UMDNJ Resources

Update on HIV and Hepatitis C Virus Co-Infection

Hepatitis C and HIV
Resources and Information

HIV and Hepatitis.com

http://hivandhepatitis.com

This website provides summaries of key news articles and conference reports, updates on new Anti-HCV Therapies in Development, and treatment summaries for both clinicians and consumers

Notable quote:

“Despite the improvement in hepatitis C therapy offered by the pegylated interferons Pegasys and PegIntron, more than half of individuals with chronic hepatitis C do not achieve a sustained response from these treatments, which also are relatively expensive and may produce serious or even life-threatening adverse events. In addition, certain patient groups experience consistently inferior virological responses to combination treatment with interferon and ribavirin, including African Americans, persons with genotypes 1 and 4 and HIV-HCV coinfected individuals.”

Ronald Baker, PhD, publisher and editor in chief of HIV and Hepatitis.com

CDC Viral Hepatitis webpage

Hepatitis A, B and C Resource Center:

http://www.cdc.gov/ncidod/diseases/hepatitis/

Free patient and provider materials including pamphlets and slide sets, surveillance guidelines and reports, and frequently asked questions

http://www.cdc.gov/ncidod/diseases/hepatitis/resource/index.htm

Syringe Disinfection for Injection Drug Users

“The central message is that disinfection is a back-up prevention strategy if the user cannot stop injecting; does not have a new, sterile syringe; and is about to inject with a syringe that has been used before.”

http://www.cdc.gov/idu/facts/disinfection.htm

The Ribavirin Pregnancy Registry

This is a voluntary Registry established to collect and evaluate pregnancy exposures to ribavirin, and assess any birth defects occurring in outcomes of pregnancy exposed to ribavirin in-utero. Pregnancy exposures to ribavirin include those occurring during pregnancy or up to six (6) months before conception, and indirect exposures through a male sexual partner who has taken ribavirin.

Toll-Free: (phone) 800-593-2214 (fax) 800-800-1052

E-Mail: registry@nc.crl.com

http://www.ribavirinpregnancyregistry.com

AIDS InfoNet

The AIDS InfoNet is a project of the New Mexico AIDS Education and Training Center in the Infectious Diseases Division of the University of New Mexico School of Medicine. The InfoNet was originally designed to make information on HIV/AIDS services and treatments easily accessible in both English and Spanish for residents of New Mexico, and has become an international HIV/AIDS information resource. http://www.aidsinfonet.org

Fact Sheet Number 507: Hepatitis C and HIV:

http://www.aidsinfonet.org/articles.php?articleID=507

Notable quote:

“Almost all cases of hepatitis C could be cured if treatment with interferon starts very soon after infection. Unfortunately, early signs of hepatitis can seem like the flu. Most cases are not diagnosed until years after infection.”

NATAP: National AIDS Treatment Advocacy Project

http://natap.org

  • The NATAP Reports newsletter
  • The Women’s Program: Provides Women specific treatment information
  • Daily Worldwide E-mail Treatment Updates on both HIV & HCV
  • NATAP Community Treatment Education Program: on-site education in English and Spanish for community based organizations.
  • Additional periodicals & printed brochures: “The Hepatitis C and Hepatitis C-HIV Co-Infection Handbook” (In English & Spanish), “What you need to know about HIV/HCV coinfection”and Fact Sheets are available free on website.

Hepatitis C in New Jersey:

New Jersey Strategic Plan for Hepatitis C Prevention And Control [January 2005]

http://www.state.nj.us/health/cd/hepatitisc_strategic_plan.pdf

“CDC estimates that 1.8% of Americans are infected with HCV, the most common bloodborne infection in the United States today. In New Jersey, 1.8% would translate to roughly 155,000 infected persons. However, these statistics probably do not adequately reflect the full extent of the problem. Hepatitis C has been a reportable disease in New Jersey since 1998, and the number of reported cases has increased annually. In 2003 in New Jersey, there were 3,300 reported cases of newly diagnosed hepatitis C. There were 2,200 cases reported in 2002. However, it is estimated that New Jersey’s true incidence of hepatitis C is grossly underreported and underdiagnosed. Information on race, risk factor, ethnicity, comorbidity and treatment data are lacking for most of our reported cases.”

