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!

A Shout Out to Gregg Allman

The television was tuned to one of those deep cable cultural stations which was running a German film from the thirties when they went to commercial. The ad started out with a voice over from Gregg Allman mentioning the Allman Brothers Museum in Macon, Georgia. Then it morphed in a completely different direction. In a full-face statement, he announced that in 1999 he had been diagnosed with Hepatitis C. He said that on his doctor’s advice he eventually acknowledged the reality of the disease and sought help. He said that he was glad he did and that doing so allowed him to not just have memories of the past, but to continue to make memories today. He urged people to go to tuneintohepc.com for more information and to get tested.

Even though a number of prominent people in various walks of live have contracted HEP C, (list here) there have not been a correspondingly large number who have spoken out about their disease. Natalie Cole, a fellow musician who is featured on the tuneintohepc.com website talked about the disease, how she got it and what the treatment was like in 2008. A link to one of the articles is here. Pamela Anderson has talked about her disease as well. Allman talked to Sanjay Gupta on CNN about the disease, his cancer and his liver transplant earlier this summer (link here). He also made the TV public service commercial noted above. I’m sure there are others, but just the fact that it is hard to identify them means that HEP C sufferers have not had the same celebrity support that folks with many other diseases have had.

Folks who have HEP C, whether celebrity or no, have no obligation to reveal their health information to anyone. To assume that they bear greater responsibility to advocate for the disease is wrong. All of us may choose how we deal with the fact that we have it. Still, it would do a great deal for raising the awareness of HEP C if all of us who have it, especially celebrities, speak out about the disease, advocate for more research, and for those of us who have undergone treatment, inform people about what to expect if they decide to be treated.

For now, though, I would like to thank Mr. Allman for making his public service announcement, for going on CNN and for being out front and straightforward about the disease. Let’s hope it leads a lot more people to be tested and to be able to consider treatment while their liver can still be saved.

World Hepatitis Day – Who Knew?

Thursday July 28, seven days ago, was World Viral Hepatitis Day. The day was dedicated to raising awareness of all types of viral hepatitis and the populations they affect throughout the world. Did you know it was happening? If not for the efforts of the San Francisco Hepatitis Task Force, no one in my city would have known, myself included. Were it not for an email sent out by the task force recruiting volunteers for some boots on the ground outreach at transit stations in the city, it certainly would have passed me by. As it was about 50 hardy souls wore t-shirts, held up banners and handed out information cards during the morning and evening commute hours. Over 2500 cards were passed out during the day and thousands of other folks saw the signs and heard our pleas that they find out about HEP C and get tested. We tried out numerous catchphrases such as: “Do your liver a favor, get tested,” “Seven out of ten people don’t know they have it,” “We never thought we had it,” “If you have a tattoo, you might be infected.” “I never knew I had it,” etc. I irresponsibly came up with a few others such as “If you have a tattoo you are already dying,” “If I have it, so could you,” “Don’t die not knowing what killed you,” “What you don’t know can kill you,” and others. Anything to break through the iPod, cell phone and traffic noise clutter. It was a worthwhile though exhausting effort but it left me wondering why we don’t have better outreach about Hep C.

If you remember the beginning of the AIDS epidemic, the gay community did a fantastic job of organizing to demand research about the disease, research about a cure, better treatment by medical professionals, and fairer treatment for infected individuals. They had the same problem as the HEP C community in that AIDS was seen as a disease that affected mainly people who the mainstream of society saw as deviants. With AIDS the victims were defined as promiscuous, drug using men who engaged in “perverted” behavior. With HEP C victims are seen as drug using losers. (There is a rumor in San Francisco that the local Hepatitis B community decided not to ally with the HEP C community in a previous outreach program because they did not want their cause associated with drug use.) The AIDS community worked hard and eventually triumphed over that stigma (though suburban white folks starting to get the disease via contaminated blood certainly moved America toward the realization that the disease was not the wrath of god, but rather and dangerous virus). They now get vastly more attention than the HEP C community even though there are 4 times as many HEP C sufferers as people infected with HIV/AIDS. Our community of infected people needs to start becoming a lot more aggressive in publicizing HEP C and the fact that is one of a family of viruses that can infect people who have never used drugs or indeed engaged in any behaviors mainstream Americans look down upon.

We can certainly learn some lessons from the AIDS community and lose our apathy, shyness or indifference. It is the only way we are going to get the treatments for HEP C widely distributed at an affordable price so we can save the lives of people who don’t need to die from HEP C.

