MEDIA PLANET Future of Personal HealthFuture of Personal Healthhttp://www.futureofpersonalhealth.com/education-and-research/the-past-present-and-future-of-hepatitis-c    USA TODAY

EDUCATION AND RESEARCH An estimated 3.2 million Americans are living with hepatitis C, a serious and often fatal liver disease—and most of them don’t know they are infected.
Ryan Clary
LIGHT OF HOPE: There are highly effective treatments that cure nearly 100 percent of hepatitis C cases with minimal side effects.Hepatitis C is the leading cause of liver cancer and liver transplants in the United States. People born from 1945 through 1965 are 5 times more likely to have hepatitis C than other adults.

Hepatitis C disproportionately impacts many communities, including African Americans, Latinos, Native Americans, veterans and people who inject drugs. Known as the “silent killer” because it can progress insidiously without symptoms, hepatitis C causes more than 15,000 deaths annually in the United States.

New developmentsThe good news is that there has never been a more hopeful time in the fight against hepatitis C. We now have the tools necessary to eliminate hepatitis C in the United States. Highly effective treatments are available that cure nearly 100 percent of hepatitis C cases with minimal side effects.

"We need bold leadership from our nation’s leaders to address these challenges if we are to succeed in the goal of eliminating hepatitis C."

Health experts have united around the call for baby boomers and others at risk to be tested for hepatitis C, resulting in many Americans having easier access to screening. Medicare recently announced that hepatitis C testing will be covered as a no-cost preventive service in primary care.

The Centers for Disease Control and Prevention (CDC) has developed a comprehensive educational campaign called “Know More Hepatitis” that urges baby boomers to be tested. Meanwhile, the federal government’s Viral Hepatitis Action Plan has brought together representatives from several agencies and departments to expand hepatitis C prevention, testing, care and treatment services.

ObstaclesHowever, there continues to be significant challenges to ending the hepatitis C epidemic in the United States. The stigma associated with hepatitis C and drug use hampers efforts to spread awareness and encourage those at risk to be tested. Many insurers are denying hepatitis C treatment to people without advanced disease and those with a history of substance abuse, placing lives at risk and missing an opportunity to cure everyone living with the disease.

There has been an alarming increase in recent hepatitis C infections among young people who are injecting opioids. We need bold leadership from our nation’s leaders to address these challenges if we are to succeed in the goal of eliminating hepatitis C.

I strongly encourage you to take action in the fight against hepatitis C. If you were born from 1945 through 1965, or if you have any of the other risk factors, ask your doctor for a hepatitis C test. Encourage your friends and family to do the same. Ask your elected representatives to support increased funding and to cosponsor the Viral Hepatitis Testing Act, legislation that would expand testing services. Together, we can end the silence around hepatitis C and save lives.


RYAN CLARY, editorial@mediaplanet.comExecutive Director, National Viral Hepatitis Roundtable

by Lucinda Porter,R.N. Posted: 09/17/2015 5:55 pm EDT Updated: 09/17/2015 5:59 pm EDT THE BLOG

Since 2007, more people have died every year from hepatitis C than from HIV. Fortunately, the latest hepatitis C medications can cure nearly everyone in a relatively quick, easy fashion. So, if it is so easy to cure hepatitis C, why haven't we?

Ostensibly, it is because of the cost. At $1125 a pill for Gilead Sciences' drug Harvoni, a 12-week course of hepatitis C treatment would amount to $94,500. Trying to manage these costs, many state Medicaid programs and insurance companies have severely restricted access to treatment. You save money if you deny treatment to people, and dead people cost nothing.

This means that although we can cure hepatitis C, we aren't. Under many insurance plans, patients have to prove that they have cirrhosis. In short, treatment is approved when liver damage has progressed to its worst stage. It is like refusing to pay for diabetes drugs until the patient is blind or minus a few toes.

