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July 2012 HCV Advocate

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In This Issue:

HCV Treatment and the Brain
Alan Franciscus, Editor-in-Chief

HCV Snapshots: DDW 2012
Lucinda K. Porter, RN

Disability & Benefits: SSD – Financial Eligibility
Jacques Chambers, CLU


HealthWise: Hepatitis C: One World, Many Faces
Lucinda K. Porter, RN



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HCV Treatment and the Brain
—Alan Franciscus, Editor-in-Chief

People living with hepatitis C suffer from a variety of complaints including fatigue, muscle/joint pain and cognitive issues commonly referred to as “brain fog” (poor memory, lack of concentration, etc.). These symptoms are generally found in people with hepatitis C regardless of severity of liver disease. 

For many people with hepatitis C, the cognitive issues are one of the most worrisome symptoms because they can affect almost every area of their lives.   The reason for the “brain fog” in people with hepatitis C is not fully understood.  Some experts believe that it could be caused by the immune response that is sending out immune system cells to attack and kill the virus.  Other experts theorize that it could be caused by the constant state of fatigue that many people with hepatitis C experience.  Still other experts believe that it may be a result of the hepatitis C virus crossing the blood brain barrier and causing inflammation and damage.  The last theory has picked up steam in the last couple of years and a new study is adding to a body of knowledge about the relationship between HCV and the brain.  But the big question is what can be done about it?  If “brain fog” is caused by the virus or the fatigue associated with HCV then treatment should help to alleviate or at least reduce some of the symptoms of “brain fog.”

With respect to the point that hepatitis C replicates in the brain—to date there have not been any rigorous scientific studies that clearly establish this fact.  For a review of some of the data on HCV and the brain read “Brain Fog: It Really Is All in Your Head,” by C.D. Mazoff, in the January 2012 HCV Advocate.

But a recent study, however,  at least leads some credence to the notion that treatment may help to improve some of the symptoms of “brain fog.”

V. Byrnes and colleagues studied 15 non-cirrhotic hepatitis C-infected patients with a variety of tests.  Seven HCV-infected patients were used as a control group.  All 15 patients were given brain imaging tests of three different regions of the brain before, during and after treatment as well as tests to evaluate verbal learning, memory, attention, language, executive functioning (overall cognitive processes) and motor skills (muscle and nerve coordination).  The control group also had the tests except that the tests were conducted 12-weeks apart.  Both groups had mild chronic hepatitis C disease progression.

The authors found that there were markers that showed “improvements in verbal learning, memory, and visuo-spatial memory,” and concluded that “HCV eradication has a beneficial effect on cerebral metabolism and selective aspects of neurocognitive function and is an important factor when contemplating anti-viral therapy in HCV, especially in those with mild disease.”

But not so fast, commented D.M Forton in an editorial titled “Hepatitis C treatment—Clearing the mind” that appeared in the same journal.  Dr. Forton remarked that while the study was important and interesting, it did not settle the important question of whether HCV infects and replicates in the brain and that HCV treatment could restore cognitive function.  He went on to remark that “the pilot study from Byrnes and colleagues is small but it serves to re-energise the debate as to whether there is a virological effect of HCV on brain function.”  He went on to comment that, “Further large studies are now indicated to determine whether successful antiviral treatment is definitively associated with improvements in brain biochemistry and function.” 

Personally, the thought of HCV infecting and replicating in the brain is frightening.  This is one theory that I hope is thoroughly debunked. 

References:

  • Effects of anti-viral therapy and HCV clearance on cerebral metabolism and cognition. Valerie Byrnes, Anne Miller, Damien Lowry, Erin Hill, et al. Journal of Hepatology, Vol 56, Issue 3, Pages 549-556, March 2012.

  • Hepatitis C treatment—clearing the mind. Forton DM. Journal of Hepatology, Vol 56, Issue 3, Pages 513-514, March 2012.



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HCV Snapshots: DDW 2012
—Lucinda K. Porter, RN

In May, Digestive Disease Week 2012 convened in San Diego. This month’s HCV Snapshots features some selected abstracts.

