MediaplanetUSA’s “Hepatitis & Liver” campaign

We recently participated in MediaplanetUSA’s “Hepatitis & Liver” campaign where industry professionals and associations came together to draw attention to the importance of liver health, while highlighting hepatitis awareness, testing education, and treatment to erase the stigma and judgments attached to the disease. The campaign was distributed within the centerfold of USA Today on September 23, 2015 and is published on a Mediaplanet original site. 

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Should We Be Rationing Hepatitis Drugs? Obama Pressured to End Restrictions

Amid mounting evidence that federal and state authorities are rationing costly new wonder drugs for treating people with the potentially lethal hepatitis C virus, public health experts have begun pressing the White House to intervene to expand the use of Sovaldi and other new medications.

An estimated 3.2 million adults are chronically infected with hepatitis C while an estimated 20,000 people die from the serious liver ailment every year, including many military veterans.

The New York Times reported on Tuesday that a group of experts from the Public Health Service and President Obama’s Advisory Council on H.I.V./AIDS wrote a letter to the White House complaining that restrictions on the use of these drugs by many states are inconsistent with prudent and sound medical practices. Read more....

A Time to Cure: The Growing Case for New Hepatitis C Treatments

One out of every 100 Americans is living with a deadly and communicable virus, yet most can't access the cure which will save their lives and halt the disease's lethal trajectory.

Hepatitis C now kills more Americans each year than HIV/AIDS and is 10 times more infectious. It has become a leading cause of liver failure and liver cancer -- the fastest-rising cause of all cancer-related deaths. For too long this blood-borne virus has silently ravaged communities across the country, often going unnoticed and untreated until it was too late. Until 2013, the only treatments for hepatitis C were painful and effective only half the time, leaving many patients with nowhere to turn, despite their diagnosis.

But now the tide is turning. Multiple treatments for hepatitis C currently offer cure rates of near 100 percent with minimal side effects. Now some of the biggest obstacles facing hepatitis C patients are health insurers.

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Weekly Special Topic: Advocates & Activists Needed!

Advocates & Activists Needed!

World Hepatitis Day is approaching - What Can YOU do to help raise the level of awareness of viral hepatitis:

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Hepatitis Testing Day is Tuesday, May 19th: More Than 150,000 People in New Jersey Are Living with Hepatitis C

• Advocates Frustrated with Slow Progress of Life-Saving Bill 
• Coalition Calls for Assembly to Pass Hepatitis C Testing Legislation 

Trenton—To commemorate Hepatitis Testing Day, the Hepatitis C Action Campaign coalition and patient advocates are urging the General Assembly to approve and Governor Christie to sign Senate Bill 876 / Assembly Bill 2555, which would require hospitals and health care professionals to offer hepatitis C testing to people born between 1945 and 1965. Three quarters of individuals with hepatitis C are in this age group and the vast majority are unaware that they are infected with the virus. The legislation would also authorize certain laboratories to perform rapid hepatitis C testing. Senate Bill 876 was approved by the full Senate early this year and its companion, Assembly Bill 2555, is awaiting consideration by the Assembly Health and Senior Services Committee.

Hepatitis C is a contagious liver disease spread when blood from a person infected with the Hepatitis C virus enters the body of someone who is not infected to the blood of an infected person. If left untreated, hepatitis C can cause extensive liver damage, cirrhosis, liver cancer, and ultimately death. Because it has no symptoms people often go for decades without discovering they are infected, allowing the virus to progress untreated and with devastating consequences. Early diagnosis can improve health outcomes and facilitate access to curative treatments.

“This legislation is urgently needed,” said Roseanne Scotti, New Jersey State Director for the Drug Policy Alliance. “Hepatitis C is a silent killer that must be stopped. Because people often don’t show symptoms for many years, most people are unaware they are infected. Expanded testing is needed so people know their status and can act to get care and treatment.”

The Centers for Disease Control and Prevention (CDC) recommends that anyone born between 1945 and 1965 get tested for hepatitis C. African Americans and veterans also have substantially higher rates of hepatitis C infection. More people now die from hepatitis C than die from HIV/AIDS in the United States. Without concerted action, the CDC predicts that deaths from hepatitis C will double or even triple in the next 20 years. Widespread testing will enable those infected to receive life-saving treatment and prevent transmission to others.

