Science Café About Hepatitis C Research

San Francisco has a thriving science and nerd community. A symptom of that is the wide array of science events that occur throughout the Bay Area every month. One of them is a monthly series titled “Science Café” in which a scientist or two is inveigled to come to a local café and talk for a few hours about their area of expertise. The most recent event was about Hepatitis C.

The Atlas Café was the scene and the scientists were Dr. Melanie Ott of the Gladstone Institute who researches the reproduction cycle of the Hep C virus and Dr. Todd Frederick a Hepatologist at the California Pacific Medical Center who treats Hep C patients. As a disclaimer I must mention that Dr. Frederick has examined, palpated and prescribed for me as part of the Polymerase Inhibitor study I was in.

Dr. Frederick gave an overview of the scope of the Hep C epidemic and the nature of current treatments available to combat it. He talked about the new protease inhibitors Telaprevir and Boceprevir that are awaiting FDA approval to be used in combination with interferon and ribavirin. He also gave a hint at possible future therapies using polymerase inhibitors with interferon and ribavirin and the possible combination of polymerase and protease inhibitors with ribavirin to create a treatment regimen that does not use interferon.

Dr. Ott gave us a basic yet thorough crash course in the reproductive cycle of the Hep C virus. She revealed its dependence on fat molecules in human cells and the promising area of research involved in using fat disabling compounds to interfere with the ability of the Hep C virus to reproduce itself. She also had a very cool animation that illustrated the reproductive cycle of the virus. She was quick to state that this was still basic, in the petri dish research and many years away from demonstrating efficacy in living organisms. It was fascinating stuff and the crowd of 30 was intent throughout both presentations.

A few of the questions asked in the Q & A were about the new compounds being developed and particularly about the issue of deciding whether to treat now or wait for new developments. Dr. Frederick clearly attempted to be balanced in his answers, but as a doctor involved in clinical trials of promising new compounds he is really exited about the possibilities of the new treatment combinations and he showed a bit of a bias towards waiting for new developments.

I respect Dr. Frederick’s viewpoint a great deal, but I think if you are seriously considering entering treatment, you need to consider a wide range of factors beyond the simple consideration of treatment outcome percentages. The condition of your general health, the condition of your liver, the amount of impact the disease is having on your quality of life, your family situation, your housing situation, your work situation, your insurance situation, your financial situation, the quality of support you can expect, all of these are important factors to consider in your decision. We still don’t know when the new drugs will be approved, how quickly they may be included in insurance company covered drug rosters, and how much they will cost (though we do know they will be expensive). So think it all through thoroughly and carefully before making a decision. While the future may be so bright we gotta wear shades, the shades might be very expensive and the future a bit further off than we would wish.

Undetectable

There is a certain sort of mild agony that accompanies waiting for medical test results. You want to know the results, but at the same time you don’t want to learn anything negative. It is a feeling of “please let me know the results as quickly as possible, but only if it is good news.” If the results are delayed, the tension slowly increases until you don’t care what the results are; you just want to hear something definite. I was in that holding pattern until yesterday when I finally got the first viral load numbers I have seen in a month. The tension turned to relief when I learned I was back to undetectable.

Finally, after 16 weeks of Standard of Care chemo, I am officially back to where I was after 6 weeks of the RO5024048 study. I have definitely been undetectable (under 43 IU/ml by this test) since October 6th. I may have been undetectable since September 23rd, but that was the test the lab screwed up. This means that, among other things, my liver is getting a break from the tissue damage that occurs while fighting the Hep C virus. It can begin to heal and regenerate once again.

It also means there is now a date certain (as the politicians would say) for the end of my Standard of Care chemotherapy. The hepatologists at California Pacific Medical Center (CPMC) continue interferon and ribavirin therapy for 36 weeks after the patient reaches undetectable level. That means that June 15th, 2011 will be the end of treatment. Now I can start crossing off weeks on my calendar (or maybe I can start carving marks into my desktop for each week completed) until it is over.

This is all based on the fact that I stay undetectable in each test from now until then, but I have even more motivation now to adhere as closely as possible to the “Best Practices” of the chemo regimen. (Sorry for the corporate terminology in the last sentence, but I was at our strategic planning staff meeting today where I was bombarded with bureaucratic mumblespeak up to and including “creating cross-functional workgroup plans”)

I have a deadline. There is real evidence that the interferon and ribavirin regimen is working. I will hold these facts in front of me like talismans whenever the night sweats get too wet, nothing seems worth eating and getting up the steps of the stadium to the cheap seats leaves me exhausted. It is working and there is an end in sight. It was worth the wait to hear those things.

