Demystifying Hepatitis C for Native Americans: Antonio Gonzalez's Story

When Antonio Gonzalez was diagnosed with hepatitis C in Geneva, Switzerland, doctors told him if he didn't get a new liver within five years, he didn't stand a chance at a long life. As he waited for a new liver, Gonzalez thought about all the moments he'd miss. He wanted to be around for his son's graduation.

Gonzalez hadn't even heard of hepatitis C when he was diagnosed, and didn't know how he got it. A Native American and member of the Comcáac nation, he surmised that he was probably infected with hepatitis C while fighting in Vietnam, where he suffered from many major open wounds.

While he was sick, Gonzalez put together a box of things that people could remember him by after he passed away. When he finally got his liver transplant in 2005, he was able to unpack the box and begin living again. "So beautiful to receive a liver and to unpack, like, 'I'm not going anywhere!'" he said.

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Ireland: The psychological effects of hepatitis C: 'It was a dirty and uneasy feeling and it began to haunt me'

It was in the early noughties when I first got my bloods tested. I wasn't even thinking about hepatitis C at that time, that wasn't on my radar at all. To be honest, I only got tested because a number of other people in the methadone clinic I attended at that time were getting tested. I had no idea that test would turn out to be the turning point in my life and the reality check that I needed.

At this point, my lifestyle was chaotic. This was down to my misuse of drugs and the type of life that comes with taking that path.

My issues with addiction started very early on, when I was 14. Like many others from my area at the time, peer pressure to do drugs was a big issue - like many teenagers I suffered from low self-esteem and drugs were an appealing way to 'fit in'.

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Canada: 'Get informed, get tested': getting the word out about hepatitis C

Steve Pollard came close to death, underwent two liver transplants, and received treatment with experimental drugs before he was clear of hepatitis C and began to get his life back. When he recovered, he vowed he would devote his life to raising awareness about the viral disease — known as the “silent killer” — with the hope of preventing others from going through what he did.

Pollard, 48, was one of the speakers at an event outside Ottawa City Hall on Tuesday to mark World Hepatitis Day.

His message: “Get informed, get tested and tell a friend or loved one to do the same. If you are not doing it for yourself, do it for them.”

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New Zealand: Cost keeps cure out of reach for those with Hepatitis C

Craig Hopkins, 52, nearly died from liver failure after contracting Hepatitis C virus (HCV) from an amateur tattoo. His new liver developed HCV but was finally cured after treatment with a new unsubsidised drug made available on compassionate grounds.

Now Hepatitis C free, the 52-year-old is calling for Sovaldi (sofosbuvir) and Harvoni (ledipasvir/sofosbuvir) to be made available in New Zealand.

"I reckon it's really sad the drugs are not available. If they were, it would free up the operating tables and they wouldn't need to do so many liver transplants."

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Street Art Fair Raises Awareness About ‘Silent Killer’ Hepatitis C

DENVER (CBS4) – Local artists spent Sunday creating a mural to raise awareness about Hepatitis C. It’s a disease that patients call a silent killer.

Patients and survivors came out to the event to support World Hepatitis Day, including Rhonda Robineau. Today she is happy and healthy, but it wasn’t always that way.

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Port Aransas man with hep c fights insurance company

 "I want to live. I want to be healthy. I want my liver to be cured now, not when it's almost impossible to cure and then be put on the liver transplant list."

PORT ARANSAS -A Port Aransas man is literally fighting for his life.

Richard Titus, 56, has been duking it out with his health insurance company to cover a treatment that could save his life.

Titus recently discovered he has Hepatitis C, a liver infection caused by the Hepatitis C virus.

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Cost in the way of a cure for hepatitis C

Christopher Cummins, 42, believes he contracted hepatitis C through blood transfusions at birth. Last year, his insurance paid for a $100,000 treatment that eradicated the virus.

Dee’s liver is scarred, but just a bit too healthy for her insurance to foot the bill for the new medications that cure hepatitis C more than 90 percent of the time.

