Showing posts with label HCV Support. Show all posts
Showing posts with label HCV Support. Show all posts

October 23, 2013

Unmet Need in Hepatitis C Gets Boost from Innovative Partnership

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23. October 2013

Boehringer Ingelheim makes significant investment in groundbreaking hepatitis C program with two leading researchers from the Francis Family Liver Clinic, Toronto Western Hospital University Health Network

Burlington, ON, October 23rd, 2013 In a move to address a significant unmet need in hepatitis C in Canada, the University Health Network (UHN), together with Boehringer Ingelheim (Canada) Ltd. (BICL), announced today a multi-year partnership that aims to improve care, education and support for patients with hepatitis C. The program, known as Link-C, aims to improve access to hepatitis C care and treatment in remote areas of Ontario and other parts of Canada.

A large number of Canadians with hepatitis C remain undiagnosed. According to a single estimate, 21 per cent of Canadians infected with hepatitis C remain undiagnosed, however, some experts believe that this figure may be higher.1 In addition, many Canadians, particularly those living in remote areas, lack access to local care and treatment.2 While hepatitis C is an infection that can be cured, hepatitis C treatment and management is highly specialized and available from a limited group of health care providers with such expertise.3

The UHN/BICL partnership, which is supported through a $600,000 grant from BICL, is designed to support and motivate additional health care providers in rural areas to develop the expertise necessary to treat the disease. These funds will be focused on training physicians to actively engage and inform patients about the risk factors and optimal treatment options. Furthermore, the program will also inform recommendations for an optimal screening program.

“We recognize that an alarming number of Canadians lack timely access to hepatitis C care, which is why we’ve developed the Link-C program,” said Dr. Jordan Feld, Francis Family Liver Clinic, Toronto Western Hospital, a part of the University Health Network. “The diagnosis can be life-changing, yet there is a gap in awareness among patients and caregivers about the disease itself, its implications and treatment options. Link-C will bring education and support to more health care professionals so that we can improve care for the men and women with hepatitis C in Canada.”

Hepatitis C affects at least 240,000 Canadians with some estimates as high as 400,000.4 Left untreated, hepatitis C can lead to scarring of the liver, liver failure and potentially liver cancer.5 As there are a limited number of physicians who treat hepatitis C, patients can experience lengthy wait times.6 The goal of Link-C is to broaden the pool of health care professionals with expertise in hepatitis C, thereby increasing the number of health care professionals who can diagnose, treat and manage the disease.

“In addition to equipping additional health care providers with the expertise to identify and treat hepatitis C, Link-C will also engage and inform patients about the risk factors, symptoms and treatment options,” said Dr. Hemant Shah, Director of Education, Francis Family Liver Clinic, Toronto Western Hospital. “Ultimately, I think a program like Link-C will help build towards a national screening program. Hepatitis C is the only chronic viral infection that is curable, so the more we can provide access to information and education for patients and caregivers, the more effective we will be at ensuring that patients can deal with and manage this condition before it yields further and much more serious complications such as liver failure and cancer.”

According to data from 2009, approximately 10,000 to 12,000 new cases of hepatitis C are diagnosed in Canada each year.7 Increasing the number of health care providers who can treat and manage hepatitis C will help diagnose and cure the growing number of patients living with this disease.

Boehringer Ingelheim is working with hepatitis C experts to address the unmet medical need of many Canadians with this disease. “As a leader in advanced therapeutics for infectious diseases, including hepatitis C, Boehringer Ingelheim (Canada) Ltd. could not be more pleased to be partnering with the University Health Network on this program to address a significant area of unmet need facing hepatitis C patients,” said Dr. Ted Witek, president and CEO, Boehringer Ingelheim (Canada) Ltd . “We are delighted to be supporting the Link-C program, which will address some of the critical barriers to better care for both patients with hepatitis C and those who treat it.”

About Link-C
The Link-C program is composed of three pillars:

  • Increase the number of primary care providers treating hepatitis C outside of urban centres so that patients in remote areas can be treated locally.
  • Encourage patients to be screened and diagnosed, educate them about the symptoms and treatments available for hepatitis C, and involve them in the management of their care.
  • Inform recommendations for an effective screening protocol for hepatitis C through the review and analysis of diagnostic, cancer and patient outcome data.

