I am among the first to benefit from new life-saving drugs

Regular readers of this blog know that I have been dealing with liver cancer for some time, a by-product of a creepy little virus called Hepatitis C (HVC).  The cancer has not been very aggressive but has the potential to kill me.  That’s what cancer does, of course.  My one hope for survival is a new liver.  But there’s a catch.  There always is.

If I re-infect the new liver with the HVC virus, the virus can come back – with a vengeance.  Therefore, it’s preferable to get rid of the virus before one receives a transplant.  Up until now, this was done with interferon.  The treatment is lengthy and can be quite severe.  After his death in November 2013, musician Lou Reed’s wife, Laurie Anderson (herself an accomplished artist) wrote, “Lou was sick for the last couple of years. First from treatments of interferon, a vile but sometimes effective series of injections that treats hepatitis C and comes with lots of nasty side effects.”  You get the picture.

Approximately 12,000 people die every year from Hepatitis C-related liver disease.  Many people with Hepatitis C do not have symptoms and do not know they are infected.  The virus has reached near epidemic levels, particularly among baby boomers.

When I was first diagnosed with the virus, the doctors said my infection was so mild that interferon would not help.  By the time I developed cancer, they were reluctant to treat me with interferon because of concerns about the side effects.

On December 6, 2013, the FDA approved two new oral drugs to fight Hepatitis C: Sovaldi and Ribasphere (NOTE: Evidently, Ribasphere has been around for awhile.).  The key word here is oral.  None of the “vile” injections.  And, fewer side effects.

I began taking these drugs on January 17.  My viral load (the amount of HVC particles floating in the blood) was 800,000.  After taking the new drugs for only 21 days, my viral load went down to less than 43.  Not 43,000 or 4300. Less than 43!  That’s as far as they can measure it.  It might be zero.  The doctors can’t tell.  Needless to say, a positive development.

And no side effects whatsoever.

It’s a revolutionary development.  If they had these drugs 5 or 10 years ago, I would not be in the fix I am today.  The new drugs could possibly save millions of lives.  I am the first patient at USC to begin taking the drugs, and I feel as though I am participating in something historic.

Ira Jacobson, MD, Chief of the Division of Gastroenterology and Hepatology, Weill Cornell Medical College, New York City says the new drugs “will have a major impact on public health by significantly increasing the number of Americans who are cured of hepatitis C.” Others have called it “the beginning of a new era in hepatitis C treatment.”*  The only down side is that the drugs are very expensive, which speaks to the profit incentive for drug manufacturers, a subject too complicated to deal with here.

The real news is that this may mean the end of Hepatitis C.  As far as my role is concerned, of course, it’s very small and I am just among the first to try it. And while the part I am playing in this revolution has some bodhisattva-like aspects, it’s not as though I took on this suffering willingly, or at least, I am not conscious of having volunteered for them.  I am pleased, eager even, to be of benefit to others, but to be honest, I could have done without all this crap.  But we don’t get to choose our sufferings. Or do we?

It is said that bodhisattvas willingly take on suffering in order to liberate all beings, but it’s also said that suffering come from negative karma resulting from past volitional acts.  Frankly, hypothesizing about the source of suffering is the kind of speculation the Buddha viewed as unprofitable.  It will not relieve my pain to know where it came from.

This recent breakthrough has helped to relieve my mind, though.  What I regarded as a sort of lonely, annoying austerity that was happening to me while I was busy making other plans has now gotten a small dose of meaning and purpose.  Now, I feel intimately connected to the sufferings of the some 170 million people worldwide who have this virus and all those who will get it in the future.  I feel that I can truly regard their suffering as my own.

Just because the bodhisattva teachings say you should take the suffering of others as your own, doesn’t mean that is an easy thing to accept.  There are times when you need something like this to help you remember what the teachings are all about.

For some time now, my daily practice has been centered around meditating on the Healing Buddha and chanting the Healing Buddha mantra.  This practice begins with a determination to become a Healing Buddha, to become like sovereign medicines and drugs that benefit others.  I am just beginning to absorb the profound meaning of this.

If wisdom can be received by the body, imperishable by perishable, pure by impure, then it is received by me. Thus having abandoned self let him follow the good of all creatures, like an image of the Healing Buddha, not thinking of worldly things. Let him apply his own knowledge to the service of all creatures; having duly guarded his wealth, let him use it for all creatures. One must produce the suffering which expels much suffering in oneself or another, and also that which produces much happiness.”

Tathagata-guhya Sutra

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* http://www.gilead.com/news/press-releases/2013/12/us-food-and-drug-administration-approves-gileads-sovaldi-sofosbuvir-for-the-treatment-of-chronic-hepatitis-c

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Tune In to Hep C

One reader suggested to me privately that the title of my last post was over the top, and perhaps so, but as Jimmy Buffet wrote, “If we couldn’t laugh, we would all go insane,” and I reserve the right to laugh at my own suffering, even if I am alone in doing so. However, I do apologize if anyone thought it was in bad taste.

Coincidentally, I saw on CNN today that the Centers for Disease Control and Prevention is warning “baby boomers” to get tested for the Hepatitis C virus. In the latest issue of the Morbidity and Mortality Weekly Report (not the most uplifting title either), the CDC says,

Many of the 2.7–3.9 million persons living with HCV infection are unaware they are infected and do not receive care (e.g., education, counseling, and medical monitoring) and treatment. CDC estimates that although persons born during 1945–1965 comprise an estimated 27% of the population, they account for approximately three fourths of all HCV infections in the United States, 73% of HCV-associated mortality, and are at greatest risk for hepatocellular carcinoma [cancer] and other HCV-related liver disease.”

Hepatitis C is transmitted through infected blood, by sharing needles, piercings, blood transfusions, and operations. I’ve heard reports of it transmitted by snorting cocaine and other drugs. You can even get Hepatitis C from using the razor or toothbrush of an infected person.

The CDC also reports that only 55 percent of people diagnosed with Hep C have a history of risky behavior. Many infections were acquired through yet undetermined exposure.

Gregg Allman and Natalie Cole perform at the Tune In to Hep C benefit concert at the Beacon Theatre in New York on July 27, 2011. (Rob Bennett/AP Images)

The list of well-known people with Hep C is long, and includes the names of folks who might fit the profile of a “usual suspect,” such as Keith Richards, Gregg Allman, Natalie Cole, and David Crosby. However, there are others who don’t fit that profile, like Billy Graham, Naomi Judd, Frank Reynolds (ABC news anchor), and Dharmachari Aryadaka, the first Buddhist chaplain in Washington state prisons.

The Director of the CDC’s Division of Viral Hepatitis, Dr. John Ward, says, “We had an epidemic of hepatitis C transmission in the ’70s and ’80s, and we’re now seeing an epidemic of hepatitis C disease.”

The really insidious part of Hep C is that you may feel you are not at risk because you don’t have any symptoms, but most people don’t have symptoms of hepatitis C for decades after being infected, and all the while it’s stealthily destroying your liver.

Hepatitis C can be cured. There are new drugs that will clear the virus from a person’s body. They were developed a bit too late for me. My only cure is a transplant. The HVC test is a simple blood test, a liver function test to determine if your enzyme levels are elevated or not.

So, if you are a baby boomer, and I know some readers of The Endless Further are, get yourself tested. Frankly, I think everyone regardless of their age group should be tested. Why not? It’s a cliche, but it’s true: better to be safe than sorry.

Get Tuned In to Hep C.

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