Showing posts with label HCV. Show all posts
Showing posts with label HCV. Show all posts

Saturday, March 10, 2012

An Apology For Not Sharing The Miracle Of Being Cured Of Hepatitis C And A Long Silence

On March 1, 2012, I went in to Dr. Peter Ruane's office on Olympic Avenue in Los Angeles to mark the sixth month of treatment. It actually was a little over six months since I took my first dosage of the drugs on September 18, 2012. I was told I would find out the results of the clinical trials and whether or not I had been clear of the Hepatitis C virus since the 4th week of the trials. I knew that I had been clear for the past two months, but if I had been clear since the 4th week, the trials were over, and I was officially cured. I must admit I was not surprised by the answer.
John Lavitt Taking His First Dose With A Smile On 9-18-11
As I sat in the waiting room, Chris Rice, the nurse who manages the trials, entered my name into the computer database in the back offices. I literally hear a whoop of delight as Chris came running back into the waiting room with my results in hand. With tears in his eyes, jumping up and down, Chris told me that I was cured, the first one in the Los Angeles trials, and I no longer had to take the medicine anymore. Finally, after six months of pain and suffering, it was over. And I was jubilant and exhausted and speechless and calling everybody and utterly overwhelmed.

Before I go any further, I want to apologize for everyone who has been reading this blog for not letting you know sooner and for once again sinking into the morass of a long silence. There is no reason that makes any sense. I should have told you right away, even if most of you found out on Facebook or other means and ways from text messages to phone calls in which the information was shared. It was almost as if the miracle was too much to handle when it came to these words, and there was so much to say that I strangely or typically chose to say nothing. I am sorry.

The first thing I did when I heard was to call and text everyone close to me, letting them know what had happened. The love and celebratory responses I experienced took my breath away. When I went into the examination room to take off my clothes, get several vials of my blood taken once again, and have the remains of the rash and everything else examined, I was surprised by what happened next. 

Chris came in with my files and he was overflowing with happiness and joy. Although they ran both Hepatitis C and HIV clinical trials in the office, Chris told me that they had never seen someone go through such extreme side effects and not stop treatment and resign from a trial. He described as the most courageous (sometimes I think the most stupid, even being healed) patient they had ever seen, and he was so happy that the result of the trials had been successful. I was 90 to 95% certain of being cured of Hepatitis C, although my blod would have to be taken once a month for the next six months to guarantee the results. Still, I would take those odds in Vegas on any day. Chris actually told me that seeing me cured gave a sense of meaning to his work and this most recent of clinical trials for a drug that is never coming to market. Why? It has already been eclipsed.

A lot has happened in the past ten days, and I will be writing many blogs describing the strange and wonderful and surprisingly difficult experience of being cured. It is beautiful and lovely, but it is not all good and the minefields that have revealed themselves have been surprising. It is important for me to note two things now that will be described in detail later...

  1. I stopped taking the drugs - the Ribavirin and the Interferon - five days before I found out my results. The sudden increase in disgusting side effects was crazy. Every time another one popped up, I would shake my head and say out loud, "Really? After all I have been through?" I knew I was cured on a holistic level that was intense and profound. I have never been so in touch with my body and I knew without question it was the right decision.
  2. The first thing I did after leaving the doctor's office, after buying a bag of fresh jacima, coconut, and pineapple with a touch of chile and lots of lemon from a Mexican fruit cart, was to call everyone who had helped me through the worst times of the clinical trials when the rash would not stop itching and the staph infection was screaming and it was hell on earth. What I did was express gratitude and thank them for being there for me. When you see someone you care about suffering on such an intense level, it is hard not to turn away.
My First Hepatitis Free Los Angeles Fruit Cart Experience

Friday, February 24, 2012

Hepatits C Has Killed More People In The United States Over The Past Decade Than HIV and AIDS Or Any Other Form Of Viral Infection

Let’s be perfectly clear – the Hepatitis C virus, known as HCV, has killed more people in the United States over the past ten years than the AIDS-causing HIV virus. But HIV information and education resources are everywhere, and Hepatitis is the ignored and forgotten killer.  HCV is the leading chronic virus infection leading to death in the United States. The victims most often are baby boomers and most of them do not know they have the virus until it is too late. As many as 2 million of the 5.5 million infected American citizens do not even know they have the virus. While the fight against HIV has been championed, HCV has been allowed to invade our country and do extreme damage that we have chosen to ignore with a smile and a shrug of our shoulders.

