LiverHope

VOLUME 5, ISSUE 6                                                                                                                        JUNE 2003


Calendar

June 10th – “Update on Pegylated Interferon Alpha 2a (Pegasys) and Ribavirin (Copegus)”

S. Victoria Ricketts-Wilson1, R.Ph.,M.P.H. – Pharmacist and Clinical Specialist – Roche Pharmaceuticals

June 15th – LiverHope too – By Appointment

June 24th – Open Discussion

July 8th – My Liver Transplant Story”

Pat Foley – A Liver Transplant Patient

July 20th – LiverHope too – By Appointment

July 22nd – Open Discussion

liverHope Meetings are:

7:00 - 9:00 PM, 2nd and 4th Tuesdays unless otherwise noted.

Shepherd of the Hills Lutheran Church

3920 North Victoria Street, Shoreview, MN

 

LiverHope Too Meetings are:

7:00 – 9:00 PM, 3rd Sunday of the Month at Pat’s home:

901 Meadowwood Drive, Brooklyn Park, MN.  Please enter the door facing the driveway.  Call Pat at (763) 566-3839 for directions.

Our Thanks

to Kay Nickelson for a  very comprehensive and lively discussion of Side Effect Management, and to Preston Wilson for giving us an enormous amount of Hepatitis C Literature.  It was a very educational  and enjoyable evening.

Are you newly diagnosed or do you want more information about Hepatitis C?

-         Attend LiverHope too  -

-         By Appointment  -

-         July 20, 2003  -

 

 

In This Issue

 
 

 

 


Calendar.............................................................................................. 1

Senator Kay Bailey Hutchison and Senator Edward Kennedy Act to Protect Millions of Americans With Hepatitis C   1

Don't Forget This Infectious Killer................................................. 2

Drugs may Block Hepatitis Virus.................................................... 2

Help Wanted...................................................................................... 3

Evaluation of the 24-hour Decline in HCV Genotype 1 Viral Load to Predict Response to Pegasys Plus Ribavirin Combination Therapy    3

Nail Salons Ripe For Infection Outbreak....................................... 4

Beads Battle Liver Cancer................................................................ 4

May You............................................................................................. 5

Sad News............................................................................................ 5

 

Senator Kay Bailey Hutchison and Senator Edward Kennedy Act to Protect Millions of Americans With Hepatitis C

WASHINGTON --(BUSINESS WIRE)--May 23, 2003--Senators Kay Bailey Hutchison and Edward Kennedy today filed The Hepatitis C Epidemic Control and Prevention Act (S-1143), announced the National Hepatitis C Advocacy Council (NHCAC). This is the first federal response to the hepatitis C epidemic, the most common blood-borne viral infection in the United States. An estimated four million Americans are currently infected with the hepatitis C virus (HCV). HCV yearly costs are already at an alarming $15 billion dollars. That figure is expected to skyrocket to $26 billion by 2021.

Hepatitis C threatens the health of millions of Americans. NHCAC has worked to educate federal and state governments about the seriousness and magnitude of the hepatitis C epidemic. Approximately 85 percent of those who contract HCV remain infected for life, and an estimated 15,000 die each year. The annual death toll is expected to triple by 2010. There is currently no vaccine to prevent HCV infection.

The Hepatitis C Epidemic Control and Prevention Act is groundbreaking legislation. It will establish a comprehensive program for HCV public awareness campaigns, screening and counseling, early detection, professional education, and research. The program will be administered by the Department of Health and Human Services. State and local hepatitis C agencies will be supported to implement program activities.

The National Hepatitis C Advocacy Council is comprised of 22 hepatitis C groups from across the United States. NHCAC President Lorren Sandt commented: "This is a major step in achieving a key goal of NHCAC: increasing financial and infrastructure support for the delivery of hepatitis C prevention, education, and patient care services at a level commensurate with the impact of this disease. Chronic hepatitis C is completely preventable with sound public health policy in place."

