Hepatitis C: A Viral Time Bomb

“Hepatitis affects everyone, everywhere. Know it, confront it.” This is the slogan for this year’s first-ever World Health Organization–sponsored World Hepatitis Day, slated for this Thursday, July 28.

It is a fitting message for the day—the reality is viral hepatitis does, in fact, affect everyone, everywhere.  Consider, for instance, that three percent of the world’s population is infected with the hepatitis C virus, a leading cause of liver disease. That’s 130 to 170 million people chronically infected globally. In the United States alone, as many as 3.9 million Americans are living with hepatitis C, and about half are unaware of their status.

Although hepatitis C is curable, most patients outside of the developed world are unable to access treatment.  In countries as diverse as Thailand, Indonesia, Georgia, Ukraine, Russia, India, and many parts of Africa, where hepatitis C is a major public health problem, access to diagnostics and treatment barely exists. This is particularly true for people living with HIV/AIDS, for which hepatitis C is now becoming one of the leading causes of death.

One of the critical drugs in the standard treatment regime for hepatitis C today—pegylated interferon-alfa— is under patent protection and costs as much as $50,000 per course. Because of a duopoly held by the pharmaceutical giants Roche and Merck—the two companies which currently produce pegylated interferon-alfa—there is no competition by generic manufacturers that could deliver desperately needed cheaper alternatives to hepatitis C treatment.  Two new hepatitis C treatments were recently approved by the FDA, yet they have to be used with pegylated interferon, adding another $30,000 to $50,000 to the cost of treatment. At these prices, how can a country like Ukraine, with more than 1 million people infected, really commit to treating its citizens?

Prohibitive pricing of lifesaving medicines is unethical and unacceptable. The only way to increase access to hepatitis C treatment is if pharmaceutical companies—in this case, Roche, Merck, and the firms with new hepatitis C drugs in the pipeline—commit to reducing their  prices substantially to levels that become affordable to the majority of people in need of treatment.  And because millions of people need access to these lifesaving treatments, national governments and international bodies, including the WHO, must provide the political push to make this happen.

More than a decade ago, HIV/AIDS patients marched the streets of South Africa, Thailand, and Brazil demanding affordable access to medicines that could save their lives.  And with success—in a matter of months the cost of AIDS drugs dropped from over $10,000 per person per year to less than $100 today, resulting in more than 5 million people currently on treatment in low- and middle-income countries. Today, these same people are surviving on cheap generic AIDS drugs only to die from their untreated hepatitis C.

Demanding greater access to treatment is a primary reason that strong civil society groups, including people living with hepatitis C, initiated World Hepatitis Day. Roche and Merck must support people living with hepatitis C by substantially lowering the prices of pegylated interferon-alfa.

Find out what activities are happening to mark World Hepatitis Day in your community. And check back here on July 28 to hear more voices from those fighting for improved access to hepatitis C treatment around the globe.

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On July 28, over 100 people living with HIV and HCV, organized by Thai AIDS Treatment Action Group (TTAG) and allies including Thai Network of PLWHA (TNP+), Foundation for AIDS Rights, Thai NGO Coalition on AIDS and others will hold a rally at the National Health Security Office (which pays for healthcare in Thailand) and meet with an NHSO official to discuss putting PEG-IFN on the national essential drugs list and working together to look for alternative sources of affordable, effective PEF-IFN so Thailand can start treating the hundreds of thousands of people living with HCV. Treatment guidelines, access to diagnostics, better HIV regimens for coinfected individuals will also be discussed. This is the 2nd year of TTAG's grassroots HIV/HBV/HCV treatment access movement to empower directly-affected people with information and advocacy skills and opportunities.

In Nepal, though we are far away talking about Hepatitis C treatment, we organized a public awareness on Hepatitis under the umbrella of Union C, the patient's alliance. On July 28, we manage to distribute pamphlets explaining basic information about Hepatitis and WHD 2011 at public places of three major cities of the country; Kathmandu, Pokhara and Butwal. The pamphlet was translated into local langauge. We have also developed a video and uploaded to Youtube http://youtu.be/LG2EulIZZGU with intention that people start talking about Hepatitis. 28 July 2011, Kathmandu, Nepal

Thank you! We will broadcast this on our radio (African Health Dialogues), and share it with our audience. Thank you for all that you do to make the world a better place for all.

