By MICHAEL NINBURG​ NOVEMBER 15, 2019

I traveled to Boston last weekend for the annual meeting of the American Association for the Study of Liver Diseases. This meeting is personal for me — it was where 11 years ago I decided to begin treatment for hepatitis C, which I had been diagnosed with nearly 20 years earlier.
Hepatitis C is the nation’s deadliest infectious disease and a leading cause of liver cancer. Although recent advances in treatment represent lifesaving progress, more must be done to deliver on the promise of these advances and eliminate viral hepatitis in the United States.
I was initially diagnosed with hepatitis C in 1990, but, like many people with it, I deferred treatment — the options available had low success rates, significant side effects, and were time-consuming. For a while the complications were minimal, but by the early 2000s my tests began to show signs of liver disease. By 2008, I had signs of cirrhosis, which is scarring of the liver, a sign of late-stage liver disease and a precursor to liver failure.

At the 2008 liver diseases meeting in San Francisco, which I was attending as a longtime viral hepatitis advocate, Dr. Nezam Afdhal, who is now the chief of the division of gastroenterology, hepatology, and nutrition at Beth Israel Deaconess Medical Center in Boston, convinced me to enroll in a clinical trial for a promising new hepatitis C drug.
The 48 weeks of treatment included weekly injections of pegylated interferon, twice daily doses of ribavirin, an antiviral medication, and 12 weeks of an experimental drug called telaprevir, a direct-acting antiviral. When the treatment ended in December 2009, my blood tests showed no signs of the hepatitis C virus. Six months later, I was told I was cured. Even better, scans show that my liver has started to heal itself and reverse the decades of damage from hepatitis C.

Related:
Most state Medicaid programs continue to restrict access to hepatitis C medicines
My story — and my health — are a testament to the lifesaving potential of new treatments. Yet even though we now have cures for hepatitis C, and a vaccine to prevent hepatitis B, steps must be taken to reach the populations who are disproportionately affected by this disease, including certain racial and ethnic minorities, baby boomers, people who inject drugs, and some recipients of blood transfusions and organ transplants, in order to eliminate viral hepatitis in the U.S.
To start, the U.S. needs a national elimination strategy with dedicated funding. In 2016, the World Health Organization drafted the global viral hepatitis strategy to eliminate viral hepatitis as a public health threat by 2030. It was signed by all WHO members, including the U.S. The U.S. Department of Health and Human Services also has a National Viral Hepatitis Action Plan, but it’s not enough. We need dedicated funding from Congress for national awareness and testing efforts. We also need funding to support the CDC’s draft recommendation for all adults to receive a one-time hepatitis C antibody test.

TO CONTINUE READING: https://www.statnews.com/2019/11/15/hepatitis-needs-more-action-united-states/?fbclid=IwAR017eh6-7z2CalzqGbDSeEM0PHaP

OCTOBER 30, 2019 / NEWS RELEASES
Goal of procedure is to improve recovery of living donors, which may encourage more donationsMedia ContactCaroline Auger 216.636.5874

Cleveland Clinic has successfully performed the Midwest’s first purely laparoscopic living donor surgery for liver transplantation in an adult recipient. The advanced procedure is available at only a few hospitals worldwide, and Cleveland Clinic is the second U.S. academic medical center to offer this approach for living donor liver transplantation.
Unlike open surgery that requires a large incision to access the liver, the laparoscopic procedure is performed with surgical tools and a camera inserted through a few half-inch holes in the abdomen of the living donor. Once the piece of the liver is dissected, the surgeon retrieves the graft through a small incision below the navel. The minimally invasive technique benefits the living donor, who experiences better postoperative recovery and a quicker return to normal life, less pain, smaller scars, and lower risk of an incisional hernia compared with traditional open surgery.

About five percent of people who undergo a liver transplant receive the organ from a living donor who has made the altruistic decision to give up a portion of their liver to save someone else’s life. The liver is the only organ that can regenerate, which makes it possible for a living person to donate a portion of their liver. It can take six to eight weeks for a healthy liver to grow back to its original size.