The Butler County resident, who suspects she got the virus getting a tattoo, was recently told by her doctor to come back in a year.

John, a retired small-business owner from Washington County who was given blood in the early 1990s, was also denied the antivirals. Now, as he watches a friend grow weak from liver cancer, he fears he’s glimpsing his future.

An appeal to a pharmaceutical company is Jennifer’s last shot at treatment after the insurance company denied her three times. The 34-year-old office manager – who said she gave up her heroin habit nine years ago – can barely make it through the workday because of fatigue. 

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Vietnam era veteran carries battle cry of hepatitis C

ATHENS – Mike Blackburn didn’t serve in Vietnam but he was a veteran of that era. He never served in combat. But his war continues to this day. And according to his doctors, his war will end soon.

Blackburn, 62, has hepatitis C virus with stage 4 liver failure. A few weeks ago he was placed on hospice with 3-6 months life expectancy. His diagnosis of hepatitis C didn’t come until Aug. 10, 2014, just six days before his 62nd birthday, when he went to the hospital with severe stomach pain.

Last year’s birthday of course is a blur for Blackburn and his wife, Pam. But he’s a self-proclaimed old country boy from Kentucky and he’s a fighter and he hasn’t given up hope.

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What's behind fatigue, elevated liver enzymes?

'I'm more tired than usual, doctor," the patient said, though she really thought nothing was wrong. At 60, she assumed age was catching up with her, and was at the doctor's office for her routine checkup.

Indeed, all her blood work was normal - except for the panel revealing elevated liver enzymes. A liver ultrasound suggested the damage had been going on for some time.

Aside from hypertension, she had no other active medical conditions. The only drugs she took were a diuretic and a multivitamin.

Read more at http://www.philly.com/philly/health/20150628_What_s_behind_fatigue__elevated_liver_enzymes_.html#afUCSI50z4BEYo88.99

Goodbye to the Boys on the Bus: How the VA Cured My Hepatitis C

They were a rough-looking crew, the boys on the bus. To be fair, practically no one looks great at 5:45 in the morning, the time you have to show up at the Veteran's Administration Outpatient Clinic in Redding to catch the van to Mather Medical Center in Sacramento. I say “boys” but occasionally a woman or two joined us, all of us veterans who for a variety of reasons choose the VA for our healthcare needs, even if it means occasionally riding the short bus 200 miles to see a specialist.

Most of us kept to ourselves, perhaps because the hour was early and talk would have inevitably turned to the illness that had earned each of us our seat. Cancer, lung disease and diabetes don't make for great breakfast conversation, especially if you happen to be suffering from one of those maladies and you're on the way to the doctor to find out how long you've got to live. Hepatitis C was my illness and I've never been keen to share that information with anyone. Our silence was stoic, not uncomfortable.

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As Minnesota insurers limit access to hepatitis C drugs, patients chafe

Kelly Krodel thought a miracle had arrived just in time — in a drug that could eliminate the hepatitis C infection she had carried for three decades before it started to wreck her liver.

Turns out, she’s going to have to live with the virus a bit longer. As long as the South St. Paul woman is reasonably healthy, her health insurance won’t pay the drug’s five- or even six-figure cost.

“Now there’s a cure and I can’t even touch it,” she said. “It makes you so angry.”

Krodel is one of a growing number of hepatitis C patients in Minnesota caught in a bind between the exorbitant cost of the year-old medications — Harvoni, Sovaldi and Viekira Pak — and the tight restrictions insurers have used to prevent the drugs from busting their budgets.

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AIDS LifeCycle Rider Loses Mom to Hep C, Uses Mic to Talk About Treatment and HIV-Hep C Co- infections

By David Heitz

What happened to Nenna Joiner’s mother is getting to be a really, really old story for people living with Hepatitis C.

Joiner’s mother died Nov. 22, 2014, because she could not get access to lifesaving Hepatitis C treatment.

