Subject: Confidential Online Survey for those with Hep C/Genotype 1
A $25 donation made to HEALS for taking the survey
FACP /HEALS of the South Find a Cure Panel specializes in patient research for serious diseases including Hep C.
And they have a current anonymous online survey for those who Hep C.
To qualify you must:
1) Have HEP C รข€“ have a current diagnosis (ie. NOT cured the virus)
2) Live in the US
3) Be Genotype 1
4) You can be on meds; not on meds currently or never on meds. If you are in process of curing the virus, you will still qualify as long as you have not officially cured it.
If you complete the survey, FACP will donate $25 to HEALS.
Please click on this link to access the survey. http://www.sampleczar.com/survey/SC_RD.aspx?supplier_id=5033
You will be asked to register for FACP which takes 1 minute then swung into the main survey. The data in the FACP profile is NOT connected to the main survey. Your participation in this survey and all subsequent surveys is completely anonymous. If you have already registered for FACP, you will have already received an email invitation from them.
If you have any questions about participating, please contact FACP directly at: info@findacurepanel.com
~~~~~~~~~~~~~~~~~~~~~~~~~~
Hi Everyone. I just completed the survey and it did take about 1/2 hour but H.E.A.L.S would very much appreciate it if those of you that are geno 1's would PLEASE take the time to do the survey and Help H.E.A.L.S Help Others with the $25 donation they will give to H.E.A.L.S.
Thank you for your time and consideration!
Also please feel free to pass forward to anyone you know that would qualify and THANK YOU!
Saturday, March 24, 2012
Wednesday, November 2, 2011
NVHR/NASTAD meeting in DC October 2011~
This is where I was last week. A wonderful HCV conference where Natalie Cole was the guest speaker. Yes that is me doing the intro :-)
I misspoke and should have said my hemoglobin went from almost 17 to 6, not 7 to 6 but oh well! LOL
Check out the link and hear what Natalie has to say about her journey and please feel free to pass forward. http://youtu.be/Ql-Fb3Vc-co You might have to copy and paste into your browser
~~~~~~~~~~~~~~~~~~~~~~~~~~~
Copy and paste the link into your browser to see the picture[s]:
http://2011dchepatitismeeting.shutterfly.com/pictures/252
I misspoke and should have said my hemoglobin went from almost 17 to 6, not 7 to 6 but oh well! LOL
Check out the link and hear what Natalie has to say about her journey and please feel free to pass forward. http://youtu.be/Ql-Fb3Vc-co You might have to copy and paste into your browser
~~~~~~~~~~~~~~~~~~~~~~~~~~~
Copy and paste the link into your browser to see the picture[s]:
http://2011dchepatitismeeting.shutterfly.com/pictures/252
Sunday, October 30, 2011
GET TESTED for Hepatitis C! Important for Everyone from Transplant Recipients to Licensed Practical Nurses!
GET TESTED for Hepatitis C!
About me: (from www.myspace.com/figmento )
I was diagnosed with Hepatitis C in June 1997 in Glenwood Springs, Colorado and since that time I have turned my life over to educating and advocating wherever I can for Hepatitis C. I do have cirrhosis.
You should be tested for Hepatitis C if you:
*Received blood, blood products, or an organ transplant prior to 1992
*Ever shared drug paraphernalia
*Ever been stuck by a used blood needle
*Had a tattoo or body piercing
*Been on kidney dialysis
*Had sexual activity that involved contact with blood
*Had a vaccination with a pneumatic jet gun injector (Military)
*Shared personal care items with other people (razors, toothbrushes, nail clippers, etc.)
*Work as a first responder (EMT, fireman, policeman, etc.) or in the health care field (Doctor,PA, RN, LPN, etc)
Hepatitis C patients outnumber HIV patients FIVE TO ONE! 1 in 12 in the world have some form of hepatitis! Visit http://www.aminumber12.org/ for more information.