Patient Assistance Programs for HCV Therapy from Drug Manufacturers: Pegylated Interferon and Ribavirin

If you cannot get reimbursement or coverage for pegylated interferon and ribavirin, the manufacturers have reimbursement programs which supply free drugs if you qualify. These programs will first help you try to identify sources for reimbursement.

• Schering makes Peg-Intron and ribavirin (Rebetol):
1-800-521-7157
http://www.peg-intron.com

• Roche makes Pegasys and ribavirin (Copegus):
1-800-387-1258
http://rocheusa.com/programs/patientassist.asp

NJ Physicians Treating Hepatitis

Hepatitis-Central:
http://hepatitis-central.com/hcv/drs/nj/toc.html

HIV/AIDS Medical Update Series:
Healthcare Provider Training

To schedule a free 1-hour HIV medical education program at your health care site on HIV/AIDS and Hepatitis C Co-Infection or any of the other topics in the HIV/AIDS Medical Update Series, contact Debra Bottinick at (609) 921-6622 or dbottinick@academycme.org. See page 20 for more information about this series

Hepatitis C Harm Reduction Project

A Resource for Drug Users sponsored by the Harm Reduction Coalition: fact sheets, blogs, tips

http://hepcproject.typepad.com/hep_c_project

Treatment from a Consumer and Treatment Advocate’s Perspective*

Advice from an interview with a long-time treatment advocate, educator, and outspoken consumer of HIV and Hepatitis C treatment:
  • Learn about your liver, and the stage of your hepatitis. Read about it, talk to your doctor, talk to other people who are co-infected and have been on treatment.
  • Weigh treatment of your Hepatitis C and its side effects against the severity of its current stage: can I wait till better treatment comes along, or do I need to be pro-active and keep my liver disease from progressing?
  • Get your HIV under good control first, unless your liver is in danger.
  • Get support before you begin treatment, and plan how you will manage this complex regimen, remembering:
    • You need a support system: friends, family, religious leader or community, medical team, life partner, support group.
    • You may have low energy and poor appetite: ask friends and family to help with prepared food, check-in calls.
    • Many physicians managing HIV and HCV choose to prescribe anti-depressants before beginning HCV treatment, to ward off depression before it can become serious. If you have any concerns about your mental health, especially if you’ve ever been depressed, be sure to talk about it with your doctor and the treatment team, and get into treatment before you start Hep C treatment.
    • Drink lots of water! And remember to eat even if you don’t feel hungry.
    • Write down everything: lab tests, treatment options, prescriptions and directions, symptoms including mood changes.
    • Know whether injecting yourself 1-3 times a week will be a relapse trigger: if you used to inject drugs, you may need to get some extra support for staying clean and sober.

“Why did I decide to start treatment? I wanted to preserve my liver and contain the damage. I knew I was filtering a lot of HIV meds through my liver and I knew I would benefit from hepatitis treatment. The first time, it didn’t work. I was devastated because I was doing everything I was supposed to do. But when the next treatment came along (pegylated interferon & ribavarin), I decided to start again, and this time I had more side effects, but the treatment started to show in my test results. I weighed the difficulties of the treatment against the benefit: on the one hand, if I stick with all the shots and pills, I might feel lousy for a while, lose some hair and weight … or on the other hand I may have my liver fail, and die. Which one do I want? That made it easy. I had hope the whole time, and that kept me going. Even if I hadn’t gotten to an undetectable viral load, at least my liver would be in better shape and I would live longer.”

* Thanks to Yolonda, a great consumer educator and advocate!