touched, and that he had an extensive knowledge of HIV/AIDS and was always on top of the latest, cutting edge treatments.  The only way Kurt could explain the doctor’s dedication, understanding and knowledge of the disease was to think that he was an HIV patient himself. In time, the physician became a regular at the SWAN meetings.

Kurt was so impressed with the doctor’s willingness to try treating AIDS with some of the most aggressive treatments available at the time that he decided to become his patient. After his third bout of pneumonia, the photographer saw for himself just how open his new physician was to experimental treatments—his new doctor was the one who agreed to desensitize Kurt back to Bactrim. A couple years later, in 1995, when Kurt left Chicago and moved to California, he left his physician to take over the SWAN meetings.

Friday, March 9, 2012

The AIDS Alphabet: R is for Retro...

The AIDS Alphabet: R is for Retro: Retrovirus, anti-Retroviral

HIV is a retro-virus. Medications patients take to keep their retrovirus in check are called anti-retroviral medications, or ARV. In the mid-nineties, Dr. Ho came up with a new class of medications, called HAART, or Highly Active Anti-Retroviral Treatment. HAART (sometimes called ART) and pronounced like "heart" is a combination therapy of three or more medications (usually three or four). It is also known as "the cocktail."

HAART has had a so-called "Lazarus effect" on the lucky patients who could be put on the treatment. That's because HAART has brought individuals on the brink of death back to life, to an active life.

In the fourth decade of the pandemic, it's difficult to remember what it used to take to get these life-saving, life-extending medications. That's because many people were not alive during a time before the advent of HAART, or many other reasons. As I often mention, three decades (now way into our fourth) is a long time to keep track, pay attention and remember, still, AIDS is not something to be put on the back burner, not now and definitely not then...

Here's a short excerpt from Journeys Through Darkness, retelling how AIDS warrior and award-winning visual artist Kurt Weston recalls the beginning of a time of HAART drugs and what it used to take to win the drug lottery.

Hope you enjoy the read. Hope you'll stop by NYC's Rainbow Book Fair, 3/24.

Alina Oswald
Author of Journeys Through Darkness--A Biography of AIDS








Excerpt from Chapter Five: Losing the Light

   By January 1996 the photographer started to realize that he was already legally blind, but when he shared his concerns with his doctor, the HIV specialist remained sure he could save Kurt’s vision. The available solution was to try two new, experimental medications to treat the CMV.
    About the same time a new life-saving medication was coming on the market. It was one of the first protease inhibitors (or P.I.s) medications called Crixivan, and it was part of a new treatment called HAART (pronounced like “heart”) regimen, otherwise known as “the cocktail,” which was going to radically change patients’ lives, turning AIDS from a definite death sentence into the manageable disease that AIDS is today.  
    The Highly Active Anti-Retroviral Treatment was (and continues to be) a revolutionary triple-drug therapy made possible by Doctor Ho of the Aaron Diamond AIDS Research Center in New York City. HAART put Doctor Ho on the cover of Time magazine and made him Person of the Year in 1996.
    These new kinds of medications first started coming out in December 1995, so during the previous months, drugs like Crixivan were still under last, or phase three, of testing and on the verge of getting FDA approved. Because there were not enough medications for everybody needing them, some drug companies offered to give them to patients on a compassionate use basis only, otherwise known as expanded access programs.
    EAP was (still is) a program through which pharmaceutical companies distributed upcoming medications that were already in the pipeline but yet to be FDA approved to people who needed them most. This process had been very rare and extremely difficult before the AIDS years. Usually, a doctor had to call the manufacturer and then the FDA, fill out hours-worth of paperwork and wait for months to get a drug sample, enough only for one patient. And then start all over again, for the next patient. And so on.
The Awakening. Copyright 2009 by Alina Oswald
    Fortunately AIDS has changed all that. The epidemic has forced people living with the disease and AIDS organizations to learn fast the drug industry regulations, to meet with people from the industry and with government officials and to draw proposals. But nothing really happened until people living with AIDS went out in the streets and demonstrated, literally, for their lives. A familiar example is the 1988 ACT-UP demonstration on Wall Street, New York City. [ACT-UP, or AIDS Coalition to Unleash Power was founded in 1987.]
    Only then, the FDA started allowing drug companies to open trial programs as soon as they had available at least some safety information on the drug. That’s how the “drug lotteries” started in 1989. There were several such lotteries and participants had to meet several criteria.
    For example, in 1995 Glaxo provided a (then) upcoming medication called 3TC to over thirty-two thousand people in the United States. It was the largest expanded access program ever.
    Merck announced its Crixivan lottery in July 1995. The company was giving away drugs to eleven hundred people in the U.S. and an additional seven hundred fifty patients from twenty-nine countries in Europe, South America, Canada, and Australia. Merck was to pay for the drug, including shipping, and also for post-selection central laboratory tests and the urine pregnancy tests when and if needed. To be able to participate in Merck-organized P.I. lottery, AIDS patients had to meet several criteria, including to be clinically stable, to be able to follow directions and have certain T cell counts and viral loads.

Tuesday, March 6, 2012

The AIDS Alphabet: Q is for Quasi, Kurt Weston's Dog

The AIDS Alphabet: Q is for Quasi (for Quasimodo), Kurt Weston's Dog

Ambrose, Kurt's guide dog taking a well-deserved nap
We need friends, especially to see us through tough times. Tough times defined by AIDS. Friends defined by man's best friend. I'd like to share here the story of one man's best friend. The man is AIDS warrior and award-winning photographer Kurt Weston. His best friend is Quasi, his dog. And now Ambrose, his guide dog.