Important note: The research presented here came from conference posters and presentations, representing part of the story. There are many factors that influence treatment outcomes, such as the number of patients in the study, patient demographics (weight, age, ethnicity), and study design (inclusion criteria, placebo vs. open label, etc.) to name a few. Unless and until these studies are published in peer-reviewed journals, these data and conclusions are considered preliminary.

For more information about these and other presentations, visit www.ddw.org/

Abstract: Does Nonresponse/Relapse to Interferon-Based Therapy Affect Cirrhosis Development and Survival? - Lerrigo R, Arunkumar A, Ryan JC, et al.

The goal of this retrospective analysis was to evaluate long-term clinical outcomes among patients with chronic hepatitis C virus infection (HCV). The study looked at 336 patients, seen between January 1991 and June 2008 at the University of California, San Francisco. The average follow-up period was 8 years after the first liver biopsy. They were divided into 5 groups:

  1. untreated (n=176)

  2. sustained virologic responders (SVR) (n=53)

  3. non-responders (n=32)

  4. relapsers (n=30)

  5. those who were discontinued from treatment early (n=41)

The Bottom Line: There was a lower risk of death among SVR and non-SVR patients compared to untreated patients. Patients who tried HCV treatment had a decreased risk of death, even when SVR was not achieved, although achieving SVR offered a greater survival benefit.

Editorial Comment: Although this study sample is small, these results are consistent with similar studies, reinforcing the notion that there is potential benefit to HCV treatment regardless of the outcome.

Abstract: Spontaneous Clearance of the Hepatitis C Virus in Liver Transplant Patients – Agresti N, O’Brien CB

This is a retrospective analysis of HIV/HCV co-infected patients who underwent liver transplantation at the University of Miami from 1999 to 2010. All patients had confirmed HCV and HIV prior to transplantation. Four patients, all while on methylprednisolone and tacrolimus, spontaneously cleared HCV; two patients received HCV therapy prior to transplantation; two patients had not had any HCV treatment. The four patients that were co-infected were treated with HIV treatment regimen known as HAART: 4/4 efavirenz, 4/4 lamivudine, 2/4 zidovudine, 1/4 tenofovir and1/4 abacavir.

The Bottom Line: Medication combinations thought to have only antiviral action against HIV may actually have activity against HCV.

Editorial Comment: Spontaneous clearance of HCV may occur in patients with acute hepatitis C, but it is rare to see this once HCV has become chronic, especially after liver transplantation. It is quite unusual to see spontaneous clearance in HCV patients who also have HIV. Although this study is small, the implications are exciting and worth further investigation.

Abstract: Impact of Oral Silymarin Supplementation on Virus-Specific and Non-Virus-Specific T-Cells in Chronic Hepatitis C-Infected Patients – Doi H, Adeyemo O, Wirjosemito A, et al.

This double-blind, placebo-controlled National Institutes of Health study enrolled 32 patients; 10 received placebo, 11 received oral silymarin (milk thistle) 420 mg three times daily,  and 11 received oral silymarin 700mg three times daily. Researchers looked at ALT, HCV RNA and a variety of markers of immune response over a 16-20 week period.

The Bottom Line: Silymarin had no significant impact on ALT, HCV RNA or HCV-specific T-cell responses, but there was a possible impact of silymarin on some other immune system markers. Nothing was conclusive, other than the need for further study.

Editorial Comment: Perhaps I am exaggerating, but it seems like milk thistle studies can be summed up this way, “Milk thistle does not have a positive impact on HCV; milk thistle may have a positive impact on HCV; milk thistle does not have a positive impact on HCV; milk thistle may have a positive impact on HCV, etc.”

Abstract: Thyroid Dysfunction Triggered by Peginterferon Alfa-2B / Ribavirin Treatment of Chronic HCV Genotype 1 Infection Favors Sustained Virologic Response (SVR) - Mauss S, Hueppe D, Zehnter E, et al.

