Category Archives: Hepatitis C

Hepatitis C — There are Cures for the Disease, But Not the Stigma


By Bob Aronson

 hep C ribbon
What it feels like to have Hepatitis C

“I was always exhausted to the point that I could not walk a block without having to stop and sit down to rest. The fatigue I felt was so intense that completing just a simple once over lightly housecleaning took days because I had to stop and rest so often. Nausea was a constant companion and my appetite came and went.  Sometimes I would go all day without eating which seems to add to my fatigue.  And then there’s the pain. The pain in the area around my liver was almost unbearable. Then I started the Interferon treatment and it all got worse“ (The words of a Hepatitis C. Patient).

Hepatitis C – The Stigma

stop the judgment“The stigma that surrounds Hep C is reminiscent of the early 80’s when the AIDS epidemic came to the forefront. The idea that only IV drug users get HCV is incorrect, much like the idea that only gay men can get HIV is incorrect. Many of us got Hep C through transfusions, some who worked in hospitals got it from accidental needle sticks.  I am reluctant to disclose my disease because I’m tired of hearing, “So you were an IV drug user, huh” I wasn’t — yet people seem to want to blame us for the disease we have, some seem to think we deserve it.  I am sick, what difference does it make how I got the disease, not a single one of us asked for it, no one would want to live this way.  I wish people would be more understanding instead of so judgmental. (The words of another HCV patient)

 The quotes above are from hepatitis C Patients.  For privacy purposes I have withheld their names.  As you read on you will find other anonymous quotes.  I can vouch for their veracity,

There is a Cure for Hepatitis C , But the Epidemic is Growing

 Here’s What You Need To Know

hep c and liver The Hepatitis C Virus (HCV) is a blood disease.  You can only get it if the blood of an infected person somehow gets into your blood and attacks your liver.  It is not airborne — sneezes and coughs don’t spread it, only blood does.  Not only does Hepatitis C have the power to disable or kill its victims, the people who are stricken with it also carry its stigma and in a way are blamed for getting the illness that could take their lives.  We will address the stigma issue more later, along with the facts and myths surrounding the disease.

The hepatitis C virus was discovered in 1989. Prior to that, it was associated with blood transfusions, but was called non-A, non-B hepatitis because the virus could not be identified.  Up until now the most effective treatment for Cure cartoonHCV was based on the drug Interferon, which was effective in some patients but carried some heavy duty side effects with it.  While some internet medical sites say “Interferon has manageable side effects,” that’s not the story that patients tell.  There are thousands of reports of debilitating fatigue, weakness (asthenia) so great as to limit one’s ability to walk very far, drowsiness, lack of initiative, irritability and confusion.   Often, especially in patients with a history of depression, the condition worsens to include thoughts of suicide and in a few cases committing the act itself.  While some people tolerated Interferon better than others, few tolerated it well and almost all patients prayed for something, anything that didn’t make you feel worse than the disease itself.

Interferon in conjunction with the toxic chemotherapy drug Ribaviron has been the standard treatment for HCV until recently.  The interferon side effects are bad enough, say patients, but when combined with the drug Ribaviron the reaction can and often does get even worse. Some patients report the reaction to the combination of drugs was so negative it had become life threatening.

Finally by the end of 2014 some highly effective, interferon-free, Hepatitis C oral treatments or “cures” were approved.   Gilead Sciences had two,  Sovaldi and Harvoni and AbbVie’s introduced Veikira Pak. These effective meds come with a high price tag, however.  It is hoped that the competition from several newer and yet unapproved drugs will bring the price down

One drug in particular, Gilead Science’s Harvoni, seems to be getting favor from the medical community and it is indeed a cure.  In clinical trials, Harvoni Harvonicured hepatitis C after 3 months of treatment in about 94% of people who took it. Cure rates approached 100% after 6 months in patients whose hep C was harder to treat, because of cirrhosis (source: Gilead Sciences)

Harvoni most certainly is a cure for those who can afford it.  The drug while highly effective, comes with an equally high price tag. That 3 month treatment program mentioned earlier can cost $95,000 and as of this writing many insurance companies are not yet on board.  One source told us, “the protocol for my mom is 24 weeks this treatment cost $ 204,120.00”  There is financial assistance available and links are listed elsewhere in this blog.

Harvoni is well researched and while calling it a “Cure” is accurate it is only recommended for patients with genotype 1a and 1b. Other genotypes still have to use Sovaldi (also a Gilead product) in conjunction with Ribaviron and some genotypes still have to use both Ribaviron and Interferon.

Sovaldi was released in December of 2013 but still had to use Ribaviron for all G types. Harvoni is a combination of Sovaldi and Ledipisvir and eliminated the need for Ribaviron in 1a-1b’s and was released in Oct 2014.

Space doesn’t allow us to take  a detailed look at all the HCV treatments and we can’t do justice to Harvoni the Gilead Sciences cure either.  We applaud the companies that developed these drugs, but no matter how wonderful the cure is, the disease continues because we still don’t have a vaccine that prevents people from getting the disease in the first place.  The cure is only effective with people who have the disease and  by the time it is identified they usually have already suffered incredible damage.  We must keep pushing for a vaccine that will wipe out the disease before it can infect anyone.  Right now there is no vaccine for HCV.  They are working on it, but so far such preventive measures have proven to be illusive and the disease continues to pile up victims. It now kills more Americans than AIDS. If you want more information about the HCV and the various treatments these links will help.