Here's an excerpt from Chapter Seven of Journeys Through Darkness: A Biography of AIDS. Hope you enjoy the read.

I'll be at the Rainbow Book Fair, in NYC, 3/24. Stop by!
As always, thanks for stopping by.
Alina Oswald
Author of Journeys Through Darkness



Like his master, Kurt’s now aging dog is also a survivor. After Va’s death, Kurt continued to stay in touch with Va’s family. So, when they had a litter of puppies from their Springer Spaniel, Kurt set his heart on one of the puppies and decided it was going to be his, no matter what. Kurt even named his future pet Quasi, for Quasimodo, the protagonist’s name in the 1831 Victor Hugo’s novel The Hunchback of Notre Dame that tells the story of a man born with extreme deformities, who was found abandoned on the steps of Notre Dame on Quasimodo Sunday (the first Sunday after Easter)—hence his name.
    Despite Kurt’s dreams for his furry friend, Va’s family had other plans for the litter and already had a potential buyer for Quasi. They were just waiting for the puppy to get old enough to be sold.

Thursday, March 1, 2012

Blind Imagination: A video by Taylor Adam Swift featuring Kurt Weston, the subject of Journeys Through Darkness: A Biography of AIDS

The Blind Imagination: A video by Taylor Adam Swift featuring Kurt Weston, the subject of Journeys Through Darkness: A Biography of AIDS
 
This is a short add-on to today's post. It has come to my attention that there's a video on Vimeo, called The Blind Imagination, by the phenomenal Taylor Adam Swift. Blind Imagination features interviews with Kurt Weston, the award-winning legally blind photographer in Journeys Through Darkness, and also a few of his photography, also part of the book. 
To learn more about Weston's fantastic journey, check out my book and this inspiring video Blind Imagination, by Taylor Adam Swift.  http://vimeo.com/22689103
Hope you enjoy it. Thanks for stopping by!
  Many thanks to Taylor Adam Swift!
 
Alina Oswald
Author of Journeys Through Darkness A Biography of AIDS
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The Blind Imagination from Taylor Adam Swift on Vimeo.

The Art of "Proper" Love per CNN's Piers Morgan in Piers Morgan Tonight and author Joseph Dispenza in Older Man/Younger Man: A Love Story

The Art of "Proper" Love... asked by CNN's Piers Morgan and written about by author Joseph Dispenza in Older Man/Younger Man: A Love Story


Shadows of Love. Copyright 2011 by Alina Oswald. All Rights Reserved.
Now that February is over, can we still talk about love? Is love still a timely topic? That brings up the important question (and I mean it):

"How many times have you been properly in love?" The question CNN's Piers Morgan always asks on his show, Piers Morgan Tonight, may sound funny, but, thinking about it, it is, indeed, a vital question. Love is, after all, an intrinsic part of life. (Also, I do confess, I'm a fan of AC360 and Piers Morgan; while enjoying the British accent, I'm always waiting for the "proper" love question to come up, usually towards the end of the show.)


But Piers Morgan's question brings up more questions:

Is "proper" love a timeless matter or only pertaining to the month of February, in particular around or on Valentine's Day?

If there is such thing as "proper" love, is such love actually possible? 

And, most importantly: What exactly is "proper" love?

Maybe I should have reversed the order of the questions, but wanted to leave the best for last...
Let's attempt to figure out "proper" love...

First of all, while many countries celebrate love on Valentine's Day, others remember love in March, for example, March 1st, to be precise.  Therefore, the timeless element of love.

Love at Sunset. Copyright 2010 by Alina Oswald. All Rights Reserved.
To answer the rest of the questions, read Joseph Dispenza's memoir, Older Man/Younger Man: A Love Story. I truly enjoyed this wonderful book and wrote a short review, which was originally published in A&U Magazine.

Here's my review of Dispenza's Older Man/Younger Man: A Love Story. Hope you'll enjoy the read and the book.

Thanks for visiting,



    by Joseph Dispenza
    Review by Alina Oswald
   
        "How many times have you ever been properly in love?" CNN host Piers Morgan's question is being asked quite often these days. Yet, to answer the question... properly, one may first have to define "proper love."
        It sounds funny, right? But the few lucky enough to experience it may agree that proper love can be the kind that conquers all. Is that possible? Just ask author Joseph Dispenza.
        Love is the protagonist in his memoir, Older Man/Younger Man: A Love Story, which recounts the author's relationship with a man thirty years his junior. Older Man/Younger Man is a candid, compelling story of self-discovery and coming out to oneself and the world, in which elements defining us as human beings capable of love take center stage--weaknesses and fears, courage, self-doubt and self-acceptance, trust and honesty, and also hope.
        Love--the kind Dispenza portrays in his latest book--is a multidimensional love that, indeed, wins the strength to conquer all, while (or maybe because) it defies society norms, redefining them. It's the kind of love that transcends time, but is it strong enough to survive it?
        Time--or lack thereof--has a multilayered symbolism, intrinsic to Older Man/Younger Man's story and, by extension, to any journey through life and love, as part of life. In Older Man/Younger Man time defines the characters' intergenerational relationship and also a present (time) brave enough to adjust society's views to allowing relationships once considered unconventional (be that based on age or gender) become conventional.
        Maybe the main characteristic of time is defined by the limits it imposes on our physical existence. The threat of this realization weaves through the story of Older Man/Younger Man, amplified by a life-threatening disease that touches one of the characters.
        Yet, facing mortality enriches true, "proper" love, giving it the strength to conquer all. That strength and other attributes shine through in Older Man/Younger Man, a touching story and profound lesson in the surprises of life and power of love.