While living in Woodstock, GA several years ago, I became actively involved in a nonprofit called H.E.A.L.S of North Georgia (Hepatitis Education Awareness and Liver Support) and when I moved to Florida we changed the name to H.E.A.L.S of the South. We have websites at http://www.healsofthesouth.org/ and http://www.healsofthesouth.com/
Stop by and visit!
Also you can join http://groups.yahoo.com/group/HepCingles2 and ASK QUESTIONS and receive support!
Mahatma Gandhi put it well: "Be the change you want to see in the world." It always begins with one person.
Tell 12 of your friends to get Tested for Hep C and vaccinated for Hep A and Hep B and tell them to tell 12 friends. Let's educate the WORLD!
About me: (from www.myspace.com/figmento )
I was diagnosed with Hepatitis C in June 1997 in Glenwood Springs, Colorado and since that time I have turned my life over to educating and advocating wherever I can for Hepatitis C. I do have cirrhosis.
You should be tested for Hepatitis C if you:
*Received blood, blood products, or an organ transplant prior to 1992
*Ever shared drug paraphernalia
*Ever been stuck by a used blood needle
*Had a tattoo or body piercing
*Been on kidney dialysis
*Had sexual activity that involved contact with blood
*Had a vaccination with a pneumatic jet gun injector (Military)
*Shared personal care items with other people (razors, toothbrushes, nail clippers, etc.)
*Work as a first responder (EMT, fireman, policeman, etc.) or in the health care field (Doctor,PA, RN, LPN, etc)
Hepatitis C patients outnumber HIV patients FIVE TO ONE! 1 in 12 in the world have some form of hepatitis! Visit http://www.aminumber12.org/ for more information.
While living in Woodstock, GA several years ago, I became actively involved in a nonprofit called H.E.A.L.S of North Georgia (Hepatitis Education Awareness and Liver Support) and when I moved to Florida we changed the name to H.E.A.L.S of the South. We have websites at http://www.healsofthesouth.org/ and http://www.healsofthesouth.com/
Stop by and visit!
Also you can join http://groups.yahoo.com/group/HepCingles2 and ASK QUESTIONS and receive support!
Mahatma Gandhi put it well: "Be the change you want to see in the world." It always begins with one person.
Tell 12 of your friends to get Tested for Hep C and vaccinated for Hep A and Hep B and tell them to tell 12 friends. Let's educate the WORLD!
Tuesday, August 2, 2011
World Hepatitis Day July 28, 2011
White House: World Hepatitis Day Briefing, July 28,2011
Click to watch............
http://www.youtube.com/watch?v=57GqP85CURE&feature=youtu.be
http://www.youtube.com/watch?v=R1gz5gxKwhM&feature=youtu.be
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
President Obama proclaims July 28, 2011, as World Hepatitis Day
http://nvhr.org/content/president-obama-proclaims-july-28-2011-world-hepatitis-day
Then click on the PDF
2011_hepatitis_prc_rel.pdf
Click to watch............
http://www.youtube.com/watch?v=57GqP85CURE&feature=youtu.be
http://www.youtube.com/watch?v=R1gz5gxKwhM&feature=youtu.be
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
President Obama proclaims July 28, 2011, as World Hepatitis Day
http://nvhr.org/content/president-obama-proclaims-july-28-2011-world-hepatitis-day
Then click on the PDF
2011_hepatitis_prc_rel.pdf
Wednesday, June 8, 2011
Killing Us Softly: What Americans Don't Know & Why It Will Kill Them
Killing Us Softly: What Americans Don't Know & Why It Will Kill Them
For too long, viral hepatitis, an epidemic that doesn't necessarily make headlines, has steadily and silently affected the lives of millions of Americans. In fact, as many as 5.3 million Americans have hepatitis B or hepatitis C, contributing to a global burden that now engulfs more than half a billion people. These infections fuel a cascade of suffering, including cirrhosis, liver cancer and liver failure. In fact, viral hepatitis is the leading cause of liver transplantation in the U.S. In short, vulnerable communities are being devastated across our nation and, indeed, around the world. Last month, our government made a commitment to advance and integrate national efforts to break the silence.