NHCAC Government Affairs Chairperson Sharon Phillips added: "For the first time, we have a bill that will work for the millions of infected Americans. We congratulate Senators Hutchison and Kennedy for taking action now with S-1143 and providing the resources necessary to address this previously unfunded epidemic."

Cosponsors of this bipartisan bill include Senators Daschle (D-SD), Biden (D-DE), Smith, (R-OR), Johnson, (D-SD), Bingaman (D-NM), Breaux (D-LA), Campbell (R-CO), Clinton (D-NY), Cornyn (R-TX), Dodd (D-CT), Jeffords (I-VT), and Schumer (D-NY). A companion bill will be introduced in the House in the next few weeks.
 
Contacts:    
   National Hepatitis C Advocacy Council
      Lorren Sandt, 877/737-4372
      Andi Thomas, 954/931-8463
      Sharon Phillips, 903/235-0408

(Editor’s Note:  LiverHope is a member of the National Hepatitis C Advocacy Council (NHCAC) and is one of the 22 Hepatitis C groups mentioned in the above article. We were in Washington for the Council meetings and lobbying in the Senate and the House for support of this bill the week of May 17th-May 24th.)

Don't Forget This Infectious Killer

The New York Times - March 1, 2003, Saturday

 

DALLAS -- AIDS deserves our attention. But so, too, does another infectious disease, one that in the developing world is even more widespread than AIDS -- hepatitis.

 

Worldwide, 400 million people have hepatitis B, 10 times the number of AIDS cases, and 170 million have hepatitis C. Both cause chronic liver infection that can be fatal, especially in developing countries where treatment is rare and a liver transplant is beyond almost everyone's means. Hepatitis B and C are implicated in 80 percent of cases of liver cancer, the fourth most common cause of cancer deaths worldwide. Cancer resulting from these viruses appears to be increasing in most developing countries as well as in the United States.

 

While aggressive testing and prevention programs have slowed H.I.V. transmission rates in some countries, the spread of hepatitis in the developing world continues unabated. In Uganda, for instance, H.I.V. infection rates have diminished greatly because of public health programs that encourage safe-sex practices. The prevalence of H.I.V. there has declined from 30 percent of Ugandans in 1992 to 5 percent in 2002.

 

Over the same period, however, the rate of hepatitis B remained steady, and is now found in 12 percent to 15 percent of the population, three times the number infected with H.I.V. The true extent of hepatitis C in Uganda and the rest of Africa is still unknown because testing, though common for more than 10 years in the United States, has not yet become readily available in developing countries.

 

The lack of testing and treatment means that the disease will continue to spread as the infected unwittingly pass it on to their sexual partners, newborns and to hospital patients via blood transfusions. In the case of hepatitis B, the virus can be spread through living with a infected person.

 

Fortunately, it is possible to treat, and sometimes cure, people with hepatitis B and C. For that to happen in the developing world, however, testing must be made inexpensive, readily available and reliable. Seeing to it that tests are available at blood banks will lead to a reduction in hepatitis C transmission, as has been the case with H.I.V. and hepatitis B. Focusing on infected sex workers and pregnant women would be a cost-effective way to cut down on the transmission rates.

 

Some drugs being used in Africa against H.I.V. can also be used against hepatitis B. Treating H.I.V. without at the same time diagnosing and treating hepatitis B or C co-infection is foolish.

 

The push for hepatitis B vaccination is beginning in Uganda and elsewhere; the bad news is that there is not yet a vaccine for hepatitis C. Until such vaccines are widely available, hepatitis, as well as AIDS, deserves the world's attention.

Drugs may Block Hepatitis Virus

April 21, 2003

DALLAS (Ivanhoe Newswire) -- A new generation of drugs may restore the immune response blocked by the hepatitis C virus, which would reduce the virus to nearly undetectable levels in a matter of days.