Best regards,

African Views

Of what use do we talk of RIGHTS to treatment and care when GIANTS such ac RICHE and MERCK impose sucha rocky barriers for the poor to access the medicine. Let us work to get them to allow generics and hence allow cost for tratment to come down to the level afordable especially to poor people in poor countries.

Welcome from Nepal We wish to work to educate people on Hepatitis. Pl help us what is possible from this foundation education for school children and community/s in Nepal

in my own case i take the interferon and ribavirin combination which last year cost fifty-four thousand dollars. after a total of senenty-plus weeks the HCV came back after being undetectable for four months. now to even be considered for one of the new drugs i first must be be evaluated and qualified to be put on a liver transplant list due to possible toxicity from the 'triple therapy' that in some cases can cause liver failure. so i am looking at about eighty to hundred-plus thousand dollars for a treatment that in worst case scenario could kill me. the epidemic is not coming: it is here! for the record HCV-genotype one is the worst form and is concentrated in North America. the worst form of HCV-1 has a genetic make-up known as CT. with new drug those responsive but not cured with pegylated-interferon and ribavirin with the new drug(s) have an eighty-six percent chance of cure. although my own liver is level-four it remains highly regenerative. there are rumors of medications that help such damaged livers regenerate. my greatest fortune is i have a naturally super-regenerative liver. not everyone is so lucky. it is expensive to treat. the side-effects vary from person-to-person in type and intensity. i have had terrible side effects including severe blood platlet production which has been severely diminished. it will never return to pre-treatment levels. you may be walking around with the disease and not even know it. it is only upon the virus reaching a form of critical mass that one really gets serious about being checked out. it is a slow-acting and insidious disease. it has robbed me of some of my former mental abilities and most of my physical abilities. even if you feel fine please ask your personal healthcare provider to run the test for HCV. heck even if you test positive you may be licky enough to only be infected with genotype-two. the earlier either is detected the more easily it can be cured. if you have undue fatigue, a simple but chronic 'cruddy' feeling or whatever then please get checked out as soon as possible. it took about 11 years of feeling crappy and three doctors before the last one took action and tested me for Hep-C. do it this week. you'll be glad you did either way. do not let potential costs stop you. there's help out there for those willing to ask! it is a fact if Big Pharma really wants to make a profit and treat patients then they must lower costs.

I was recently diagnosed with Hepititis C and dont have any insurance or money. I would like to no what resources are available out there to help me with treatment for this awful disease I've been diagnosed with?

Unless new miracle drug has just been developed, Hepatitis C,is not curable, per se. I will 'out' myself to make a point,after all there is a strong likelihood that the medical profession gave it to me,either along with 5 pints of blood about 40 years ago,or with blood product,for use during surgery,as the drug company was buying the blood in prison where there was a very high rate of both aids,& Hepatitis, B, C,; I believe there are types also known as D,E,and F. I tend to follow Type C, as that is what I live with, C:Type 1(a). If I were to go on interferon, besides destroying my body & causing further debilitation of other parts of my body, some wounded by torture,(suicide is unacceptably high for patients on that drug)I have a 20% percent chance of being cured. That is 18 months of interferon,pretty much the same life as when having chemotherapy but with worse odds that many types of cancer,odds I would not bet on. So with the minimal attention & funds going to research, this article,does we who suffer a great harm, for if people think the research is done, funding dries up,& per death/ it may be the least well funded major disease. How do you propose to repair the damage already done? I am sure it was not intentional.,l but I see far too much insufficient research done these days.Fortunately for me,I am not a drinker. Though a few years overdue for another biopsy,health insurance for the poor,or artists who are not famous, is not noted for good care). We are the forgotten disease. AIDs was well funded.When I gave, nearly a month's pay, I wondered what about people like me. Would we ever get that kind of attention. Why am I left wondering, is it the people who get it, who bring glamor to a disease, and hence research centers and support? I don't like to think that way, but, as time goes by, I have to wonder. The differences in progress speak volumes. I don't recall ever seeing a commercial about Hep. C.. Before you write again, no matter what the issue, please bear in mind that lives probably hang in the balance. Your words count a lot. I blame overuse of not the internet as a research tool, as a huge part of the problem. . Medical journals would have told you the sad truth have told you the happy news. I am very tired, and often weak. Insufficiently researched articles do tangentially, worsen my prospects. Perhaps you can figure out a way to contain the damage. As you probably know, there are far more of us than the CDC in Atlanta will admit, It is now pandemic, in most of the world, which increasing epidemically. No hard feelings. Good luck with tour writing, but, please, please, research your subject enough,that someone like me cannot contest it.