Viekera pak https://www.viekira.com/

Harvoni  http://www.gilead.com/~/media/Files/pdfs/Policy-Perspectives/ExpandingAccesstoHCVTreatments10214.pdf

If you have Hepatitis C and your physician has recommended any of the treatments but you are unable to pay the price of the medicine you should know this.  Harvoni manufacturer, Gilead offers free meds to the underinsured or patients who have been denied coverage by their insurance provider, if they meet financial requirements. There has been a great deal of confusion and misinformation about the “Coupon” offered by Gilead, so here’s the straight story.  The copay coupon is available to anyone who is insured.  It is not based on income and will pay up to 25% of the copay amount. The only restriction on the copay assistance is if the patient is covered by Medicaid or another government program, then they are not eligible. There are no financial requirements connected to the coupon.

People on Medicare with part D ( which they pay for) are eligible for assistance from Gilead if they are denied by Medicare or underinsured.  They are not eligible for the coupon. They also have to sign a form saying they will not try to get reimbursed for any out of pocket expenses. The coupon is for those who have private insurance with a copay.

There are other resources as well and you can explore them by clicking on the links below.

 financial aid resources

http://hepc.liverfoundation.org/resources/what-if-i-need-financial-assistance-to-pay-for-treatment/

http://www.hepmag.com/articles/hepatitis_paps_copays_20506.shtml

http://tinyurl.com/orbec8m

http://tinyurl.com/njbl3jm

Health experts estimate that over 3.2 million Americans have Hepatitis C and that worldwide the number of infected people is close to a quarter of a billion.  Many, if not most, may be financially unable to get the cure.

 “What is Hepatitis C and how do you get it?”

 As noted earlier, Hepatitis C is a blood disease that attacks the liver.  Simply put, in order to contract it the blood of an infected person must find its way into your blood.  Here are the facts that dispel the myths. (http://www.hepmag.com/articles/2512_18750.shtml)   You can get HCV from:

  • blood transfusionInjecting drugs with needles that have been used by others.
  • Needle-stick injuries and exposure of open wounds or mucous membranes to infected blood.
  • Transfusions.  Blood or blood-product transfusion (especially before 1992).

Unlikely sources of infection.

  • Piercing and tattoos. It is unlikely you can get HCV from tattoos done in a licensed, commercial tattooing facility. However, transmission of Hepatitis C (and other infectious diseases) is possible when poor infection-control practices are used during tattooing or piercing such as that done in prisons and other unregulated settings. More research is needed to be sure.
  • Sexual activity. it is generally believed that HCV cannot be transmitted through semen or other genital fluids, unless blood is present. While the risk of becoming infected with HCV through unprotected sexual intercourse is very low, medical  experts urge everyone to use safe sex practices whether HCV is involved or not.
  • Giving Birth. Women who have HCV run less than a 10 percent chance of passing the virus to their babies during pregnancy or delivery,
  • Breast Feeding It is also considered unlikely that HCV can be transmitted through breast feeding or breast milk unless the woman’s nipples are bleeding.
  • Sharing a drug snorting straw.  Yes, there is a chance, albeit, a very low one of being infected with the hepatitis C virus through sharing drug-snorting paraphernalia.  Hepatitis C is a disease of the liver, but the virus lives in the bloodstream. Snorting drugs, such as cocaine, heroin or methamphetamine, can cause damage to the tiny blood vessels in the nose, potentially resulting in traces of blood being deposited on the tip of the straw or other device. Sharing snorting paraphernalia isn’t a common mode of HCV transmission, but the threat exists.

Hepatitis C is a terrible disease.  Its symptoms often don’t show up for years and when they do it is because significant damage has been done.  Here are a few abbreviated patient’s stories about their disease, how they got it and the cost of the cure.

Patient story @ 1. “Harvoni is extremely expensive. It is I believe $1152.00 per pill. The protocol varies by 8, 12 and 24 weeks, depending on the amount of liver damage and viral load. Do I believe the price is fair? That’s a very hard question to answer. I think that it is necessary to look at the bigger picture.

 I have had HepC since between 1979 and 1985. I was in an auto accident and received several liters of blood and had several surgeries.  I was not diagnosed until 2002 when I was so fatigued that I could barely functionI subsequently did a 48 week course of the horrific drugs, interferon and ribivarin which led to horrific side effects, three times weekly injections of Neupogen and two times weekly injections of Procrit. My white cell count dropped so low that I was hospitalized, transfused and taken off treatment at 40 weeks. It took me 2 1/2 yrs to recover. I progressed from there to cirrhosis, liver cancer, ESLD and two liver transplants in 09. So, in the bigger picture, when adding up the cost of liver disease from HepC and all it’s complications the price seems fair.

 Patient Story number 2I had previously treated with interferon/ribavirin for 48 weeks with weekly injections of procrit along with the occasional transfusion. This treatment almost killed me and I have many chronic health issues as a result.

 I think Harvoni is extremely expensive, for those that don’t qualify for the co-pay offered by the manufacturer. I was able to receive that co-pay which was a total of $15 for my 12 week treatment. My husband and I were willing to pay whatever necessary for me to be treated by Harvoni because I have been symptomatic from the Hep c for over 10 years after being infected during a blood transfusion while giving birth to my daughter in the 70’s.