 

The new protease inhibitors are already undergoing clinical trials as therapies to treat chronic hepatitis C infections. Protease is an enzyme required to process viral proteins into their functional forms. Researchers from UT Southwestern Medical Center at Dallas and UT Medical Branch at Galveston explain, "If you block the protease, it neutralizes the virus and restores the host response to infections, allowing the cell to clear the virus naturally."

 

According to the Centers for Disease Control and Prevention, 85 percent of people exposed to hepatitis C develop chronic infections that are unresponsive to therapy. Seventy percent of those with chronic infections develop chronic liver disease and nearly 3 percent with long-term infections die of related illnesses.

 

Investigators found the virus persists partly because it blocks the natural immune response of infected cells. They say new drugs could prevent the virus from blocking this immune response and restore the antiviral response in human cells. Other researchers note protease inhibitors active against the AIDS virus have revolutionized treatment of that disease.

 

Hepatitis C virus affects 4 million people in the United States, which makes it the most common blood-borne infection in the nation. It is the leading cause of cirrhosis and liver cancer, and accounts for more than 8,000 deaths each year in the United States.

SOURCE: Published online in Science Express, April 17, 2003

 

Help Wanted

 

Where:  Gay Pride Festival

Loring Park

Mpls, MN

 

When:    Saturday, June 28, 2002 - 10 AM to 8:00 PM

Sunday, June 29, 2002   - 12 Noon to 6:00 PM 

 

We’re still looking for volunteers to staff our LiverHope booth.  We’ll be offering free Hep C testing again, so we also need people who are certified to draw blood.  Please call Helen (952-933-0932) or Pat (763-566-3839) if you can spare a couple of hours to help us out.

 

Evaluation of the 24-hour Decline in HCV Genotype 1 Viral Load to Predict Response to Pegasys Plus Ribavirin Combination Therapy

The response to antiviral therapy in chronic hepatitis C can be measured at various time points. The 24h response to a single IFN dose (24hVR) identifies unresponsiveness to standard IFN/ribavirin therapy (a decrease in viral load of <0.8 log predicted nonresponse with 100 percent specificity (Jessner et al, Lancet 2001).

Early virologic response (EVR) after 12 weeks has a high predictive value to achieve a sustained response to 48 weeks of Pegasys (40kD-PEG-IFN alfa2a / ribavirin therapy. The Aim of this study was to investigate the value of 24hVR prospectively.

In an ongoing prospective trial which compares amantadine and placebo in addition to treatment with 180 microgram PEGASYS week + 1-1.2g ribavirin /day in chronic hepatitis C (genotype 1), patients are stratified according to the 24hVR at randomization (stratum A: >1.5 log decrease in viral load within 24 hrs; stratum B: 0.8-1.49; stratum C: < 0.8).

All patients had a liver biopsy and none had received an antiviral therapy before signing an informed consent. Currently all planned 220 patients were recruited, and 131, 101, and 35 completed 12,24, and 48 weeks of treatment, respectively.

In these patients the 24hVR was compared with the 12 week EVR, the 24-week and end of treatment response (each defined as HCV-RNA neg). Analysis was done without knowing to which treatment group a patient was assigned.

The 24hVR was performed 2 weeks prior randomization and was calculated from the decrease in viral load 24 hours following a single dose of 9 MU IFNalfa2a (Roche, Basel, CH).

Viral load was determined by the Cobas Amplicor Monitor HCV Test, v2.0 (Roche Diagnostic Systems, USA). The table below summarizes the data.

Conclusion: The 24hVR is a good predictor of the response to Pegasys/ribavirin therapy. Patients with predicted poor response to standard-IFN/ribavirin therapy may still achieve a virologic response on Pegasys/ribavirin therapy.

Virologic on treatment response (N HCV RNA neg/N total)

Stratum

week 12

week 24

end of Tx*

27/29 (93.1%) 

23/24 (95.8%) 

8/9 

35/49 (71.4%) 

37/44 (84.1%) 

17/17 

17/52 (32.7%) 

24/43 (55.8%) 

7/9 

p (A/B; A/C; B/C)           0.04;0.00001;0.0002          0.24;0.0016;0.008           

treated per protocol analysis, * only HCV-RNA neg pats. at week 24.