Enough is enough!  Researchers from the US Centers for Disease Control and Prevention (CDC) found in a study published in the February 21, 2012 issue of the Annals of Internal Medicine that hepatitis C had overtaken HIV as a cause of death in the United States by 2007. Deaths in the United States due to HIV infection have been steadily decreasing, and dropped below 13,000 in 2007, while deaths from hepatitis C infection have been steadily increasing, first surpassing 15,000 per year in 2007. The good news is that the various drug combination strategies that have done so much to transform HIV infection from a death sentence to a manageable disease are poised to further boost cure rates for those infected with hepatitis C.
PERSONS AT RISK According To The CDC

Chronic Hepatitis C has been diagnosed in about three million people in the United States. If you received a blood infusion before 1992 in any country, including America, you are at risk. If you received a blood transfusion in any European country prior to the past ten years, you could be at risk. If you received a blood transfusion in a third world country last year, you could be at risk. A major problem is that HCV often causes no symptoms before it is almost too late and the only viable treatment is a liver transplant. Many who have been infected for years or even decades may remain unaware until deadly symptoms finally appear with a vengeance. The ultimate cause of death attributable to chronic infection is cirrhosis or liver cancer, and there is no vaccine.

Compared to HIV or hepatitis B, the risk of hepatitis C being transmitted by sex is low. However, like HIV, that risk is increased in homosexual encounters. The idea of screening the general population seems obvious. At least, offer screenings at local businesses and clinics like they do with HIV. The problem is that the HCV test is much more expensive and much more difficult to do than the HIV test, What has been controversial is whether or not all baby boomers should be screened, but why the insurance companies are ignoring the threat to their clients and rejecting screening opportunities. Yet, another study suggests that a one-time blood test ordered by primary care providers to screen for antibodies to hepatitis C in those born between 1945 and 1965 would be cost effective – costing $2,874 for each chronically infected patient identified – and would lead to the identification of more than a million previously undiagnosed cases.
SCREENING RECOMMENDATIONS OF THE CDC

It is important not to mistake Hepatitis A or Hepatitis B for Hepatitis C. Despite having the same name, they are very different diseases. Hepatitis A is the traditional version of hepatitis that we have head about since we were kids. Hepatitis B chronically infects about half as many as hepatitis C in the United States, but it hits those of Asian descent particularly hard. Hepatitis B is responsible for about 1,800 deaths yearly in the United States. Despite the similar names, the two viruses are not closely related. Hepatitis B is spread much more easily through sexual intercourse, and passes from mother to newborn child much more easily. In most adults who become infected the immune system successfully controls infection. In addition, there are vaccines for hepatitis B.

It is time for a medical revolution in regards to Hepatitis C and a powerful campaign across all traditional lines of media to raise awareness. When two million Americans, despite past lifestyle choices, are in critical danger and do not even know it, enough is enough. We must take action or watch the death rates rise even higher until it becomes a black spot on the soul of our country.

Wednesday, February 1, 2012

Beyond The Treatment Scars, Haunted By Genius And The Curse Of Bitterly Wondering Why It Is Not My Own

There is a reason why Envy is one of the Seven Deadly Sins, and it has nothing to do with a serial killer coming after you to exact vengeance or any other brilliant thriller by David Fincher. Is there any normative occurrence as corrosive to the soul as the act of feeling greater than or less than another person? When I compare myself to other people, when I mistake their path for my own, when I believe like a child that the grass is always and your ice cream is so much sweeter, it is nothing less than the devil taking shape beyond a metaphor.