Typically, up to 15% of patients who participate in clinical trials develop thyroid abnormalities. This retrospective analysis evaluated data collected from 1923 genotype 1 patients who were treated with peginterferon and ribavirin for 48 weeks in real-life settings.

The Bottom Line: The results showed that 21% developed thyroid abnormalities. Women were more likely to develop abnormalities than men (26.5% vs 16.9%). Those who had thyroid abnormalities, particularly men, were more likely to achieve SVR.

Editorial Comment: Simply fascinating. It never occurred to me that this worrisome side effect might point to something good. More research and insight is needed on this.

Abstract: Herbal and Dietary Supplement Induced Hepatotoxicity in the U.S – Navarro V, Barnhart H, Bonkovsky H, et al.

Researchers looked at data from 2003 to 2011 from the Drug Induced Liver Injury Network collected from eight sites in the U.S.

The Bottom Line: Dietary supplements accounted for 18% of liver injuries. The majority (66%) were hospitalized; 7% resulted in liver transplantation. Supplements were used for bodybuilding (33%), weight loss (26%) as well as other purposes.

Editorial Comment: Dietary supplements can damage the liver and other organs. It is strongly recommended that HCV patients talk to their healthcare providers before taking supplements. 


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Disability & Benefits: SSD – Financial Eligibility
—Jacques Chambers, CLU

There is often confusion about the eligibility requirement for disability benefits from Social Security. This is due to the fact that Social Security offers two plans that provide income to a disabled worker.

  • Supplemental Security Income (SSI) is a needs based program that requires proof of limited income and resources in order to qualify for benefits.

  • Social Security Disability (SSDI or SSD), and also called Disability Insurance Benefits (DIB), also has financial requirements, however, since SSD is an entitlement program its financial requirements are based on whether you paid into the Social Security system. SSD is only available to you if you are disabled and if you meet the one financial eligibility requirement: Did you pay Social Security payroll taxes (F.I.C.A.) long enough and recently enough to qualify?

This article focuses on the financial requirement which must be met to be eligible for SSD, in addition to being totally disabled. Social Security doesn’t care whether you are rich or poor or what your resources or other income are, as long as you meet the one financial requirement and are considered disabled. If Bill Gates or Mark Zuckerberg became disabled, they would be eligible for SSD benefits, assuming they paid into the Social Security system. 

The Easiest Way to Determine Financial Eligibility
Social Security used to send out an annual statement to each person paying into the system called a Summary of Earnings and Benefits. It listed your earnings by year that were subject to F.I.C.A. payroll deductions. It also projected the amount of monthly benefit you would receive at Normal Retirement, early retirement, retirement with dependents, and an estimate of your benefit if you became disabled.

That annual mailing was discontinued for economical reasons; however, it is still possible to quickly and easily get your personal information about your earnings on line. You can sign up by going to www.ssa.gov/mystatement. To register, you must have a Social Security number, email address, and a U.S. mailing address. You must be at least 18 years of age. You will need to create a user name and password and set up three security questions. If you prefer, you can set up an optional, additional level of security where a special code, which you will need to enter your personal statement site, will be sent to your cell phone by text message.

If getting the information on line is not comfortable or convenient, you may also obtain a form to request the Statement at any Social Security office. You can locate your nearest office by going to www.ssa.gov, and clicking on the “Locate a Social Security Office” at the bottom of the “Top Services” column on the left side of their home page. Enter your ZIP code and it will give you the address of your nearest office. 

SSD Financial Eligibility Rules
Like all government programs, the rules for determining financial eligibility can get very involved, but the average worker need not worry about the complicated details and can rely on the financial statement. However, the details of how eligibility is calculated are given below.

Social Security actually measures what they call “work credits” rather than actual calendar quarters in determining eligibility. 1 work credit equals one calendar quarter as long as you earned the minimum required earnings for that quarter. You can earn up to 4 work credits each calendar year without having to work all four quarters.

If Your Employment Was Full-Time and Steady…

If you have been employed on a full-time basis, fairly continuously, the following determines your financial eligibility:

  • If you become disabled before age 24, you generally need to have paid F.I.C.A. payroll taxes in six calendar quarters during the three-year period ending when your disability begins.

