MICHELE BACHMANN, TIM PAWLENTY, ET AL, WANT ME TO DIE!

The health care reform bill passed through the House last night. Most of us were thrilled. This legislation has been a long, long time coming. The Republicans hate that it passed. Now Michele Bachmann, Tim Pawlenty and other Minnesota Republicans want to make this legislation illegal, or unconstitutional, or some such thing, in Minnesota. In Minnesota, which has always been a state that cared about the poor, the downtrodden, the helpless, the sick, the infirm, the disabled and the homeless.

Let's take a look at my own case for a moment. As most readers know who have been following my blogs, I have hepatitis C. I've had it since 1969 and now my liver is cirrhotic. At this point it's still well compensated, but that won't last forever. Within a few years it could become decompensated. Then I would be on the way to a liver transplant. Before the transplant, while the liver is growing more and more useless, I would be unable to work. This state of disability could last for six months, a year...who knows?

One must be disabled and unable to work for two years before Medicare kicks in. That would be two years without insurance. I had resigned myself to not being able to afford a transplant and to not having insurance at that point. No biggie; I'm not afraid to die. To quote Charlotte Bronte, "No coward soul is mine."

Still, one wishes to live if at all possible. Imagine how wonderful I found last night's news regarding health care reform. I would be able to still have insurance. I would be able to have a liver transplant when it became necessary.

Now Michele Bachmann, Tim Pawlenty and their cohorts want to try to take that away from me? And not only me, but countless others with such diseases as AIDS, cancer, liver disease and a host of other potentially fatal maladies.

Did you know that without insurance, the out-of-pocket cost of treatment medications (interferon and ribavirin) for hepatitis C is thousands of dollars per month? Do the Teabaggers really want all these people to die because they don't have health insurance? Many Teabaggers claim to be Christians. What a joke. If they would but look in their own Bibles, they would read about this guy named Jesus who said, "Whatsoever you do unto the least of these my brethern, ye do it unto me." You can see where that line of reasoning will go next. Shame on the Teabaggers. Shame on Michele Bachmann. Shame on Tim Pawlenty. I think we have some dastardly hypocrites in Minnesota, folks. And it's not us Democrats. It's those darn Teabaggers.

I have to agree with Mark Dayton on this one. (No, we don't see eye to eye on everything, but we do on this.) Pawlenty's administration and policy is evil. He can vocalize what that means better than I can. Watch the AFSME on the Hill video of Dayton's speech, then applaud him for his passion and courage in speaking up in such an exhilerating manner.

We've come this far with Health Care Reform. Don't let Minnesota Republicans take it away. People's lives depend on it.

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LIVING WITH HEPATITIS C

Me in the woods by Lake Superior, c. 1987

Many people have asked me what it's like to live with hepatitis C. For the first several decades, it's fine. In fact, most people don't even know they have it. I got it in 1969 but didn't find out until around 1992. That's when the virus was isolated. Before that, I was told I had non-A, non-B hepatitis. I had hepatitis B in 1969. It cleared by itself. My gastroenterologist, Dr. Coleman Smith from Minnesota Gastroenterology, said that C can ride in on the B.

Symptoms usually come when the liver starts getting bad. These include fatigue, muscle and joint pain, sometimes nausea, pain in the upper right quadrant of the abdominal area, and often depression from living with a chronic illness and chronic pain.

Once cirrhosis sets in to the point of liver decompensation, there's a host of other effects. Hepatitis C is a systemic disease. Upon autopsy, the virus has been found in all parts of the body, including the brain. When cirrhosis reaches a certain stage, you get such things as encephalopathy, esophageal varices, portal vein compression, ascites, etc. Soon it's time to consider a liver transplant. If you're lucky enough to get a new liver before death occurs. There just aren't enough livers to go around. Even now when they can do live donor transplants. That's when they remove part of a living donor's liver and transplant it into the patient. Both livers grow back to full size within a couple of weeks. Amazing!

Here's some comments made by people in my online support group as well as other people living with hepatitis C. Some of these people are on the grueling treatment; others tried the treatment and were nonresponders.

Okay, so I took the shot of interferon and made it all night with no problems. I'm starting the 2 ribavirin this am & 2 in the evening. I just wanted to post as I'm getting started, & getting ready to kick some Dragon's butt!!!! Thanks for the support, everyone!!  --Amy

The side effects of pegaylated interferon and ribavirin cannot be overstated. I was on antidepressants and sleeping meds almost right away and still I was a danger to myself and others. Imagine being a junkie running a fever and in constant withdrawal. That was my experience. I am qualified to equate the two.  --Dave

I could not have made it through treatment without my kitty. She always has a purr for me. Even when this ole hepatitis wears me out.  --  Phyllis

I am lucky enough to married to an angel. She put up with my mood swings, being sick for 48 weeks and inappropriate anger. Without her love and support I never would have made it. If I had achieved a sustained response then it all would have been worth it, but rebounding two months after stopping treatment was like a kick in the stomach.  --Mike

