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

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.

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.

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.

Why The Silence? A Certain Malaise Sets In As The Hell Of The Side Effects Ends And Purgatory Is Restored But A Hero Is Reborn

I would apologize for the recent silence, but I honestly don't believe that such an apology is necessary. After going through the utter hell of six straight weeks of endless itching and intense pain, I find myself giving in to a certain malaise and ennui. Yes, purgatory is an utter pleasure when compared to the fires down below, but it is not quite a celebration and not quite an inspiration. I am tired and burned out to the bone as I struggle to retain a certain equilibrium within. It is strange because the rewards of such an experience are so much greater than the scars, but the scars and the damage of the wounds remain.

The thing about a hero, is even when it doesn't look like there's a light at the end of the tunnel, he's going to keep digging, he's going to keep trying to do right and make up for what's gone before, just because that's who he is.                                                                — Joss Whedon

I am beginning a new journey as I approach the end of treatment that I believe is successful and the Hepatitis C virus will have been eradicated from my body. But I still have another month and a half of Interferon and Ribavirin so I spend several days each week with flu-like symptoms and exhaustion. It remains difficult to eat at times and the indigestion is constant and the toilet is not my friend. But I have survived and I have learned lessons that not only cannot be taken from me, but will be maintained through practice and a loving focus. It is nice not only to see the light at the end of the tunnel, but to walk into the sunshine with the knowledge that another always awaits.

Faith Is The Realization That The Light Is The Gift Of A New Dawn

Do you recognize the hero within? Not only are you the main character of your story, but you alos have the power to define the genre of the story. It does not have to be a tragedy or a farce, it does not have to be epic or absurd. Your story is your own and you are the hero of its creation. Welcome to the freedom to define the journey of your name and your life.

Here is a new poem that I rediscovred and recently recreated... gotta love such a reenvisioning and a reawakening and a simple return because even if re is a prefix, occurring originally in  Latin, used with the meaning “again” or “again and again” to indicate repetition,or with the meaning “back” or “backward” to indicate withdrawal or backward motion, it still provides the ability to express the eternal recurrence of being a-okay. Here is that poem I mentioned above...

between

between the first step taken

and lying down on a leather couch,

between the opening of a door

and the turning of the bedroom lock,

between putting pen to paper

and checking out what’s in the fridge

fall the sunken eyes of ennui.

between the biting of a nail

and the opening of a fist,

between the twitching of a palm

and the raising of a thumb,

between the flapping of tongues

and the calmness of silence

stands the bright shadow of courage.

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

Night 126 - Good to Know! Drinking Coffee Doubles Hep C Treatment Responses, Minimizes Treatment Side Effects While Slowing The Progression of The Virus In The Liver

Drinking Coffee Doubles Hep C Treatment ResponsesCoffee Helps Minimize Hepatitis C Treatment Side EffectsCoffee Slows Progression of Hep C Liver DiseaseIs there anything a good cup of coffee (or three) can’t do? Not only does coffee consumption slow liver disease progression and increase the chances of success while undergoing treatment for chronic hepatitis C infection, but drinking three or more cups a day also appears to reduce the incidence of hep C treatment side effects by more than 80 percent. 

Now they tell us! I have been cutting back on my espresso for the last three months and missing it terribly. I thought coffee was bad for the liver and sped me up too much with all the prescription meds in my body. Alas, I was wrong, and now I get to indulge once again.

Whenever I walk into the Bourgeois Pig, the Baristas working always ask if I want a double espresso during the day. I have had to refuse for a few months now, but no longer. At night, I tend to drink tea with lemon and honey. Fascinating stuff, huh? 

Night 123 - Doing Better All The Time With A Glorious Shift From Hell On Earth To Consistently Uncomfortable

The silence in this account of my treatment frustrates me because there are several blogs that I wanted to write, but I never did. There have been such tremendous shifts in my condition that I have been overwhelmed by the simple processing of the extreme nightmare of what happened and the strange awakening of being on the other side. Yes, I have three more months of the Interferon and the Ribavirin, and I am still exhausted and sick with those side effects. But they are nothing in comparison to the itchy of the rash and the intense pain of the staph infection. I am so grateful to only be uncomfortable.

When I found out that the pain was being caused by an undiagnosed staph infection for over a month, I could not believe it was happening. I mean, when it rains, it truly pours on this guy. I kept thinking about the lyrics to Blur's Song 2: WOOHOO! When I feel heavy metal! WOOHOO! And I'm pins and I'm needles." I was so angry that it shifted me into temporary surrealism where I just wanted to scream out: "WOOHOO! I got a staph infection. WOOHOO! What the hell is next?" It is downright unnerving that the doctor from the clinical trials saw me every week and two dermatologists examined me, and I told all of them about the pain and the weird feeling of a bubble beneath my skin, but they did not swab for a culture and have the rash examined by a lab. It feels like malpractice to me, but I have to let it go.

Already the worst seems like a blur of hell on earth and I damn well survived!

Once I started taking the antibiotics just over a week ago, the Staph infection cleared up in about four days, and I began the healing process. Being off the Protease Inhibitor, I was free from the poison that damaged my body and tore apart my skin. Yes, I will have scars and the healing process is slow, but it is such grace to know that the nightmare is over. I cannot tell you how difficult it was to survive. Over time, I will venture into looking at how such an extreme and traumatic experience - six straight weeks of 24-7 itching and pain - has changed me. A curse and a blessing, it has to be looked at slowly, with patience, and the understanding that I have a long road of treatment and healing in front of me. 

Beyond the nightmare being over, perhaps the best news is that the treatment actually worked. My Viral Load, which is the amount of the Hepatitis C virus that is in my blood,  started at 20 million units, and doctors recommend treatment for most people at over 2 million units. Last week, when the clinical trials were unmasked and my current viral load revealed, the virus was undetectable in my blood. In conjunction with my liver functions returning to normal, it looks as though I will be healed. It is not a 100% certainty by any means, but it a bet that I would be happy and thrilled to make in Las Vegas.

Today, I was able to wear blue jeans for the first time in over a month without pain. For six weeks, I have worn pajama bottoms and sweat pants, but nothing else could be tolerated. Around my apartment, I have almost thirty bottles and jars and sprays and tubes of lotion, ointment, cream and anything Rite Aid offered to treat any kind of itch. Today, I finally removed several of these from my refrigerator. I no longer need the emergency cold because my skin is no longer screaming. Once again, I cannot tell you how grateful I am to be walking the actual road of my life with some semblance of normality. I do not know exactly where the path is going and naturally fears loom, but I choose to stay in gratitude. This is my road and even if it is difficult and challenging, I am so happy to be walking it again.

When you feel forsaken and fighting to survive, the road seems so far away.

Okay, that is all for now. It is late, and I have an important work meeting tomorrow. The hardcore drone of Blur has been removed and now that sweet song of the Beatles echoes in my soul: "I'm doing the best that I can (ooh) I admit it's getting better. A little better all time (It can't get no worse) Yes, I admit it's getting better, it's getting better all the time... Getting so much better all the time."

Although it is coming in the future like a cool wind in summer, I have to let you know that my gratitude is connected to being so thankful for the people that came through for me: my family, my neighbors and my close friends. I could not have made it without their love and support! I will never take such kindness for granted and I will never forget such blessings. Thank you again!