  • If you’re between the ages of 24 through 30, you generally need to have paid payroll taxes for half of the period between age 21 and the time you become disabled.

  • If you’re disabled at age 31 or older, you need to have paid F.I.C.A. payroll taxes in the number of calendar quarters shown in the table below.

Disabled At Age

 Work Credits Needed

31 through 42

20

43-44

22

45-46

24

47-48

26

49-50

28

51-52

30

53-54

32

55-56

34

57-58

36

59-60

38

61 or older

40

Also, at least 20 of those calendar quarters have to have occurred within the 10 years (40 quarters) immediately before you became disabled. If you do not meet this requirement of recent payments, you are NOT eligible for SSDI benefits. Your retirement will still be available, but not SSDI until you have accumulated enough recent quarters.

For example, if you are 44 years old, and you have been working steadily and paying F.I.C.A. taxes since you were 20, you are eligible for SSD benefits if you are disabled since you have well over 22 quarters including the most recent 40 quarters.

Another example: You become disabled at age 50. For the past 6 years you were a school teacher and did not pay F.I.C.A. payroll taxes. Before that you worked in private industry and paid F.I.C.A. taxes for over 20 years. You ARE NOT ELIGIBLE for SSD benefits. Although you paid F.I.C.A. taxes for more than the 28 quarters required for your age, only 16 (4 years) of the quarters were paid in the last ten years instead of the required 20. (You will still be eligible for retirement benefits, however.)

If Your Employment Was Part-Time or Irregular…

So if some of your work history was part-time or your income otherwise low, then you need to know how much you actually earned or how much you paid in payroll taxes.

Earnings Needed to be a Work Credit

The minimum amount of earnings changes each year. Below is a table that shows the minimum quarterly earnings required for each quarter to count as 1 work credit. You can accumulate four Work Credits in each calendar year.

Table 2: Income That Must Be Earned


Year
EARNED

Amount of wages or self-employment income that must be earned in order to acquire a work credit of coverage

1978

$250

1979

$260

1980

$290

1981

$310

1982

$340

1983

$370

1984

$390

1985

$410

1986

$440

1987

$460

1988

$470

1989

$500

1990

$520

1991

$540

1992

$570

1993

$590

1994

$620

1995

$630

1996

$640

1997

$670

1998

$700

1999

$740

2000

$780

2001

$830

2002

$870

2003

$890

2004

$900

2005

920

2006

970

2007

1,000

2008

1,050

2009

1,090

2010

1,120

2011

1,120

2012

1,130

You don’t have to work in all four calendar quarters of that year to get 4 work credits, as long as your earnings in that year are four times the quarterly minimum for that year or greater. However, you can never earn more than 4 work credits in any one calendar year.

If You Are a Veteran of the Military…

Veterans of the military are eligible to receive extra work credits based on their active duty.

Period When On Active Duty

Extra Amount Counted Toward Work Credit As If It Were Earned Wages

Between 09-01-1940 and 12-31-1956

$ 160 for each month of active duty

 

 

Between 01-01-1957 and 12-31-1977

$ 300 for each quarter of active duty

 

01-01-1978 and After

$100 for each $300 of actual military pay up to a maximum extra credit of $1,200 per year

All these rules may seem daunting, but remember:  If you have worked most of your adult life and paid F.I.C.A. through your paycheck, chances are you will be eligible for Social Security Disability (SSD) if you become unable to work. If there is any doubt about your financial eligibility, it is important that you obtain your statement to make sure you have the right amount of Work Credits to qualify for Disability. Also, Social Security will advise you early in the process if there is a problem with financial eligibility.


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HEALTHWISE: Hepatitis C: One World; Many Faces
—Lucinda K. Porter, RN

Hepatitis C is a worldwide problem. In recognition of World Hepatitis Day (July 28), Healthwise will discuss the global nature of hepatitis C virus infection (HCV). Although many HCV Advocate readers live in the U.S., our audience is international. This month I invited people to talk about hepatitis C in their countries.