Joiner, 40, of Oakland, Calif., is riding in AIDS LifeCycle this year to raise awareness about this all too common story. She did not even know her mother had Hepatitis C for many years, even though her mom knew she had it.

Serving as one of several spokespeople for the ride, Joiner is using her platform not only to raise Hepatitis C awareness, but also to highlight the reality of HIV-Hepatitis C co-infections. Such co- infections tend to be more common among intravenous drug users and men who have sex with men.
Joiner also is dedicating the ride to all women of color.

“When I heard about (the Hepatitis C), it pierced me, and I had to learn more about it, because I was caretaking for mom at my home,” Joiner said. “She had known for a while. I went to a doctors’ appointment with her and asked (healthcare providers), ‘What are you testing for?’ They just want to give you paperwork and fliers, you know.”

Joiner said her mother had battled alcoholism many years, and had been in the hospital many times. Her mother also is a Baby Boomer. Baby Boomers have been identified as a high risk group for Hepatitis C by the U.S. Centers for Disease Control and Prevention (CDC). In fact, every Baby Boomer in America needs to get tested for Hepatitis C, according to the CDC.

“I asked her, ‘Well what is this?’” Joiner recalled. “And she said, ‘Oh, don’t worry about it.’ Well I need to worry about it. I need to know about it. So I took the paperwork and began reading it myself, and I  began to tell people to get vaccinated for Hepatitis A and B.”

Last year, just as Joiner had competed AIDS LifeCycle, she got a call from a friend. Her mom had ended up in the emergency room. She was in Los Angeles and could not be there.

Joiner said her mother was getting help from Oasis Clinic in Oakland. But her mom was unable to win approval for either the new, expensive medications that cure Hepatitis C or a liver transplant.
Oasis is a small clinic that fights for access to Hepatitis C for the most marginalized of the marginalized, including uninsured or underinsured alcoholics and/or drug addicts.

“The whole insurance thing…I was being a good advocate, but with not really knowing anything, I would go with her to the doctor and they would say, ‘Come back in a couple of months, insurance will approve it,” Joiner said. She did not know the ins and outs of working pharmaceutical patient assistance programs or the rest of the red tape that often comes along with winning approval for drugs such as Sovaldi and Harvoni. Often, it takes being a self-advocate to get the medications on top of getting help from a doctor of advocacy group.

“It was a stalemate,” Joiner said. “They would forget things, paperwork was getting lost….I just don’t think (insurers) are doing exactly what’s necessary.”

Joiner said what was even worse was that her mother became afraid to get too close to her daughter, Joiner said, fearing she could be contagious. Hepatitis C is a bloodborne disease and cannot be spread  through casual contact such as kissing and hugging.

“I never stopped kissing her or holding her hand,” Joiner said.

Joiner’s messages are: Get tested for Hepatitis C. You may be infected for many years, not know it, and be passing the disease along to others. Hepatitis C can be in your bloodstream for decades before you ever show any symptoms.

Also, if a loved one has the disease, educate yourself about it, and help them seek treatment.
Joiner says she’s get some flak from others for speaking out about Hepatitis C because she owns an adult book store. They insinuate that she thinks she’s changing the world by passing out free condoms.

“People would say, ‘Oh, you own a sex shop, and you’re going to save the world,’” Joiner said. “It’s not the condoms that are saving lives. It’s the information.”

Canada: Personal-care worker struggles after contracting hepatitis C from client

The journey from the good life to bad started in the summer of 2011. Then, nearly 20 years into a career as a personal-care worker, Rowe took a client into her home for weekend care.

The non-communicative client cut herself in the bathroom and while a visiting nurse friend stemmed the bleeding, Rowe began to clean up.

“It’s summer, I’m in flip-flops and I’ve got cracked feet. I’ve got my gloves on, but they aren’t going to do anything for me.”

The client had hepatitis C and an unknowing Rowe contracted the disease.