“By incorporating Hep C testing into regular medical care we diminish the stigma of the disease, educate people about their status and prevent the transmission to others. Most importantly, we connect people to treatment before this terrible disease wreaks havoc on their body,” said Senator Joseph F. Vitale (D-Middlesex), Chairman Senate Health, Human Services and Senior Citizens Committee. “I am hopeful that my colleagues in the Assembly take this bill up before the Legislature goes on summer recess.”The month of May is designated as Hepatitis Awareness Month in the United States and May 19th is Hepatitis Testing Day. During May, the CDC and groups like the American Liver Foundation work to raise awareness surrounding this silent killer and encourage those most at risk to get tested.

Lisa Gallipoli, Executive Director of the Greater New York Division of the American Liver Foundation, which serves North Jersey, said “When it comes to Hepatitis C it is simple – Treat – Test- Cure! It has never been more important to TEST – find out who has Hep C; TREAT – get those with Hep C on treatment; CURE – Hep C is CURABLE for over 90% of the individuals who receive treatment. This legislation would do just that!”

Dr. Andrew N. de la Torre MD, FACS, a liver transplant surgeon and Director of the Liver, Pancreas & Biliary Surgery at St. Joseph’s Regional Medical Center, said “I cannot think of a justifiable reason not to pass this bill. It would be a huge opportunity to save thousands of lives that are lost to liver failure and liver cancer. Even though the cost to treat hepatitis C seems expensive, it is far more expensive and painful to treat and watch patients die from liver failure or advanced liver cancer. Even after receiving a liver transplant, patients require treatment for Hep C; so why not treat them earlier and possibly avoid the need for and costs of a liver transplant?”

Senate Bill 876 is sponsored by Senator Joe Vitale (D-Middlesex), Senator Richard Codey (D-Essex and Morris) and Senator Fred Madden (D-Camden and Gloucester). The Assembly companion, A2555, is sponsored by Assemblyman Reed Gusciora (D-Hunterdon and Mercer).

The Hepatitis C Action Campaign and Senate Bill 876 / Assembly Bill 2555 are supported by a coalition of patients, physicians, and public health, nonprofit, and advocacy organizations, including the New Jersey office of the Drug Policy Alliance, the Hepatitis C Association, the Greater New York and Mid-Atlantic Divisions of the American Liver Foundation, the South Jersey AIDS Alliance, the North Jersey Community Research Initiative (NJCRI), Paterson Counseling Center, Camden AHEC, Hyacinth AIDS Foundation, Well of Hope Community Development Corporation, Inc., Comprehensive Liver Care of New Jersey, Iris House, Buddies of New Jersey, Inc., PROCEED, Inc., African American Office of Gay Concerns, Hepatitis Foundation International, Vietnam Veterans of America, The Wave Set, National Black Leadership Commission on AIDS, Our Lady of Lourdes Medical Center (Camden), Atlantic Gastroenterology Associates, and Trinitas Regional Medical Center – Early Intervention Program.

Contact:

Tony Newman 646-335-5384
Roseanne Scotti (609) 610-8243

Source:  http://www.drugpolicy.org/news/2015/05/hepatitis-testing-day-tuesday-may-19th-more-150000-people-new-jersey-are-living-hepatit

HealthWise: Hepatitis C Awareness—A Little Effort Makes a Big Difference, by Lucinda K. Porter, RN

Even if you know these facts about hepatitis C, please keep reading:

• More people in the U.S. die every year from hepatitis C than die from HIV.
• The hepatitis C death rate is increasing annually.
• The number of new hepatitis C infections is increasing at alarming rates, particularly among teens and young adults.
• Despite the increase in new hepatitis C virus (HCV) infections, there has been a decrease in the prevalence of HCV in the U.S. because so many are dying.
• Hepatitis C infection is preventable and curable. However, various obstacles stand in the way, two of which are:
• The majority of those with HCV don’t know they have it; you can’t treat HCV without a diagnosis, and
• Across the US, insurance companies and state Medicaid programs are denying treatment to many people. So, although HCV is curable and preventable we are miles away from preventing it and curing everyone.  

This month’s article suggests ways you can make a difference and change the strong hold that HCV has on our communities. May is Hepatitis Awareness Month and May 19 is Hepatitis Testing Day, both presenting opportunities for getting involved. We have the Centers for Disease Control and Prevention (CDC) to thank for initiating these events, but ultimately the success of these events depends on you. It is time for all of us to help.