When I refer to the devil, I am not thinking about Lucifer falling from the heavens with the other damned angels or any other Christian story, but rather the word is so powerful in the context of the destructive and negative impulses that lurk within my own soul. The devil in my own is my sense that I am not good enough and not worthy of love. It burns and rips and tears and scratches just beneath my consciousness, occasionally rising into reality as sarcasm and bitterness, fear and contempt, entitlement and grandiosity, lust and so many other forms of violence against myself and the world. Like alcohol to the alcoholic, the devil of comparison is cunning, baffling and powerful, and arises in the most unexpected fashions.



Seeing the absurd comic book cover above, you are probably shaking your head and thinking, "Oh no, here comes a terrible the elephant in the room analogy where we are asked to see the elephant towering within ourselves." 

Nope, that's not it at all. But I know exactly where you are coming from and why that thought would arise. I have been a comic book reader and fan, lover and mild fanatic for many years, and I believe no widely viewed and experienced art form evolved and grew more since the 1980s in the world. But that is a subject for another blog. I still read comic books in collected graphic novel form, but it is rarer and rarer that I find something I want to read. 

Having been spoiled by the wonders of Alan Moore and Frank Miller, Neil Gaiman and Warren Ellis, it seems that tons of books look okay, but not really worth buying and reading. The Walking Dead by Robert Kirkman is impressive and led to a great cable show, but, from my perspective, it does not compare to my favorite books. As a result, I often browse the extensive graphic novel section of my favorite second-hand book store Counterpoint that just happens to be down the street from my apartment, looking for something to read.

A month or so ago, I stumbled upon Elephantmen: Wounded Animals, a graphic novel that looked kind of silly to me upon first glance, although I was drawn in by the cover art of the Mexican artist José Ladrönn. It had a wonderful noir feel to it as if The Maltese Falcon and Blade Runner decided to have a child with Taxi Driver and Horton Hears A Who. Even though the volume was in perfect condition and only $8, less than half of the original price, I am a cheap bastard some of the time, somewhat impoverished most of the time, and always questioning all of the time. It just looked too silly like it wouldn't work, despite the great reviews on the back cover, and I couldn't bring myself to buy it.

About a week later, browsing again in Counterpoint, I stumbled upon the volume, and it looked back at me with those accusing pages that demanded to be read. Fine, I said to myself, eight bucks is nothing, and I can always give it away to a friend later on. Wow, was that strutting little boy in for a surprise!

Elephantmen is not only good, it is beautiful and strangely emotional and a stunning piece of work. Using an Amazon gift card, I was given for Christmas, I already have sent for several other volumes. It is incredible how Starkings is able to take anthropomorphic Elephants and Rhinos, Hippos and Crocodiles, Boars and Camales, and actually allow the reader to feel the nuances of what they are feeling and experiencing in a world that rejects them as genetic engineered horrors. Of course, the art is consistently powerful and is perfectly in tune with the writing, but the art would fall on its face without those nuances and the intricate but simple crafting of the story lines. 


Isn't it amazing how something so extreme and absurd can shed such a sweet and unwavering spotlight on prejudice and not judging a book by its cover (in more ways than one) and our fear of the other, of the unknown, of that which is not us? Cycling back to the original theme and being haunted by genius and the curse of wondering why it is not my own, the ugly moment occurred this evening as I was sitting on my favorite unspoken and reading Elephantmen: Wounded Animals again. Lord only know, I picked up that habit from my father as a kid, and I don't think it's going anywhere anytime soon.

