Your voice is a powerful force!  Your elected representatives at the city, state and federal levels want to hear your views and concerns as a constituent.   Call your City Council member, and other representatives, to talk about Hepatitis C and the need for more awareness and funding.   If not addressed soon, experts predict that Hepatitis C will become a major healthcare crisis over the next decade.

Your advocacy will help increase awareness and funding for Hepatitis C testing, treatment, and patient support services.

Don't be silent.  Find a Hepatitis C task force or other advocacy group in your area.   Join and add your voice to the mix.  You can tell your own story, or simply show up and support the cause at meetings and other events.   You will find a link to the NYC Hepatitis C Task Force website on the Links page of the Resources section, above.

Hepatitis C has been a hidden and silent epidemic for too long.  Current and former patients can send the most powerful messages to elected officials.  Tell your representatives that more attendtion and funding is needed now to end the neglect.  

To learn the facts about Hepatitis C, visit the Resources section of our site, above.

Thanks,
Dara 

The New York City Hepatitis B Coalition and the Hepatitis C Task Force have organized two events in New York City.  Please join us to raise awareness of these hidden epidemics.

Viral Hepatitis Testing and Awareness event:  Wednesday, July 27, 10AM to 3PM, Union Square (South end of the park).
The Hepatitis Outreach Network (HONE) of Mount Sinai Medical Center will provide no-cost Hepatitis B and Hepatitis C screening for anyone who wants to be tested.  A number of community organizations will also be present to answer questions and provide information about Hepatitis B and C. 

New York City Council World Hepatitis Day Awareness event:  Thursday, July 28, 12 noon, the steps of City Hall.
Members of the New York City Council will gather to raise awareness of World Hepatitis Day.   Council member Margaret Chin will open the event, along with other Council members, and announce a City Council Proclamation marking July 28th as World Hepatitis Day.  Hepatitis B and C patients will provide testimonials.

Events are planned in cities around the world.  Please join us to make Hepatitis B and C hidden and neglected epidemics no more!

Viral hepatitis infects 500 million people worldwide.  It kills 1 million each year.

In the U.S., an estimated 4.4 to 5 million people have chronic viral hepatitis.  This estimate is almost certainly low, because over half of those infected with Hepatitis B or C are unaware of their status.  In New York City, twice as many people are infected with Hepatitis B or C as with HIV/AIDS.

These "sillent killers" claim 12,000 to 15,000 American lives each year by causing liver cancer, cirrhosis, and liver failure.  Many people live for decades unaware that they are infected...but about 25 percent will develop serious liver disease. 

Hepatitis C can be prevented and cured.  Hepatitis B can be prevented through a vaccine and controlled.  But more people need to be tested and treated NOW!

See you at Union Square or City Hall!

What is a clinical trial?  Should I consider participating in one?  What are the benefits of being a part of a clinical trial?   What should I know and consider before participating?

Clinical trials are carefully controlled research studies to determine the outcomes of using new medications and other treatments on human patients.

People who participate in clinical trials may be able to play a more active role in their own health care, gain access to new treatments before they are widely available, and help other patients by contributing to medical research.

But patients who are considering participating in a trial need to understand all the rules and procedures of the trial and the potential benefits and risk associated with it.

Clinical trials are playing a major role in the revolution in Hepatitis C treatment right now!  To learn more about clinical trials and drugs being tested, attend this meeting and hear Tracy Swan speak:

                           The Midtown Manhattan Hepatitis C Support Group
         (all are welcome - Hepatitis C patients, friends, family, all those interested in Hepatitis C)

                           Wednesday, July 27, 2011
                           6:15 PM

                           560 First Avenue (between 30th and 31st Streets)
                           Main Entrance NYU Medical Center
                           Smilow Conference Romm 1301
                           (walk into the main entrance and ask security for directions)

                           Guest Speaker:  Tracy Swan

Tracy Swan is the Hepatitis/HIV Project Director at the Treatment Action Group.  Tracy has worked on HIV treatment issues since 1990 and on Hepatitis C issues since 1998.  She focuses on promoting Hepatitis C research and policy initiatives that improve the quality of and access to care and treatment for patients.  Tracy has written on the Hepatitis C drug pipeline and has a new book out on Hepatitis C clinical trials.  

Tracy's topic on July 27 - Clinical trials and what to expect.


                

The pharmaceutical companies that sell the drugs used to treat and cure Hepatitis C offer a variety of patient assistance programs.

These programs are designed to help patients who don't have prescription drug insurance coverage and can't afford to pay for medications get the drugs they need at reduced or no cost.   Most Medicaid and Medicare plans also provide coverage for Hepatitis C treatment drugs.

You need to be under a doctor's care to select drugs for treatment and fill out the forms for patient assistance.  
If you want to learn more about the programs the pharmaceutical companies offer, you can find information on our site, www.hepatitiscmsg.org.   Hit the Resources tab (above) and go to the Assistance Programs page.  Phone numbers and web links to the pharmaceutical company programs are provided*.

If you have Medicaid or Medicare coverage, check with your doctor and your plan to learn about Hepatitis C drug coverage.

Don't give up!  Help is available to get the drugs you need to treat and cure Hepatitis C.



* p.s.  If you know of additional assistance programs...or better program links...please comment on this blog and let us know!  Thanks, Dara.

...and the outlook is getting better very quickly.

Until this year, only about 45 percent of Hepatitis C genotype 1 patients (genotype 1 is the most common type of Hepatitis C in the U.S.) who were treated with Interferon and Ribivirin were able to eliminate the virus and be cured.

But a few months ago two new drugs were approved by the FDA.  These new drugs target the genotype 1 Hepatitis C virus directly.  Tests have shown that parients who used one of the new drugs, along with Interferon and Ribivirin, had much better "cure rates" that those who used Interferon and Ribivirin alone.   In drug trials, over 70 percent of these patients eliminated the Hepatitis C virus.

And treatment for Hepatitis C promises to get even better.  A number of additional drugs and drug combinations are in test and development right now.  

Treatments being developed now are likely to allow just about everyone infected with Hepatitis C to get rid of the virus and stop damage to the liver.  

If you have put off being tested for Hepatitis C, ask your doctor to test you now.   If you know you have Hepatitis C, but have put off thinking about treatment, this is a great time to talk with a liver specialist about what new treatments for Hepatitis C - available now, or in development and testing - mean for you.