I know that I simply wouldn’t have survived if i hadn’t worked through treatment, i know my own emotional self well, and I knew that staying at home and simply living with the side effects would have not been an option. I did however negotiate a different position at work, i was a counsellor at the time and knew i was too overwhelmed to be a responsible counsellor, so I chose to take a more admin type role for a year. Like Georgia I was newly divorced and alone, I also had two young kids and a menagerie of cats...giving up wasn’t an option. I found the brain fog of the ribavirin the most frustrating thing to deal with, and spent some time getting my milk thistle dose just right so that it did not exacerbate the sides but did reduce the fog.  --Feyona

On my third trip to see my PA, (haven't even seen my doc yet) after the biopsy, she tells me the numbers and says we will order the Peginterferon and get you on your 1st shot in 3-4 weeks. Now remember, I still have not seen my doctor...So I'm quite anxious, and I tell her I want to discuss this with my doctor...she replies "well he is going to tell you the same thing." I can feel my blood starting to boil.....I told her that here I am, with a virus that can possibly kill me and you don't want to get my doctor in here for further discussion???? She replies, "well we are all going to die, and your doctor is not in today"!!!! I swear I blew a gasket....after the chair I was sitting on bounced off the wall,(it was on casters and when I lept to my feet it took off) I demanded to see ANY doctor in the house. After about 15 minutes, another doc came in and did spend about 20 minutes with me explaining things more in depth. And, some say NOT to slam these so called professionals???? My yankee ass I won't!  --Robert

I saw a Dr once as I needed a shot of cortisol because of severe pain that did not respond to anything. He was a jerk and they sent in some other nurse who didn't even know why I was there. I said "This isn't working for me" and got up to leave. He then grabbed me and pshed me against the table and said would you like the shot standing up or leaning over? I was too shocked to do anything and he continued to give me a shot into my upper spinal area. Luckily he was a sports injury specialist and didn't cripple me or anything. He worked at the clinic with my regular doctor. It took weeks to see my regular Doc and I was trying to fly out to a funeral or I wouldn't have considered this guy. I told my doctor I had tried to run out of the room with Dr-----, but I think he found too much humor in the situation. I have not done treatment. I had a very stressful job and my liver was good and I was the worst case scenario for clearing. I'm afraid with all I've been through (major surgery nightmare, move etc) that my disease is now progressing. I've had two liver biopsies and I don't want to do that to my liver again. Is there a new test that is fairly reliable? My enzymes are fairly low riders (as always) but my viral count has gone off the scale. I got hep-c when I was 17 and I'm 61 now. Also, has anyone found an antidepressant that they feel is best.? (If I get fat I will be depressed over that). It's always been on the table between my psychiatrist and myself: Is it depression or hep C? I came to him in the beginning not knowing why I had NO energy to care about anything and not being able to sleep. The antidepressants we tried did help, but they always had problems too. Never a real Go. I am just feeling worse lately. My medical support is pretty much back where I moved from, but there are good people here. I have a Dr who is hooked into all the specialists at the university. They got me a conference with a psychiatrist from up in Taos. He had grey hair in a ponytail and thought I WAS depressed, but suggested an old MAO inhibitor. I don't think so!! I want to get back to doing my artwork, but I just don't have any energy. My system is too sensitive to drink coffee or I would. At home they gave me some adderal, but it made me nervous and hungry and I threw it away. Now I wish I had it, I'd try again. In New Mexico they are neurotic about giving out medication. Must have a really rotten DEA and a lot of actual problems being a border state. Arizona probably has stricter immigration laws. You can get a drivers license here w/o ID I believe. How dumb is that?! The only thing dumber is not to give you a biopsy in the UK. I just read that in a post. How do you know what state your liver is in? It seems like one initial biopsy is so very important.  -- Norah