According to the World Health Organization (WHO), 130–170 million people have chronic HCV, claiming more than 350,000 annual deaths. The countries with the highest prevalence of HCV are Egypt (22%), Pakistan (4.8%) and China (3.2%). Unsafe injections using contaminated equipment are the most common transmission routes.

Egypt
The country with the highest prevalence of HCV is Egypt. Reports about prevalence vary, but using population data of 81 million people, coupled with WHO’s 22% estimate, then approximately 18 million Egyptians have HCV. A heartbreaking reality of Egyptian life is that nearly 1 in 4 people live with this disease, mostly due to unsanitary medical practices.

How did this happen? The roots began before 1986 because of another disease — schistosomiasis, also known as bilharzia, a common parasite found in contaminated water. The symptoms are awful, leading to multiple organ damage and chronic problems. Think of worms living and laying eggs in your body and you get the picture.  

In a campaign to treat schistosomiasis, HCV was spread via inadequately sterilized glass syringes and needles. Once HCV infected so many people, it was passed via other medical and dental practices. The majority of HCV cases in Egypt are genotype 4. Because chronic HCV is so common, it is one of the leading causes of death, usually due to liver cancer or cirrhosis.

One Egyptian commented, “With this much HCV, one can only imagine how many more people were infected during the Arab Spring.” It was at that point that I stopped my research and had a good cry.

Amina Ghanem was diagnosed with HCV in 2003, probably from a blood transfusion in 1981. After becoming informed, she sought treatment. However, her doctor prescribed an inadequate dose of medication and she didn’t clear the virus. “I changed doctors and got a higher dose antiviral, but didn’t clear again. I was already into my sixth month, so he increased the dose to 1400 mgs, and added a second antiviral, amantadine. (Editorial note: Amantadine is not approved to treat HCV in the U.S.) When I finally responded, my doctor decided that I continue for an additional 8 months, bringing treatment to a total of 15 months.”

She mentioned that HCV-positive Egyptians cannot be insured. (Editorial note: this is a common U.S. practice too.) Amina wrote, “At that time, each shot cost LE 700 (US $125). (Editorial note: This is a huge amount of money for the average Egyptian.) The antiviral was free. Medication was not easily available at the time, and sometimes I had to search for pharmacies that had the drugs.”

Pakistan
Population data from 2011 states that Pakistan is the 6th most populated country in the world. Using WHO’s estimate of nearly 5% prevalence rate, there are more than 9 million people in Pakistan with HCV.

Muhammad Nauman Shahzad Sahiwal from Punjab, Pakistan wrote, “Its prevalence is increasing day by day and there is poor awareness about hepatitis. The government has little interest to help hep C patients.” He also voiced a concern about copied versions of peginterferon being marketed in Pakistan for which there is poor safety data.

Zoheb Ali, on the staff of the Sindh Health Department’s Hepatitis Prevention Control Program in Karachi, emailed me between power outages, a common occurrence in Pakistan. He reported that hospitals spread HCV because equipment is not as sterile as it should be. This also occurs in labor and delivery and dental practices.

Barbers and beauticians use the same blades as they can’t afford the sterilization process. Nose piercing is a common practice among Pakistani girls, and body-piercing utensils are not sterile.  As in many parts of the world, needles and syringes used by injection drug users are contaminated and shared. There is no safe medical waste disposal program. Efforts to improve HCV are hampered by lack of awareness, low literacy, and corruption. Link to Hepatitis Prevention and Control Program www.hpcp.com.pk/

Muhammad Arif Khan, Chairman of Muhammad Yar Welfare Foundation in Pakistan wrote, “One of the main causes of the spread of HCV is that the average person cannot afford to pay for hepatitis testing let alone its treatment. Millions of Pakistani sufferers await the proper implementation of a national program to control the deadly disease.” For more information, visit: www.facebook.com/myfoundation

China
As the country with the highest population, more people in China have HCV, despite the fact that it is 3rd on WHO’s prevalence list. More than 41 million people have HCV. Add to that the fact that around 170 million people in China have hepatitis B and you have a country with a high incidence of liver disease.

