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HCV Advocate Newsletter

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May 2014 HCV Advocate

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In This Issue:

NEJM and EASL 2014
Alan Franciscus, Editor-in-Chief

Snapshots
Lucinda K. Porter, RN

HEALTHWISE: Hepatitis C: Ways to Fight Back
Lucinda K. Porter, RN



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NEJM and EASL 2014
—Alan Franciscus, Editor-in-Chief

An amazing amount of information about drugs in development to treat hepatitis C appeared both in the New England Journal of Medicine (NEJM) in April 2014 and as presentations at the recently held 49th EASL International Liver Conference held in London, Great Britain.  Information from prestigious scientific journals such as the NEJM is peer-reviewed and subjected to great scrutiny.  As a result, the information is generally more credible than information presented in abstracts or conference presentations.  This being the case, this article will begin with the articles released in the NEJM followed by the information presented at EASL 2014. 

A summary of the information from the NEJM will also be included in the Drugs in Development section of the HCSP Fact Sheets on our website.  Additional EASL conference coverage will also be available in our blog. 

AbbVie
There were 3 journal articles about Abbvie’s all oral medications released in the NEJM in April 2014—Phase 3 studies for the treatment of HCV genotype 1a & 1b (treatment-naïve, treatment-experienced, and treatment-experienced patients with cirrhosis).

The medications used in the studies included:

  • HCV protease inhibitor, 150mg ABT-450/r (ritonavir 100mg),
  • HCV NS5A inhibitor, 25 mg ombitasvir (formerly ABT-267),
  • HCV polymerase inhibitor 250mg dasabuvir (formerly ABT-333) and,
  • Ribavirin dosed by body weight. 

Note: ABT-450/r and ombitasvir are co-formulated into one pill, taken once-a-day.  Dasabuvir and ribavirin are taken twice daily.

#1 – Treatment Naïve (SAPPHIRE-I):

Patient Population:
There were two groups in this study—the information has been combined for this article.  There was a total of 631 patients who received at least one dose of the study drugs.  The majority of patients were male (344 pts), White (572 pts), and ~50 yo.  There were 427 patients with HCV genotype 1a and 204 patients with HCV genotype 1b.  There were no patients with cirrhosis.  The treatment duration was 12 weeks.  There were two different groups (group A and B) who were treated at different time points—group A received the Abbvie drugs at day 1.  Group B received placebo drugs at day 1 through week 12 and then received the Abbvie drugs beginning at the end of the 12-week placebo period.  This meant that they could have a comparator arm, but it also gave the placebo group an opportunity to receive the study drugs.  

Results: 
Overall cure rates were 96.2%—genotype 1a cure rates at 95.3%, and 98.0% in the genotype 1b patients.  The cure rates were comparable within all groups (HCV genotype subtype, viral load, race, IL28B).

Side Effects: 
The most common side effects were fatigue and headache.  The rate of serious side effects was low (2.1%) and the rate of treatment discontinuation was also low (0.6%).

Comments: 
The data speaks for itself—high cure rates across all populations with hepatitis C infection, low rates of side effects and very few treatment discontinuations.  In addition, the study design allowed the placebo group to receive the entire course of therapy with the Abbvie drugs after the end of the placebo period—this is a real win for everyone and I hope more pharmaceutical companies will provide this in their clinical studies.

#2 – Retreatment (SAPPHIRE-II):

Patient Population: 
There were 297 patients who received the study drug (97 patients received placebo).  I am only including the information from the group that received the study drug.  Most of the patients were male (167 pts), White (269 pts), age (~52 yo), genotype 1a (173 pts), and genotype 1b (123 pts).  The treatment duration was 12 weeks. 

Results: 

  • All patients – cure: 96.3% (cure rates the same in genotype 1a and 1b)
  • Relapsed patients – cure:  95.3%
  • Prior partial response – cure:  100%
  • Prior null response – cure:  95.2%

Side Effects:
The most common side effects reported in the group that received the study drugs vs. the placebo group were headache (36.4% vs. 35.1%) and fatigue (33.3% vs. 22.7%).  Itching occurred more frequently in the group that received the study drugs (13.8% vs. 5.2%). There were 1.3% treatment discontinuations.  

Comments:
These results are impressive especially in the group of prior null-responder patients who are the most difficult to cure—95.2% in the Abbvie drugs compared to historical cures of up to 53% with interferon and ribavirin-based therapies that included telaprevir, boceprevir or simeprevir. 