I'd love to know who went through either the old mono Interferon therapy or the Peg with Ribovarin, had zero side effects, and had no ill-health afterwards. I personally haven't taken it, but I have good friends who have. Some cleared, some didn't, some had few or no side-effects, some had so many they had to come off to save their lives, but there seems to be a constant theme of what the treatment does to you. It is accepted that those who have chemo for cancer have long-standing, often life-long illness caused by the chemo. Combo treatment for hepatitis C is harsher than cancer chemo, and combo is chemo. In fact there is talk in the UK of giving cancer survivors an allowance for heating because the chemo leaves them far more vulnerable to cold. The decision to treat or not is only that of the sufferer, and there should be no exaggeration of either good or bad effects of treatment to persuade somebody. That should be decided on knowledge, what is learned, good and bad, and logically weighed up by the individual and according to their circumstances. When doing my research I learned that statistics for HCV and life expectancy were this:  25% cleared naturally, most in the acute stage, but 2% cleared naturally in the chronic phase. 25% led a normal life and died of unrelated illness (old age one could say) before they developed cirrhosis. These statistics were, I believe, from the pre-treatment era. These days all statistics appear to be from those who have at least attempted combo. I assume that there are some out there who cleared, had no sides, and no long-lasting effects of treatment. They are, I assume, the ones who got on with their lives and never, ever, made any contact with groups like this afterwards. So I guess it all depends what your priorities are, and maybe how good the statistics say your chance of clearing is. Young, healthy, female, white, little or no liver damage, low viral load, genotype 2 preferably, no autoimmune diseases, a good immune system, they all seem to be pointers to success. As research continues so we learn who is most likely to benefit and who is unlikely to. One of the best pointers seems to be if you are a fast responder (super-responder) and clear in the first 4 weeks. I hope I am not vilified for saying this, which I am only saying as a balance to the "treatment is all and wonderful" group. I do not want to put anyone off treatment, only persuade them to do as much research as possible and not be swayed by anyone, including doctors. Doctors aren't always experts. Mine thought that a positive antibody test alone was enough for a firm diagnosis, and he was a hepatologist. When I told him that you can't diagnose from antibody tests with normal LFT he said I knew more than him if I knew that! So finally I'd say, not only get as much information as possible, but make sure you have a doctor who knows more than you do. BTW nobody can understand why I had 2 positive antibody tests, no sign of virus (learned after having viral load and genotype tests for treatment) and 2 negative antibody tests. The theories vary from "I must have cleared naturally," "the virus is hidden by a rare blood group" to "I can't have ever had it and am very lucky, but also the only one the organization that said that had heard of. Maybe that's because others don't interpret normal liver panels as a sign of cirrhosis? But whatever, I had almost a year of believing I had the virus and it would kill me. Now, I wouldn't have any more tests, if I do have it I'd wait as being over 60 treatment would have a low chance of success and a high chance of increasing my arthritis at least, if not, nothing to worry about. After all, the majority with it don't know so don't have the stigma attached. Me, I just have healthy attitude and try to take care of myself.  --Anna

I understood my doctor was in the top three and I've had two of them. Dr. William Lee at UT Southwestern Medical School here in Dallas and Jeff at Baylor. When he moved to Missouri I met with his replacement, a female Doctor that spent all her time working with lab rats. She told me I had no hope and asked why Jeff was even treating me since I was considered a 100% risk. Before I could answer, that he had given me hope by allowing me to fight, she stated that she was sending me back to work and stopping my treatment. Looking back I'm surprised I didn't jump off the table and scream in her fat face. I said excuse me? She said I'm stopping your treatment and sending you back to work. I asked her by whose authority she would do such a thing in as much as it is/was my life, my health, my disease, my treatment, my decisions and my consequences.... This all sounds very polite and well considered but I am grossly paraphrasing and barely remember it. It probably really started out with something more like, "WTF did I just hear you say?" I afford my respect by default to everyone but I'm like Robert in that respect, they work for me. Just two weeks ago I got a piece of a doctor's ass but asked his staff to leave the room first. I had already made plenty of noise at the front desk about him being late...Told them I was going to canel my appointment in five minutes if I were not seen and I was going to reschedule with a Doctor that values my time as much as his own. I further stated that I had already stayed over an hour longer than I generally do only because I was enjoying a conversation with some older gentlemen in the waiting room. Now before anyone gets their panties in a wad about mean old dave picking on some hapless do-gooder that's fifteen minutes late. My appontment was for 1:45pm and I saw him at 3:15pm. That's completely unacceptable and I told him, his staff and everyone in the lobby and suggested that if he was running that far behind with me, maybe they should consider how much time they have to waste. I must admit I then watched in some amusement as they began to go to the desk one by one asking how much longer it was going to be. He explained that he was in "emergency surgery" (that's what they always say and sometimes they're probably telling the truth) I said I will accept that, but in the future if he was going to be late for an appointment with me to have his staff call and at least afford me the opportunity to re-schedule or chose to wait.  --Hal

I remember how frightened I was in 1999 when I was diagnosed. I found this place, poured out my heart and "the research girls" gave me so much good solid information I knew this was a place to call home. I dont have HepB and HepC anymore. I have other issues related to being a guinea pig early on. But I'll never forget the many kindnesses shown to me by perfect strangers. We've all made and lost friends both off the list and on, but considering the thousands of people that have wandered by and the hundreds that have stayed you're probably safer being a qualified member of this list than you are driving on a freeway. You might feel like crap but at least you won't be white-knuckling it :)  Kindest regards and welcome.  --Dave 

So there you have it. A small inkling of what it's like to have hepatitis C and/or cirrhosis and what the treatment is like. For further information, Google hepatitis C treatment, hepatitis C, and cirrhosis.

Life goes on until it doesn't. Thanks for reading.

Hepatitis C Educational Video

DFL GUBERNATORIAL CANDIDATES' RESPONSES TO HEPATITIS C QUESTION

As you may recall, I send all ten of the gubernatorial candidates a question for them to answer regarding hepatitis C and what they will do as governor to address this very serious issue. I received five responses back. I've submitted them to reNEW.MN Campaign. Here's the responses with my comments.


Paul Thissen
Good to see you last night. I read through the information you sent this morning. Thanks for the alert and sharing your story - and the thoughtful way you are approaching your health and condition. A lot of wisdom there.