TO CONTINUE STORY: https://newsroom.clevelandclinic.org/2019/10/30/cleveland-clinic-performs-its-first-purely-laparoscopic-living-donor-surgery

​A new case of hepatitis C was reported nearly every eight hours in Kanawha County last year.

The number of men and women diagnosed in 2018 with the infectious disease soared in the months after the Kanawha-Charleston Health Department closed its public syringe exchange earlier that same year.

Hepatitis C, a virus that can lead to liver cancer or early death if left untreated, is commonly contracted through sharing needles.

New data from the West Virginia Department of Health and Human Resources revealed 1,114 newly reported chronic hepatitis C cases in 2018. It’s the highest number of chronic hepatitis C cases reported in the past five years in West Virginia’s largest county.

“Everyone understands we have a problem, but no one understands just how big the problem is,” said Dr. Letitia Tierney, director of the hepatitis C clinic for Cabin Creek Health Systems.
Tierney emphasized that the area is nearing a hepatitis C outbreak and a potential HIV outbreak, as both viruses can be shared through needles.
Two new HIV cases were confirmed in Kanawha County this summer, according to Angie Settle, executive director of West Virginia Health Right. The nonprofit clinic tested 1,550 “high risk individuals.”
The DHHR did not provide its HIV numbers by Monday’s press time.
“We have a very narrow window of opportunity here to make a significant change,” Tierney said.

TO CONTINUE READING: ​https://www.wvgazettemail.com/news/health/hepatitis-c-numbers-soar-in-kanawha-following-syringe-exchange-closure/article_0

​By Alyssa Kitlas September 11, 2019

One month ago, the National Viral Hepatitis Roundtable (NVHR) hosted its first ever Patient Summit with the theme of “Nothing About Us Without Us.” Nearly 100 hepatitis C patient advocates from across the country joined to share their stories, strengthen advocacy skills, and identify opportunities to lead the way in our national response to viral hepatitis. You can follow the conversation on Twitter by searching #Voices4Hep. I had the pleasure of helping facilitate a discussion about building coalitions and working with health departments with Ronni Marks from the New York State Hepatitis C Elimination Task Force/Hepatitis C Mentor and Support Group (HCMSG) and Robin Lord Smith from the Maryland Hepatitis Coalition/ Help4Hep. It was an incredible meeting to be part of and the room was filled with both support and a strong sense of community. You could feel the excitement as patients shared their experiences and provided invaluable critique and suggestions on how to eliminate hepatitis in communities across the United States. Many patient advocates are currently part of their state or local elimination planning processes and others are looking for ways to become involved with this work.
“The voice of the patient advocate is as important if not more important than other voices at the table. If health departments don’t include the patient perspective, they are missing essential insight and information. The Patient Summit was an incredible success and we are already seeing results with patient advocates connecting with state and local health departments and other key partners. This is just the beginning….the patients are coming to the table.” - Robin Lord Smith from Maryland Hepatitis Coalition and Help4Hep
I sat down with the new Director of NVHR, Lauren Canary, to discuss the importance of engaging people with lived experience in hepatitis work and ways that health departments can support their state and local patient advocates.

TO CONTINUE READING: https://www.nastad.org/blog/nothing-about-us-without-us-importance-centering-voices-patient-advocates-public-health

SCIENCE NEWS  from research organizations
Date:July 16, 2019
Source:Boston University School of Medicine
Summary:
A first-of-its-kind study has found that people entering treatment for heroin use most often called themselves 'addicts,' but preferred that others called them 'people who use drugs.'