Why is taking action so necessary? First, because those with the disease can be symptom-free for decades, and few actually know their status or understand how highly infectious viral hepatitis is. For example, hepatitis C is 10 times more infectious and hepatitis B is 100 times more infectious than HIV/AIDS. And nearly two-thirds of those living with hepatitis don't even know they're infected. This tragic lack of awareness leaves infected persons more vulnerable to complications and also more likely to unwittingly spread the infection to others. Second, without action, hepatitis B and C will burden our country with at least $20 billion in health care expenses over the next 10 years. Finally, we know that too many opportunities for prevention, testing and treatment -- including vaccination against hepatitis B -- have remained untapped or underutilized.
Fortunately, the federal government has initiated new efforts to tackle this treatable and highly preventable public health challenge. The U.S. Department of Health and Human Services (HHS) recently released Combating the Silent Epidemic of Viral Hepatitis: Action Plan for the Prevention, Care and Treatment of Viral Hepatitis, a comprehensive strategy to combat the disease. This action plan contains a series of interventions that are both cost-effective and feasible. The plan includes some important building blocks already in place, including vaccination against hepatitis B. Most notably, the Affordable Care Act (ACA) improves patient access to viral hepatitis services through education, testing, vaccination and referral. Moreover, the ACA encourages state-based Medicaid programs to cover clinical preventive services such as immunization. Other strategies aim to raise public awareness about viral hepatitis and to create more opportunities to train health professionals to diagnose, treat and ultimately prevent more people from getting this disease.
We hope that these and other commitments will catalyze action for further progress. On the global front, the World Health Organization has designated July 28 as the first annual World Hepatitis Day. Such attention is long overdue for a condition that affects one in 12 persons worldwide. These new beginnings can shine a bright light on a disease that has lingered for too long in the shadows.
As a nation and as part of a global society, it is time to break the silence. Too many are suffering and the consequences affect us all. Together, we must finally sound the alarm that can serve as a call to action to end this silent epidemic.
Rep Mike Honda is Chair Emeritus of the Congressional Asian Pacific American Caucus. Follow Rep Honda on Facebook and Twitter. Dr. Howard K. Koh is the Assistant Secretary for Health for the U.S. Department of Health and Human Services.
Follow Rep. Mike Honda on Twitter: www.twitter.com/repmikehonda
http://www.huffingtonpost.com/rep-mike-honda/world-hepatitis-day_b_872471.html
For too long, viral hepatitis, an epidemic that doesn't necessarily make headlines, has steadily and silently affected the lives of millions of Americans. In fact, as many as 5.3 million Americans have hepatitis B or hepatitis C, contributing to a global burden that now engulfs more than half a billion people. These infections fuel a cascade of suffering, including cirrhosis, liver cancer and liver failure. In fact, viral hepatitis is the leading cause of liver transplantation in the U.S. In short, vulnerable communities are being devastated across our nation and, indeed, around the world. Last month, our government made a commitment to advance and integrate national efforts to break the silence.
Why is taking action so necessary? First, because those with the disease can be symptom-free for decades, and few actually know their status or understand how highly infectious viral hepatitis is. For example, hepatitis C is 10 times more infectious and hepatitis B is 100 times more infectious than HIV/AIDS. And nearly two-thirds of those living with hepatitis don't even know they're infected. This tragic lack of awareness leaves infected persons more vulnerable to complications and also more likely to unwittingly spread the infection to others. Second, without action, hepatitis B and C will burden our country with at least $20 billion in health care expenses over the next 10 years. Finally, we know that too many opportunities for prevention, testing and treatment -- including vaccination against hepatitis B -- have remained untapped or underutilized.