 Patient Story number 3. The price is fair when you compare total cure to a transplant (lets say $96,000 vs $500,000 minimum for a transplant).

The cost is always a factor. I was lucky and appealed to my insurance company after 2 denials. I had to supply some of the research to the reviewing doctors to educate them that even though it wasn’t FDA approved for transplant recipients, it was made specifically for my genotype and it was actually fewer drugs than sovaldi/olisio (they wanted me to take that and I held out for Harvoni)

 I think most of the people who have HepC got it years ago before they had identified non A/nonB as HepC. Mine was from a blood transfusion. I think today the blood supply is safe.

 My message to others is this, find a way to get on one of these cures. They aren’t nearly as bad as the old regimens that were brutal and that many of us have lasting effects from being on them. These are relatively side effect free and it is best to take care of this before your liver becomes ravaged by the disease putting you in line for a transplant. That is a long line and the chances of dying while waiting for a life saving liver are getting larger. So many people die everyday waiting. I’m finally on the road to health with a new liver and noting will stop me now.

The preceding testimony is real, the stories are true.  The names have been withheld to protect privacy, but we’ve only scratched the surface of the misery of Hepatitis C.  The disease is bad enough.  Patients don’t need the additional emotional pain caused by public misperception of the disease which is stigma postershrouded in myths that result in blaming the victim for getting the disease.  Even some medical professionals believe that if you have HCV you were probably a drug addict who was infected by using a “dirty needle.”  The truth is that fewer than half of those infected were drug users, but so what?  Do we blame the victim of a shooting who happened to stop at a store in a high crime area for being there?  Do we blame the carpenter who lost his fingers to a table saw for using it?  Do we blame the physician who treats Ebola patients for getting the disease herself?

Blaming the victim is mean spirited and unfair.  The supposition that all HCV patients were drug users is the product of rumor and not supported by facts.  But again, so what?  No one wants to have HCV.  No one purposely sets out to get it.  Just because you are in a position of risk, doesn’t mean you should be blamed for the resulting illness. It’s time we got the facts and showed some compassion and understanding.  Blaming people for their health problems helps no one, whether it’s Cancer, COPD, drug addiction, obesity or diabetes.  The fact is that most 21st century medical conditions are due to some combination of genetics, environment, and personal choice.  So unless you believe that each of us brings on our own misfortune, then it only makes sense to get the facts and set the record straight.

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New heart, new life, new man

Feeling better than ever at age 73

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me atbob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor a thttp://www.donatelife.net.  It only takes a few minutes.

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Hepatitis C, Peter and Ashley. A Love Story.


For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms.  Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people.  It is the story of a Boston couple — each has the disease.  One far more seriously than the other.

Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative .  They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community.  These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.

The story you are about to read was written by Ashley at my request about her beloved Peter.  She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis.  Ashley and Peter don’t have much,  but they have each other and by God in my book that makes them the richest people on earth.

If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story.  Please, if you pray, say one or two for Peter and Ashley.  God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace.  It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.

More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C, Peter and Ashley.  A Love Story.

Written by Ashley Tenczar Curran

“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind.  I did not know then, in my shock and disbelief, that a shadow had fallen.

Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years.  I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.

As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?”  I realize how stupid this sounds, but I married Peter that instant.  He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite.  He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time.   We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.

We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough.  All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm.  We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time.  We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.

But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs.  It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later.  Peter did not fare so well.

When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease.  When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man.   Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.

I remember the guy saying “Why are you being so nice to me?”

I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support  (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.

This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet.  He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state.  I find I love him more , the sicker he gets.  The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”

Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available!  Soon we will find that our young people are gravely ill, (we can see it now), and that scares me.  Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.

A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”

Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves?  So many diseases ARE the result of something “we have done wrong”.

The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!”   More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).

I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.

Please consider being an organ donor.  There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.

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After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor.  If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it.  Please everyone, if you pray,say one for Peter and Ashley.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C — What You Need to Know


More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C is one of several hepatitis viruses and is generally considered to be among the most serious of these viruses. Hepatitis C is passed through contact with contaminated blood. http://www.mayoclinic.com/health/hepatitis-c/DS00097

According to the U.S. Centers For Disease Control (CDC) http://www.cdc.gov/hepatitis/c/cfaq.htm Hepatitis C is most commonly spread through the use of infected needles. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants. Now we know that people can become infected with the Hepatitis C virus during such activities as

  • Sharing needles, syringes, or other equipment to inject drugs
  • Needlestick injuries in health care settings
  • Being born to a mother who has Hepatitis C

Less commonly, a person can also get Hepatitis C virus infection through

  • Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
  • Having sexual contact with a person infected with the Hepatitis C virus

***Note, the Executive Director at HCVets.com, Tricia Lupole, indicates that the CDC information may be incorrect. She made this comment on our Facebook page.

“HCV by sex is a risk if both partners experience trauma and exchange blood…. the only cells found is seminal fluids are dead cells…. confirmed by many microbiologist. http://www.ncbi.nlm.nih.gov/pubmed/15128350 There are 100s of studies that show this is the case but it is junk science that reins control of the message to control the funding. Lots of plans to make HCV the fall guy for bad behavior.“

In a second post she went on to say, “Yes, the CDC has quoted the same statement for about 15-20 years now. The study I posted is based on the CDC National Survey. Another sad point, last I checked. Even though we all know better the CDC says that there is not enough evidence to show tattoos are a risk factor.