#3—Treatment-Naïve & Treatment-Experienced Patients with Compensated Cirrhosis (TURQUOISE-II):

Patient Population: 

  • Group A:  12 weeks of treatment—208 patients, the majority of patients were male (146 pts), White (199 pts), age (~57 yo), genotype 1a (140 pts), and genotype 1b (68 pts)
  • Group B:  24 weeks of treatment—172 patients, the majority of patients were male (121 pts), White (161 pts), age (~56 yo), genotype 1a (121 pts), and genotype 1b (51 pts)

Results:
The cure rates by type of prior response and treatment duration are listed in Table 1:

TABLE 1:  TURQOISE-II—Cure Rates by Treatment Group, Genotype Subtype (1a or 1b), and Type of Prior Response

 

(A) 12 Week Group

(B) 24 Week Group

HCV Genotype 1a

 

 

Treatment naïve

92.2% (59 of 64 pts)

92.9% (52 of 56 pts)

Prior null response

80% (40 of 50 pts)

92.9% (39 of 42 pts)

Prior partial responders

100% (11 of 11 pts)

100% (10 of 10 pts)

Prior relapsers

93.3% (14 of 15 pts)

100% (13 of 13 pts)

 

 

 

HCV Genotype 1b    
Treatment naïve 100% (22 of 22 pts) 100% (18 of 18 pts)
Prior null response 100% (25 of 25 pts) 100% (20 of 20 pts)
Prior partial responders 85.7% (6 of 7 pts) 100% (3 of 3 pts)
Prior relapsers 100% (14 of 14 pts) 100% (10 of 10 pts)

Side Effects:
There were more side effects in the 24-week treatment group—no big surprise there.  The most common side effects (in more than 18% of patients in both groups) were fatigue, headache, nausea and itching.  Two percent of the trial participants discontinued treatment due to side effects. 

Comments: 
As in the other Abbvie studies the cure rates are remarkable and the side effects were low—this is especially important in this group of patients who typically have higher rate and severity of side effects. The study found that most of the patients in the study had similar cure rates regardless of treatment duration.  The only group that may need 24 weeks of treatment with the Abbvie combination is the HCV genotype 1a prior null-responders—80% in the 12 week group vs. 92.9% in the 24 week group. 

It is also important to know that people who are typically excluded from studies (compensated cirrhotic patients with thrombocytopenia (low platelets), hypoalbuminemia [low albumin] or major depression) were enrolled in the study and achieved similar cure rates as those in the other study arms.  This is a patient population that is at the highest risk for severe disease progression, and treatment for this group should be a priority for the development of safe and effective drugs. This study proves that even these patients who are the most difficult to treat can be safely treated and cured.

Gilead
There were two journal articles about the all oral combination therapy being developed by Gilead that were recently published in the New England Journal of Medicine (NEJM).  The articles reported on Phase 3 clinical trial results for the treatment of chronic HCV genotype 1a and 1b in patients who were treatment-naïve and treatment -experienced. 

There were three medications used in the study:

  • Sovaldi (sofosbuvir) – polymerase inhibitor, 400 mg
  • Ledipasvir – NS5A inhibitor, 90 mg
  • Ribavirin – dosed twice a day based on body weight

Note:  Sofosbuvir and ledipasvir are co-formulated into one pill, taken once a day.  Ribavirin is dosed twice a day. 

#1. Treatment Naïve:  ION-1

Patient Population: 
A total of 865 treatment-naïve patients were treated with ledipasvir and sofosbuvir with and without ribavirin.  There were 4 treatment arms—2 arms in the 12-week groups and 2 arms in the 24-week treatment groups.   The patient population across all of the treatment arms was similar:  Male (55 - 64 yo), mean age (52% - 53%), White (82% - 87%), genotype 1a (66% - 68%), genotype 1b (31% - 33%), and cirrhosis (15% - 17%). 

The overall cure rates were 97% to 99%.  The cure rates are listed in Table 2 by drug combination and treatment duration. 

Table 2: ION-1

 

12-week Regimen
Cure Rates

24-week Regimen
Cure Rates

LDV-SOF

99%
(211 of 214 pts)

98%
(212 out of 217 pts)

LDV-SOF-RBV

97%
(211 of 217 pts)

99%
(215 of 217 pts)

*Ledipasvir (LDV); Sofosbuvir (SOF); Ribavirin (RBV)

Side effects:
The most common side effects were fatigue, headache, insomnia, and nausea.   There were no treatment discontinuations. 