One possibilty that we've used in the past is to hold an informational committee meeting to raise the profile about hepatitis C. The upcoming costs of addressing the condition makes it particularly relevant, it seems to me. Let me know what you think.

Paul

This was the best response. It shows that Paul Thissen is ready, willing and eager to listen to the concerns of Minnesotans. He even asked me what I think of his idea. Politicians don't usually do that. I'm very impressed with Thissen.


John Marty
Thanks for sending me this article. I care. And I believe we need to do everything possible to help address people with their medical needs, no matter what they are. There is much that I need to learn about Hepatitis C, and would welcome more information. I understand from your note that there is far too little research going into it, and believe that our country --the wealthiest nation on the planet must prioritize medical research more.

As far as medical care for people, I designed and authored, and am now fighting for the MN Health Plan, in order to treat health care as a right, for everyone, for all of their medical needs. Almost 45,000 people die every year from a lack of access to health care, and I am committed to passing the MHP within my first two years in the governor's office. We can, and must pass this.

As I mentioned above, I would appreciate more information about Hep C, and the congressional proposal for more research that you referred to.

This is also an excellent reply. Again, it shows that the candidate is more than willing to listen to people. He's also eager to learn more about this virus. I do want to say that there is plenty of research and there are a lot of new drugs in the pipeline that are in clinical trials. The main problem is lack of education. Most people don't even know what HCV is. There are a multitude of Baby Boomers who have HCV but who have not yet been diagnosed. Many are not diagnosed until they get cirrhosis. Thanks for caring about this issue, John.


Matt Entenza
Hepatitis C is a serious condition with significant budgetary implications, and is yet another example of why we need a health care system that works for everyone. It is also an instance of the importance of preventative care. In addition to the immediate human concern of minimizing suffering, it is critical that our health care policy aim as much as possible at detecting and treating illnesses before they become much more serious conditions in order to control spending. Establishing a system in which everyone has health care is the only way to effectively cut costs and improve the overall of health of our people.

Matt's staffer Jeremy Drucker sent me this response, so I wasn't sure if it was Matt's response or just Jeremy's response. It's a generic, political answer. I met Matt in person at the DFL SD62 Spaghetti Dinner. He came over to talk to me. I asked him if it was his view or his staffer's. He replied that it's the view of the entire campaign. Finally, on a more personal note, he told me that he has friends with hepatitis C. Ok, so Matt knows what I'm talking about. Matt is very correct is saying that we need to detect and treat serious illnesses before they have a chance to get worse and cause fatalities and/or transplants. The best way is for doctors to have patients complete a survey regarding risk factors for HCV, just as they currently do for depression.


Tom Rukavina
Hepatitis C is treatable but treatment is only effective about ½ the time. As Governor I can appoint a commissioner of health who would push for more screening, particularly of Baby Boomers, to encourage detection before the disease takes its toll. However, the most effective way to respond to Hepatitis C is prevention. Prevention of exposure through medical treatments, particularly transfusions, has been very effective showing us the way we need to respond to other potentially infectious processes. Most new cases of Hepatitis C today in the United States are attributable to intravenous drug use. A Governor can have the courage to take on a controversial subject and support legislation to provide clean needles for drug users. This makes sense for Hepatitis C and other diseases that are spread through sharing dirty needles.

We lost one of finest college presidents in Minnesota to this disease. He tried to fight it through both traditional and experimental drug therapies but in the end he died a painful and difficult death while still in the prime of life. Had he lived, many people would have been better off than they are today. We can't afford to waste that kind of talent to a disease that can be prevented. As Governor, I will take a lead to prevent these kind of tragedies.

Tom is on the right track here, but he obviously needs to be educated about hepatitis C. I'm glad he included the personal note about losing someone he knew to HCV. However, it's a shame he used the word "dirty needles." This phrase stigmatizes the disease and gives people the impression that it's a dirty disease. In reality, anyone can get hepatitis C for a lot of different reasons. While it's true that it's now rare to get it from blood transfusions, because the blood supply is now screened for it, you can still get it from sharing personal items that may cause a blood-to-blood transfer of the virus, such as toothbrushes, razors, manicure scissors, tweezers, etc. It's also rare to get it from tatoo parlors, since there are now laws regulating the use and disposal of the needles and ink. However, people still get it from homemade tatoos and from in-prison tatoos. Even children have been found to have hepatitis C. The hepatitis C community does everything it can to assure that the disease does not have a stigma associated with it. Also, I should point out that there is a certain percentage of individuals who have no idea where they got the virus. They don't have any of the usual risk factors. Theoretically, if a person with HCV is walking in the woods and sticks his ankle on a thorn, then someone else walks by a bit later and sticks his ankle on the same thorn, he could conceivably get HCV. This would be a very rare occurrence, but it could happen. Also, an infected mother can pass the virus on to her child during the birth process. This is rare, too, but it does happen. Tom Rukavina has the right idea. The most important thing right now is to get people tested, and if they test positive, treated.