AMA does not want to regulate tattoo parlors as medical procedures because they are responsible for guidance/ prevention. (The task has been given to OSHA).

Today Ms. Lupole issued this statement:

The Centers for Disease Control federal funding has decreased in recent decades, while there’s been increased demands for vaccination programs; resulting in limited resources for at-risk adults and other mandated priorities. The categorical nature of federal funding for HIV, STD, and viral hepatitis prevention limits the shifting of funds across program lines. In response to these funding woes, the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention’s (NCHHSTP) captured HCV disease and redesign public health services to fit HIV programs, instead of critical public health needs. It’s important to note that HCV disease was previously integrated into federal research that included its viral family called Flaviviridae, whose members are Yellow Fever and Dengue viruses and transmit disease through mosquitoes. The HCV genome is almost identical to Dengue virus.


NCHHSTP’s Federal mandate is an integration of existing programs with new programs, like Viral Hepatitis, developed to mirror HIV/AIDS management model based on specific risks and disease pathology. STD and Substance Abuse programs associated with the spread of HIV/AIDS received increased attention and funding, blurring the other components of these programs.

Needless to say, NCHHSTP has meet with resistance from advocates and congressional leaders, because of this effort by public health agencies to narrowly define HCV’s pathology.


Today, NCHHSTP spends half the federal resources acquired for HCV to vaccinate patients with both Hepatitis A & B vaccines. The majority of remaining resources are directed at drug and STD intervention and prevention. The STD division must qualify for its share of funding by defining HCV a sexually transmitted disease.


Despite scientific proof that HCV is not an STD, NCHHSTP promotes HCV as an STD based on a handful of studies that bring about scientific uncertainty, working against broader public health threats. Research excluded several methods by which the virus transmits to insure standard elements comply with CDC corporate agreement requirements. Thus… junk science.
Such actions suggests this poor public health response to the HCV Disease epidemic, may be the direct result of a system in disarray – seemingly captured by special interest with legal and political agendas that have negatively influenced the response. The integration approach has created disparities in access to health care and created “social labels” that have fostered discrimination, responsible for the reduction in quality of life.

The enduring legacy of “junk science” and indifference of governments, nonprofits, advocates, political parties or economic elites, have grave and global consequences given the propensity for viral transmission in provider settings as seen in current headlines.

FY 2012 Hepatitis C transmission and prevention: latest news. Massive increase of hepatitis C incidence in HIV-positive gay men in Switzerland 30 August 2012 …http://www.aidsmap.com/Hepatitis-C-transmission-and-prevention/cat/1628/

• FY 2008- No evidence of a HCV epidemic in HIV negative gay men
Dr Turner et al. Data from attendees at a London GUM clinic suggest that there is no increase in HCV infections amongst HIV negative gay men.

• FY 2007- Injection Behavior, Not Sexual Contact, Accounts for Couples’ HCV Risk NEW YORK (Reuters Health) – Injection behavior, rather than sexual contact, accounts for the clustering of HCV virus (HCV) infection in heterosexual couples, according to a report in the June 1st issue of The Journal of Infectious Diseases.

• FY 2004 No Evidence of Sexual Transmission of HCV among Monogamous Couples: Results of a 10-Year Prospective Study The risk of sexual transmission of HCV virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years.

Either way, CDC or not…. junk science remains junk science. Wish the outcry would focus on piercing jewelry or the reuse of razors and personal care items verses a national message about a method that is least as likely as not. This battle over CDC junk science, goes way back and is in memory of many who passed HCV on to family members, while sacrificing pleasures of the mind, body, and soul. As you can imagine, sexual transmission is a constant worry for some. Their partner may catch/transmit this deadly virus through sex, protection or not….. yet… turn right around and share razors and other items as such.  Especially the economically depressed populations.”

Most recently, though, we’ve identified another way people may become infected and through no fault of their own. Recently in a New Hampshire hospital an employee who was a drug addict and who also had Hepatitis C was found to be injecting himself with filled syringes meant for patients, refilling the syringes with a harmless liquid non-pain killer and then replacing the needles and syringes on the tray to be used again. Below is one of the original stories on this 2012 incident.

‘Serial infector’ accused of spreading hepatitis at NH hospital

U.S. Attorney’s Office | ASSOCIATED PRESS

CONCORD, N.H. — Authorities in at least six states are investigating whether a traveling hospital technician accused of infecting 30 people with hepatitis C in New Hampshire also exposed earlier patients to the liver-destroying disease.

David Kwiatkowski, a former technician at Exeter Hospital, was arrested Thursday morning at a Massachusetts hospital where he was receiving treatment. Once he is well enough to be released, he will be transferred to New Hampshire to face federal drug charges, said U.S. Attorney John Kacavas, who called Kwiatkowski, 33, a “serial infector” who worked in at least half a dozen states.

Authorities believe Kwiatkowski stole drugs from a hospital operating room in another state, but they declined to name any of the other states, saying only that they are not clustered in one part of the country. They would not say in what hospital Kwiatkowski was being treated at so he couldn’t be contacted for comment.

This story brought new attention to hospital policies on infection control, narcotics control and patient safety and has had ripple effects across the nation if not around the world.

So…the next question is, how serious is hepatitis C? Chronic Hepatitis C is a serious disease that can result in long-term health problems, including liver damage, liver failure, liver cancer, or even death. It is the leading cause of cirrhosis and liver cancer and the most common reason for liver transplantation in the United States. Approximately 15,000 people die every year from Hepatitis C related liver disease.