Comments: 
This combination without ribavirin for 12 weeks works very well in HCV genotype 1 treatment-naïve patients.  

#2. Retreatment—ION-2: 

Patient Population:
There were a total of 440 treatment-experienced patients who were treated with the combination of ledipasvir and sofosbuvir with and without ribavirin.  There were 4 arms—2 arms in the 12-week groups and 2 arms in the 24-week groups. The patient population was similar across all treatment arms:  male (68% - 75%), age (~55 - 57 yo), White (77% - 85%), genotype 1a (78% - 79%), genotype 1b (21% - 22%), and cirrhosis (20% in all treatment arms).

The types of prior non-response—relapse or breakthrough, non-response to pegylated interferon, ribavirin therapy with and without protease inhibitor therapy—were similar within all arms. 

Results:
The cure rates across all arms were very high—94% to 99% regardless of type of prior response.  The results are listed in Table 3 below by drug combination and treatment duration.

Table 3: ION-2

 

12-week Regimen
 Cure Rates

24-week Regimen
Cure Rates

LDV-SOF

94%
(102 of 109 pts)

99%
(108 out of 109 pts)

LDV-SOF-RBV

96%
(107 of 111 pts)

99%
(110 of 111 pts)

*Ledipasvir (LDV); Sofosbuvir (SOF); Ribavirin (RBV)

Side Effects:
The most common side effects were fatigue, headache and nausea.  There were no treatment discontinuations due to side effects. 

Comments: 
The combination of ledipasvir and sofosbuvir continues to shine.  Based on these results it appears that the combination of ledipasvir and sofosbuvir for 12 weeks without the use of ribavirin is effective in HCV genotype 1 treatment-experienced patients—it’s hard to imagine a once-a-day pill for 12 weeks with minimal side effects.   But imagining this is even more difficult when you consider the high cost of sofosbuvir even without the addition of ledipasvir and the problems many people face with access to care or insurance that doesn’t provide any or enough coverage.  

Bristol-Myers Squibb (BMS)
BMS’s Phase 3  HALLMARK clinical trial enrolled HCV genotype 1b treatment naïve, treatment experienced, pegylated interferon ineligible or intolerant patients with and without cirrhosis, was presented.  About 32% of the patients in the study had cirrhosis.

The medications included:

  • Daclatasvir, NS5A inhibitor, 60 mg once a day
  • Asunaprevir, protease inhibitor, 100mg, twice daily

There were three different genotype 1b groups who were treated for 24 weeks.  The results are listed below.

  • 205 treatment naïve patients – the cure rate was 90% 
  • 235 pegylated interferon/ribavirin ineligible/intolerant – the cure rate was  82%
  • 205 non-responder patients – the cure rate was 82%

The cure rates were similar between the patients with and without cirrhosis. 

Side Effects:
The most common side effect was headache.  The treatment discontinuation rate was 1% - 4% due to side effects. 

Comments: 
These results are more good news in the treatment of hepatitis C—genotype 1b.  BMS announced that the combination of daclatasvir plus asunaprevir has been awarded “Breakthrough Therapy Status” by the FDA and that it had recently submitted an application to the FDA for marketing approval of this combination to treat genotype 1b.  It was also announced that BMS’s three-drug combination of daclatasvir, asunaprevir and BMS-791325 has also been awarded “Breakthrough Therapy Status.” BMS has stated that at the completion of the triple combination studies, they expect to submit the data to the FDA in the first quarter of 2015. 

Source:  Company Press Release

 

Janssen
The COSMOS clinical trial explored the combination of Olysio (simeprevir) and Sovaldi (sofosbuvir) with and without ribavirin to treat people with hepatitis C genotype 1.  There were two different groups or cohorts—one cohort in people who had mild liver damage (F0-F2) and the second cohort enrolled people who had more severe liver damage (F3-F4/ cirrhosis).  The treatment period for both groups was 12 weeks.  The first group with middle to moderate liver damage achieved cure rates of 93 to 96%, and preliminary data on the second group show similarly high cure rates.  The final results from the second group were presented at EASL and are listed below. 