As I was reading, I began to leaf through About the Creators section in the back that included the bios of Starkings and the pencillers and the colorists and the letterers and so forth. There are blurbs about and pictures of the 17 creators in total, and the section is done very well. Reading the blurbs as I sat on my bitter throne, I felt the lizard of envy rising up from my bowels as I began wondering why I have never had such success. Sure, I get the bit about the artists and visual guys, but how did Starkings become such a great writer and get the opportunity to write comic book scripts? Why wasn't I given that shot? Really, when you think about it, it's just not fair and the universe sucks and everyone hates me and I am a loser and destined to be a failure forever and ever and so it goes, on and on and on...

How good are you at beating yourself up? I am the virtual Picasso of destroying John Lavitt and reducing him to a withered husk of self-pitying shreds. Nobody says the kind of nasty shit to me that I say to myself all the time as the devil appears, and I feel less than the rest of the world. I quickly lose touch with my gratitude and my fortune, my wonder and my love as the dragon of envy roars its ugly head and burns me to a crisp with its fiery breath. It is not Puff the Magic Dragon and there is no frolicking in the autumn mist with little Jackie Paper.

There is very little that more corrosive to the human soul than using the success of other people and their accomplishments as a weapon against yourself. What I have learned in theory and often put to use in practice is that nobody' success ever diminishes me. If everyone in the world was successful and were able to turn their dreams into a reality, welcome to heaven. Why would I ever want to prevent heaven my popping up on our so often tawdry little planet? How great it would be if my friends and family experienced the happiness and wonders, the creative satisfaction and the love that they truly deserve! If I can take this idea and feeling, this spiritual principle, and turn it into a reality, as Louis Armstrong would say, what a wonderful world it would be.

Okay, yes, I know I will relapse regularly when it comes to my character defects as the seven deadly sins rise from within. Why do I allow the false behemoths of fear and the bloated leviathans of insecurity  to rule those moments? Yet, I have learned that I don't have to beat myself up for making such mistakes. I can be kind and gentle to John and try to learn the triggers and fault lines that lead to such negative eruptions. I can enjoy the genius of Richard Starkings and his co-creators without being envious or jealous, bitter or self-defeating. Slowly, I will improve and experience my authenticity as John and not as anyone else in the world. Again, Louis would chime in, what a wonderful experience that is and will continue to be if I avoid shooting myself in the foot and allow heaven to rise from within.






Saturday, January 21, 2012

Money Talks - If The Hepatitis C Market Is The Next Mecca For The Pharmaceutical Fat Cats, Who Will Win The Rat Race?


Is the Hepatitis C market the next Mecca for the pharmaceutical sector? If so, who will win the rat race: the millions of HCV patient with little or no resources or the pharmaceutical fat cats. It seems like the fat cats are salivating right now if we go by the flurry of activity and heightened interest in the HCV market. The Hepatitis C virus (HCV) market seems to have caught the eye of several pharma/biotech companies – as evident by the deals being signed for the development of drugs for the treatment of HCV.


Biotech rivalries are like bare knuckles boxing matches: two lone fighters battle until they are beaten and bloodied for the prize. But the hepatitis C market is turning into a battle royal that’s more wide open and unpredictable. The medical advances in hepatitis C have been dizzying this year, especially in what it means in terms of multi-billion dollar business implications. The safest thing to say is that there’s plenty of good news for patients this year, but that shareholders in the major hepatitis C drug developers had better hold on tight as a new standard of care gets established.


Pharmaceutical Companies Battling For Big HCV Profits
The Allure of the HCV Market
HCV is a hot development area which has come into the limelight with the launch of two new treatments – Vertex Pharmaceuticals’ (NASDAQ:VRTX) Incivek and Merck’s (NYSE:MRK) Victrelis. Both drugs gained approval in the US earlier this year. Incivek, which was launched in May 2011, posted a whopping $419.6 million in sales in the first full quarter of its launch.