Mark Dayton
Dear Colleen - I do not intend to consider any realignment within any state agencies, until after I am elected Governor and have appointed the Commissioners of the respective agencies. At that time, I would welcome your recommendations for how the Department of Health could be improved. Sincerely - Mark

I'm impressed that he's willing to listen to what I have to say about the very serious issue of hepatitis C and its devastating health care costs.

PAUL WELLSTONE CARED

This is a picture of Senator Paul Wellstone with Helen Clark and Pat Buchanan. The two ladies came all the way to Washington D.C. from Minneapolis to talk to Wellstone about hepatitis C. He listened to them and he cared. Pat and Helen attended HFI’s 3rd Annual National Hepatitis Congress and Walk on Washington March 25th, 26th & 27th, 2000. They managed to visit with six different Congressional aides and one Senator, all in one day. It was an amazing feat in itself just doing the walking between buildings on Capitol Hill. They think they got the word out, so the trip was worth it. Helen and Pat were the co-facilitators of a hepatitis C support group in the Twin Cities called LiverHope. There was also a HepFest every August at Pat's home in Brooklyn Center, MN. Unfortunately, many of the heppers have since passed on.

This was Pete Gilbertson, otherwise known as Da Yooper because he was from the UP of Michigan. That's my son Marcus with him when he was 12. The puppy was adorable. Pete named her Hope to remind him that he had hope to get a new liver. Unfortunately, he didn't. The VA let him down and he died of liver failure, which is a complication of hepatitis C. We miss him.

May your hepatitis C dragon always be sleeping. Click on the dragon to see it move.

This is a picture of some people at HepFest, Brooklyn Center, Minnesota.

Please stop by and take a look at the Hepatitis C Memorial Wall. The deceased listed here are only a drop in the bucket of all those who have passed on from this tragic and devastating disease.

The Hepatitis C Generation - Newsweek, January 2010

A Personal Story from a Hepatitis C Patient

Hepatitis C: The Insidious Spread Of A Killer Virus - Newsweek, 2002

There are an estimated five million people in the United States with hepatitis C. Most do not yet know they have it. Please ask your health care provider for the simple blood test.

My name is Colleen Morse and I have hepatitis C. I got it in 1969 when I let those two nice young boys put a needle into my arm. Or perhaps it was in 1972 when I gave birth to a 9 lb 15 oz healthy baby boy and had to have packed red blood cells because I almost bled to death. I didn't find out I had it until the early 1990's, as by then the virus had been isolated and the blood test became available. I had no symptoms until about 1998. The symptoms then came on gradually. I had three liver biopsies, each three years apart. The first two showed very minimal liver damage at stage one, grade one. The third biopsy showed a sudden progression to cirrhosis. I thought that was unfair, since I have never in my entire life been a drinker. I now know that anyone can get cirrhosis, even children.

Currently my liver is still well compensated. When it becomes decompensated, it's time for evaluation for transplant. I don't know if I'll go that route. I've lived a fairly long life. I'll be sixty this April. I'm not sure how that happened. Besides, I'm still the same person on the inside. I just look a wee bit different when I look in the mirror now. I can ignore that.

I involve myself in a lot of activities so I don't have time to notice the symptoms, which are now worsening. They include fatigue, muscle and joint pain, a bit of skin itching, a messed up thyroid, etc. My liver is not manufacturing enough cholesterol now. The last time I had it checked, my total cholesterol was only 79. It keeps going down. They don't like to see it get under 100. Another problem is that my liver has decreased its making of vitamin D. Now I get to take prescription supplements.

Oh well, ya gotta die from something. My Uncle Gerald used to say, "What's the difference if you die now or twenty years from now? It won't matter once you're dead." He lived to be 94. He said that at age 40 because he lost a kidney. He lived 54 years with only one kidney.

The main problem is that hepatitis C doesn't get nearly enough funding. There are four times as many people with HCV as there are with HIV. Yet HIV gets a lot more funding. The HIV activists were always very good at organizing for their cause. Now, though, over fifty percent of those with HIV are co-infected with HCV.

I'm so tired of living in a state and a country and a world where the government officials don't care that people are dying. Thankfully there is now a bill in Congress. But will it pass?

This is the reason I sent the email to all the DFL gubernatorial candidates. I wanted a response as to how they will address this problem should they win the governorship. So far I have only received one reply, and that was from a staff member of Matt Entenza's campaign. At least they replied. I did receive another reply, but that was a brush off, as though this issue that affects so many is not important. I was devastated.

I'm a member of the reNEW.MN Campaign and of TakeAction Minnesota. One of the visions of reNEW MN is "We want to live in a Minnesota where the inherent worth and dignity of every person is recognized without exception." The candidate who brushed me off did not recognize my inherent worth. Instead, he made me feel worthless. Yet I make excuses for him. Oh, maybe he was just having a bad day. Oh, maybe he was too busy campaigning. There's something wrong when campaigning takes away from your humanity and compassion.

That's not the kind of state I want to live in.