What are the long-term effects of Hepatitis C?

Of every 100 people infected with the Hepatitis C virus, about

  • 75–85 people will develop chronic Hepatitis C virus infection; of those,
    • 60–70 people will go on to develop chronic liver disease
    • 5–20 people will go on to develop cirrhosis over a period of 20–30 years
    • 1–5 people will die from cirrhosis or liver cancer

The CDC strongly suggests that all baby boomers born since 1945 should get tested for Hepatitis C. http://tinyurl.com/8tg28x6Baby boomers account for 2 million of the 3.2 million Americans infected with the blood-borne liver-destroying virus. CDC officials believe the new measure could lead 800,000 more boomers to get treatment and could save more than 120,000 lives.

“The CDC views hepatitis C as an unrecognized health crisis for the country, and we believe the time is now for a bold response,” said Dr. John W. Ward, the CDC’s hepatitis chief.

Several developments drove the CDC’s push for wider testing, he said. Recent data has shown that from 1999 and 2007, there was a 50 percent increase in the number of Americans dying from hepatitis C-related diseases. Also, two drugs hit the market last year that promise to cure many more people than was previously possible.

What are the Symptoms of Hepatitis C?

Here’s what WEBMD says. http://www.webmd.com/hepatitis/hepc-guide/hepatitis-c-symptoms

Most people who are infected with hepatitis C-even people who have been infected for a while-usually don’t have symptoms.

If symptoms do develop, they may include:

  • Fatigue.
  • Joint pain.
  • Belly pain.
  • Itchy skin.
  • Sore muscles.
  • Dark urine.
  • Jaundice, a condition in which the skin and the whites of the eyes look yellow.

A hepatitis C infection can cause damage to your liver (cirrhosis). If you develop cirrhosis, you may have:

  • Redness on the palms of your hands caused by expanded small blood vessels.
  • Clusters of blood vessels just below the skin that look like tiny red spiders and usually appear on your chest, shoulders, and face.
  • Swelling of your belly, legs, and feet.
  • Shrinking of the muscles.
  • Bleeding from enlarged veins in your digestive tract, which is called variceal bleeding.
  • Damage to your brain and nervous system, which is called encephalopathy. This damage can cause symptoms such as confusion and memory and concentration problems.

What Treatment is Available?

So if you have Hepatitis C, then what? There are a number of options and there might even be a cure before too long. Standard state of the art treatment today for Hepatitis C is with Peginterferon and Ribavirin which achieves a “sustained response” up to 54% of people, which means that the virus has been eliminated from their blood after stopping treatment. People with hepatitis C types 2 and 3 have sustained response rates of about 80%; people with type 1 have rates of up to 50%.

While hepatitis C treatment has come a long way, there are still drawbacks. For a person who’s newly diagnosed, a 54% cure rate may not sound great. After all, it means that about one out of two people won’t respond to treatment.

Also, hepatitis C treatment is less effective in some populations. For reasons that no one understands yet, African-Americans are less likely to benefit from treatment. And the treatments may not be safe for people with other medical conditions — such as kidney failure, heart disease, or pregnancy. Interferon can also be expensive; according to the American Academy of Family Physicians, it can cost $6,000 per year. http://www.medicinenet.com/script/main/art.asp?articlekey=52451

It is important to note again, that while liver transplants can be very helpful to Hepatitis C patients, the procedure is not a cure but rather a delaying action and an effective one. There is some evidence that a transplant from a living donor to a patient who has been receiving the Interferon treatment could represent a cure. http://www.youtube.com/watch?v=3kOElXz0vVg

A Possible Medicinal Cure

Gilead Science is performing multiple studies to test an experimental drug, but the trial that is possibly the most intriguing looks at a combination therapy that rolls two medicines into a single pill. Gilead hopes to advance tests of its lead hepatitis drug GS-7977 in a combination with another company medicine, GS-5885.

Bristol Myers Squibb had a promising drug but clinical trials resulted in some negative results so the company has sent the project back to the drawing board. http://www.nytimes.com/2012/08/24/business/bristol-myers-ends-work-on-hepatitis-c-drug.html?_r=2&

Finally, Gilead Sciences, mentioned earlier, has a drug that combined with another from Bristol Myers Squibb could be a cure, at least clinical trials seem to offer that indication but the two companies, according to Hepatitis C activist Margaret Dudley can’t seem to cooperate. She is circulating a petition to get the “cure” on the market. http://hepc-cured.com/

October is National Liver Awareness month. We hope you have found these blogs helpful and offer these links for further information.

http://www.liverfoundation.org/

http://www.nlfindia.com/index.asp

http://www.mayoclinic.com/health/liver-problems/DS01133

http://tinyurl.com/92bjlup U.S. Government Link

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Prison’s Deadliest Inmate, Hepatitis C, Escaping


In our continuing series on Hepatitic C we offer this story from NBC and the Associated Press  3/14/2007

Public-health workers warn of looming epidemic of ‘silent killer’

Marcio Jose Sanchez  /  AP

VACAVILLE, Calif.  — The most dangerous thing coming out of prison these days may be something most convicts don’t even know they have: hepatitis C.

Nobody knows how many inmates have the disease; by some estimates, around 40 percent of the 2.2 million in jail and prison are infected, compared with just 2 percent of the general population.