Dear John,

Thanks for your response and please allow me to clarify a few points you've raised.

Firstly, I understand that pegylated interferon does not work for everyone, and that treatment effectiveness depends on a number of factors including genotype, stage of liver damage, etc. That said, you cannot deny that many people have been treated effectively with it (and coped with the side-effects), and that everyone deserves the option. The main point I wanted to highlight in my blog is that treatment for hepatitis C is not accessible to millions of people because of the high price.

Additionally, there is not really a lack of research, resources and attention from the scientific community targeted to developing more effective forms of treatment, which I have also outlined in my blog (the antivirals). Please see TAG's Treatment Pipeline Report for more details about the upcoming treatments for hepatitis C (http://www.treatmentactiongroup.org/publication.aspx?id=4416).

Over the past months, two new protease inhibitors have reached the market (added to the current Peg-IFN/ribavirin treatment, and improving efficacy), and it's likely that a future without pegylated interferon is coming. But these new medicines will not be available for another 5-10 years, and it’s almost certain they too will priced out of reach for most people and governments to afford.

Making all hepatitis C treatment options accessible to all those in need is critical, today and tomorrow.

Most people living with hepatitis C do not live in countries where treatment is available, and this is further complicated by the fact that a large number of them are from marginalized groups, who already have limited access to health care. In fact, in the United States research has shown that over half of the people currently needing treatment for hepatitis C are not insured, and therefore have no access.

This blog speaks for the many people living with hepatitis C who would do anything to be treated with the medicines you claim are not worth taking...
New treatments are on the way, but what we're advocating for is that all treatments (whether current or upcoming) be priced in a way that makes them accessible and affordable.

THIS INFO ON HIPATITIS C IS SHOCKING. I COUNLD NOT UNDERSTAND WHY MANY WERE DYING IN MY COUNTY OF LIVER PROBLEMS WHEN THE PROBLEM WAS NOT THERE IN THE LAST DECADE AS MUCH AS IT IS NOW.

NOT MUCH ACTION TAKEN BY MY GOVERNMENT SO FAR AS THE PRESIDENT HAS BECOME MYOPIC IN OUTLOOK AND DECISION MAKIN. HE PRIORITISES PURCHASE OF FIGHTER JETS WHEN THERE IS NO THREAT OF WAR WITH ANY COUNCTRY AT ALL.

KEEP THE FIGHT ON TILL THE WORLD GETS TO KNOW THE SILENT KILLER IN THE VICINITY.

THANK YOU.

I am a student in s6 and the red cross found me with hapatisis C given my background I am scared of treatment.

If please you can help for treatment.

Yours, Johnson.

Thanks for this post about the World Hepatitis Day. Good information.

Hi everyone,
Thank you for your comments and interest on this critical issue!
I have noticed that some of you are interested in learning more about treatment options for hepatitis C. Please refer to the World Hepatitis Alliance for more information:
http://www.worldhepatitisalliance.org/Home.aspx

I work for an organization, Good Days from Chronic Disease Fund, that works with patients to help them get the medical treatment and care they need at an affordable price. While we cannot take away the expenses completely, we try to lessen the burden as much as possible. Visit our website for more information on our efforts, and to learn what you can do to help us, help so many. http://www.gooddaysfromcdf.org/

the blocker suboxone for opioid addiction is $240.00 per month.that is way out of reach for those who are indigent in the united states.the answer is there but unavailable to many.

Hi to everyone. I found out a few years back that I had Hep C, and did the series of tests showing viral load, type (1 a) and then some various liver function tests and ultrasound.