I hope the other eight candidates will respond to the email I sent them. I hope they respond soon. Their answers will be submitted to the reNEW MN website.

Colleen Morse

White Bear Lake, MN

THE POLITICS OF HEPATITIS C

Today I sent an email to some of the state senators and representatives as well as to all of the DFL gubernatorial candidates. I included links to a U. S. legislative bill (H.R. 3974) called Viral Hepatitis and Liver Cancer Prevention and Control Act of 2009.

This is a bipartisan bill that is intended to increase awareness and prevention of a disease that is already afflicting over 5 million Americans. More than half of these Americans do not even know they are infected. This disease is hepatitis C. It's been a political hotcake for at least a decade.

Here's the text of the email I sent them:

Dear Candidates, Senators and Representatives,

As you may or may not know, hepatitis C is a growing concern. As Newsweek reported this week, the Baby Boomer generation is just beginning to find out that many of them have this virus. Please click on the links below and read the information regarding this virus and its implications, including the Newsweek article. There is currently a bill in Congress to address this very serious issue.

For those of you who are DFL gubernatorial candidates, please send me a statement concerning what you will do in Minnesota, as governor, to address this problem. The information I receive will be submitted to the reNEW Minnesota Campaign.

For more information on how this issue affects patients, the disparities involved and what could be done in Minnesota, please contact me at Colleen.S.Morse@gmail.com

Hepatitis C is a virus that is spread only through blood-to-blood contact. Methods of transmission include blood transfusions prior to 1992, hemodyalisis, sharing such personal items as toothbrushes, manicure scissors, tweezers, razors, etc., sharing of IV drug needles even if only one time a long time ago, sharing a straw to snort a drug even if only one time, tatoos received prior to the new laws regarding tatoo parlors, homemade tatoos, health care workers and any other type of blood-to-blood contact.

HIV has always received more funding than HCV even though there are four times as many people who have HCV. This is because activism for HIV funding has been strong and forceful. Currently at least 50% of HIV patients are co-infected with HCV. There have been many marches on Washington to create awareness regarding hepatitis C. Finally there is a bill in the House that addresses the problem.

The entire bill can be found here.

When the bill passses, it will help to avoid tens of billions of dollars in unnecessary health care costs in the coming decade.

"We have a wave of chronic liver disease that will crash like a tsunami on the US healthcare system if we do not address this problem now," said Lorren Sandt, Chair of the National Viral Hepatitis Roundtable. "This important legislation will help identify the people who are chronically infected and get them into treatment, which can save millions in future healthcare costs."

Hepatitis C has an incubation period of several decades. People who contracted the virus in the 1960's started having complications in the form of liver disease in the 1990's and 2000's. Hepatitis C can lead to cirrhosis, liver cancer and ultimately, complete liver failure. Hepatitis C is the largest cause of liver transplant in the United States.

Here's a link that I sent with my email.

And here's the link to the Newsweek article.

I highly recommend that everyone who may be at risk for hepatitis C read the Newsweek article.

As the gubernatorial candidates respond to me with their answers, I will submit those responses to the reNEW Minnesota Campaign. Since hepatitis C is a gigantic medical issue and is only going to get worse, and since this issue represents such a huge amount of money in health care costs, the responses of the would-be governors is of tremendous importance. We need to know which candidates take this disease seriously and which candidates will commit to having a viable plan to lessen the impact of it on Minnesotans.

If a campaign does not respond, that information will also be submitted. The reNEW Minnesota Campaign's goal is to elect a DFL governor who will adhere to the organization's vision, which includes living in a Minnesota where the inherent worth and dignity of every person is recognized without exception.

BABY BOOMERS AND HEPATITIS C

The Hepatitis C Generation
Are Baby Boomers More Prone To Hepatitis C?
Newsweek.com

The Hepatitis C Generation

Thanks to a disease that lays dormant for up to 30 years, Baby Boomers well past their wild years are starting to suffer the consequences.

Jan 9 2010

When Alan Franciscus was diagnosed with hepatitis C in 1996, his first question was, "Am I going to die?" When his doctor assured him that many treatment options were available, he had a second question: "What is hepatitis C?" Looking back, Franciscus, a 61 year-old San Francisco resident says: "One of the most disturbing things to me was I had never heard of it. I really did not know a thing about it."

Franciscus' question, it turns out, is not such a bizarre one to ask. Despite affecting 1 percent of the population, hepatitis C remains a disease generally misunderstood by the general public with little in financial commitments from the federal government. The CDC's National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and Tuberculosis Prevention had a budget of almost $1 billion for 2008. Only 2 percent of that was allocated to hepatitis B and hepatitis C despite both viruses being five times more prevalent. "No one really knew what hepatitis C was," Franciscus remembers. "A bunch of coworkers thought I got it from eating bad food."

A newly-published Institute of Medicine Report on hepatitis B and C, published today, underscores how this lack of understanding and attention has played out. Although the risk factors for hepatitis C are widely known and completely preventable, the IOM estimates that between 2.7 million and 3.9 million Americans have contracted hepatitis C. (from Jules: Brian Edlin's study presented at AASLD in 2008 reports 5 million have HCV. Other CDC research reports do not include homeless, incarcerated etc).