If you think you don’t have the time for this, take note. The inspiration for this article is because Carleen McGuffey, a woman who had serious complications from HCV asked, “How can I, an average lay person with a heart to serve, put my time, money and effort behind stopping hep C? Where should I focus? How can we, the little people, make the most impact?”  Carleen has six children, is on treatment and is incredibly active in the HCV community. If she can find time to make a difference, anyone can.

If everyone did a little something to raise hep C awareness, think of the effect it would have. Just like the Grand Canyon was made drop by drop, HCV can be eradicated person by person. No act is too small; just act.   

So, Carleen, how can you serve?  How can you make the most impact?  Begin by searching your heart, and see where you are called. What stirs you up? What gives you joy? What makes you rage? What makes you want to make a difference? Is there a particular issue that really gets under your skin or makes you weep? It differs for each of us. Some of us focus on prevention; for some it is political advocacy or support groups. The list is endless. A huge part of my work focuses on helping patients through treatment, and helping people stay well with hep C. That is my passion, along with getting people tested.

If you are looking for ways to act, the CDC’s Know More Hepatitis campaign is a good place to start. It offers an extensive list of ways to raise awareness. Here are some things everyone can do and that don’t take a lot of time or money:

• Ask every baby boomer you meet to get tested.   
• Tell your story and put a face on hep C. This is a powerful way to defy stigma.
• Join an online or in-person support group. When we care for our wounded, we keep them in the fight for their lives.
• A low effort way to send a message is the signature line of your email, such as: “One in 30 Americans born between 1945 and 1965 is living with hepatitis C. Get tested, get treated, get cured!” I use a graphic from the CDC’s website.
• Check with your state’s CDC Viral Hepatitis Prevention Coordinator on programs or events in your state.
• Sign up for action alerts so you know what is going on. Make the occasional call, send a fax or email to your elected officials—local, state or federal. Silence is apathy. Let them know you care about hepatitis C, and that you expect them to care too. An office visit or speaking at public hearings has an even bigger impact. You can sign up for action alerts from NVHR and Caring Ambassadors.
• Post messages to Facebook, Instagram, Pinterest or Twitter reminding the world about hepatitis C.
• Write a letter to the editor of your local paper about the need to reach the estimated 75 percent of people who have hepatitis C but who are not yet diagnosed.
• Send money to your favorite viral hepatitis organization. No amount is too small. If everyone with HCV donated ten dollars, that would amount to nearly $30 million dollars.
• Ask your local radio station to run a public service announcement (PSA). The CDC provides some scripts.
• Send e-cards to friends, family, and colleagues who are baby boomers, encouraging them to get tested for hepatitis C.
• Send media alerts to local TV, radio, cable or newspapers to publicize noteworthy events, such as testing days.
• Ask your local governing body to issue a proclamation recognizing May as Hepatitis Awareness Month and/or May 19 as Hepatitis Testing Day. The CDC provides information on how to do this. After you get the proclamation, send a press release about it to your local paper.
• Ask organizations that have community calendars to promote local testing or awareness events. Check the NVHR member list to see what groups are active in your state.
• Learn more about HCV on the HCV Advocate’s website. Well-informed is well-armed. If you really want to expand your knowledge, look for trainings in your area provided by the Hepatitis C Support Project.
• Lastly, my favorite is a game I call, “Six -degrees of hepatitis C.” It’s based on the concept of six degrees of separation, which is the theory that a chain of “a friend of a friend” statements can be made to connect any two people in a maximum of six steps. Instead, when I meet someone for the first time, I try to work hepatitis C in to the conversation in six sentences or less. It is surprisingly easy, and fun to do.

If you are tempted to pass on the opportunity to raise awareness, keep in mind that in 2013, approximately 53 people died every day from hepatitis C. That is more than two an hour. With an increasing death rate, what are you waiting for? We have lives to save.  

Lucinda K. Porter, RN, is a long-time contributor to the HCV Advocate and author of Free from Hepatitis C and Hepatitis C One Step at a Time. Her blog is http://www.lucindaporterrn.com/


http://hcvadvocate.org/news/newsLetter/2015/advocate0515.html#1

For Our Portuguese HCV Advocates : Entrevista: Francisco Martucci

Podcast: Interview with Francisco Martucci, President of "C HAVE TO KNOW HAVE TO HEAL C."

A campanha de combate a hepatite C realizada pela ONG "C tem que saber C tem que curar", recebeu mais de 3,7 milhões de "selfies" com pessoas tirando fotografias mostrando ou sinalizando com as mãos a letra "C".

Em entrevista à Rádio ONU, o presidente da ONG, Francisco Martucci, falou sobre os objetivos da iniciativa.