Fortunately, the federal government has initiated new efforts to tackle this treatable and highly preventable public health challenge. The U.S. Department of Health and Human Services (HHS) recently released Combating the Silent Epidemic of Viral Hepatitis: Action Plan for the Prevention, Care and Treatment of Viral Hepatitis, a comprehensive strategy to combat the disease. This action plan contains a series of interventions that are both cost-effective and feasible. The plan includes some important building blocks already in place, including vaccination against hepatitis B. Most notably, the Affordable Care Act (ACA) improves patient access to viral hepatitis services through education, testing, vaccination and referral. Moreover, the ACA encourages state-based Medicaid programs to cover clinical preventive services such as immunization. Other strategies aim to raise public awareness about viral hepatitis and to create more opportunities to train health professionals to diagnose, treat and ultimately prevent more people from getting this disease.
We hope that these and other commitments will catalyze action for further progress. On the global front, the World Health Organization has designated July 28 as the first annual World Hepatitis Day. Such attention is long overdue for a condition that affects one in 12 persons worldwide. These new beginnings can shine a bright light on a disease that has lingered for too long in the shadows.
As a nation and as part of a global society, it is time to break the silence. Too many are suffering and the consequences affect us all. Together, we must finally sound the alarm that can serve as a call to action to end this silent epidemic.
Rep Mike Honda is Chair Emeritus of the Congressional Asian Pacific American Caucus. Follow Rep Honda on Facebook and Twitter. Dr. Howard K. Koh is the Assistant Secretary for Health for the U.S. Department of Health and Human Services.
Follow Rep. Mike Honda on Twitter: www.twitter.com/repmikehonda
http://www.huffingtonpost.com/rep-mike-honda/world-hepatitis-day_b_872471.html
Monday, May 23, 2011
You can listen to replay of FDA Teleconference on Boceprevir and Telaprevir
FDA Teleconference Monday, May 23rd
I know many of you have questions about both these medications. I think if you take 50+ minutes and listen to the replay of the teleconference you will find most of your answers. It will only be available for 30 days so please take advantage of this opportunity. To hear the replay, callers can dial 888-324-7513.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dear Colleague,
The Food and Drug Administration (FDA) invites you to participate in a teleconference briefing to discuss two Direct Acting Antivirals (DAAs) for the treatment of hepatitis C, boceprevir and telaprevir, that were discussed at an April 27 -28, 2011 meeting of the FDA Antiviral Drugs Advisory Committee. DAAs represent a significant addition to the treatment approach for many patients. However, the dosing regimens may be complex, and there are treatment issues about which health care providers and patients should be aware.
The teleconference will be held on Monday, May 23, 2011 from 3:30 PM to 4:30 PM EDT.
Following a brief introduction by Margaret Hamburg, Commissioner of the Food and Drug Administration, the briefing will provide an overview of the clinical trials, primary efficacy, safety, and complexity of dosing regimens. The briefing will consist of presentations by Debra Birnkrant, M.D, Director, and Jeffery Murray, Deputy Director, Division of Antiviral Products, Center for Drug Evaluation and Research (CDER), followed by an opportunity for questions from call participants. The briefing will be moderated by Richard Klein, FDA Office of Special Health Issues.
A replay will be available for 30 days, beginning approximately one hour after the briefing call ends. To hear the replay, callers can dial 888-324-7513.
I know many of you have questions about both these medications. I think if you take 50+ minutes and listen to the replay of the teleconference you will find most of your answers. It will only be available for 30 days so please take advantage of this opportunity. To hear the replay, callers can dial 888-324-7513.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dear Colleague,
The Food and Drug Administration (FDA) invites you to participate in a teleconference briefing to discuss two Direct Acting Antivirals (DAAs) for the treatment of hepatitis C, boceprevir and telaprevir, that were discussed at an April 27 -28, 2011 meeting of the FDA Antiviral Drugs Advisory Committee. DAAs represent a significant addition to the treatment approach for many patients. However, the dosing regimens may be complex, and there are treatment issues about which health care providers and patients should be aware.
The teleconference will be held on Monday, May 23, 2011 from 3:30 PM to 4:30 PM EDT.