But the most startling detail about hepatitis C may not be its prevalence, but the population it affects. Two-thirds of those with the virus are Baby Boomers, adults in their 50s or 60s who may have experimented with intravenous drugs decades ago. For many of them, the Summer of Love is a hazy, distant memory from their youth. But hepatitis C, which is transferred by contact with infected blood, has a particularly long incubation period, often 20 or 30 years. That means that the side effects of one drug use in the 1970s could now start to show. "Even though Boomers moved on with their lives, they could be living with an infection that happened many years ago," says John W. Ward, division director for the Center for Disease Control's Division of Viral Hepatitis. "Now, they're aging into a period of their lives when Hepatitis C could become manifest through physical symptoms." One study published last May estimates that, in the next 20 years, total medical costs for Hepatitis C patients will nearly triple, from $30 to $85 billion.

Hepatitis C is a serious challenge for both doctors and public health officials, largely because of its long incubation period. An individual infected with hepatitis C can live the majority of their life not knowing they were infected. In fact, the new IOM report suggests this is usually the case: 75 percent of those with hepatitis C don't even know they have it. And unlike other forms of the hepatitis virus, like A and B, there is no known vaccine. So the virus continues to be transmitted through exposure to infected blood, often injection drug use. Boomers may have also become infected by a blood transfusion or organ transplant before 1992, when officials began screening the blood supply for the disease.

Of those infected with the virus, about 60-70 percent will develop chronic liver disease. For about 40 percent, a months-long regimen of shots and pills will eradicate the virus. But many will continue to live with the disease as a chronic condition; 1 to 5 percent will die of the consequences of liver disease. Some expect to see these conditions become significantly more prevalent as Boomers' cases move from virus to disease. One study, a Milliman Report published in May 2009, predicted that the number of patients with advanced liver disease will be four times greater than it is today by 2029. Cases of cirrhosis, scaring of the liver, will also quadruple.

This means that right now, before that wave hits, is a particularly critical juncture for early detection and treatment of hepatitis C, particularly among the Boomer population. "There's a window of opportunity to identify the disease early," says Ward. Hepatitis C is usually diagnosed with a simple blood test and patients found positive have a number of options in disease management. They can monitor levels of certain liver enzymes, charting any advancement in liver disease, and make lifestyle adjustments to manage the disease such as eliminating alcohol.

So, if the test is so easy, and the risk largely pooled in a specific demographic, why do so many cases go decades undiagnosed? Doctors say it has a lot do with the stigma surrounding liver disease. "If Uncle Bernie says he has cirrhosis, it's like, 'well how much was he drinking?' says Allan Wolkoff, chairman of the American Liver Society and a professor at the Albert Einstein School of Medicine in New York City. "We need to work on that. Good people get liver disease; kids get liver disease. You can get liver disease through little or no fault of your own." In a study of patients in a liver clinic in Iowa, 57 percent of Hepatitis C-positive people reported having experienced stigma associated with their infection. Given that, it's easy to see why well-to-do Boomers rarely get tested for a disease often associated with junkies and alcoholics: neither they, nor their doctors, think to even ask.

Both the IOM and CDC want to change that. The IOM report recommends a comprehensive public education and surveillance campaign, as to increase awareness of the disease, following in the model of HIV/AIDs public awareness campaigns in the 1990s. "As in the case of HIV/AIDS," the report concludes, "increasing general public knowledge about hepatitis B and hepatitis C can be expected to reduce discrimination toward infected people, reduce transmission, and increase early diagnosis and treatment that ultimately save lives." A lot of this, says Wolkoff, hinges on doctors: "there's a certain amount of physician education necessary. Even a small rise in physicians talking about this, talking about it with their patients, could make a big difference.

The CDC may also play a role, particularly in the testing of Boomers. Right now, the organization recommends that anyone who ever tried injected illegal drugs or had a blood donation prior to 1992 be tested. But patients may make compliance with such a regulation difficult -- they may not, for example, volunteer information about that one time at Woodstock -- the CDC is considering a blanket, age-based screening recommendation. "We're launching studies to see if it's feasible and makes sense," says Ward, the CDC official. "Just like everyone over 50 should have a check for colon cancer, it might fit into an age-based checklist of preventative services."

Franciscus did not know much about hepatitis C when he was diagnosed. But he quickly learned one thing: there was not nearly enough information available to patients like him. So he founded the HCV Advocate, a newsletter that now gets 400,000 visits online each month and is his new, full-time job. He regularly speaks across the country, to health providers and educators, on the subject. "The key is going to be public awareness and educating medical providers, to ask questions and get people tested," says Franciscus. "If you catch it early, nobody will die from Hepatitis C."