Eventually, when they are released, medical experts predict they will be a crushing burden on the health care system, perhaps killing as many people as AIDS in years to come. At the same time, they will be carriers, spreading the disease.

Hepatitis C can be treated, but many prisons do not test for it. Among the reasons: Budgets are tight, and treatment is expensive. So prison officials close their eyes to the gathering emergency and pass it along to the outside world.

“Right now there’s a golden opportunity to bring solutions to this problem before it hits,” said Dr. John Ward, director of viral hepatitis at the National Center for HIV/AIDS at the Centers for Disease Control and Prevention in Atlanta.

Hepatitis C is already the most common disease of its sort in the United States — a chronic, life-threatening, blood-borne infection. It is most commonly linked to infected needles used for drugs, though prison tattoos and body piercing with non-sterile equipment are also risky.

‘Silent killer’
What makes this virus particularly insidious is that as many as half of the people who have hepatitis C don’t even know they have it. The “silent killer,” already considered epidemic by the World Health Organization, often remains dormant for decades.

Some of the infected are lucky: One in five people who get hepatitis C will clear it out of their system naturally. But without treatment, one in four will suffer liver failure or develop liver cancer. Last year liver cancer was the only one of the top 10 fatal cancers in this country to increase, in large part because of hepatitis C.

More than $1 billion is already spent each year on this country on hepatitis C, and those costs are expected to soar unless prevention and treatment are expanded.

Without those changes, researchers project that liver-related deaths will triple from around 13,000 in 2000 to 39,000 by 2030. It’s also estimated that 375,000 Americans with hepatitis C will develop cirrhosis by the year 2015.

Anita Taylor, 48, is already there, in end-stage liver disease. Taylor speaks very slowly and moves with care. She often finds that she can’t say the words she wants to — they just won’t come out. Her body hurts most of the time. Her nose bleeds a lot.

‘Doctor gave me a death sentence’
A mother of two and former heroin addict, Taylor said she learned she had hepatitis C when she was jailed in Nevada in 1991 for being under the influence of drugs.

“They tested me and told me I had hepatitis C. They didn’t tell me there was a treatment and a cure,” she said. “And I didn’t know to ask.”

Taylor’s experience is not unusual.

“The doctor gave me a death sentence, recalls Leslie Czirr, a 36-year-old parolee. “He told me, ’There’s no cure for this and you will die from it unless you are hit by a truck first,”’

Czirr learned she had hepatitis C during a prenatal examination in 1996, at a time when she wasn’t in prison. Czirr has been arrested 10 times for drug possession and served almost eight years in prison on various drug possession and dealing charges.

She has started to suffer exhaustion, brain fog and aches. She recently enrolled in a county program to be treated — treatment, she said, she was denied at California’s Norco State Prison.

“I asked and asked, but they barely want to give you a Motrin,” she said. “I really want to get well, not just for myself, but so I’m not putting anyone else at risk.”

Limited studies indicate that fewer than 10 percent of prisoners who have contracted hepatitis C are treated. The reason vary. Medical staff have other priorities, and not all are well-informed about the disease. Prisoners with short sentences are often excluded because they won’t be able to complete treatment, and drug addicts who are inclined to return to risky behavior are often turned away because it is assumed they will simply reinfect themselves.

No funding for treatment
Usually, though, it comes down to money. Prison officials say that even if they wanted to provide the treatment, it is extremely expensive — about $9,500 per patient per year — and no federal funds have been earmarked to pay for it.

“It’s a hard sell to convince taxpayers why additional resources should be spent on the health care of the incarcerated when there are a lot of people who aren’t incarcerated who don’t have adequate health care,” said Dr. Joseph Bick, chief medical officer at the California Medical Facility at Vacaville.

Many of the inmates in Vacaville’s hospice unit — reserved for those given six months or less to live — are dying from hepatitis C-related ailments. Bick said half of the prison’s 3,200 inmates have a history of having been infected with hepatitis C, and at any given time about 40 of those men are receiving the intensive drug treatment to cure it.

“I’m pretty sure this is how I got it,” said Anthony Harris, an inmate at Vacaville. He rubbed his forearm hard, as if trying to remove the prison tattoo bearing his children’s names.

Harris, 51, is a former barber serving a life sentence for second-degree murder. In 2003, a doctor at another prison told him he had Hepatitis C; he researched the disease in the prison library and has sought treatment ever since.

“They gave me shots for Hep A and B, got rid of them. I’d like to get rid of the C too,” he said. “I’m entitled to that. But some docs will give you the treatment and others won’t. I keep making appointments. I keep asking.”

The course of treatment can take a year, and involves taking pills twice a day and weekly injections. Side effects are like those associated with chemotherapy — nausea, exhaustion, depression, debilitating aches and pains — and the cure only works about half the time.

But Bick said the high cost of treating prisoners for hepatitis C is a bargain compared to the bill that would come due if these cases are left untreated. “It’s a tremendous opportunity for us to have an impact on the larger health of the community,” he said.

Dr. Lynn Taylor, an assistant professor of medicine at Brown University’s medical school, agrees that prison is “perhaps one of the best setting for treatment of high-risk individuals.”

‘Window of opportunity’ for public-health efforts
“Prison can be a window of opportunity to reduce the reservoir of infection,” she said.