5/21/03   Reference
P Ferenci and others. Prospective Evaluation of The 24-hour Interferon-Induced Decline in Hepatitis C Virus Genotype 1 Load to Predict Response to Peginterferon-Alfa2a/Ribavirin Combination Therapy. Abstract T1211(poster). Abstracts of Digestive Disease Week 2003. May 17-22, 2003. Orlando, FL.

Nail Salons Ripe For Infection Outbreak

by Cathryn Conroy

Netscape News, Saturday, March 29, 2003

 

 

     For many women, one of the great luxuries of life is having their nails professionally manicured.  Caution might be the watchword.  A new study from Baylor College of Medicine in Houston concludes that regulation of hygiene standards at nail salons nationwide is poor, reports Reuters.  None of the 50 states or the District of Columbia require sterilization of the equipment even though trimming cuticles usually draws blood.  And when poorly trained technicians use dirty instruments, disease can easily be spread.

 

     Reuters reports that the foot baths used to soak customers' feet before a pedicure have a high potential to spread fungal and bacterial diseases.  That happened in 2000 when severe bacterial skin infections were linked to a single nail salon in California leaving 110 customers with disfiguring leg wounds.  "We were just waiting for an epidemic to happen because the conditions were ripe for an outbreak," lead researcher Dr Shelley Sekula-Rodriguez told Reuters.

 

     Seukla-Rodriguez surveyed the licensing and regulation procedures of state cosmetology and barbering boards.  Twenty-four states responded.

 

+ West Virginia and Alabama have the highest standards for nail salons, requiring use of a high-level, hospital-grade disinfectant to clean equipment for at least 15 minutes.

 

+ Connecticut is the most lax of all the states.  It does not regulate the industry and has no licensing requirements.

 

+ Kansas is the only state that requires technicians to wear gloves, which protects both workers and customers from blood-borne diseases.

 

+ Most of the states require nail salons to immerse instruments in a hospital-grade, low-level disinfectant for approximately 10 minutes, but Sekula-Rodriguez told Reuters this is not a sufficient disease-prevention measure.  For the instruments to be sterilized, they must be immersed in a high-level disinfectant for at least four to 10 hours.

 

     Why is the nail salon industry reluctant to adopt the proper cleaning and sterilization procedures?  Sekula-Rodriguez says if the salons were to follow the recommended cleaning procedures, they would have to stop using the equipment during business hours while it was being cleaned.  For example, to kill the tuberculosis bacteria that lurks in the pedicure baths, technicians must use a bleach solution for 10 minutes followed by a 10-minute wash with disinfectant - and this has to be done after each customer uses the pedicure bath.

 

     The study findings were presented at the annual meeting of the American Academy of Dermatology.

 

If you must go to a nail salon, be really cautious about the pedicures, if you must have it done.  For manicures, invest in a set of manicure implements and bring them with you

 

Beads Battle Liver Cancer

Wake Forest University, North Carolina is using microscopic spheres which release radiation directly into liver tumors. This selective internal radiation therapy is going on at six centers in the United States, with Wake Forest doing more than any other center in the world.

 

DURHAM, N.C. (Ivanhoe Newswire) –

Reported March 17, 2003

 

Chemotherapy can be an effective treatment for cancer patients, but it can leave people asking how well will it work and how bad side effects will be. A new way to treat liver cancer brings positive answers to both those questions.

Marilyn Routh and her husband Tommy were looking forward to retiring and spending time on their ranch.

"We were just all excited, couldn't wait. And, y'know, surprise, surprise, you have the 'big C.' It was like the whole world changed in one sentence," Marilyn tells Ivanhoe.

The big C was liver cancer. Standard chemotherapy helped but left Marilyn sick in bed. Then she learned of a new treatment called selective internal radiation therapy. Radiologist Robert Cirillo, Jr., M.D., injects microscopic spheres that release radiation directly into the tumor.