Following a brief introduction by Margaret Hamburg, Commissioner of the Food and Drug Administration, the briefing will provide an overview of the clinical trials, primary efficacy, safety, and complexity of dosing regimens. The briefing will consist of presentations by Debra Birnkrant, M.D, Director, and Jeffery Murray, Deputy Director, Division of Antiviral Products, Center for Drug Evaluation and Research (CDER), followed by an opportunity for questions from call participants. The briefing will be moderated by Richard Klein, FDA Office of Special Health Issues.
A replay will be available for 30 days, beginning approximately one hour after the briefing call ends. To hear the replay, callers can dial 888-324-7513.
FDA OKs Telaprevir for Hep C
FDA OKs Telaprevir for Hep C
WASHINGTON -- The FDA has approved telaprevir (Incivek) for treatment of hepatitis C genotype 1, making it the second new protease inhibitor to win agency approval for the condition this month.
Hepatitis C affects some three to four million people in the U.S.; about two-thirds have genotype 1.
The approval was all but certain after an FDA advisory committee unanimously endorsed telaprevir, made by Vertex Pharmaceuticals, in April. On May 13, the agency announced it is approving Merck's boceprevir (Victrelis).
Telaprevir and boceprevir work by targeting the virus directly; the current standard treatment regimen of pegylated interferon and ribavirin works instead by boosting patients' immune responses.
Both telaprevir and boceprevir are indicated as add-on treatment to pegylated interferon and ribavirin.
Telaprevir comes in pill form and is taken three times a day for 12 weeks, with peginterferon and ribavirin at standard doses for 24 or 48 weeks, depending on virologic response.
Adding a protease inhibitor to peginterferon and ribavirin is expected to become the new standard of care for HCV genotype 1 patients.
About half of patients treated with the standard peginterferon and ribavirin combo achieve sustained viral responses. The telaprevir trials indicated that adding the protease inhibitor could boost the sustained response rate above 70%, to as much as 90%, in patients who had never been treated for HCV, according to results from one study.
"With the approval of Incivek, there are now two important new treatment options for hepatitis C that offer a greater chance at a cure for some patients with this serious condition," said Edward Cox, MD, MPH, director of the FDA's Office of Antimicrobial Products.
"The availability of new therapies that significantly increase responses while potentially decreasing the overall duration of treatment is a major step forward in the battle against chronic hepatitis C infection," Cox said.
The FDA advisory panel that reviewed telaprevir was extremely confident that the drug works but was concerned about an increased incidence of serious and life-threatening skin reactions, including three cases of Stevens-Johnson syndrome in patients who took telaprevir.
More than half of patients receiving the drug reported rash or pruritus, with 6% discontinuing treatment as a result. These rates were about double those in the control groups.
Vertex assured the panel that those side effects are generally manageable and resolve after the drug is stopped.
http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/26638
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Telaprevir Patient Assistance Program
Helping People with Hepatitis C Get INCIVEK
The people who work at Vertex understand that medicines can only help patients who can get them. With that in mind, the company today introduced a comprehensive financial assistance and patient support program to help people get INCIVEK who might not otherwise be able to afford it. The program will help people with hepatitis C learn about insurance benefits for their medicines, give INCIVEK for free to eligible patients who do not have insurance and provide coverage for co-pay or co-insurance costs associated with INCIVEK for people who meet certain program criteria.
Additionally, patients will have access to nurses through a 24-7 hotline by which they can receive support, guidance and educational materials about hepatitis C and its treatment. Vertex will also provide nurses and doctors with educational tools and resources so they can offer support and care to people with hepatitis C before, during and after the treatment process.
For eligible patients, the program includes the following:
Insurance Benefits Research and Support: Vertex case managers will research patients' insurance benefits for INCIVEK combination treatment, assist people with insurance appeals and help guide them to other forms of financial support, including Vertex's free medicine and co-pay programs;
Free Medicine Program: Vertex will give INCIVEK for free to people who do not have insurance and have an annual household income of $100,000 or less; and
Co-Pay Support: Vertex will cover co-pay or co-insurance costs up to 20 percent of the total cost of INCIVEK for people who have private insurance plans that cover INCIVEK, regardless of their household income. For people covered by government insurance, Vertex will also make donations to the independent, non-profit Patient Access Network Foundation, which has a fund to provide co-pay support to people taking hepatitis C medicines.