Ele disse que em primeiro lugar, a meta é divulgar a hepatite C através das redes sociais.
Martucci quer alertar a população e a sociedade brasileira e também mundial sobre o impacto social que a hepatite C causa no Brasil, com 12 óbitos por dia e 4 milhões de portadores. No mundo, são 500 mil mortes ao ano e 170 milhões de portadores.

O presidente da ONG falou também sobre a possibilidade de se resgatar a chance de cura de portadores que tentaram tratamentos com outros medicamentos e não conseguiram.
Ele falou também sobre como usar esse apoio popular para pressionar pela liberação de novos remédios.

Martucci explicou que o tempo desse novo tratamento é reduzido, passando de um ano, como acontece atualmente, para apenas três meses e sem efeitos colaterais.

Ele afirmou que esses novos remédios são importantes, principalmente, para os portadores de hepatite C que não conseguiram se curar em tratamentos anteriores.

Source:  http://www.unmultimedia.org/radio/portuguese/2015/04/entrevista-francisco-martucci-2/#.VR7JVuG2WQd

Hepatitis on the Hill —Lucinda K. Porter, RN

I have been doing hepatitis C advocacy for nearly 18 years. My hope and fury have never been greater. We can cure hepatitis C, but people are having a hard time getting the medications. The Centers for Disease Control and Prevention (CDC) recommends HCV testing for baby boomers, but we aren’t doing it. This is the sort of stuff that drives me wild.

HCV Advocate Editor-in-Chief Alan Franciscus asked me if I would attend “Hepatitis on the Hill,” held in Washington, DC on March 9 and 10. After years of complaining about the government’s anemic response to the hepatitis C epidemic, I automatically said “yes.”

Approximately 75 hepatitis advocates met in Washington, DC, for Hepatitis on the Hill. Hosted by the Hepatitis Appropriations Partnership, Hep B United and the National Viral Hepatitis Roundtable, and supported by the National Alliance of State and Territorial AIDS Directors, the event focused on increasing the federal response to the viral hepatitis epidemic in the United States.

Hepatitis C virus (HCV) is killing more Americans every year than HIV is, but dollar for dollar, hep C funding is pennies compared to HIV’s. State health departments’ Viral Hepatitis Prevention Coordinator programs receive less than $1 in federal funding for every person living with viral hepatitis. In the meantime, hep C infection and death rates continue to rise. Immunizing all children against hepatitis B virus (HBV) also continues to be a problem.

Advocates from hep B and C groups attended Hepatitis on the Hill. The first day focused on core issues, particularly why now is the time for this level of advocacy. President Obama’s budgetary request for viral hepatitis programs is double that of previous budgets, and the advocates learned how to ask for support from their senators and congressional representatives.

The next day, advocates visited the offices of their senators and representatives on Capitol Hill, educating their staff on the experiences of people living with hep B and C. At each office, the advocates requested the following:

• Signature of House/Senate letter in support of the president’s proposed FY2016 budget to increase funding of the CDC’s Division of Viral Hepatitis to $62.8 million, and include the request in the member appropriations submissions
• Support the repeal of the federal funding ban on syringe services programs
• That their elected official would join the Congressional Hepatitis Caucus

Senator Bill Cassidy (R-LA), MD, spoke during lunch on Capitol Hill. Cassidy is a hepatologist, committed to issues surrounding viral hepatitis. Ronald Valdiserri, MD (deputy assistant secretary for health, infectious diseases, at the Department of Health and Human Services), and John Ward, MD (director of the CDC’s division of viral hepatitis), also spoke at Hepatitis on the Hill. Ward emphasized the urgent nature of acting now, saying we can prevent approximately 300,000 deaths.

Presentations by Reps. Brett Guthrie (R-KY), Mike Honda (D-CA), Charlie Dent (R-PA) and Hank Johnson (D-GA) were televised at the event. These congressional representatives introduced the Viral Hepatitis Testing Act of 2015 (HR 1101). In addition to being an ally in Congress, Johnson has been public about his hepatitis C status, treatment and eventual cure.

For information about how to support efforts to improve viral hepatitis funding and services, visit Lucinda Porter’s blog (blogs.hepmag.com/lucindakporter). The National Viral Hepatitis Roundtable and Caring Ambassadors Hepatitis C provide ongoing coverage of the latest news and advocacy alerts related to viral hepatitis in the U.S.