With two new recently launched products in the market, why is the HCV market considered so attractive? Firstly, it is estimated that about 170 million people suffer from HCV infection across the world. However, the treated population is much lower. In major markets like the US, EU, Japan, Australia, Turkey, Canada, only 200,000 HCV patients out of a total of more than 12 million are estimated to receive treatment each year. This means a huge number of HCV patients go untreated, leaving the field open for new treatments. 


A 48-week course of both peg-interferon and ribavirin are the standard treatment for genotype 1 HCV infection. However, this treatment regimen is associated with significant side-effects like fatigue, flu-like symptoms, rash, depression and anemia. As we have seen with me, it is tough to say the least. However, let's not forget that my extreme side effects, the endless itching and pain of the rash, was caused by the new Protease Inhibitor and not the other drugs. Hell, in retrospect, the other drugs that I still take every week are a walk in the park in comparison. Yes, it sucks, but it is so very far from hell on earth.


With a large number of HCV patients failing to achieve a sustained viral response (SVR) on the current standard of care, there are several patients who would be open to treatment with new and potentially more effective therapies. These factors have made the HCV market an attractive commercial opportunity for pharma and biotech companies. It also has made it attractive to the millions of patients like myself with the American genotype. Suddenly we have a chance to live that has risen from about 45% to almost 80% treatment success rate.


Cocktail Therapy – The Next Big Thing in HCV
The goal is to change the treatment paradigm for HCV patients by providing them with all-oral treatment regimens. The aim is to develop a treatment which does not require the administration of interferon, thereby doing away with a whole range of side effects. The treatment duration will also be shorter. In retrospect, I wish I had waited until such treatments were available, but regrets are silly. I am powerless over the past and I cannot change it. All I can do is embrace health and happiness in the future.
The Financial Fat Cats Love The HCV Marketplace As It Opens Up


Who Will Win the Rat Race?
With several companies pursuing cocktail therapies for HCV, it will be interesting to see which of these companies will be the first to hit the market with a new treatment option. Hopefully, the rat race will help the millions of infected Americans and not just line of the pockets of the pharmaceutical fat cats.

Monday, January 16, 2012

No Big Headlines For Hepatitis C In The United States, No Awareness Campaigns: Millions Unaware They Are Infected, Millions Believe The Treatment Is Worse Than The Disease

Hepatitis C has never really captured big headlines in the U.S., as it has never benefitted from massive awareness boosting campaigns that have supported research for, say, HIV, or breast cancer. But hepatitis C has clearly emerged as one of the biggest opportunities in pharmaceuticals over the past few years. There are more than 3 million people in the U.S., and an estimated 170 million worldwide, with this liver infection that can lead to cirrhosis and liver cancer. 
How Did You Get Infected And Is There A Stigma?


What is insane is that most people have never bothered to get treated, partly because the infection takes years to fully wreak havoc. The other reason is the standard of care with a combination of drugs—pegylated interferon alpha and ribavirin—causes flu-like symptoms that last for almost a year, and usually cures only 30-40 percent of patients. Essentially, most people figure the treatment is worse than the disease. Combined with the millions unaware of the infection, the potential for a health catastrophe could quickly become a morbid reality.
While people on Wall Street like to embrace a simple storyline with clear winners and losers, the hepatitis C virus is one tricky adversary. Like HIV, it has a tendency to mutate and develop resistance capabilities, whenever scientists throw a new antiviral drug against it. So there isn’t likely to be a single magic bullet. The most likely route to success is with a combination of two, three, or maybe four antiviral drugs that attack the virus from different angles, making it much harder for the bug to mutate and escape one drug. Now that there is a safety net in the form of the new protease inhibitors, will the infected take advantage if it? And what of the millions unaware that they are infected? How can they be helped?
For the First Time, There Is A Safety Net For HCV. Will It Be Trusted?
The new Protease Inhibitors raised the bar very high, by getting cure rates up to around 80 percent. Doctors are certainly eager to get rid of the nasty interferon part of the regimen, but they will only do that when a new regimen can do at least as well on cure rates. Without question, the bar on the safety net is set quite high already.