Other Countries
Paul Harvey from New South Wales writes, “Australia’s Medicare program provides public access to medicines and we have enjoyed good access to hep C treatment over the last couple of decades. Patients pay an administrative payment of $20-30 per month. In tandem with access to treatment, Australian governments have funded community organizations, such as Hepatitis NSW, to provide information, support, referral, training and referral services.  Hep C stigma is still a real issue for us. Stories of people being shunned or sacked after coming out as HCV-positive still occur. Public awareness campaigns have helped but discrimination remains a challenge.”
I reached Paul through Hepatitis NSW’s Facebook page, which proudly displays a banner declaring, “Our Vision:  A World Free of Viral Hepatitis.” I couldn’t have put it any better. www.hep.org.au/index.php?article
=content/home

From Croatia, World Hepatitis Alliance Board Member, Dalibor Ruzic discussed some of the projects in Europe and worldwide, too numerous to list. He pointed out one of the slogans for this year’s World Hepatitis Day: “It is closer than you think.” I assume they mean the date and the disease. Link to European Liver Patients Association www.elpa-info.org/

An activist from Jerusalem wrote, “It isn’t that hard to get treatment in Israel, the problem  is the bureaucracy you have to go through to get financial help. In Israel, the current treatment for HCV is Pegasys and Copegus, their price is 5 to 7 thousand shekels each (approximately $1280-1800 US). Every citizen of Israel must subscribe to an Israeli Public Health center. The price is low and they cover most of the treatment cost. I used to pay 270 shekels (around $69 US). Lack of awareness is a big problem in Israel; when someone does hear about it their first reaction is fear of contagion.”

From Jordan, Doaa Kaddomi writes, “HCV treatment in Jordan consists of peginterferon and ribavirin; boceprevir and telaprevir are not available to the general public yet. HCV treatment costs the patient a nearly insurmountable sum of $1300 USD every month. Not All Jordanians are fully insured and/or covered by the government insurance. Although treatment is available in all public hospitals, limited budget in purchasing these medications means that not all patients are treated. As a member of the Friends of Liver Diseases Society, it is our passion to help in educating and treating every single hepatitis patient but due to scarcity of resources, this cannot be done all the time.”

Nady Chaïa of Lebanon was motivated by his own struggle with HCV to get involved, leading him to form Hép attitude positive. “It is not hard to get treatment but there are few choices. Peginterferon plus ribavirin is available; Victrelis (boceprevir) is being registered. Treatment is provided free by public agencies, unless the patient does not qualify, in which case, the patient has to cover drugs costs, around $500 USD per injection. Stigma is a huge problem in this country.” Hép attitude positive provides moral support, test costs and prevention. www.hepattitudepositive.org/

A Facebook post from Nigerian Ose Ugbebor has this to say: “Is World Hepatitis Day just about raising awareness? No! The World Hepatitis Alliance has developed a wide-ranging integrated campaign, including initiatives focused on driving policy change both at an international and national level… governments should commit to including hepatitis in their public health policy plans.”

Commenting from Canada, HCV activist Daryl Luster in Vancouver, BC writes, “My view on HCV is that it is one of the most urgent world health issues we face, and will face in the years ahead. As individuals and their respective health care systems struggle to find funding for treatments, the problem will worsen. I support awareness of this life stealing disease, and I am also aware of the fact that decent treatment options are not available to all equally.” Daryl is devoted to HCV issues, particularly World Hepatitis Day.  www.hepcawareness.com/

Joseph Risenhoover of East Wenatchee, WA writes, “If you speak of swine flu, mad cow disease, globally the countries go nuts. But due to the lack of awareness about a disease that is killing more people then HIV, you hear nothing. Let’s make this come to an end. Hepatitis C Awareness for the World.”

Lucinda K. Porter, RN is the author of Free from Hepatitis C

A special thanks to Beverly Fatima Burke from Quebec. Beverly, also known as the “Hepatic Muslim,” is also known for being kind and generous. Her help made it much easier for me to write this article.


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