The medications include:

  • Olysio (simeprevir), protease inhibitor, 400mg, once a day
  • Sovaldi (sofosbuvir), polymerase inhibitor, 150mg, once a day
  • Ribavirin, dosed once a day by body weight

There were 4 groups or arms in the study:

  • Group 1:  Simeprevir, sofosbuvir, ribavirin for 24 weeks
  • Group 2:  Simeprevir, sofosbuvir, ribavirin for 12 weeks
  • Group 3:  Simeprevir, sofosbuvir for 24 weeks
  • Group 4:  Simeprevir, sofosbuvir for 12 weeks

Patient Population:
There were a total of 87 patients in the study.  The majority of the patients were male (44% - 74%), White (81% - 97%, genotype 1a (75% - 82%), prior non-responders (50% – 57%) and cirrhosis (41% - 63%).

Results:
The overall cure rates were 93% to 100%.  The cure rates by group and treatment period are listed below in Table 4.

Table 4: Janssen

 

12-week Regimen
 Cure Rates

24-week Regimen
Cure Rates

SMV-SOF

93%
(13 of 14 pts)

100%
(16 out of 16 pts)

SMV-SOF-RBV

93%
(25 of 27 pts)

93%
(28 of 30 pts)

*Simeprevir (SMV); Sofosbuvir (SOF); Ribavirin (RBV)

Side Effects:
The most common side effects included fatigue, headache, nausea, anemia, itching, dizziness, rash and photosensitivity.  There was one patient who discontinued treatment due to side effects. 

Comments:
Although this was a small study the results are remarkable considering that the patients in the second cohort are the most difficult to treat.  This study proved that you can cure some of the most difficult to treat patients without ribavirin and for a treatment period of 12 weeks.  Janssen announced earlier this year that they would undertake Phase 3 studies of sofosbuvir plus simeprevir without interferon or ribavirin.  Recently, the American Association for The Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA) recommended this combination for retreatment of HCV genotype 1 patients who did not respond to pegylated interferon plus ribavirin (without an HCV protease inhibitor).  The recommendations from AASLD, IDSA, this study and future outcomes from the simeprevir/sofosbuvir Phase 3 studies will help to guide clinicians and patients to pick the most effective treatment options for HCV genotype 1 non-responder patients and those who have severe HCV liver disease progression. 

Note: See this month’s SnapShots column by Lucinda Porter, RN for a piece on the cost-effectiveness of this regime.

Source:  Company Press Release, NATAP www.natap.org

Merck
Merck released interim data at EASL from their Phase 2 study—C-WORTHy. 

The medications included:

  • MK-5172, protease inhibitor, 100 mg once-a-day
  • MK-8741, NS5A inhibitor, 50 mg once a day
  • Ribavirin, dosed twice daily based on body weight

Patient Population:
A total of 471 HCV patients (mono-infected & HIV/HCV coinfected) were enrolled into 16 study arms.  The treatment duration was 12 or 18 weeks. 

Interim Results:
Genotype 1—the percentage of people who were HCV undetectable at week 4 and 8 post-treatment: 

  • Treatment-naïve cirrhotic: without ribavirin—97% (28 of 29 and 29 of 30 pts) in the 12 and 24-week groups; with ribavirin 90% (28 of 31 pts) in the 12-week group; 97% (30 of 31 pts) in the 18-week group.
  • Prior non-responders (null) cirrhotic and non-cirrhotic:  without ribavirin—91% (30 of 33 pts) in the 12-week group; 97% (29 of 30 pts) in the 18-week group; with ribavirin—94% (30 of 32 pts) in the 12-week group; 100% (32 of 32 pts) in the 18-week group.
  • Treatment-naïve HIV/HCV non-cirrhotic patients:  without ribavirin–90% (26 of 29); with ribavirin 97% (28 of 29 pts).  Both groups were treated for 12 weeks.    

Side Effects:
The most common side effects were fatigue, headache, and muscle weakness.  There were no treatment discontinuations due to side effects. 

These results are impressive and Merck has started Phase 3 studies that will include genotypes 1, 4, 5 and 6 in HCV-moninfected and HIV/HCV-coinfected patients.  