More information about this program is available by calling 1-855-837-8394 or visiting www.INCIVEK.com
WASHINGTON -- The FDA has approved telaprevir (Incivek) for treatment of hepatitis C genotype 1, making it the second new protease inhibitor to win agency approval for the condition this month.
Hepatitis C affects some three to four million people in the U.S.; about two-thirds have genotype 1.
The approval was all but certain after an FDA advisory committee unanimously endorsed telaprevir, made by Vertex Pharmaceuticals, in April. On May 13, the agency announced it is approving Merck's boceprevir (Victrelis).
Telaprevir and boceprevir work by targeting the virus directly; the current standard treatment regimen of pegylated interferon and ribavirin works instead by boosting patients' immune responses.
Both telaprevir and boceprevir are indicated as add-on treatment to pegylated interferon and ribavirin.
Telaprevir comes in pill form and is taken three times a day for 12 weeks, with peginterferon and ribavirin at standard doses for 24 or 48 weeks, depending on virologic response.
Adding a protease inhibitor to peginterferon and ribavirin is expected to become the new standard of care for HCV genotype 1 patients.
About half of patients treated with the standard peginterferon and ribavirin combo achieve sustained viral responses. The telaprevir trials indicated that adding the protease inhibitor could boost the sustained response rate above 70%, to as much as 90%, in patients who had never been treated for HCV, according to results from one study.
"With the approval of Incivek, there are now two important new treatment options for hepatitis C that offer a greater chance at a cure for some patients with this serious condition," said Edward Cox, MD, MPH, director of the FDA's Office of Antimicrobial Products.
"The availability of new therapies that significantly increase responses while potentially decreasing the overall duration of treatment is a major step forward in the battle against chronic hepatitis C infection," Cox said.
The FDA advisory panel that reviewed telaprevir was extremely confident that the drug works but was concerned about an increased incidence of serious and life-threatening skin reactions, including three cases of Stevens-Johnson syndrome in patients who took telaprevir.
More than half of patients receiving the drug reported rash or pruritus, with 6% discontinuing treatment as a result. These rates were about double those in the control groups.
Vertex assured the panel that those side effects are generally manageable and resolve after the drug is stopped.
http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/26638
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Telaprevir Patient Assistance Program
Helping People with Hepatitis C Get INCIVEK
The people who work at Vertex understand that medicines can only help patients who can get them. With that in mind, the company today introduced a comprehensive financial assistance and patient support program to help people get INCIVEK who might not otherwise be able to afford it. The program will help people with hepatitis C learn about insurance benefits for their medicines, give INCIVEK for free to eligible patients who do not have insurance and provide coverage for co-pay or co-insurance costs associated with INCIVEK for people who meet certain program criteria.
Additionally, patients will have access to nurses through a 24-7 hotline by which they can receive support, guidance and educational materials about hepatitis C and its treatment. Vertex will also provide nurses and doctors with educational tools and resources so they can offer support and care to people with hepatitis C before, during and after the treatment process.
For eligible patients, the program includes the following:
Insurance Benefits Research and Support: Vertex case managers will research patients' insurance benefits for INCIVEK combination treatment, assist people with insurance appeals and help guide them to other forms of financial support, including Vertex's free medicine and co-pay programs;
Free Medicine Program: Vertex will give INCIVEK for free to people who do not have insurance and have an annual household income of $100,000 or less; and
Co-Pay Support: Vertex will cover co-pay or co-insurance costs up to 20 percent of the total cost of INCIVEK for people who have private insurance plans that cover INCIVEK, regardless of their household income. For people covered by government insurance, Vertex will also make donations to the independent, non-profit Patient Access Network Foundation, which has a fund to provide co-pay support to people taking hepatitis C medicines.
More information about this program is available by calling 1-855-837-8394 or visiting www.INCIVEK.com
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