Brain Fog x Fatigue = Say What?

The longer one takes interferon, the more significant the cognitive and memory deficits become. It’s a gradual process whose creeping nature means that you some definite “oh crap,” moments can pop up and catch you unawares. The farther into a task you go in any one day, the more like you are to be hit with a OC moment.

The organization I work for puts on a big used book sale every year. Picture a large airplane hanger with 550 banquet tables and 400,000 books open for sale for 5 days to a total of 12,000 customers. This requires some high level organization to pull off successfully, which is why the people who know us are annually astonished that we can do it.

It also means an early start the first day to make sure the logistics are all mapped out (literally) before the army of volunteers and the truckloads of tables and books start to arrive. I was there at 6:30 a.m. to mark out the floor of the hangar for table and book placement. This involves chalk, long tape measures and lots of walking; as in 20 trips up and down the 600 foot building and lots of side-to-side walking, and conferences, and rechecking, etc. By about 10:00 a.m, my dogs were barking and my brain was fogging. I noticed that I was having trouble reading my map and making calculations on my tape measure. I had to mark a 48-foot length of tables on the floor and I was standing at the 59 foot mark on my tape measure. I could not for the life of my figure out that 59 plus 48 equals 107 feet. I made enough wrong marks on the floor (which I did a bad job of scuffing out) that the volunteers had to track me down and make me show them where the damn tables were supposed to go. Suddenly, I just couldn’t think clearly. Taking a break helped a bit as did water, a snack and periodic rests, but once the brain fog started, the rest of the day was not a good one for our hero.

Twelve hours of sleep helped, but another long day the next day meant that I needed another ten hours of sleep today, a three hour nap in the afternoon and restricting myself to menial tasks around the house. Ten hours more tonight and I should be ready to exhaust myself again tomorrow.

Of course I will be most aware of my situation and be extra careful to rest adequately and not overextend myself in stressful situations, of course…

Vacation In The Sierras

Vacationing while on chemotherapy for Hep C has a number of factors to take into consideration even for a short jaunt to the seaside. Adding a few days and several thousand feet of altitude to your relaxing getaway and a whole new set of issues get added to the mix. It is not really that difficult to arrange, but you can count on being sideswiped by an unknown effect or two graciously provided by your medical situation.

I just spent 5 days at Camp Mather in the Sierras of California. Camp Mather is a piece of property owned by the City of San Francisco that is located between Yosemite and Hetch-Hetchy Valley. It was acquired in the early twentieth century through a combination of political hardball, backroom dealing, convenient crafting of legal provisions, and the judicious application of money. It has about 75 cabins, a small lake, a pool, trails, stands of ponderosa pine and incense cedar, tent camping sites, bathhouses and a mess hall. Each cabin has a couple of beds, two plastic chairs, lights and a picnic table. It’s not tent camping, but is rustic enough to be only a step up. It is also at 4500 feet above sea level.

The specifics of the Hep C planning required bringing all three injectable drugs along in a cooler as my dosing schedule occurred during the vacation. I brought along a fully loaded daily drug-dosing carrier that had all my daily meds broken down into morning and evening doses. I also brought the ancillary drugs along in case I couldn’t sleep, became anxious or the pain in my muscles flared up.

The drug dosing all went swimmingly, but the thin air really did me in. The simple act of unloading our stuff out of the car and into the cabin and setting it up, let me gasping and exhausted. Nothing a quick nap didn’t fix, but it certainly caught me off guard. A bit of clear thinking on my part could have predicted this, but hey…
A trip to Glacier Point in Yosemite (one of the most spectacular views of granite domes and glacial valleys that exists in the USA), which is at the 7200-foot level, was even more daunting. As I walked up the slope to the overlook I was constantly being passed by fit, trim, healthy people in their 60s, 70s, and even tough old birds in their 80s. You nod cheerfully, gasp out a hello and plod along.

The thin air also makes keeping properly hydrated something you have to pay particular attention to. You have to drink water constantly to maintain your normal hydration level and stave off nausea and queasiness. Combine this with my walnut sized bladder and enlarged prostate and it’s not a pretty picture. For surviving the nights I have two words: gallon jug.

The third factor is really a combination of the first two. The thin air and tendency towards dehydration leave you even more susceptible to fatigue than usual. Don’t plan on cramming too much activity into your day or you will spend the next day doing nothing but sleeping.

