AIDS ACTION DAY AT STATE CAPITOL

Today I went to the Capitol in St. Paul for AIDS Action Day. This was sponsored by the Minnesota AIDS Project. HIV Advocates converged on the state capitol to increase visibility about HIV, meet with legislators, and rally in the Capitol Rotunda. We heard personal stories from several who were diagnosed with HIV. Hearing their stories and talking to the legislators make the difference when it comes to protecting funds for HIV prevention and services.

HIV can strike anyone at any age. Medical treatment has come a long way in the last thirty years. It still needs more research and more funding.

Many people with HIV are coinfected with HCV (hepatitis C). This is a growing public health concern, with an estimated 4-5 million persons coinfected worldwide. In the United States, of the approximately one million people living with HIV/AIDS (PLWHA), 30% are also infected with HCV.

For more information on HIV/HCV coinfection, see the hcvadvocate website.

Every 35 minutes a woman tests positive for HIV in the United States. It's time to get tested. If you think you're at risk, don't wait. It's a simple blood test. You can be tested for hepatitis C at the same time.

Here's the WHO website for more information on HIV/AIDS.

The stories told today at the Capitol Rotunda emphasized the need for more education. One woman told how schools teach a lot about nutrition and exercise but only spend two weeks on sex education. Another young person told how he was diagnosed with HIV at the age of 16. He pointed out that kids are going to have sex. Why not educate them on the risks involved and how to protect themselves? He particularly emphasized that there is no education in schools regarding gay sex.

Many HIV advocates and patients today visited legislators. The idea is to provide more sex education in schools and to provide more funding for HIV/AIDS. We cannot cut funding. To do so would be to cause more deaths. I made a visit to Sandy Rummel's office. She didn't have any openings for the rest of the day, so I left a message with her legislative assistant. I asked that she be in favor of more funding for HIV/HCV, not less. I know that Sandy will do the right thing for this issue. She always does. 

I personally had friends die from HIV/AIDS and from liver failure caused by hepatitis C. These are lives that could have been saved. Unfortunately, it has become a political issue rather than a humanitarian issue.

Kudos to Mark Dayton for attending this rally. This is personal to him also, for he lost a friend and coworker in the 1980's to AIDS. He posted a very poignant and sensitive statement about it on his Facebook wall. By the way, Dayton was the only gubernatorial candidate to attend this event.

  AIDS Awareness Day at St. Paul State Capitol Rotunda

AIDS Action Day, March 10, 2010

Ephraim Olani, Executive Director of SAYFSM

(Sub-Saharn African Youth & Family Servies in Minnesota

Minnesota AIDS Project Advocate

AIDS Awareness Day Speaker

AIDS Project Photographer

Sandy Rummel's Office

******************************************************

THIS AND THAT

My best friend Sue (Roller) Twiest, my son Charles when

he was much younger, and myself. Taken in Lutsen, MN.

I took an FMLA day today. I woke up feeling lousy with muscle and joint pain and other HCV symptoms. It's not fun living with liver disease. On the other hand, I've always had a very strong constitution. It's hereditary. I come from good strong sturdy peasant stock. As a Mayflower descendant, I enjoy strong healthy genes. All the weak genes died out that first winter that was so harsh and that killed half the residents of Plymouth Colony.

By this afternoon I had bounced back. Two extra-strength Bayer helped. I decided to spend some time with Gym. This time I ran a mile around the track. That's 14 laps. Then ten miles on the stationary bike while reading more in Rob Hahn's book. After that one of the weight machines. Then the stair climber while watching the tv that's embedded in the apparatus. All that took up over an hour. Time to hit the pool.

I spent about an hour in the pool swimming laps. I love swimming. The pool was nearly empty. I suppose most people were still at work. Back and forth, forth and back, breast stroke, back stroke, scissors kick, then back to the regular swim stroke. I was starting to feel good.

Jacuzzi, steam room, shower. Time to go back home. Nap time.

Tomorrow after work I get to meet my trainer. Nate. Oooh la la. Oh wait, what if Nate is short for Natiana?

I lost another five pounds. I can hardly wait for spring. Then I can run in the huge park that's adjacent to my apartment complex.

On March 11, I get to find out how my liver's doing. I go in every six months to see Gina Storres, nurse practitioner for Minnesota Gastroenterology. Sometimes I see Dr. Coleman Smith, one of the best experts on hepatitis C in the Twin Cities. My blood is tested for various things, such as ALT, AST, cholesterol (mine has been way too low), thyroid, etc. Then I'm sent to St. Paul Radiology for an ultrasound of my liver. So far, even though I have a cirrhotic liver, it's well compensated. Decompensation could occur anytime. That's why they do the ultrasound every six months. It tells them if there are any tumors and whether the portal vein is still functioning properly. So far so good, but that could change in a heartbeat. After all, I had no liver damage for decades, then suddenly it went from stage one, grade one (which signifies minimal damage) to cirrhosis in less than three years. With cirrhosis, there is also a risk of developing liver cancer. Some think I must have been a heavy drinker or I wouldn't have cirrhosis. That's false reasoning. I have never been a drinker. Never liked the taste, plus I get enough headaches. Lots of people have cirrhosis who have never been drinkers. You can get it from HCV, HBV, auto-immune hepatitis, fatty liver and other medical conditions.

How do I cope with chronic disease? Except for the times when I have medical appointments, I try to ignore it. I know it's there, but I try to keep busy. That way I don't think about it. I'm very busy with Toastmasters, DAR, Red Hat Society, and now I'm also active politically. Not to mention my full time job and the hours I spend blogging.

The only thing I wish for is a better support system. I used to go to LiverHope, but they're not so active anymore. Most of the members either died or cleared the virus with treatment. Unfortunately, I was a nonresponder to treatment. A good support group is an excellent thing to have. Only other heppers know what it's like to live with this. Some of my friends try to understand. Some of them have medical issues of their own. Ain't life grand!

On the other hand, I enjoy spending time with people who aren't aware of HCV and its effects. It makes me feel normal again.

I also enjoy meeting new people and learning new things. And maintaining hope that the FDA will soon approve the new protease inhibitor that will be added to the treatment protocol.

Meanwhile, I enjoy listening to music. Happy music makes me feel better. It makes me smile. Watching Savion Glover tap dance also makes me smile. Thinking of my new political friends makes me smile too. Thanks Holly, Orrie, Mark, Katie, Brian, Gene, Frank, Elizabeth, Ryan and everyone. My life is richer for knowing you.

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.

HEPATITIS C AWARENESS

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