Liver Walks and Liver Disease PR

I've always wondered why folks with liver disease didn't organize events focused on Hepatitis, Liver Cancer and the other diseases that can devastate the liver. Was it the broad diversity of the afflicted group? Embarrassment about admitting to the disease? Shame about the possible, or definite, way the disease was acquired? Indifference due to the long time-span the disease takes to get really serious? A combination of all these? Who knows?

I arrived in San Francisco during the mid-1980s. It was ground zero for the raging AIDS epidemic. The AIDS afflicted community, mostly gay, began to mobilize early on to militate for research, awareness campaigns within the community, demand for drug research, medications and for companies to supply medications affordably. Perhaps because so many shared a common sexual orientation and a definite us vs. them mindset, the community was more predisposed to organize. Whatever the reasons, the AIDS community jumped in with both feet and as a result, AIDS awareness, research, drug availability and prevention education garner a great deal of attention throughout the country.

It looks like the liver disease community is starting to mobilize as well. The Fair Pricing Coalition  has been active in protesting the costs of treatment drugs, celebrities with liver disease have begun to come forward, and finally, The Liver Foundation is sponsoring a series of  Liver Life Walks in cities across the USA.

The Walk for a cause model is one of the oldest and most effective tools for raising awareness of a cause. It spreads far wider than the walkers themselves as family members, friends and sponsors of the walkers all become more aware and more likely to be talking about the theme of the Walk. It is also great therapy for the participants as they can band together to say that the status quo is no longer acceptable.

I urge anyone who has Hep C, knows someone who has it or, sadly, has lost someone who had Hep C, to join a walk, support a walker, or just talk about Hep C if the subject comes up. The more people know about it, the more likely they are to get tested, seek treatment and live better lives.

As my lovely wife put mentioned in the previous post, we formed team Heprat for the SF walk and will be walking the, extremely civilized 1.5 mile, course this Saturday, Sept. 15th. The week after there is one in Mpls/St. Paul, MN. and so on and so on. As the street hawker might say, Check It Out!

Support Team HepRat For the September 15, 2012 Liver Life Walk in San Francisco

I've joined the Liver Life Walk in San Francisco as part of Team HepRat, in honor of my husband, the author of this HepRat blog, who has recently struggled with liver issues and the side effects of current treatments. Visit this link to read more or support our cause: GO TEAM HEPRAT!

Leaving the Support Group

As discussed previously in this post, support groups are an excellent program for HEP C sufferers. They provide a safe and secure environment to talk about the disease. They are a useful pool of knowledge about the side effects, the strategies for coping with them and, of course they provide a wealth of information about treatment. The sheer relief of finding people who have had similar trials, successes, and failures is worth attending in itself. All that being said, I stopped going to my support group in January of 2011.

Some of the reasons are the same as the ones described in this post, some are more personal. The overall tone of the group began to seem as though it was a group therapy session for folks with social interaction deficits rather than a support group dedicated to dealing with HEP C. The amount of time spent discussing the relationships and personal difficulties of the people in the group began to outweigh the time spent discussing the effects of HEP C on their lives and the sharing of knowledge about facing and treating the disease. While this kind of discussion was clearly important to those who initiated it, it seemed to me to be a case of too much information and too much bitching. It never bothers me when someone bitches about the difficulties the disease or its treatment creates in their lives, it does not seem relevant to here repeated complaints about their fathers, mothers, brothers and others in their lives. This may very well be an example of my being selfish and not caring enough about my fellow HEP C sufferers. I fully admit this. But I would rather spend the time talking about the disease, the treatments, the knowledge others have about these things and the general state of the HEP C community, research and public awareness of the disease. All of these concerns can be personal and can intersect with the personal lives of the folks with the disease; I just don’t want to hear about their landlord having a problem with their cat.

It came to a head when I realized that I had to take an Ativan before going to the meetings in order to get through them without becoming anxious and upset. It seemed that the requirement to be tranquilized to go the meeting was probably a sign that they had outlasted their usefulness. I still remain in contact with a few of the people in the group, but the dynamics of the actual bi-weekly meetings just became more than I could stand.

I still believe that support groups are a great resource. If you have one in your area you should definitely check it out. The chances are that it will be a great source of emotional support and information. Everyone with HEP C deserves all the support they can get and a support group is a great place to seek it. Perhaps those of us who are surly loners just can’t handle all that good feeling. Ah well…

The Magic Bullet Theory

Waiting for the “Next Best Thing”


Last Tuesday was the annual Holiday Pot Luck for the twice-monthly Hepatitis C support group that meets in the California Pacific Medical Center Pathology Conference room. There were about two dozen people there and, in the tradition of potluck dinners everywhere, enough food for twice that number. Best of all, there were plenty of desserts.