I have no insurance and no work at the moment, so interferon treatment is out, and given the statistics I don't think I would even want to try it. So, I have focused on trying to learn about what I can do to improve my health and have found what I think are some helpful nutrional supplements/herbal medicines. The two that have really helped are NAC (an amino acid that is a precursor to glutathione, the liver's main antioxidant that removes toxins)and reishi mushroom as a tea, which is supposed to stimulate immune activity. I take milk thistle and a number of other things (vitamins,fresh juices) and try to continue exercising on regular basis. The latest test and ultra sound indicate little change from when I started tests 3 years ago. So, I am thinking that paying close attention to health and taking supplements that are known to be helpful to liver, and avoiding some that are not helpful (like iron supplments) and drugs like acetaminophen might be the best approach to me.

I think also that it is apalling that little is done to educate the public and those infected about what can be done. It seems that the health and policy community avoid it because of costs of treatment with interferon, which is black and white thinking. Ok, so everyone cannot afford interferon and it doesn't even work that well for many, why not then focus on what CAN be done? What about 1) educating people who are at risk and need to get tested, 2) teaching Hep C patients how to monitor the illness and provide for themselves the best self-care/management AND 3) teaching those who are infected how to avoid passing it to relatives and friends (sharing razors etc). A lot of good can be done, and this does not involve much cost. Is there any NGO or other organisation that is providing this kind of guidance and information? Best wishes to all.

Thank you for adding this video. It seems that from what you said, it's harder to be treated for Hepatitis C in developing nations. Helpful read.

My name is adriane i am 26 i read your story and it was quite touching its nice to read a story and actually kno there are others out there and there is hope. I found out i had Hep.C only because i was getting sick of having severe gut rot symptoms so i went in and i have 10 tattoos and I have used drugs in the past and i have 4 children so i was a good canidate for the test(and bio mat sent me a paper saying something abnormal came back in my blood work) so yeah i just found out after all the tests and GI i had to go see i just found out im Geno Type 1A and now im waiting to hear back about a trial treatment. Im scared and dont know what to do. One thing i kno is it is an option and i should feel lucky and thankful and shouldnt even think not to take it, but yet that might speed up my only time i have left and i dont want to die yet. Trial Drugs are scary nobody knows about them! Ive been doing a lot of reading and i want to know about what drugs ill be on and how theyll affect me and im afraid i wont be able to care for my family, will i need to find someone after i start treatment to do my daily tasks? Please if anyone can help me with just letting me know things you think would be helpful for me to know im all ears!! Im trying to stay strong i need to stay strong thanks so much

A new drug combination (Gilead Sciences 'GS-7977' + Bristol-Myers' 'Daclatasvir') has highest cure rate in genotype 1 patients and high rate in genotypes 2 & 3 without the utilization of Interferon or Ribavirin.

But due to some minor setbacks, Gilead Sciences elected not to take these drugs into Phase III trials. Hence, this petition is requesting them to continue their research to Phase III. Then the new drugs can be approved by FDA and can be released into the market! Please sign this petition.

"Quoting from ETAG: "The most effective new therapy for hepatitis C -- two pills that could cure nearly every patient treated -- may never see the light of day because the developers of these new medicines, Bristol-Myers Squibb and Gilead Sciences, seem unable to work together. Apparently, profits are more important than best patient care. Best therapy 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. Amazingly, this most promising new treatment for hepatitis C patients may actually be discontinued because Bristol and Gilead can't work together. Gilead needs to justify that $11 billion and deliver profits and returns to its shareholders. Collaborating with Bristol would more than likely dilute Gilead's Hep C profits, which helps explain why Gilead isn't exactly thrilled to push ahead. Hep C patients in need of convenient and potent new cures are being
hurt." Please sign this petition to urge Gilead to work with Bristol-Myers Squibb on this drug combination for the benefit of those suffering with hepatitis C."

http://alturl.com/vkvhz

Please sign the petition:
http://www.change.org/petitions/gilead-sciences-please-collaborate-with-...

I live in America and can get no treatment without health insurance and money.

I was diagnosed over two years ago. Since I have no money or insurance, I have found no way to receive treatment. I cannot find work because I am sick constantly. I cannot find treatment because I am broke. I probably had hepatitis c for much longer than it was detected because I haven't participated in any at-risk behaviors in six years. It was detected when I tried to give blood. I live in the United States in the state of Mississippi . My local health department told me quite rudely that they don't treat hepatitis c. Is there any hope for me?

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