Deciding About Treatment – Lot’s to Think About

I have had several people ask me why I decided to enter treatment. Specifically, they wanted to know why now?
My situation was this: 56 years old, high viral load at 13,000,000 per ml of blood, stage 1 liver disease, my Hep C had been symptomatic for 18-24 months.
Mine was not a desperate situation, no advanced liver disease, symptoms were present and annoying but not yet debilitating, and I was not in poor health generally. It came down to a long and serious consideration of a number of variables from health to work to family considerations. Here are some of the considerations:

What is the stage of your liver disease? Clearly, if you have advanced liver disease, treatment becomes something much more important and possibly mandatory than if your liver is not so deteriorated. If it early stage, you have the gift of time to consider all your options and potentially await additional treatment developments. If it is late stage, you have to decide much more quickly as the consequences of putting off treatment become exponentially more serious.

What is the state of your general health? Is the Hep C directly attacking your health through its symptoms and side effects and/or is the state of your liver creating additional health issues that are threatening or debilitating? To a certain extent the poorer your health, the more difficult the side effects of the treatment may be, but the more important it may well be to begin treatment in order to battle the effects of the disease. Again, the better your general health, the less immediate the decision becomes.

How are the general Hep C symptoms affecting you? Are you able to use available therapies to mitigate the effects of the symptoms of Hep C? Fatigue, Depression and Brain Fog are 3 of the more widely reported symptoms of Hep C. There are also joint pain, Ascites or fluid build-up in the abdomen, weight loss and the really serious symptoms of late-stage liver disease. There are a number of therapies for the general symptoms and if you are using them successfully and your life seems to be stable and at an acceptable level of health, this affects your decision. If the symptoms are beginning to overwhelm you, or become more than is tolerable for you, this also will have a large influence on your choice.

What is your health insurance situation? Hugely important of course. In countries with government financed health care systems this is a bit less of a concern, though the time before you can get authorization and enter treatment has to be considered carefully. If you have private health insurance, does it cover Hep C at all and if so, which of the therapies does it cover and for how long? If you eventually have to change insurers, will your Hep C be considered a per-existing condition and therefore the treatment would not be covered by insurance? Does this mean you should go for it while it is still covered? These are really tough questions and can definitely make the difference in treatment decisions. Something as basic as timing your treatment to begin the year right after your insurance renews can make all the difference in being covered through the entire length of treatment.

What is your employment or general work situation? This is a multifaceted question. If you are self-employed or run your own business, can you keep it going while not being able to put in the 40-60 hours per week that self-employment and business ownership generally require. Do you have people who can pick up the slack and help you during the 48 or more weeks that you will be, most likely, not at your best? Can your company survive if you have to take some time off without being able to work much at all?

If you are employed, what is your employer’s attitude going to be? Can you let anyone know you have Hep C? Is it clear to you that the attitudes at work would not be in your favor if they knew you had the disease? While it is illegal to discriminate against someone with a chronic disease like Hep C, remember that the burden of proof is on you. Should it come down to contesting a lay-off or firing, you have to bring the case and prove the action was because of Hep C.

If you believe that there is support from your employer what form will it take? Can you work a shortened workday or 4 day week? Can you take time off during the day to rest if necessary? Will they be supportive of the time you need to visit doctors and have tests? Do you have a sick leave policy or accumulated sick time that can be used to make up the time that you cannot be at the job? All these questions are vitally important and must be considered carefully before you make choices about treatment.


Which Genotype of the Virus am I and what are the chances for success? The common genotypes in North America are genotypes 1, 2 and 3. Genotype 1 is the most common and conversely, the most difficult to treat successfully. Genotypes 2 &3 are much less common in North America (and much more common in the rest of the world) and have a much higher success rate with treatment. The Standard of Care (SOC) is pegylated interferon (Pegasys, Peg-Intron) and Ribavirin (Copagus) taken for 48 weeks. The percentage of patients with a Sustained Virologic Response (SVR) is about 46% for genotype 1 and 80+% for genotypes 2 &3. So you have a bit less than a 50-50 shot to be cleared of the virus after treatment if you have the most common genotype present in the USA. The question boils down to: do you want to endure the effects of treatment for a year (and then some recovery time as well) for a 50-50 shot at a cure?

This is where the question of experimental drug studies comes into consideration. The study I am in uses a polymerase inhibitor (RO5024048) in addition to the SOC. The early studies indicated that it could result in a SVR rate of upwards of 70% in genotype 1 patients. There are very advanced compounds in the protease inhibitor family (Telaprevir is one example) that have shown in phase 3 studies that they have SVR rates of about 64%. When you see these sorts of results, the question changes quite a bit. Can I deal with treatment for a year if it means I have a 2-1 shot at clearing the virus or even a 3-1 shot?

What is your family situation? How stable is your relationship? How do you think your partner and/or children will react to the situation? Will they support you through the difficult parts of treatment? Does your family have the necessary financial means to deal with the potential loss of income and increased costs brought on by undergoing treatment? These are all highly personal questions whose answers are different for every individual considering treatment. They can also be questions whose answers change over time. Sometimes folks can start out very supportive and be worn down over time. Other times people step up to offer support and assistance in ways that can be astonishing in their generosity.

These are just some of the questions that arise when considering treatment. More to come…