Of the two dozen people or so people attending, about half were either currently in treatment or had successfully completed treatment; another quarter had undergone treatment and either failed to respond or the virus had reappeared after the completion of treatment and the last quarter had yet to make a decision about treatment. About half the folks who had successfully completed treatment and never had a recurrence of the virus were people with Hepatitis C genotype 2. This genotype has about an 80% chance of clearance, and excellent prospects of a sustained viral response, with 24 weeks of standard interferon and ribavirin treatment.

After people had settled down with their plates of food and glasses of non-alcoholic libations (ginger potions of all sorts were quite popular), everyone reported on their general state of health, how they felt and any significant issues they had that might be caused or intensified by the disease or their treatment status. Several common themes emerged as people told their stories.

The people who had successfully completed treatment reported that by and large they felt they were back to normal functioning (one individual reported that she felt that after 2 years she still did not feel she was back to her previous cognitive function level). They felt their energy had returned, they no longer had shortness of breath, their strength was back and generally they were physically in good condition. Most felt that their mental faculties and their memory had returned to pre-treatment levels as well. To a person, they reported that it took considerably longer to return to full function than the time that is considered standard by the medical establishment. The usually quoted time to recover from the effects of interferon, ribavirin and the other associated drugs used in treatment is 3 to 6 months. Everyone reported that the time it took them to recover from treatment was in the range of 6 months to 1 year with a few reporting longer times than that.

The people currently in treatment (and for that matter, the folks who had completed treatment) reported two side effects as most debilitating: fatigue and brain fog. The fatigue ranged from merely difficult to extreme with no one reporting only mild fatigue. That said, person after person stated that the most irritating and frustrating side effect was the cognitive deficit associated with interferon brain fog. It was not just the increased memory difficulties, it was the inability to concentrate, the ease of distraction, the loss of train of thought that drove everyone crazy. Most folks also reported nausea of varying degrees, insomnia, sweats etc.; but those paled in comparison to the frustration of brain fog and the annoyance of being tired all the time.

The rest of the people at the meeting, the non-responders to treatment and the people yet to attempt treatment, all had the same outlook: they were waiting for the new and better drugs to become available. They had very different reasons for this viewpoint, but it was surprising to see the uniformity of their point of view.

The non-responders and fail-to-sustainers had all failed at the standard interferon and ribavirin treatment. They and their doctors had come to the conclusion that the two drug standard treatment was not going to successfully defeat the virus in their bodies. They need the additional punch of one of the new drugs in order to have a real chance at success. You can’t argue with that conclusion, when what is available has failed, you have to await further developments to move forward.

The people who had not done any treatment had different reasons for waiting for the next new and better drugs. Many were afraid of the side effects but most were looking for a therapy with a better chance of success that the standard therapy. The standard treatment has about an 80% chance of clearing genotype 2 Hepatitis C. It has a 40-45% chance to clear genotype 1 Hepatitis C. The drug most likely to be approved next is Telaprevir, a protease inhibitor (Boceprevir, a similar protease inhibitor is supposedly not far behind). Telaprevir has demonstrated in research testing that, in combination with interferon and ribavirin, it has a genotype 1 clearance rate of about 60-65% (Boceprevir has similar test results). On the surface the reasons for waiting for the new drugs are clear-cut, 60% is a much better chance than 40%. There are a lot of other factors to consider before pinning one’s hopes on the next best thing, however.

First is the discovery of variations in the IL28B gene and how these variations affect response to treatment. If you have the CC variant of the gene, the evidence indicates that your chances of responding well to standard treatment rise to the 60% level, or about the same as the telaprevir response rates. The test to determine which variant you have is available, not extremely expensive and clearly gives information you can use to make a decision about treatment. For a more info the link is here.

Secondly, the new drugs are not assured of either approval or timeliness. The latest Telaprevir application was submitted to the FDA in November, 2010 which means a decision is 6 to 10 months away. Boceprevir has not even reached the “it’s coming in the next x months stage of rumor yet.” There is also the, admittedly small, chance that Telaprevir is never approved. I have many friends who are in the gene-splicing and drug development fields who report a number of instances when companies were extremely confident of FDA approval only to be turned down during the final application. The FDA might come back with concerns that require further testing or additional data submissions, all of which could move the timeline much further out. The promising new polymerase inhibitors (RG7128 and RO5024048 for example) are only just beginning phase II trials which means they are at least 3-5 years away from any sort of approval and only if they succeed in further trials. There are other drugs even further away, etc.

Thirdly, these new drugs are expensive. They project to be about twice as expensive as the current interferon and ribavirin. The plan is that you only need 24 weeks of treatment, but it will be a very expensive 24 weeks. Therefore the question of once the drugs are approved how long it will take for them to be added to insurance company drug formularies so they will be covered by your insurance becomes extremely important. As we all know, insurance companies can be quite recalcitrant about approving new therapies.