This is not to say I did not have a good time. It was a delightful long weekend. We got together with old friends, met interesting new people, saw places we had never seen before, revisited old favorites and simply lounged around. Even the food was good. I will stand in a cafeteria line any time for turkey dinner, tri-tip steak or spaghetti with meat sauce. The staff and volunteers who keep the place going are great folks.

So by all means head out the mountains whether you are on chemo or not. Just prepare to be surprised by how you body reacts to your brain’s idea of a good time.

It Is Chemotherapy; It Is Not “Treatment.”

The statistics speak for themselves. Over 4,000,000 people are credibly estimated to have Hepatitis C in the USA. The research money devoted to finding a cure for Hepatitis C is about $20 per infected individual. As a counter example, about 500,000 people have HIV/Aids in the USA. The research money devoted to finding a cure for Aids is $2700 per infected individual. You do the math, research money in the USA for Aids: $1,350,000,000; research money in the USA for Hepatitis C: $80,000,000; fourteen times the money for ¼ the total number of patients.

I do not begrudge the money granted to research on AIDS. I do not begrudge the money granted to research cancer or heart disease or tuberculosis or any other life-threatening disease. All these diseases merit serious study. I am interested in why Hep C is so underrepresented in the research funding arena. A few thoughts have been knocking around my head concerning that area.

The closest disease example I can think of to Hep C is HIV. Both groups of people infected by the particular disease are stigmatized to one extent or another. The AIDS community was painted from the very beginning as promiscuous, drug using homosexuals – hard to beat that for a stigma in American society. Hep C has been characterized as a disease of drug users and needle sharers, another big no-no in the USA. Yet after about 3 or 4 years the AIDS community was well organized, aggressive, public and effective in lobbying the drug companies and the FDA. It took a long time and a lot of hard work, but they got a lot of attention, a lot of money and some effective treatments leading to a high rate of long-term survivors. One of the reasons that they were effective was that they were a unified, identifiable community, stigmatized or no, that was able to leverage their movement for gay rights onto the movement for HIV research and treatment. The out of the closet gay community led the way in publicizing the disease and the need for research.

Individuals infected with Hep C are spread across wider segments of society. They are present in larger numbers across various sexual, gender and racial segments of society and a lot of them are still in the closet, as it were, regarding their disease. While there are advocacy groups, support groups, web sites, etc. There is not a tight, vocal, aggressive group lobbying loud and hard for additional funding. We need to have an out of the closet group of Hep C infected being in your face about the situation regarding research and treatment.

Another problem we have is that Hepatitis C patients undergo “treatment” or enter “standard of care” or are in a “study” or are utilizing “alternative therapies.” We need to call a spade a spade here. Hepatitis C is fought using chemotherapy, not “treatment.” Calling it what it truly is magnifies the significance of what people with Hep C are going through. Everyone knows someone who has undergone chemotherapy for breast cancer or colon cancer or leukemia or prostate cancer and they all understand how serious and invasive it is. By referring to Hep C treatment as treatment or Standard of Care or therapy diminishes the seriousness of the disease itself and the regimen used for attacking the virus. We need to stop minimizing it. What we go through is not treatment; it is hard-core chemotherapy with all the attendant problems and side effects.

To use myself as an example once again, I am 9 months into chemotherapy for Hepatitis C. I inject 3 drugs on a weekly basis: Pegasys, Procrit and Neupogen. I take four additional drugs on a daily basis: Ribavirin, Celexa, Levothyroxine and Folic Acid. I take three additional drugs on an as needed basis: Trazadone, Tramadol and Ativan. I am using 10 different drugs to attack the Hep C virus and to manage the side effects of the drugs that are attacking it. If that does not qualify as chemotherapy, what the hell does?

I have side effects ranging from nausea, fatigue, hair loss, muscle pain, joint pain, fevers, rashes, night sweats, low white blood counts, anemia and brain fog (because of the brain fog, I’m sure I have forgotten some of the side effects). If that array of side effects does not indicate I am undergoing chemotherapy, again, what the hell does?

It is time to call what we endure to fight the Hepatitis C virus what it is: Chemotherapy. It is invasive, disruptive and long lasting. In fact Hep C chemo generally lasts for 48 weeks. That is considerably longer than the chemo and radiation regimens for a number of cancers and other diseases. This is a serious process.

Our disease is serious and ultimately fatal, our method of attacking it is a long course of difficult chemotherapy. It does neither our disease, our treatment or ourselves as patients any favors to be less than open about the seriousness of our disease and the long, difficult and exhausting regimen of chemotherapy we undergo to fight it. Let’s do ourselves the justice of calling it what it is.

Thanks for listening to the rant. I am on vacation for the next week and will have more bile when I return...