Conference Call, Monday January 11, 2010
http://www.natap.org/2009/HCV/120609_01.htm

LETTER TO PEOPLE WITHOUT HEPATITIS C

This is a letter that a fellow Hepper wrote to her friends, family and acquaintances who do not have hepatitis C. This is something that everyone should read, particularly candidates and legislators, so they can understand what those with chronic illnesses are going through. Scroll down beneath the pictures for the letter.

This is Pete Gilbertson, known as Da Yooper, with my son Marcus and Pete's new puppy that he named Hope. We lost Pete to complications from hepatitis C. He never had a chance, as the VA wouldn't put him on the transplant list. He died waiting for a liver.

This was taken at a Minnesota HepFest. This was a week of fun and education at a home in Brooklyn Park. People came from all over the United States. Roche and Scherling often paid for food to be catered in.

LiverHope Tent at Gay Pride Festival, Minneapolis

Hepatitis C Quilts Displayed at Minnesota HepFest

Here's the Letter to People Without Hepatitis C

Having Hepatitis means that many things in your life change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects. Of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still

worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy." When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to do so.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes or an hour. And just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting sitting, walking, thinking, being sociable and so on ... it applies to everything. That's what hepatitis C does to you. Please understand that HCV is variable.

It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please do not take it personally. Please understand that getting out and
doing things does not make me feel better. Telling me that I need a treadmill, or that I just need to loose or gain weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct. If I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, hepatitis C often causes secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with
hepaititis then we'd know about it. This is not a drug company conspiracy. There is worldwide networking (both on and off the Internet) between people with hepatitis C. If something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.  ---  Authored by Bek Oberin

NOTE FROM COLLEEN MORSE

The letter above was written by a patient sick every day with hepatitis C. This is a virus that not only attacks the liver, but is also systemic. Upon autopsy, the virus has been found in every organ, including the brain. Some people with HCV have more symptoms than others. Some become incapacitated early, some later. Usually it doesn't cause serious problems until you've lived with the virus for 20 or 30 years. I personally got the virus in 1969, although it wasn't diagnosed until the early 1990's. At one point doctors called it non-A, non-B hepatitis. They knew it wasn't A or B, but had no idea what it was. Finally HCV was isolated around 1992 and tests became available for the blood supply.

The biggest risk factors for hepatitis C include:

* blood transfusion before 1994

* tatoos done before the tatoo parlor sterilization laws went into effect

* intravenous illicit drug use, even if only one time on an experiemental basis

* sharing straws for sniffing cocaine, even if only one time

* sharing manicure scissors, razors, toothbrushes, etc., with an infected person

* hemodyalisis

* medical personnel who received an accidental needle stick

If you have any of these risk factors, get tested for hepatitis C as soon as possible. It's a simple blood test that tells whether you have the virus.

There is treatment available for hepatitis C. This consists of a combination drug therapy which includes self-administered shots of interferon either daily, a few times a week, or once a week, depending on whether you're using a pegylated interferon. The other part of the combo is a daily ribavirin pill. This combo treatment has many side effects, including flu-like symptoms, rashes, serious depression, muscle and joint pain and many others. Some have side effects from the medication to such an extent that they have to go off it. Others tolerate it fairly well. The treatment must be adhered to for 48 weeks for genotype 1 patients and about six months for genotype 2 and 3. Patients are tested 12 weeks into the treatment to see if they are responding. I tried the combo treatment and tolerated it very well, which is unusual. Unfortunately, at 12 weeks it was determined that I was a nonresponder, so they took me off of it.

There are currently new drugs in the pipeline. The most promising could very well be a protease inhibitor that is added to the combo treatment. The biggest side effect in the clinical trials is a rash so nasty that 30% of patients end up in the hospital. This drug is currently in stage 3 clinical trials and is on FDA fast track.

I've now had hepatitis C for 40 years. A few years ago my liver finally turned to cirrhosis. The good news is that it's well compensated.  The bad news is that it won't stay that way forever. When it starts to be decompensated, it's time to get evaluated for liver transplant. If I decide to go that route.

If you're looking for a charity to donate to, the American Liver Foundation could certainly use your support.

If you know anyone with hepatitis C, try to understand what they're going through. Some days they feel very depressed. Some days they feel pretty good, although most have forgotten what it's like to be in excellent health.

An important thing to remember is that hepatitis C is not easy to get. The mode of transmission is blood to blood contact. You can't get it from being around someone, sharing their food, drinking from the same glass or hugging and kissing. It's not an STD, either.

To legislators who may be reading this: Please keep liver disease in mind when making new legislation. HCV doesn't have the funding that HIV does, even though there are four times as man HCV patients as HIV patients. Some patients are co-infected.

Thanks for listening.

HEPATITIS C AWARENESS

Have you been tested? If not, ask your health care provider for the simple test.

Help Fight Liver Disease

Hepatitis C Viris

Liver disease affects thousands of people. Some of these diseases include liver cancer, fatty liver, hepatitis, biliary atresia, Primary Sclerosing Cholangitis (PSC), and others.

What can you do to help? Support liver education. Support the Liver Foundation. And consider being an organ donor.

http://www.liverfoundation.org/