About Hepatitis C
Hepatitis C is a blood-borne infectious disease and a leading cause of chronic liver disease, transplant and failure that affects as many as 150 million people globally.8 In Canada, an estimated 240,000 individuals, with some estimates as high as 400,000 are infected with the disease.9 The Canadian Liver Foundation estimates that since 2007 approximately 500 people die from hepatitis C-related illnesses in Canada each year.10 The number of hepatitis C-associated illnesses, including cirrhosis, liver failure, liver death and the need for liver transplants will likely double or triple in the next decade.11

About University Health Network
University Health Network includes Toronto General and Toronto Western Hospitals, Princess Margaret Cancer Centre, and Toronto Rehabilitation Institute. The scope of research and complexity of cases at University Health Network has made it a national and international source for discovery, education and patient care. It has the largest hospital-based research program in Canada, with major research in cardiology, transplantation, neurosciences, neurology, oncology, surgical innovation, infectious diseases, genomic medicine and rehabilitation medicine. University Health Network is a research hospital affiliated with the University of Toronto. For more information, please go to www.uhn.ca.

About Boehringer Ingelheim (Canada) Ltd.
The Boehringer Ingelheim group is one of the world’s 20 leading pharmaceutical companies. Headquartered in Ingelheim, Germany, it operates globally with 145 affiliates and more than 44,000 employees.

Since it was founded in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel products of high therapeutic value for human and veterinary medicine. As a central element of its culture, Boehringer Ingelheim pledges to act socially responsible. Involvement in social projects, caring for employees and their families, and providing equal opportunities for all employees form the foundation of the global operations. Mutual cooperation and respect, as well as environmental protection and sustainability are intrinsic factors in all of Boehringer Ingelheim’s endeavours.

In 2011, Boehringer Ingelheim posted net sales of 13.2 billion euro while spending almost 24% of net sales in its largest business segment Prescription Medicines on research and development.

The Canadian headquarters of Boehringer Ingelheim was established in 1972 and is home to more than 750 employees across the country. For more information please visit www.boehringer-ingelheim.ca.

Jennifer Mota
Brand Communication Associate
Boehringer Ingelheim (Canada) Ltd.
(905) 631-4739 (B)
(905) 484-1452 (C)
Email: jennifer.mota@boehringer-ingelheim.com

Rererences  

1. Shah, H.A. et al. A Canadian screening program for hepatitis C: Is now the time? CMAJ. 2013.
2. Ontario Hepatitis C Task Force. A proposed strategy to address hepatitis C in Ontario 2009-2014. 2009.
3. Myers, R. et al. An update on the management of chronic hepatitis C: Consensus guidelines from the Canadian Association for the Study of the Liver. Can J Gastroenterol, Vol. 26, No 6, June 2012.
4. Sherman, M et al. Liver disease in Canada: A crisis in the making. Report by Canadian Liver Foundation. From web site. 2013.
5. Sherman, M et al. Liver disease in Canada: A crisis in the making. Report by Canadian Liver Foundation. From web site. 2013.
6. Myers, R. et al. An update on the management of chronic hepatitis C: Consensus guidelines from the Canadian Association for the Study of the Liver. Can J Gastroenterol, Vol. 26, No 6, June 2012.
7. Sherman, M et al. Liver disease in Canada: A crisis in the making. Report by Canadian Liver Foundation. From web site. 2013.
8. Hepatitis C. World Health Organization. From web, http://www.who.int/mediacentre/factsheets/fs164/en/. Accessed October 11, 2013.
9. Sherman, M et al. Liver disease in Canada: A crisis in the making. Report by Canadian Liver Foundation. From web site. 2013.
10. Sherman, M et al. Liver disease in Canada: A crisis in the making. Report by Canadian Liver Foundation. From web site.
11. Zou, S. et al. Epidemiology and Health Care Planning: Estimating the Burden of Hepatitis C in Canada. Health Canada.