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Snapshots
—Lucinda K. Porter, RN

Article: Cost Analysis of Sofosbuvir/Ribavirin versus Sofosbuvir/Simeprevir for Genotype 1 HCV in Interferon Ineligible/Intolerant Individuals – Liesl M. Hagan, et al.
  Source: Hepatology Accepted, unedited, not peer-reviewed March 28 2014; DOI: 10.1002/hep.27151

This year, the American Association for the Study of Liver Diseases and the Infectious Diseases Society of America released treatment guidelines for chronic hepatitis C. The recommended treatments for patients with genotype 1 who are interferon-ineligible or intolerant are sofosbuvir/ribavirin (SOF/RBV) for 24 weeks, or sofosbuvir/simeprevir (SOF/SMV) for 12 weeks. Both treatments are costly, and SOF/SMV is only available off-label, subjecting it to dispute over whether it should be prescribed and paid for by insurance.

The Bottom Line: Comparing the two treatments and analyzing the cost based on a model cohort of 50-year-old treatment-naïve and treatment-experienced subjects, SOF/SMV saved $91,590 per sustained virologic response (SVR) compared to SOF/RBV.

Editorial Comment: This gives hope to patients who need to be treated now, especially for those who cannot take interferon or ribavirin.  Sofosbuvir and simeprevir are well tolerated with approximately 90% SVR rates.

Note:  For more on this subject, see “Preparing for the Uncertain Yet Inevitable: Off-Label Combinations of Antiviral Agents in Hepatitis C Virus” by Andrew Aronsohn et al. Hepatology March 1, 2014

Article: Risk Factors for Hepatitis C Infection Among Vietnam Era Veterans Versus Nonveterans: Results from the Chronic Hepatitis Cohort Study – Joseph A. Boscarino, et al.
  Source: Journal of Community Health March 2014

Multiple studies indicate that the prevalence of chronic hepatitis C virus (HCV) among Vietnam veterans is higher than in other veterans and civilians. Studies attribute this higher rate to injection drug use. However, these studies collected data from veterans who use services provided by the Department of Veterans Affairs (VA), while most veterans don’t use the VA. This study surveyed 4,636 male patients with HCV seen in four non-VA medical systems.

The Bottom Line: Vietnam era veterans reported a lower incidence of injection drug use compared with non veterans (41% vs. 46%). Veterans were more likely to report other exposures associated with military service.

Editorial Comment: Veterans who believe they were infected with hepatitis C as a result of military service may be eligible for compensation. Claims may be submitted through the VA. For more information, see www.HCVets.com

Article: Coffee, Alcohol and Other Beverages in Relation to Cirrhosis Mortality: The Singapore Chinese Health Study – George Boon-Bee Goh, et al.
  Source: Hepatology Accepted, unedited, not peer-reviewed February 6 2014; DOI: 10.1002/hep.27054

There have been many studies suggesting that coffee may have a favorable effect on the liver. This large, prospective study of 63,275 middle-aged and older Chinese subjects found that daily coffee-drinkers (two or more cups/day) had a 66% reduction in cirrhosis-related mortality, but not among those with hepatitis B-related cirrhosis. Daily alcohol drinkers had a higher cirrhosis-related mortality risk than nondrinkers did. Black and green tea consumption was not associated with cirrhosis-related mortality rate.

The Bottom Line: This research adds more weight to the notion that coffee may have therapeutic value for patients with cirrhosis and for cirrhosis prevention.

Editorial Comment: This study adds new information about coffee and the liver. First, it suggests that potential liver-protective properties are related to caffeinated coffee and not to caffeinated teas. (We don’t know if decaffeinated coffee has potential therapeutic value for the liver.) Second, it is curious that this potential therapeutic value does not extend to patients with hepatitis B. This is probably not the last coffee/liver study we will see.

Article: Action Plan for the Prevention, Care, & Treatment of Viral Hepatitis – Howard Koh M.D., M.P.H., et al
  Source: U.S. Department of Health and Human Services and multiple agencies

This updated version of the U.S. government’s plan to confront viral hepatitis C is not new research, but is vital news affecting the hepatitis C community.  Some highlights of the 2014 Action Plan:

  • Formally institutes National Hepatitis Testing Day, which has been observed on May 19th since 2012. Supports World Hepatitis Day on July 28.
  • Endorses the CDC and the U.S. Preventive Services Task Force recommendations to test all individuals born between 1945 and 1965 for hepatitis C.
  • Pays greater heed to hepatitis C among persons who inject drugs. 
  • Opposes discrimination against health care professionals and students with chronic hepatitis.
  • Takes steps to facilitate in the development and access to new hepatitis C treatments. 
  • Employs efforts to combat chronic viral hepatitis in the U.S. through prevention, diagnosis, care and treatment to vulnerable populations. At some point in 2014, coverage for one-time HCV screening for persons born between 1945 and 1965 will be added to this list of preventable services, and thus covered by medical insurance.