"Because these particles are so small, they only get trapped within the tumor, and then you won't cause the side effects that you normally get from chemotherapy because it's only going after the tumor itself and not the patient's normal liver," says Dr. Cirillo, of Wake Forest University Baptist Medical Center in Winston-Salem, N.C.

Marilyn had flu-like side effects at first. "After that wore off, I felt Goood. I was ready to take on the world," she says. It worked on her cancer, too.

Her scans from before and after treatment tell a lot, but not as much as the joy of being with her family.

 

Marilyn also receives standard chemotherapy to fight cancer in her stomach and esophagus. Wake Forest University is one of six centers doing this treatment in the United States -- and does more than any other center in the world.

This article was reported by Ivanhoe.com, who offers Medical Alerts by e-mail every day of the week. To subscribe, go to: http://www.ivanhoe.com/newsalert/.

 

If you would like more information, please contact:

Wake Forest University
Baptist Medical Center
Outpatient Radiological Clinic
(877) 276-2888

 

May You...

 

May you find serenity and tranquility in a world you may not always understand.

 

May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with optimism and courage.

 

Always know that there are those whose love and understanding will always be there even when you feel most alone.

 

May you discover enough goodness in others to believe in a world of peace.

 

May a kind word, a reassuring touch, a warm smile, be yours every day of your life, and may you give these gifts as well as receive them.

 

Remember the sunshine when the storm seems unending.

 

Teach love to those who know hate, and let that love embrace you as you go into the world.

 

May the teaching of those you admire become part of you, so that you may call upon them.

 

Remember, those whose lives you have touched and who have touched yours are always a part of you, even if the encounters were less than you would have wished.

 

May you not become too concerned with material matters, but instead place immeasurable value on the goodness in your heart.

 

Find time in each day to see the beauty and love in the world around you.

 

Realize that each person has limitless abilities, but each of us is different in our own way.

 

What you may feel you lack in one regard may be more than compensated for in another.

What you feel you lack in the present may become one of your strengths in the future.

 

May you see your future as one filled with promise and possibility.

 

Learn to view everything as a worthwhile experience.

 

May you find enough inner strength to determine your own worth by yourself, and not be dependent on another's judgments of your accomplishments.

 

May you always feel loved.

C 1987 Sandra Sturtz Hauss

 

Sad News

It is with great sadness that we pass along to you the fact that our friend, Pete Gilbertson (Da Yooper) died on March 17, 2003. Pete was just 52 years old and lived in Marionette, WI, near the Canadian border. Pete came to our hepfest the last two years and really showed us what a great sense of humor he had! He loved to talk in a Norwegian accent and tell Ole and Lena jokes. Pete served in the army in Vietnam and was so proud to be a veteran. He was in the process of being listed for a new liver and had an esophageal bleed. He went to the hospital, had minor surgery to stop it, but it failed and he fell asleep and died. He will be greatly missed by all of his friends and family.

 
 
LiverHope Support Group
Helen Clark & Pat Buchanan

Co-Facilitators

16807 Canterbury Drive

Minnetonka, MN 55345-2621

Voicemail: (763) 780-0108

Email: info@liverhope.com

Fax: (763) 566-0589

Website: www.liverhope.com

Helen: (952) 933-0932 – helen@liverhope.com

Pat: (763) 566-3839 – pat@liverhope.com

[1]  S. Victoria Ricketts-Wilson R.Ph., M.P.H., is a Clinical Specialist, Hepatology at Roche Laboratories Inc. She reviews investigator-initiated research proposals for scientific content, merit, methodology and safety and supports regional product information requests. She has a B.S. degree from the School of Pharmacy, Texas Southern University and an M.P.H from the School of Public Health and Tropical Medicine, Tulane University. She received a B.A. degree from the University of San Francisco. Ms. Ricketts-Wilson lives in Maple Grove, MN.