Finally, there are all the considerations about your personal situation. What stage is your liver disease? What is your viral load? What is your general health? How old are you? These questions only start to list your issues. What is your financial situation? What is your insurance coverage? What is your work situation? Do you have solid family support? If you have to go on disability, how would that affect your job future? Can you even tell your employer, family, friends and coworkers that you have the disease? All of these and more are considerations that may be more important than the rates of viral response of the various drugs.

Remember two things as think about all the ramifications of when and how to deal with your Hepatitis C: first, there is always a newer, shinier, more promising therapy in the future and second, the best is the enemy of the good.

Support Group Redux

In a previous post, I described going to my first support group meeting. It was a good experience and my intermittent appearances at other meetings of the group have been useful both for the emotional support of others who have undergone the same experience and for the information they can pass on about their coping mechanisms for getting through treatment. There are times when the group can be a bit trying and the other day was one of those experiences.

Before mentioning the circumstances that made it an infinitely long 90 minutes, there was one piece of anecdotal evidence we discovered as a group that we have not seen described in the literature as an effect of becoming symptomatic Hepatitis C sufferers. Several of the individuals at the meeting had been diagnosed with Hep C relatively recently. As they related the stories of how they had ended up being tested for Hep C and the symptoms that led them to their doctors, one of the repeated statements was that they had experienced shortness of breath. After the third individual mentioned this, the moderator of the group mentioned that she had that same symptom at the time she was diagnosed and asked the group in general whether that was the case for them as well. Of the eleven people there, eight, including myself, related that previous to and continuing after the diagnosis, they had experienced shortness of breath and some difficulty feeling that they could draw a complete lungful of air. As I said, anecdotal evidence to be sure, but we all wonder whether that is a common experience of Hep C sufferers. You learn something new at every group.

You also occasionally have to suffer through a meeting with a plethora of difficult personalities and this was one of them. The first individual to speak related the experience of undergoing treatment twice and failing both times to clear the virus. It was entirely the fault of incompetent doctors, unresponsive nurses, delayed treatments, bad communication, shoddy lab work, you name it and this individual named it as a reason treatment had failed. After listening to the ranting for about 10 minutes, and knowing the doctors named were among the leaders in the field, we realized that we were experiencing directly some of the reasons this person had not experienced a successful outcome.

Three other individuals at the meeting clearly do not get out much and used the meeting to ramble on about their personal lives before, during and after treatment without offering much information about their experience with the disease. Having worked in retail at various times, I have experienced this before. Individuals often came into the store and, perceiving the clerk as a captive audience, proceed to spend no little time describing their personal problems at length until you find a way to cut them off. In the case of the support group, these individuals are usually not hard to deal with, but the number of folks doing it at this particular meeting just ended up being a bit more than I was prepared for.

Finally we had the new age proselytizer. Every person who related symptoms of the disease or issues of treatment was given an herbal nostrum to try, a meditation regimen to use or a dietary modification to make to help with the preservation of the liver or the mitigation of side effects. I have an open mind about strategies for treating disease. I have investigated a number of alternative therapies for a wide range of conditions and found some of them to be efficacious, but when someone insists that I must drink filtered water in order to lighten the toxic load on my liver but does not seem to understand that vastly more toxins are inhaled by a typical individual every day in any major city than they will ever get through treated tap water, it certainly raises my level of tension. Likewise the insistence on a vegetarian diet, organic foods and particular methods of preparation sounds great until you run into the situation I described as The Everything Tastes Like Crap Diet. Then I think it is far more important to just find things you feel like eating and eat them, than worry overmuch about the specific balancing of your diet.

I could go on, but then I would turn in to individual number one at our meeting. I will continue to go to the support group as it is indeed helpful and there is always new information to discover. Just remember that the occasional meeting can find you clock watching and hoping for the end as opposed to suddenly being surprised by the custodians and realizing it’s time to give them a chance to do their job and wait to continue the discussion till the next time.

Support Group: The Kindness of Strangers

I went to a Hep C support Group for the first time yesterday. I had wanted to go for a while, but my first attempt was aborted when I was so tired I just went home to bed right after work. The next time I tried was about 10 days ago. I discovered when I arrived that the group was on hiatus. Third time’s the charm however as I forced myself to go even though I was tired it was an experience I would recommend for anyone with the disease.

The group has been going on for years and had a wide range of people and stories. There was an individual who had been through the full 48 week treatment twice and relapsed both times. Another person was several months past the end of a 72 WEEK course of Interferon and Ribavirin. Another had been through treatment in the late ‘90s when you had to inject the Interferon 3 times a week and had been clear of virus for over 9 years. Others had not decided to do treatment yet (or even ever) and some were in the middle of it like myself. Even though the group was not large, it encompassed most of the range of experiences of people with Hep C.