A first-ever study to ask people who use heroin what they want to be called finds "people first" language often best, and language suggesting misuse or dependence generally worst.
In the ongoing opioid crisis, many researchers and clinicians now use "person first" terms such as "person with substance use disorder" instead of loaded labels like "addict," but little research has focused on the language preferences of this population. Now, a first-of-its-kind study by researchers from the Boston University School of Public Health (BUSPH) and the University of Massachusetts Medical School (UMMS), published in the journal Addiction, has found that people entering treatment for heroin use most often called themselves "addicts," but preferred that others called them "people who use drugs."
"In the end, researchers, clinicians, and families should not automatically use the same terms that people who use heroin call themselves, but instead ask about preferences," says senior study author Dr. Michael Stein, professor and chair of health law, policy & management at BUSPH. "Of course, most people just want to be called by their name."
The researchers surveyed 263 people undergoing in-patient evaluation and withdrawal symptom management at the Stanley Street Treatment and Resources program (SSTAR) in Fall River, Massachusetts. The terms that the most respondents never wanted to be called were "heroin misuser" and "heroin-dependent," and most did not like slang terms such as "junkie."
"Persons who use heroin often complain about interactions with healthcare providers, due at least in part to the unfortunate language providers use -- which is taken, sometimes rightly, as a sign of disrespect," Stein says. "Such antagonism can't be good for clinical outcomes."

TO CONTINUE READING: https://www.sciencedaily.com/releases/2019/07/190716151355.htm?fbclid=IwAR1ElpgAzfbLLWlbfN3I_ZPVbS-RdHlF__YPvZpbuIsNbTgCV01qfrZ1Cdk

By John Wiesman and Carl Schmid
Special to The Times 

​The consequences of the hepatitis C virus can be devastating if people are unable to access treatment. Left untreated, they can experience irreversible liver damage, cirrhosis, liver cancer and even death. Thankfully, investments in pharmaceutical research have led to new oral medications that allows individuals to be cured in as little as eight weeks, with few to no side effects. These medications have become more affordable as the price continues to drop due to competition.
Here in Washington, we know all too well the impact of hepatitis C. From 2010 to 2016, the number of reports of new infections (acute cases) rose by more than 280% statewide, with most occurring among young persons who inject drugs. Nationwide, cases of hepatitis rose by 350% during that same time period. These are upsetting statistics, but we know how to change this trend.
The World Health Organization and the National Academies of Science, Engineering, and Medicine have released reports showing that eliminating viral hepatitis as a public-health threat is possible both globally and nationally, and not only saves lives, but also saves money in the long run. However, elimination requires concerted efforts by states and communities, and an investment in resources. The U.S. has recently demonstrated this with the federal effort of “Ending the HIV Epidemic: A Plan for America,” which hopes to reduce new HIV infections by 90% in 10 years. We need a similar initiative to eliminate hepatitis C.
In some state Medicaid programs, access to the medications that cure hepatitis C has been restricted to only those individuals who have progressed to more advanced liver disease. Not only is this against Medicaid policy, it causes undue harm. Treatment restrictions are a significant barrier to eliminating the virus nationally.
Washington state has heeded the call to eliminate hepatitis and is taking action. Last year, Gov. Jay Inslee called on the state to eliminate hepatitis C by 2030, following the same goal the World Health Organization set in 2016. A plan titled “Hep C Free Washington” seeks to eliminate hepatitis C in Washington state by 2030 and will be released in the next few weeks. This July, the state also took an enormous step in these efforts when it finalized a new contract with drug manufacturer AbbVie to bring resources to the state to eliminate the virus. Under the agreement, the state has a guaranteed net unit price up to a certain treatment threshold after which it pays a nominal price for an unlimited supply of hepatitis C treatments. A similar agreement was recently reached between Louisiana and a subsidiary of the drug manufacturer Gilead.
TO CONTINUE READING: https://www.seattletimes.com/opinion/a-bold-new-approach-to-eliminating-hepatitis-c-as-a-public-health-threat/

A & U
Americas Aids Magazine
June 24, 2019

Money Talks
The hepatitis community wants more federal dollars; hep a cases rising fast
by Larry Buhl