Editorial Comment: Free screening for Baby Boomers will help reach the 25% - 50% of Americans who are hepatitis C-positive but do not know it. Implementation of this CDC recommendation is long overdue.


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HEALTHWISE: Hepatitis C: Ways to Fight Back
—Lucinda K. Porter, RN

As I write this, a friend with hepatitis C is dying. By the time you read this, she will be gone. She is not the first friend I’ve lost to hepatitis C, but I hope she is the last. I feel powerless and sad about her death, but I am not standing by helplessly. Pain is a call to action. I put a check in the mail to one of my favorite hepatitis C organizations, and began writing this article.

May is Hepatitis Awareness Month. The more we do, the better our chances are to save lives and prevent further spread of hepatitis C. Anybody can help, even those with little time, money, energy, and health. By anybody, I mean you.

We need everyone’s help—not just hepatitis C patients. Michael Ninburg of the Hepatitis Education Project in Seattle points out, “Chances are you know someone with hepatitis C... your mother, your uncle, your sibling, you? And chances are they don't know they have it. One in 30 Americans born between 1945-1965 is living with hepatitis C. Many younger Americans are also at risk. Get tested, get treated, get cured!”

What can we do to make a difference? I asked this question to some of the top hepatitis C advocates in the U.S. I’ll begin with Alan Franciscus, founder of the Hepatitis C Support Project and editor-in-chief of the HCV Advocate. “There are too few people who understand hepatitis C. I challenge people to commit to telling 10 people about hepatitis C and ask those they tell to tell 10 others.” Math tells me this can make a huge a difference.

Telling others about hepatitis C doesn’t take much effort. For example, anyone with email can include an automatic signature with a hepatitis C advocacy message. Michael Ninburg’s message about people being touched by hepatitis C rings true, and “get test, test treated, get cured” is a wonderful tag line. Perhaps you are brave enough to take this a step further. Alan urges, “We need to put a face to hepatitis C—the only way we can do this is by more people disclosing their hepatitis C status.”

Even hepatitis C patients with advanced liver disease or limited time and energy can make a difference. Heather Lusk, Director of Hep Free Hawaii and the CHOW Project in Honolulu suggests, “Tell your story.  Write it down, record and put it on YouTube or otherwise capture your experience.”  The HCV Advocate (www.hcvadvocate.org) and Hepatitis Magazine (www.hepmag.com) welcome stories. Residents of Hawaii can share their stories on Hep Free Hawaii.

We don’t tell our stories for our sake—we tell it for the sake of others. Chris Taylor, Associate Director of the Viral Hepatitis National Alliance of State & Territorial AIDS Directors (NASTAD) writes, “One of the most powerful things individuals can do is to talk with others about their experience living with hepatitis C. Sharing your experience reduces stigma and personalizes the epidemic. In addition to helping others feel less isolated, it can raise awareness of the needs related to hepatitis C prevention, testing, care, treatment, and research.”

Ryan Clary, Executive Director of the National Viral Hepatitis Roundtable (NVHR) echoes this point. “The only way to make sure that elected officials, the media, and the general public are aware of hepatitis C is for everyone to tell their story and show the face of those affected by the epidemic. Members of Congress need to know that their constituents are affected. The public needs to know that their family, friends, and neighbors are affected. The media needs to see the diversity and broad range of affected individuals. By telling our story, we can change the story.”

Even if you are sick or on hepatitis C treatment, you can change the story. Tracy Swan, Hepatitis/HIV Project Director for the Treatment Action Group (TAG) notes, “People can share their experiences through social networks; providing peer support and education is essential. Things that may seem simple, such as tips on how to deal with side effects, reimbursement and other "real-life" issues make a huge difference to other people who are living with the same issues. Being sick can isolate people instead of reinforcing the message that they are resources for their community.”

Connecting with others is a powerful tool. Alan Franciscus, who has been advocating for hepatitis C patients since 1997 notes, “Support groups can provide much needed guidance and support for people living with hepatitis C. Attend a meeting and share your experience with others. If you don’t feel you need support, you can lend a helping hand to others who need support.” The HCV Advocate website provides links to support groups; hepatitis C interest groups may be found on Facebook, Hep Magazine, Yahoo, and Google.