But there are no federal rules about testing and treating hepatitis C. Federal guidelines, issued by the CDC in 2003, said correctional facilities should “become part of prevention and control efforts in the broader community.” But they don’t recommend screening for all inmates.

Instead, the CDC urged medical staff to ask new inmates about their risk factors, and only those prisoners who seem likely to be exposed should undergo screening, which costs $5 to $10.

The CDC guidelines fell short, said Dr. Josiah Rich, a professor at Brown who directs the university’s Center for Prisoner and Human Rights. Rich’s studies confirm that convicted criminals are almost always willing to be tested for hepatitis C, but will often lie to prison authorities about their past drug use.

“We already know that more than one in three people coming through corrections has Hep C, so by definition everyone coming in is high risk. It’s absurd that they’re not testing everyone,” he said.

Rich concedes that testing every inmate will “jack up costs” for prisons.

“An individual is going to say, ’Hey, you tested me, you said I was positive, and now I want to be treated, and I’m going to sue you if I don’t get treated,”’ he said.

Lawsuits on the rise
Lawsuits are, indeed, on the rise.

The first significant case came in 1999, when officials at the Luther Luckett Correctional Complex in La Grange, Ky., refused to allow inmate Michael Paulley access to free hepatitis C treatment. Paulley, who was serving a 25-year sentence for rape and burglary, sued and won.

But the treatment came late and he died in 2004, the year he would have been eligible for parole. The litigation prompted broader testing and treatment in Kentucky, but Paulley’s physician, Dr. Bennet Cecil, a Louisville, Ky.-based hepatitis C specialist, said prisoners still die “all the time” for untreated hepatitis C.

“I think it’s immoral if a country, a state a society is going to incarcerate somebody and then deny them necessary medical care. I think that’s an outrage,” he said.

Prisons in at least a dozen states — Alabama, California, Delaware, Florida, Georgia, Idaho, Michigan, Mississippi, Nebraska, New York, Oklahoma and Virginia — are being sued over failure to treat hepatitis C.

But it’s tough going, said Oregon civil rights attorney Michelle Burroughs. Although she’s won a settlement that mandated testing for at risk inmates and treatment for those who are eligible, five of the 10 inmates she’s representing in a class-action lawsuit have died while the litigation proceeds.

5-year wait
“It’s appalling, horrendous, horrifying. Prisoners wait five years just to be evaluated,” she said.

Rep. Barbara Lee, D-Calif., recently reintroduced legislation that would mandate prison testing and treatment of hepatitis C. Earlier similar proposals in recent years have failed.

“The plain fact is that prisoners do not stay in prison. With more than 90 percent of incarcerated persons returning to their communities, it is clear that when a prisoner is infected, we are all affected,” Lee said.

In North Dakota, it didn’t take legislation, court orders or new regulations to prompt medical services director Kathleen Bachmeier to begin screening every inmate for hepatitis C after a methamphetamine epidemic tripled her state’s prison population in about a decade. As the intravenous drug addicts arrived, so did the hepatitis C.

“It became obvious to me that these people are going to cost the state a lot of money if we don’t do something about it,” she said.

North Dakota now treats anyone who meets certain medical criteria, whose sentence is long enough to complete the course of treatment and who is willing to try to quit using drugs.

“We look at this as a huge public health initiative,” she said.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C — No One is Immune Everyone is Affected


More people in the United States now die from Hepatitis C each year than from AIDS  according to a new report from the Centers for Disease Control and Prevention.   More than 3.2 million Americans are currently infected with Hepatitis C and the really bad news is that most people who have it don’t’ know it.

In coming days I will publish more information and heart wrenching stories about Hep C and the patients it affects, the lives it wrecks and what it costs our society in both human lives and dollars…it is astounding.

Hep C is a disease of the liver that society likes to keep in the shadows because of some of the ways in which it is contracted, but we cannot begin to deal with a disease if it is kept secret and treated as though it was sinful and dirty.  It isn’t.  The people aren’t and they need our help and our compassion.

Hepatitis C can be treated and there are some exciting possibilities on the horizon but now there is no available cure,  not even a liver transplant is a cure because Hepatitis C is systemic.

To get us started on the road to understanding please view this video.  It says more in a few minutes than anything I can write at this moment.  Please share the video with others and then watch this space for more.  I fully intend to say a lot more on the subject of this disease that affects so many of my friends.

Thank you  http://www.youtube.com/watch?v=J4TCo-qVoKk

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Bristol Myers /Gilead Science — Profits Ahead of Life


I have a good news, bad news story to report today.  It is about a combination of life saving drugs that may never see the light of day because the two companies that make them can’t or won’t cooperate with one another.  One woman, Margaret Dudley of San Antonio Texas is doing something about it.  More about her, later.

This is about a combination of drugs from Bristol Myers Squib and Gilead Science that could be a cure for Hepatitis C which affects nearly 200 million people worldwide.  It is a viral infection that can lead to liver failure and death.  End-stage liver disease (cirrhosis) due to chronic hepatitis C has become the leading indication for liver transplantation in the United States.

First the good news, this really could be a cure.   A combination of Gilead’s GS-7977 and Daclatasvir from Bristol Myers Squib shows great promise as a cure according to some limited studies.  These drugs are pretty effective on their own but apparently when combined they could be a cure…yes cure.  I know, cure is pretty strong language in the medical world but it is the medical world that is using the term.