Portions of this article by Lucinda K. Porter first appeared in Hep Magazine, March 16, 2015.

http://hcvadvocate.org/news/newsLetter/2015/advocate0415.html#1

Advocates Urge Easier Access To Expensive Drug For Medicaid Patients

Advocates for those living with Hepatitis C are urging the state Department of Social Services to ease new criteria patients must meet in order to have an expensive medication covered by Medicaid.

DSS has issued a bulletin to medical care providers, notifying them that patients with Hepatitis C who are enrolled in HUSKY A, HUSKY C or HUSKY D — parts of the state’s Medicaid program — must have “prior authorization” in order for prescriptions for the medication Sovaldi to be covered.

Prior authorization typically is required by insurers when they want to make sure certain prescription drugs are appropriately used. In essence, it requires enrollees to meet a higher threshold of criteria before insurers will agree to cover the medication’s expense.

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Australia: Calls for clean needles in West Australian prisons as one in ten inmates test positive for Hepatitis C

BRENDAN TREMBATH: Tests reveal that one in ten inmates in the Western Australia prison system have the infectious disease Hepatitis C.

But a support group says efforts to reduce its prevalence are doomed to fail unless prisoners are given access to clean needles.

Hepatitis WA has renewed calls for the State Government to introduce a needle exchange program.

Read more and listen to the podcast here....

Langford: Doctors prescribe, not insurance companies

"Our legislators have the opportunity this year to support legislation designed to address problems with excessive use of prior authorization and step therapy, that too often let patients in Florida slip through the cracks with no coverage for appropriate therapies."

More than 15 years ago, I was diagnosed with Hepatitis C. While the disease has created a number of challenges, one particularly frustrating and troublesome problem has been obtaining coverage for medications that my physicians have prescribed because I've been forced into “fail first,” or “step therapy,” protocols.

Fail first protocols are management processes used by health plans that require a patient to try the least expensive treatment to address a problem, despite what his or her physician recommends. Only after trying and failing on the least expensive option, and possibly additional treatments, can a patient receive coverage for the medication the physician originally prescribed.

In 1998, my physician advised me to try a recently approved Hepatitis C treatment, Ribavirin, meant to be taken in addition to Interferon. My insurance company required me to fail on Interferon by itself before I could get the superior combination of the two as prescribed by my doctor.

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Access to Hepatitis C Therapy Listening Session with Community Stakeholders

Last month, the Department of Health and Human Services (HHS) convened a listening session on the important issue of access to curative treatment for hepatitis C virus infection. While the advent of more effective, second-generation direct-acting antivirals for the treatment of hepatitis C represents a tremendous scientific accomplishment and a potential public health triumph, community leaders and other stakeholders have raised serious concerns about barriers to treatment access. Many of these concerns had been expressed in a community sign-on letter sent to HHS Secretary Sylvia Burwell in early September 2014.

The listening session was hosted by the Office of the Assistant Secretary for Health and led by Dr. Wanda Jones, Principal Deputy Assistant Secretary for Health. The Acting Assistant Secretary for Health, Dr. Karen DeSalvo, was able to attend the initial portion of the meeting, which took place at the Humphrey Building on December 9, 2014. Twelve stakeholders representing healthcare providers, advocates, persons infected with HCV, representatives of professional organizations, and national leaders from a variety of disciplines joined federal leaders from across HHS to share information about HCV treatment access barriers and their impact on people living with chronic viral hepatitis.

The stakeholders who attended the meeting were especially concerned about restrictions on access to the new HCV treatments put in place by payers, which, in the stakeholders’ opinion, do not appear to be medically justified. Listed below are three examples of restrictions, shared by the community stakeholders:

- See more at: http://blog.aids.gov/2015/01/access-to-hepatitis-c-therapy-listening-session-with-community-stakeholders.html#sthash.qDA29lEs.dpuf

Resolved For 2015: No More Hepatitis C

As we enter 2015, nonprofit organizations that specialize in health advocacy start to compile lists of ambitious resolutions for the New Year. They pledge to spread the word more widely than ever about a particular cause, to exert influence over lawmakers, and to enlist more scientists, advocates and donors in the latest public health crusade.

And I, as executive director of just such a nonprofit, could do the same. I could give you a rundown on our own resolutions to end the infectious disease known as hepatitis C.

Instead, I'm going to be really presumptuous. I'm going to take the liberty of making resolutions on behalf of others. I'll spell out the vows that I believe all the key stakeholders in the fight against hepatitis C should follow in the year ahead.

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