Source

March 19, 2012

877-HELP-4-HEP; a Peer Advocacy Success Story

San Francisco, CA, March 19, 2012 --(PR.com)-- The first week of February brought both good news and bad news to Mary*. She learned that her husband was an early responder to the powerful triple drug cocktail for hepatitis C. She also found out that their family’s state-sponsored health insurance coverage was going to be terminated.

Several months ago, Mary had called 877-HELP-4-HEP (877-435-7443). Many conversations with peer counselors helped her husband prepare to start treatment at the beginning of the year and provided much needed emotional support for the family.

One counseling conversation raised a flag. A few short weeks after her husband started treatment; Mary mentioned that she got a part-time job to help buy groceries for their family of five. Her HELP-4-HEP counselor was on the alert. What Mary did not consider was that her extra wages might alter her family eligibility for state-sponsored insurance at a very inopportune time.

Mary’s counseling team began reviewing options to avoid disruptions to treatment. When her “bad news” came, it was met with an action plan. Mary’s husband will continue under the care of his current treating physician, receive medications at no cost through patient assistance programs, and get the tests necessary to monitor his progress at a discount.

“This story could have had another ending. It was the proactive work of a group of HELP-4-HEP counselors who made the difference for this family,” said peer counselor, Sue Simon from Hepatitis C Association.

HELP-4-HEP is a project of The Support Partnership which includes HealthPro (formerly Hep-C ALERT), FL; Hepatitis C Association, NJ; Hepatitis Education Project, WA; Hep C Connection, CO; and Project Inform, CA. The helpline operates Monday through Friday, 9:00am to 7:00pm EST. To learn more, visit www.help4hep.org  or email info@help4hep.org.

877-HELP-4-HEP peer counselors are available to help your patients too. Palm cards are now available to distribute. Please email your organization’s contact name, site name, address, phone number, and the number of cards desired.

* Name changed.

Contact Information

The Support Partnership
Andi Thomas
954-692-0450
Contact
www.help4hep.org
Denny Simon
908-812-2488

Source

February 28, 2012

Janssen launch MYINCIVOTM support programme

Posted on:28 Feb 12

High Wycombe, UK, 27th February 2012: Janssen has today launched a new partnership with Bupa Home Healthcare which will support chronic genotype-1 hep C patients undergoing an INCIVO®(telaprevir) based treatment regimen (telaprevir in combination with peginterferon alfa and ribavirin).

Speaking at the launch of the MYINCIVO™ Support Programme, Dr Peter Barnes, Medical Director at Janssen stated: “We recognise that treatment for hep C can be challenging and demands significant commitment from patients. We also recognise that the addition of telaprevir, one of a new class of medicines which directly targets the hep C virus, to the current standard treatment adds another element of complexity. That is why today we are launching this programme to support patients 24 hours a day, 7 days a week for the full duration of their treatment if they are initiated on a telaprevir based treatment regimen.”

Before the introduction of protease inhibitors, of which telaprevir is the latest, treatment for genotype-1 chronic hep C cleared the virus in only about 50% of patients, leaving the other 50% without a successful outcome following 12 months of treatment1. Clinical trials have shown that a telaprevir based regimen is more effective than standard treatment in all genotype-1 patient types, including those with compensated liver disease such as cirrhosis. The addition of telaprevir to the current standard treatment (i.e. peginterferon alfa and ribavirin) cleared the virus in a significantly greater number of those patients who had previously been untreated (79% vs 46%, p<0.0001). In patients who had relapsed after previous treatment nearly four times as many cleared the virus in the telaprevir arm (84% vs 22%, p<0.0001)2,3,4. In addition, treatment naive patients and prior treatment relapsers who achieve undetectable levels of hep C virus RNA on testing at weeks 4 and 12 can have their total treatment duration reduced to 24 weeks from the current 48 weeks with standard treatment5. A key factor in achieving these results was good adherence to treatment5.

