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

– – – – – – – – – –

* 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


9 thoughts on “I am among the first to benefit from new life-saving drugs

  1. Great news! I hope things continue in such a positive way.

    I’ve been doing a daily Medicine Buddha practice for a number of years. I find the mantra quite powerful in a number of ways, especially as you say, in connecting with the suffering of others, and in a different way, in connecting with my own suffering and anxiety in a more emptiness suffused way. That is to say more than before…

    This is of course a necessary (but not sufficient) condition for taking on other’s suffering. If you’re overwhelmed with your own suffering, you can’t be much help to anyone else.

    Oddly, although I find the mantra and practice to be very beneficial, I also find the mantra sometimes difficult to enunciate. Perhaps I was not as respectful toward Medicine Buddha in a past life as I should have been.

    1. Thanks. I’m sure there is some disagreement about this, but most of the teachers I’ve encountered have never insisted that a mantra be enunciated perfectly. There is a lot of variation as you can easily see (or hear) if you go on YouTube and listen to different videos of mantras. At first, I found the Medicine Buddha mantra a bit long, as I was used to shorter mantras, but I got used to it.

      1. Not looking for perfection here…Sometimes my mouth just seizes up on the syllables. Then I just have let my mouth reset – sometimes several times – before I can continue. I have a level of aphasia so it’s a common general occurrence – it just doesn’t happen with other mantras.

        Although maybe I should look at it as a practice of the Perfection of Enunciation, recognizing the emptiness of myself, the emptiness of the mantra, and the emptiness of the Medicine Buddha.

  2. Thank you for your post. I’ve been taking the Sovaldi and Ribasphere since February 10th. I’m also on the USC live transplant waiting list. Doctors told me the same thing years ago, that getting a liver transplant could cause my Hep C to come back with vengeance and not only waste a lot of work and money, but wipe me out completely. After less than 2 months on the Sovaldi my blood test showed NO DETECTION of Hep C in the blood. Still have to complete the 28 week program, but wanted to say thanks for your post

    1. Hi Steve,

      Thank you for your comment! I received my new liver almost 2 months ago (see here and here) and am doing well. Hope to see you over in the post-transplant clinic soon!

  3. One of the things that I wondered about is the anti-rejection medications. I know they are critical, but I was curious how they make you feel?

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