In addition to proof of cirrhosis, insurers create hurdles that require mountains of paperwork and patience. Some require documentation that patients have abstained from alcohol and drugs for six months to a year prior to treatment. If substance use is recent, patients must be actively participating in treatment for the disorder. This practice is not required for cancer or diabetes patients. Imagine if your doctor said to you, "We can cure your cancer, but your insurance won't pay for treatment because marijuana showed up on your tox screen."

There are other hurdles. For instance, Illinois's Medicaid plan has 17 bulleted requirements, including a "commitment to care" document to be signed by the patient. Alaska's Medicaid program has invented its own hurdle that is not medically approved. The hep C drugs will not be renewed if a patient's response doesn't meet these arbitrary standards, despite the fact that the HCV treatment guidelines set by the American Association for the Study of Liver Diseases and the Infectious Diseases Society of America do not recommend stopping treatment for this reason. But, insurers are not following these evidence-based guidelines, since if they did, they'd have to treat just about every hepatitis C patient, which is what the guidelines recommend.

The fear is that if everyone were treated, then the cost would be astronomical. However, the cost of treatment is not really the issue. What we are really talking about when we talk about hep C is prejudice. Hepatitis C's association with drug use makes it easy to discriminate against those who have this disease. Health plans can get away with their arbitrary restrictions, because the public isn't particularly sympathetic to hepatitis C patients. Ask Jane or John Q. Public how people get hep C, and I bet they say it's from drug use, a problem which is highly stigmatized.

I am familiar with the stigma attached to this virus. Although now cured, I was hep C-positive for 25 years. I was open about my status, and most people assumed that I got hepatitis C through my work as a nurse, thus sparing me from the harsh criticism drug users often get. However, occasionally I endured cruel judgments from critics who assumed that I was an injection drug user, and thus I deserved hepatitis C.

It is common to hear fellow hep C patients complain about being treated like injection drug users. The tragedy is not that hep C-positive people are lumped together with drug users. The tragedy is that it is socially acceptable to condemn and ostracize drug users. Private and public insurers participate in this social ostracism by restricting access to treatment, hurting the poor and minorities the most with these unjust practices.

Treatment restrictions ignore the fact that those with hepatitis C are at increased risk of premature death from multiple medical problems, including, lymphoma, cerebrovascular conditions, cancer, and kidney diseases. On average, hep C patientsdie around 15 years earlier than those who aren't infected. Hepatitis C is a risk factor for liver cancer, which has the second highest mortality rate, just behind pancreatic.

How do we explain these restrictive policies to a young woman with minimal liver damage, but wants to be free of hep C prior to starting a family? Do we tell her, "Take a chance, maybe your baby won't get hepatitis C. We can always treat you and your baby when you each develop cirrhosis."

Access to hepatitis C treatment affects everyone. If we ration health care for this disease, it is just a matter of time before we ration coverage for other diseases. Paraphrasing Martin Niemöller's famous words, "First, they denied treatment for hepatitis C, and I did not speak out because I did not have hepatitis C." How many more people have to be infected or die from hep C before we speak up? Or, do we have to wait until we restrict medical coverage for all diseases, and perhaps lose a few toes before we protest.


http://www.huffingtonpost.com/lucinda-porter/what-we-talk-about-when-we-talk-about-hepatitis-c_b_7984878.html

Follow Lucinda Porter on Twitter: www.twitter.com/LucindaPorterRN

The World Hepatitis Alliance Summit has ended, countries with different cultures face the same opponent. People around the world working according to their particular circumstances, some, under a clear strategy, others day by day, but all familiar with the challenges and difficulties of others, because they have lived it and therefore recognized in the other his equal.

 

For those involved in this problem it is not only a full-time job, it's a personal matter that insults the pervasive lack of resources and political commitment of many decision makers to prevent prompt and effective medical care. Recurring themes by the voracious appetite for profits of pharmaceutical companies.

 

But the camaraderie is a link between the participants and show that not all storm clouds darken the sky, there are rays of hope. People who work at government level show their commitment as human beings who seek to help others, their names very rarely recognized in the media but through them their governments have decided to take action:

 

Brazil is the case closer to us in America continent but Egypt, Georgia, Scotland also joined, among others, who have made successful negotiations with manufacturers of drugs for hepatitis C that will provide access to an important segment treatments of their populations affected by the "silent enemy".