In developing the MYINCIVO™ Support Programme Janssen worked with Bupa Home Healthcare, healthcare professionals and patient support groups to ensure patients have access to confidential advice and support to help them adhere to their medication, to take care of themselves, stay motivated and in control while going through treatment. Most importantly, the MYINCIVO™ Support Programme is intended to complement the care being provided by a patient’s hep C specialist healthcare professional and helps with continuity of the patient’s care and support. The MYINCIVO™ Support Programme can also be accessed by patients’ partners, carers or family members as appropriate.

Dr Mehmood Syed, Medical Director at Bupa Home Healthcare stated: “Providing tailored support to get better health outcomes for the individual is at the heart of this programme. We want to empower patients so that they have more control over their health as well as provide them with dedicated medical expertise and support when they need it”.

The programme is personalised to the needs of the individual patient via the MYINCIVO™ case management platform and the MYINCIVO™ dedicated nurse team are experienced in, and trained to provide additional advice and support on many issues. The MYINCIVO™ support programme is completely confidential between the patient, their hep C specialist healthcare professional and BUPA. It includes support such as a SMS text dose reminder service (to promote adherence), health coaching (to motivate, promote adherence, health & wellbeing), advice and information including healthy living, foods to eat while on treatment and dealing with symptoms and side-effects specific to patients who have been prescribed a telaprevir-based regimen.

The overall safety and tolerability profile of telaprevir is based on the phase II and III clinical development programme. The most frequently reported moderate adverse reactions (incidence = 5.0%) were anaemia, rash, pruritus, nausea, and diarrhoea, and the most frequently reported severe adverse reactions (incidence = 1.0%) were anaemia, rash, thrombocytopenia, lymphopenia, pruritus, and nausea5.

Rash events were reported in 55% of patients with telaprevir based treatment compared with 33% in the control arm (peginterferon alfa and ribavirin only). More than 90% of rashes were of mild or moderate severity. Severe rashes were reported with telaprevir based treatment in 4.8% of patients. Rash led to discontinuation in 5.8% of patients. Anaemia was reported in 32.1% of patients compared with 15% in the control arm (peginterferon alfa and ribavirin only). It led to discontinuation in approximately 3% of patients5.

In the UK, it is estimated that 216,000 to 466,000 individuals are chronically infected with hepatitis C, a virus that is carried in blood and predominantly affects the liver, of which only 80,000 have been diagnosed6,7. Chronic hep C poses a public health burden. It is an infectious disease, with often no symptoms, that can lead to severe liver conditions. Of those who develop chronic hepatitis C an estimated 30% will develop cirrhosis (deterioration of the liver), others will develop liver cancer, some of whom may require liver transplantation1. Chronic hep C is the most common reason for liver transplants in Europe8.

* INCIVO® (telaprevir), a direct acting antiviral (DAA) protease inhibitor (PI), was co-developed by Vertex Pharmaceuticals and Tibotec, an affiliate of Janssen Pharmaceutical Companies of Johnson & Johnson, and the company responsible for marketing telaprevir in Europe.

For more information contact
Simon Goldsborough, Munro & Forster Mobile: +44 (0) 7973 272915
Ronan Collins, Janssen Mobile: +44 (0) 7876 257746
James Thompson, Bupa Home Healthcare Mobile: +44 (0) 7894 416 823

References
1. TA200: Peginterferon Alfa and Ribavirin for the treatment of chronic hepatitis C. Part review of NICE technology appraisal guidance 75 and 106. Issued September 2010
2. Jacobson, Ira M. Telaprevir for Previously Untreated Hepatitis C Virus Infection. N Engl J Med. 2011; 364; 2405-16.
3. Zeuzem, Stefan MD. Telaprevir for Retreatment of HCV Infection. N Engl J Med. 2011; 364; 2417-28.
4. Sherman et al. Duration of Initial Telaprevir Treatment for HCV Infection: A phase 3 study of treatment duration, N Engl J Med. 2011: 365; 1014-24.
5. Telaprevir Summary of Product Characteristics 2011.
6. Hepatitis C in the UK: Annual Report2011. London Health Protection Agency, July 2011
7. In The Dark: An audit of hospital hepatitis C services across England. The All-Party Parliamentary Hepatology Group, August 2010
8. Lang K, Weiner DB. Immunotherapy for HCV infection: next steps. Expert Rev Vaccines. 2008;7(7): 915-923

For more information:
http://www.janssen.co.uk/

Editor's Details
Janssen
Janssen
http://www.janssen.co.uk/

Last updated on: 28/02/2012 12:08:35

Source

February 23, 2012

Janssen launches hep C support programme

Published on 23/02/12 at 03:00pm

Janssen has launched a hepatitis C support programme for patients in the UK to help with medicine adherence and healthy living.