Here’s the good news on federal funding for hepatitis research and treatment. In its 2020 budget proposal, the Trump Administration has requested a $53 million increase, from the current level of $5 million, to fund the infectious disease and opioids programs at the U.S. Centers for Disease Control and Prevention (CDC). The bad news is the budget for the response to all forms of hepatitis, including hepatitis A, B and C, is flat, at $39 million. That’s not nearly enough, according to Frank Hood, Senior Policy Associate at The AIDS Institute. He’s calling on Congress to allocate the additional $95 million requested by the hepatitis community for CDC’s viral hepatitis programs, and says that the CDC needs massive funding to expand its work in prevention, education, and testing for individuals at risk of hepatitis C, surveillance of outbreaks, and linkage to care for those who need it.
“President Trump has kept the same level of funding [for hepatitis] flat for three years,” Hood told A&U. “Any budget increases were due to Congress. And we hope that with a Democratic House, that budget item will be increased.”
Not only are cases of hepatitis C rising throughout the country, new populations are being impacted. In 2016, there were 41,700 new cases of hepatitis C, a twenty-two percent increase from the prior year. Between 2010 and 2016, there was a 350-percent increase in new infections. Unlike previous outbreaks that affected baby boomers, the biggest increase in infections today are among people under forty years old with more than seventy percent of cases the result of injection drug use.
“One reason we need increased funding is linkage to care, and this funding can be used for harm reduction,” Hood said.
On harm reduction there has been a shift in recent years, Hood added. “To our surprise, there is brief but well-worded support for syringe programs. There isn’t a fear of backlash around this and other harm reduction programs, but we want to make sure they get up and running, and again, we need resources for them.”
TO CONTINUE READING:   https://aumag.org/2019/06/24/hep-community-we-need-more-federal-dollars/

NATURE
NEWS 
28 JUNE 2019Researchers around the country are scrambling to understand these outbreaks, but lack solid data on case numbers.
Sara Reardon

Opioid addiction kills tens of thousands of people every year in the United States and the trend shows no signs of slowing. Now, public-health officials are worried about a surge in bacterial and viral infections linked to opioid abuse that threatens to compound the crisis.
This surge includes in unprecedented rise in bacterial infections — including those caused by Staphylococcus aureus, a bacterium that’s frequently resistant to antibiotics — and a spike in new cases of HIV and hepatitis associated with injecting opioids that threatens to undo decades of progress in corralling these diseases.
Research groups around the country are working to understand, identify and treat these outbreaks. But the lack of solid data on the number of new cases, and where they’ll crop up next, as well as stigma associated with drug use that can prevent people with infections from seeking early treatment, is hindering efforts.
“This is like HIV all over again,” says Judith Feinberg, an infectious-disease physician at West Virginia University in Morgantown, comparing the current crisis to the HIV epidemic that dominated US public health efforts in the 1980-90s. “People are stigmatized; they don’t feel they deserve to live. They hear people say it’s a lifestyle choice.”
Over the past 20 years, the use of opioids, including prescription pain medications, heroin and synthetic drugs such as fentanyl, has skyrocketed in the United States. As of 2017, there were roughly 15 opioid-overdose-related deaths per 100,000 people in the country, compared with 3 per 100,000 in 1999, according to estimates from the US Centers for Disease Control and Prevention (CDC).
TO CONTINUE STORY: https://www.nature.com/articles/d41586-019-02019-3

By Dan Levin
May 31st 2019, New York Times

Call them Generation O, the children growing up in families trapped in a relentless grip of addiction, rehab and prison.
PORTSMOUTH, Ohio — Layla Kegg’s mother, back home after three weeks who knows where, says she’s done with heroin, ready for rehab and wants to be part of her daughter’s life. But Layla has heard all of this before and doesn’t believe a single word.
Layla’s trust was broken long ago, after years of watching her mother cycle in and out of addiction and rehab. And now this latest discovery: “I found a needle in your purse the other day,” says Layla, seated at her grandmother’s kitchen table, her arms crossed. “And Mamaw found two more in the dryer.”
A pause, and then a fitful tumble of excuses from her mom: she doesn’t know why the needles were there; they were only syringes, actually, and not needles; she was keeping them for a friend.
Layla, 17, rolls her eyes and sighs.
“It’s almost like you want me to be using,” her mother pleads tearfully, in a voice children more often use with their parents. “Everything I do is never going to be good enough, so what’s the point.”

TO CONTINUE TO READ:https://www.nytimes.com/2019/05/31/us/opioid-children-addiction.html