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6 Things People With Hepatitis C Wish You Knew

You might know someone living with hepatitis C and not even realize it. 

Having a chronic hepatitis C infection can affect a person’s day-to-day life more than you may expect. Hepatitis C is the most common blood-borne virus in the United States, with more than 3 million people infected, according to the Centers for Disease Control and Prevention (CDC). But even with such high numbers, patients feel there’s a lot of misinformation about this infectious disease.

Here’s what people diagnosed with hepatitis C want you to know about their illness:

1. Hepatitis C is a serious disease. “You can’t put your head in the ground,” says Joe Benko, 64, an Army veteran from Allentown, Pennsylvania, who learned he had the virus while donating blood. “If you have hepatitis C, you have to be proactive and approach it. That’s the only way to get rid of it."

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UK: Man given HIV and hepatitis from blood transfusion finally wins apology - but still fighting for compensation

Mark Ward was being treated for haemophilia as a teenager in the 1980s when he became one of thousands made ill from infected blood supplies 

 A man who was infected with HIV through a blood transfusion in the 1980s is demanding financial compensation after finally getting an apology from the Government.

Mark Ward said his life was destroyed when he tested positive with the virus at age 15 after receiving tainted blood at the Royal Free Hospital in North London.

Athough, at 45, he has outlived doctors' expectations, he grew up with a “death sentence” hanging over him, dependent on a daily dosage of drugs with no idea how long he will live.

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Hepatitis C -- The Long Goodbye

The long goodbye is often used to describe the drawn out fading of a person's mind, who is suffering from Alzheimer's disease.

But for my mom, it was because of Hepatitis C.

My mom worked as a hospital lab technician for most of her career. She remembered accidentally sticking her hand, with the contaminated needle of a sick patient.

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Canada: Hepatitis C: breakthrough drug coverage a lifesaver for B.C. man

Kaslo resident Desmond McKilligan contracted hepatitis C more than 40 years ago from a tainted blood transfusion, and just got a call saying he qualifies for Sovaldi.

"My liver doesn't have anywhere to go but cirrhosis," he told CBC News. "It was a great thing to be called about that."

McKilligan says it's a new lease on life, and is thrilled he may actually see his grandchildren in Montreal.

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Local Patients Denied Lifesaving Treatment

ALTOONA - Imagine being diagnosed with a deadly disease that can be cured, but you can't get the treatment. More than 100 patients in our region and millions across the country, with Hepatitis C face that frightening situation. Treatments that can reverse the virus  cost about $1,000 a pill.

A tattoo changed a Bedford County man's life. Mike Miller got it done a few years ago by a friend and  last August he found out he'd also gotten the hepatitis C virus. He's tired, he has abdominal pain and his joints ache. He says, "there are just days that I don't feel like getting out of bed."

Fortunately, tests show Mike is still in the early stages of Hep. C.  His blood doesn't show a high number of infected cells and he doesn't have cirrhosis of the liver. So, he doesn't qualify for treatment that could keep the disease from progressing. 

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Doctors urge Hepatitis C patients to seek help now due to rising costs

INDIANAPOLIS - Doctors say many who have Hepatitis C don't know it.

There is a new cure, but in part, because of its high cost, insurance companies are looking to cut coverage.

Dr. Steven Norris with Community Health says new drugs to the market are a dramatic game changer for Hepatitis C patients who, until now, endured treatments with multiple side effects and a low 20 percent success rate.

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Living with hepatitis C is tough so I give my mobile number to patients

"I’m a semi-retired specialist nurse and don’t mind if people call when they need reassurance or a friendly voice."

I work one day a week as a hepatitis nurse specialist. I didn’t start my nursing career until I was 36 because there wasn’t a training college in the Bahamas where I lived.

I have spent 30 years at Mount Vernon hospital but reduced my hours to look after my husband who was diagnosed with motor neurone disease.

I still felt I had something to offer after he passed away and put the word out to colleagues. Someone mentioned hepatitis and I thought, why not?

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