 

special mention is that of Egypt, not only achieved a fair price also have a clear strategy: to treat its 10 million people infected with hepatitis C by 2025. From October 2014 to August 2015 they gave 130,000 treatments and have been getting the cure for 85%. Next year it aims to provide 350,000 treatments.

 

Another case in Scotland. They recognized early this century the serious public health from hepatitis and established a strategy to be developed in several phases, which began in 2006 and continues today.

 

That is to have strategic vision, demonstrating the importance of planning ahead and with short- and medium term. They Showed to other governments of the world that the time of analysis and planning should be just 10 years ago, not now that the bomb has exploded and which is now urgent action.

 

The remaining countries continue doing the best they can despite the Olympic lack of commitment by States and their decision makers.

 

The battle under such circumstances is uneven, to say politely, governments remain entrenched despite seeing such a large segment of its population is annihilated under the pretext of not having enough resources.

 

And civil society that it is taking the lead that few governments are hesitant to exercise.

 

The United we stand and united only patients and their families, including those for actual discrimination, stigmatization and lose their job they did not want to talk about fear. Only this should help exert enough pressure on our governments to act promptly to stop the spread of the disease and reduce the number of deaths from this war without quarter.

 

Thanks to the World Hepatitis Alliance, the Ministry of Health of Scotland, the governments of Brazil, Egypt and Georgia, to the people who work in government sided with the patients and also, admittedly, the many human beings who They are working in pharmaceutical companies and genuinely share our goals ...

 

But especially you, the patient, family member, friend that you are involved and show your face to seek a better quality of life for those affected by hepatitis C and that without fear you face with the weapon of value in such adverse circumstances. And to all the parents, brothers, children, wives, husbands who have died in this unjust war, thank you for your courage and tenacity samples.

 

Thanks and keep fighting!

 

Antonio Oñate

Fundacion Hepatos Aion

Mexico

The World Hepatitis Summit kicks off in Scotland today. Jeffrey V. Lazarus, Editor-in-Chief of Hepatology, Medicine and Policy, reflects on this landmark conference.

Jeffrey V. Lazarus 2 Sep 2015

Delegates representing hepatitis patient groups from around the world couldn’t be happier to gather in Glasgow.
Simon Williams Photography, Edinburgh
As I watched the opening session of the first-ever World Hepatitis Summit on 2 September 2015, I found myself wondering with no small degree of awe: How does it feel to be making history?

A bit later, when I came across this photograph on the World Hepatitis Alliance’s Facebook page, I realized that it probably feels exhilarating. Look at those smiles. How often do people destined for three days of sitting under fluorescent lights in soulless conference halls seem so delighted to be there?

A bit of background, for those readers who are not up on the World Hepatitis Summit. This event is taking place in Glasgow, Scotland on 2–4 September 2015. It is remarkable for bringing together four key sets of actors in the global response to viral hepatitis: patient groups, national governments, the World Health Organization (WHO) and the pharmaceutical industry.

After the dust has settled on the 2015 World Hepatitis Summit, I have no doubt that it will be remembered as a major milestone in the global movement to end viral hepatitis.

That’s right, representatives of all of these entities are gathering in one place for a series of discussions that can be expected to have a defining effect on how viral hepatitis is addressed by the global community going forward. After the dust has settled on the 2015 World Hepatitis Summit, I have no doubt that it will be remembered as a major milestone in the global movement to end viral hepatitis.

What further distinguishes this event is its patient-driven nature. The World Hepatitis Summit was co-organized by the World Hepatitis Alliance, WHO and the Scottish Government. WHO and the Scottish Government deserve high praise for stepping up to help make the Summit happen, but it is the contributions of the Alliance that set this event apart from other strategic gatherings in the field of hepatitis – and perhaps in the health sector overall.
To Continue-

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