It is tailored for those taking Janssen’s hep C pill Incivo (telaprevir) along with Roche’s injectable interferon treatments Pegasys and Copegus.

The MYINCIVO support programme, which was launched this week, will be run with Bupa Healthcare.

Together they will offer an SMS text dose reminder service to help with drug adherence, promote healthy eating and lifestyle to manage the disease long-term, and help patients deal with possible side effects from Incivo.

MYINCIVO comes several months after Incivo was launched in the UK for patients with genotype-1 chronic hepatitis C.

Incivo is a new type or oral protease inhibitor for the disease, and competes with Merck’s oral hep C pill Victrelis.

Both drugs are undergoing a NICE appraisal to assess whether they should be routinely funded on the NHS in England.

Dr Peter Barnes, medical director at Janssen, said: “We recognise that treatment for hep C can be challenging and demands significant commitment from patients.

“We also recognise that the addition of telaprevir, one of a new class of medicines which directly targets the hep C virus, to the current standard treatment adds another element of complexity.

“That is why today we are launching this programme to support patients 24 hours a day, seven days a week for the full duration of their treatment if they are initiated on a telaprevir based treatment regimen.”

MYINCIVO is intended to complement the care being provided by a patient’s hep C specialist doctor. Patients’ partners, carers or family members can also access the programme, where appropriate.

This programme builds on Janssen’s hep C community site http://www.HelpEveryPersonC.co.uk/, which was launched last year.

This site provides interactive map data on the prevalence of hep C by locality, details of local support groups, treatment centres and stories from people living with the disease.

Ben Adams

Source

January 24, 2012

New National Hepatitis C Helpline Promises "One Call – Lots of Help"

Fort Lauderdale, FL, January 24, 2012 --(PR.com)-- A new national helpline, 877-HELP-4-HEP, run by and for people affected by hepatitis C will formally launch February 1, 2012. This new consumer resource is the result of a year-long collaboration among five national nonprofits with a combined 90 years’ experience in phone-based peer counseling.

Being diagnosed with hepatitis C creates many emotional and social challenges. It is especially complicated by the lack of comprehensive medical, mental health, and community support services. People with hepatitis C report spending countless hours trying to find a reliable support and information. Resources are few and often transient based on available funding.

Judi, one of the 877-HELP-4-HEP counselors states, “People with hepatitis C just can’t seem to get the help they need. Sometimes, I’m the fourth or fifth person they have spoken to. As a peer counselor, I can share common experiences and talk about different coping strategies and resources. When I was diagnosed I had many of the concerns and questions that they are having and since then have spoken to people with similar experiences. I can really set their minds at ease with answers to their questions that contribute to a sense of well-being and hope.”

Unique to 877-HELP-4-HEP (877-435-7443) are specially trained peer counselors using a structured approach to help callers navigate through screening, diagnosis, medical evaluation, and treatment. Follow-up contact by the counselors keep callers engaged at each step of their journey and help them make and follow through with their hepatitis C related decisions.

Additional HELP-4-HEP assets include an up-to-date national database of 25,000 referral resources and a secure shared caller database for counseling continuity. Andi Thomas, the helpline’s managing partner, stated, “What sets us apart is our standardized health messaging and the follow-up call feature. HELP-4-HEP is designed to maintain contact with callers to improve health outcomes as well as document and measure the impact of our services.”