Now the bad news.  The two companies are not cooperating with one another, they can’t seem to agree on anything other than to disagree and in the meantime people are getting sicker and dying.  This is the classic battle over which company will make the most money when the two drugs are combined.

Here’s an Excerpt-The Street

Gilead, Bristol Put Profits Ahead of Best Care for Hep C Patients

“The new Hep C therapy at issue here combines Bristol’s Daclatasvir with Gilead’s GS-7977. Each is a single pill administered once a day. The results from this new therapy are nothing short of spectacular — an early cure rate of 100% for genotype 1 patients and 91% of genotype 2/3 patients, according to data from a mid-stage study announced Thursday at the European Association for the Study of Liver Disease (EASL) meeting.

A 100% cure rate for genotype 1 patients! Obviously, results can’t get better than that.

You’d think there’d be a rush to move the combination regimen of Daclatasvir and GS-7977 into a larger, confirmatory phase III trial, but you’d be mistaken. Amazingly, this most promising new treatment for hepatitis C patients may actually be discontinued because Bristol and Gilead can’t work together.

Good luck understanding why Bristol and Gilead can’t come together to help Hep C patients. The companies can’t even agree on the fact that the two companies are not agreeing”.

This is an incredibly important story and one that needs wide circulation in hopes of forcing these two companies to cooperate for the sake of saving lives instead of who can provide the greatest return on investment.  As mentioned earlier, Hep C affects about 200 million people worldwide.

Typically, to become infected with hepatitis C virus, the blood of an infected person enters the body of someone who is not infected. The most common way involves sharing needles or other equipment used to inject drugs. This kind of Hepatitis C infection is in the news now because an infected healthcare worker at a hospital in New Hampshire used needles on himself then left them for others to use.  Thousands may have been infected as a result and that investigation continues.

It is also possible, but less likely to become infected with shared use of personal care items such as toothbrushes and razors. Infection is also possible through sexual contact. Hepatitis C is not spread by casual contact, kissing, coughing, sneezing, sharing utensils, or breastfeeding.

Other people with greater risk of infection include:

  • People with tattoos or body piercing done with non-sterile equipment.
  • People who received an organ transplant or blood transfusion before July 1992.
  • People with clotting problems who took blood products prior to 1987.
  • People receiving hemodialysis or who have a history of hemodialysis for kidney failure.
  • People with HIV infection.

Since July 1992, all blood and organ donations in the U.S. are screened for the hepatitis C virus. According to the CDC, the number of hepatitis C infections declined by 90% from 1994 to 2006, partially as a result of this.

A diagnosis of hepatitis C infection doesn’t necessarily mean you need treatment. If you have only slight liver abnormalities, you may not need treatment, because your risk of future liver problems is very low. Your doctor may recommend follow-up blood tests to monitor for liver problems.

Hep C symptoms may include:

  • Fatigue
  • Upset stomach and diminished appetite
  • Joint and muscle pain

Also, patients may experience symptoms related to liver cirrhosis, such as:

  • Jaundice, which is a yellowing of the skin and eyes
  • Urine being a dark yellow color
  • An increased tendency to bleed or bruise

Treatment of chronic hepatitis C varies depending on the individual. A person with chronic hepatitis C may not need or benefit from treatment. Some people may not be able to tolerate treatment because of side effects.

Currently, the FDA has approved the following treatments for hepatitis C:

  • Pegylated interferon alfa-2a
  • Pegylated interferon alfa-2b
  • Ribavirin
  • Standard interferon alfa
  • Incivek
  • Victrelis

Common side effects of interferons include fatigue, muscle pain, headache, nausea, vomiting, weight loss, and depression, and changes to your blood cell counts. Side effects of ribavirin include anemia, skin rash, fatigue, and nose/sinus congestion so a new treatment with minimal side effects and greater effectiveness would be cheered wildly.

Liver transplant
if your liver has been severely damaged, a liver transplant may be an option. During a liver transplant, the surgeon removes your damaged liver and replaces it with a healthy liver. Most transplanted livers come from deceased donors, though a small number come from living donors who donate a portion of their livers.

For people with hepatitis C infection, a liver transplant is not a cure. Treatment with antiviral medications usually continues after a liver transplant, since hepatitis C infection is likely to recur in the new liver.

Now to our hero 61 year old Margaret Dudley of San Antonio, Texas.  Margaret thinks this situation is intolerable and she has launched a petition drive to encourage the two companies to work together to save lives.

Last fall, she was tested for hepatitis C she believes she contracted from some earlier tattoos.  “I had no idea,” Dudley said. “I had no reason to think it would come back positive, but it did.”

Then she found out about Bristol Myers Squib and Gilead.  “That’s basically what me and millions of others have been waiting for,” Dudley commented.  We’re asking these companies put best patient health before profits.”

She has several thousand on her online petition so far and says public pressure may spark the pharmaceutical companies to keep going with clinical trials.  Dudley’s goal is to gather 100,000 signatures by July 28, 2012, which is World Hepatitis Day.  We encourage you to sign the petition.  Just go to: http://tinyurl.com/cow2uwt  We just can’t let profitability trump human life.

Some of the information in this blog was drawn from the following sources.

http://www.hcvadvocate.org/hcsp/articles/Shaw-Stiffel-1.html

http://tinyurl.com/d55az86

http://www.webmd.com/hepatitis/hepc-guide/chronic-hepatitis-c

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 

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