You can make a big difference with little effort. Daniel Raymond, Policy Director for the Harm Reduction Coalition suggests, “We want everyone with hepatitis C to have access to care and treatment, but that won't happen if they don't have access to health care in the first place. If your state isn't expanding Medicaid for low-income people, speak out! A simple email or phone call to your elected officials—local, state or federal—can be a powerful thing. On many issues, they interpret silence as apathy. Let them know you care about hepatitis C, and you expect them to care too.” 

Chris Taylor agrees. “Not everyone has time (or energy) to walk the halls of Congress to share their stories, but sending an email or letter, or making a telephone call to a Member of Congress, Governor, State Legislator, Mayor, City Councilor or Health Department Director can go a long way in raising awareness. For more information on things you can do, please review the Viral Hepatitis Advocacy Toolkit: 
www.cdc.gov/hepatitis/Partners/VHPC.htm
.”
This site also identifies the Viral Hepatitis Prevention Coordinators for every state, who you can contact to find out what opportunities are occurring in your area. 

Keeping abreast of hepatitis C advocacy opportunities is easy. The best place to start is NVHR, a coalition of more than 200 public, private and voluntary organizations dedicated to reducing the incidence of infection, morbidity and mortality from viral hepatitis in the United States. Ryan Clary says, “People can start by contacting NVHR (www.nvhr.org) and we will help connect them to an organization or support group in their area. They can also call Help-4-Hep, a national non-profit helpline, 1-877-435-7443 (www.help4hep.org).”

Tracy Swan mentioned a simple idea using downloaded literature from the HCV Advocate, “I have distributed fact sheets to non-English speakers and incarcerated people, who lack access to information.” Another idea from Tracy, “Many cities have events that people can join in. New York has lobby days where people have the opportunity to speak with their elected officials about the importance of hepatitis C and push for resources.”

The newest hepatitis C treatment and its exorbitant price tag have been dominating the news lately. This may create the impression that hepatitis C is going away—but it is not. Daniel Raymond reminds us, “We need to keep prevention on the hepatitis C advocacy agenda. We're seeing new infections on the rise again in a younger generation that needs the tools and knowledge to protect themselves. If everyone with hepatitis C and their loved ones advocated for more syringe exchange and drug treatment, it would send a powerful message.”

No matter what aspect of hepatitis C interests you, there are opportunities to get involved. I’d like to mention two hepatitis C advocates who are also changing the world, but did not have an opportunity to contribute to this article. First is Jules Levin of the National AIDS Treatment Advocacy Project (NATAP). Jules provides a special service to the hepatitis C community by keeping us up-to-date on the latest in news and research. Since knowledge is power, I highly recommend subscribing to NATAP’s updates.

Ditto for Jill Wolf, LCSW and Lorren Sandt of the Caring Ambassadors Hepatitis C Program. Their enthusiasm is contagious, exemplified in Jill’s words, “I have been working in HIV and prevention for 13 years. When I entered the hepatitis C field, a potentially deadly disease that has an opportunity for a CURE, it lit a fire under me. From a social workers standpoint, there is no other public health issue like hepatitis C because of the level playing field. HIV+, transgender, injection drug users are just as much at risk as middle and upper income heterosexual Baby Boomers, and this provides an opportunity to embed social justice at the heart of wellness.”

“If you can’t get involved, a great thing people can do is to support others, especially in your community. Many people who are working so hard to help those with hepatitis C are never thanked,” says Alan Franciscus. “Thank those who are working to improve the lives of those living with hepatitis C.” 

So let’s thank them. A great way to thank them is with your checkbook. Most hepatitis C organizations are doing big work with little money. An increased funding stream would help them do so much more than they are already doing. If you can’t spare any money, a simple “thank you” is still valuable. 

I was right about one thing—my friend would be dead by the time you read this, because she passed away before I finished this. She and 40 other people died from hepatitis C today. Tomorrow there will be another 41 hepatitis C-related deaths. These are conservative numbers, but they are far too high. You can do something about this. You can change the end of this story, if you get involved.  

Lucinda K. Porter, RN, is a long-time contributor to the HCV Advocate and author of Free from Hepatitis C and Hepatitis C One Step at a Time. Her blog is www.LucindaPorterRN.com

 



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