HELP-4-HEP is administered by The Support Partnership whose mission is to improve the well-being of people affected by viral hepatitis through collaborations that increase service quality, access, and impact. Founding partners are HealthPro (formerly Hep-C ALERT), FL; Hepatitis C Association, NJ; Hepatitis Education Project, WA; Hep C Connection, CO; and Project Inform, CA.
877-HELP-4-HEP (877-435-7443) operates Monday through Friday 9:00am to 7pm EST. To learn more, visit www.help4hep.org or email info@help4hep.org.
###

Contact Information

The Support Partnership
Andi Thomas
954-692-0450
Contact
www.help4hep.org
Denny Simon
908-812-2488

Source

June 30, 2010

The Pros and Cons of the Virtual Hepatitis Community

From Charles Daniel, former About.com Guide

Updated June 22, 2009
About.com Health's Disease and Condition content is reviewed by the Medical Review Board

Joining a support group is a good way to learn about hepatitis (or any chronic disease) and to find out how other people work through the same problems you're probably having. Living with a chronic disease often requires lifestyle changes that seem overwhelming at first, but learning how other people handle them can make your life easier. Unfortunately, regularly attending a group may not be possible because of work or childcare schedules, or maybe there's just not a good group nearby. In this case, you could consider joining an Internet support forum. Are they just as good as a group that meets in person? As with most things, there are pros and cons.

Pros of Internet Support Groups

Anonymous. If you're uncomfortable letting others know you have chronic hepatitis, the virtual communities of the Internet offer relative secrecy and anonymity. For hepatitis, and any of the other stigmatized diseases, support forums can be places to post your questions and find information without revealing your identity. However, even though forums can be private, a good rule of thumb is never to post anything you absolutely wouldn't want to say aloud publicly.

Convenient. Even if you live in the biggest city that never sleeps, you can't find a support group that's always meeting. Traditional groups just can't compete with the 24/7 schedule of a virtual forum: they're always available. When you also take away the need to drive and park your car, the convenience of the online experience is unsurpassed.

Size. Traditional support groups tend to get difficult to manage if too many people attend. However, the Internet forum often thrives when hundreds participate. When more people log on, this means more eyes to read your posts and, hopefully, more responses for you.

Specific. Forums can be very specific. For example, there are online hepatitis groups for just women, or veterans, or Christians. Whatever your interests or identity, you can probably find a forum devoted specifically to that group. Of course, there are plenty of general forums, too, but at least you'll have the option. Maybe, you'll even consider joining several!

Cons of Internet Support Groups

It's Virtual. While anonymity is a benefit of the online forum, it's also one of its weaknesses. If you're like many others, you value personal interaction with people and you'll probably enjoy a higher quality of life if you get regular opportunities to meet with others.

No Oversight. Most support groups have an identified leader who is able to help guide the conversation and keep the conversation civil. While there are good moderated forums online, there are also many sites that have very little oversight and can quickly get out-of-hand. It's rarely helpful to participate in a forum where anything goes and people can say whatever they want or feel without regard to others.

No Affiliation. Many support groups have some affiliation, usually with a medical, community, or nonprofit organization, which helps to provide a level of credibility. These groups may follow a proven therapeutic model and have access to specially trained professionals. While virtual communities can have all this, too, it's likely that many don't.

Misinformation. Perhaps the greatest problem with Internet forums is the potential for misinformation. The above problems (anonymity, no oversight, and lack of affiliation) can easily lead to an environment where people can post all kinds of half-truths, misunderstandings, and flat out lies. While some forums have professional oversight, many have nothing that prevents someone from posting bad information. This puts a greater burden on you to choose a good forum with good qualities.

Ready to Join?
 
If you've made your choice, the next step is to find a good site and sign up. Here's a good place to start looking for Internet support groups. However, many people do both: participate in a regular group and an online site. No matter which you choose, here's help in finding the perfect support group.
 
If you've made your choice, the next step is to find a good site and sign up. Here's a good place to start looking for Internet support groups. However, many people do both: participate in a regular group and an online site. No matter which you choose, here's help in finding the perfect support group.
 
Suggested Reading
What Makes a Good Support Group?
How to Find the Perfect Support Group
Four Good Hepatitis Support Forums
 
Source