Thursday, December 29, 2011

This Is What Is Needed To Stem The Tide - Mount Sinai Medical Center Launches Initiative to Erase the Stigma of Hepatitis C and Encourage Everyone to Get Tested


Being tested for the Hepatitis C virus is essential because it is so easy to miss and the incubation period of the disease is so long without actual physical effects or sickness. Although Mount Sinai Medical Center's Dr. Douglas Dieterich, Professor of Medicine in the Division of Liver Diseases and former Hepatitis C patient, believes the number of undiagnosed Hepatitis C patients is over 2 million, I feel that number should be expanded to close to 4 million. 

With the incredibly long incubation period and the multiple infections caused in the past by blood transfusions and in hospital procedures, the number will turn out to be much higher than expected. Since the virus can have an incubation period of 20 to 40 years, imagine how many innocent Americans could have been exposed before the blood supply was properly screened on a consistent basis. Remember that screening only began in America in May of 1990 when the FDA approved a test to screen the nation's blood supply. It took longer than expected for such a test to become a normative procedure in every hospital and clinic across the country. As a result, many people were accidentally infected in the 1990s. 

Since 2007, more people have died from HCV than from HIV. Such a statistic is astounding. What is even more frightening is that 4 times as many people will be die of complications from the Hepatitis C virus in 2020 than died in 2010. A fourfold increase is downright terrifying. Indeed, HCV is a modern American plague that needs to be addressed today. Yes, it is difficult to transmit and can only be transmitted through blood, but the number of people already infected have reached plague numbers. Once over 1% of a population is infected with a disease, it properly can be referred to as a plague.

NEW YORK, NY, Nov 16, 2011 (MARKETWIRE via COMTEX)

The Mount Sinai Medical Center has embarked on a new mission to educate the public about Hepatitis C and urge more Americans to be tested for this "silent killer." While two million people in the US suffer from Hepatitis C, an additional two million are undiagnosed, putting them at risk for devastating long-term effects. Through an important video program, The Mount Sinai Medical Center's Dr. Douglas Dieterich, Professor of Medicine in the Division of Liver Diseases and former Hepatitis C patient, urges people to take charge of their health by getting tested for the virus, even if no symptoms are present. 

Did you know that not all patients are IV drug or intranasal cocaine user? Other ways to contract the virus include: body piercings, tattoos, manicures, pedicures, or even while playing sports such as boxing and rugby.
How Did You Get Infected? So Many Innocents are so Terribly Surprised!

The virus can creep along very silently, presenting no symptoms or abnormal liver test results for 30-40 years--Hepatitis C is spread by blood to blood contact. If left undetected, the virus can lead to advanced scarring of the liver, or a condition known as cirrhosis, and eventually cause liver failure or other major complications including liver cancer--About 4 times as many people will die in 2020 from Hepatitis C then in 2010. "Many people around the world, probably the majority got it, through the fault of the health care system. They got infected needles from vaccines or other medical devices when they were in the medical world," says Dr. Dieterich.

Along with shattering the stigma surrounding the Hepatitis C virus, Dr. Dieterich wants patients to understand that testing positive for the virus is not a death sentence if caught early. Dr. Dieterich himself contracted the virus in 1977 while attending medical school. He accidentally stuck himself with a needle infected with Hepatitis C and suffered from a rare, but acute reaction. Frustrated with his diagnosis and lack of options to treat it, Dr. Dieterich dedicated his career to studying Hepatitis C and finding effective treatment options for those diagnosed. 

He was cured in 1998 after an 18-month regimen of daily interferon injections and Ribavirin -- an anti-viral drug that was unavailable at the time of his diagnosis. While he was lucky, he knew there was much more work to be done. Today patients have access to new, FDA-approved protease inhibitors that bring the cure rate to 80 percent. "If we can treat you, we can cure you almost all of the time. So go get tested before it's too late," says Dr. Dieterich