It was a useful experience to hear someone in the room say, “Oh yeah, I had that,” or “Usually that one levels off after a while,” when you mentioned one of the effects of either disease or medication. It seemed that anything that anyone mentioned about how they were doing or what particular challenges they were facing now was generally met with either sympathetic understanding or a tip on how you might be able to deal with it.

I have to say that I was impressed with the matter-of-fact attitude (and humor) of the people in the group. I’m only 8 week in to treatment and I cannot imagine going through this for 72 weeks or 48 weeks TWICE. Yet everyone could joke (at some level) about what they had gone through in the past or were going through now.

It is also good to know that others feel the same frustrations you do. The brain fog was a major complaint of everyone in the room, followed closely by fatigue and general loss of energy. It was also heartening to hear from the folks who had completed treatment and cleared the virus that things return to normal. It may take a long time for you to find your brain and get your energy back, but mostly, you can come back and be yourself. It is a great comfort to know that there is light at the end of the tunnel, even if it is a damn long tunnel.

I don’t feel badly that I did not find a group earlier, but I am glad I found one and I intend to go back on a regular basis. I don’t know what it would have done for me to go while I was diagnosed but not in treatment. I think if I had decided to wait a while for western medical treatment and instead decided to try to manage the disease through other means, going to a group would have been a major benefit. It seems everyone has a strategy for particular symptoms and the group knowledge represented is quite impressive.

I recommend finding a support group to anyone with the disease. Whether you feel the need for emotional support or would like the ability to tap in to a great deal of experience and knowledge, you will definitely feel the kindness of strangers.

Artificial Emotions

One of the stranger factors of being under the influence of drugs either experimental or otherwise, is the experience of emotional states that have no relation to your surrounding life circumstances.

Today, I was at the tail end of the working day, alone in the warehouse, finishing up some research on some new and interesting books that had just arrived. It is always enjoyable to be rooting through boxes and finding interesting and potentially valuable stuff hidden away amidst the general run-of-the-mill donations.

As an aside, I work for a non-profit Friends of the Library organization. The part of the organization I work in collects donations of used books and then sells them to raise money for the library. I have experience in the used and rare book field and am specifically tasked with finding the more valuable items and then, generally, selling them through online sales venues like Amazon.com, eBay, and Abebooks.com.

I went upstairs to my desk to finish up some last minute email correspondence and order processing when wham, I was suddenly sad, depressed and tired. Not the tired at the end of the day sort of thing, but the can’t-keep-your-eyes-open kind of tired. My wife called to let me know she was leaving her office and heading out to pick me up and I felt like crying just listening to her. Combining the sadness and fatigue got me right into a great little minor depression. Then when I got home I collapsed in front of the TV for a bit and felt like weeping while watching a bit of the movie "Dave." Now as anyone who has seen this movie knows it is not exactly a three hanky movie. None of this had anything to do with what was going on in my actual life. It was entirely caused by the drugs.

Luckily I knew what was going on. I could actually step back a bit, mentally, and realize that even though I felt bad, it had nothing to do with reality. Maintaining that perspective will be a challenge, but at least I am starting off knowing that it can happen.

This is one of those times that having experience with mind-altering drugs, particularly hallucinogens, is clearly going to be a benefit. I know intimately that small amounts of drugs can have overwhelming effects on your mental and emotional condition. LSD, for instance has powerful effects at a dosage of 300 micrograms, which is an astonishingly small amount of substance. It’s not just that you see your grandmother crawling up you leg with a knife in her teeth, as Hunter Thompson put it, but that suddenly you can be ecstatically happy and within moments be consumed with abject horror. Anyone who has taken LSD or any mind-altering drug can relate to these effects.

The key for folks who may not have any experiences like this is to try to maintain a bit of distance from your own feelings. This can be very difficult to do as you absolutely FEEL that you are sad, depressed and unhappy and it is tricky to separate this very real feeling you are experiencing from the actual circumstances of your life at that moment. This can be particularly challenging to do over time especially as the drugs bring on anemia, exhaustion, muscle weakness or other side effects that genuinely start to make you feel crappy. This is where keeping a journal; even one with very brief entries can help. It doesn’t have to be extensive, just a quick note about the actual circumstances perhaps contrasted with what feelings you are experiencing.

The other big helper is a support group. Keeping in touch with a group of folks who are either going through the same thing as you are right now, or have done so before can be of enormous support. Checking the web for support groups in your area is a first step. If you are not convenient to a physical group there are lots of blogs and bulletin boards out there as well with people who are more than willing to chat with you. The links on the side go to a lot of those resources.

The long-term struggle will be to remember that it is the drugs that are causing many of the feelings. That will be considerably difficult during this trial as it goes on for a minimum of 24 weeks. Even really powerful acid is usually gone in 24 hours