Learn about the challenges you may face, side effects and supporting your caregiver.

Talking to loved ones about Hepatitis C

People with Hepatitis C are often concerned about how others will view them. You may find yourself avoiding friends and family because you’re worried about how they’ll react to your diagnosis, but having the support of people close to you is important to your well-being.

It helps to come armed with facts when telling people about your diagnosis. Some people may react harshly simply due to their lack of knowledge and/or misconceptions about the disease. If you start the conversation with the following facts, it can help put people at ease. Explain that Hepatitis C:

Progresses slowly and often doesn’t cause symptoms for decades
Is a curable disease and that there are many new treatments available
Is difficult to pass on to other people and the risk of transmission within a family is low

Ultimately, who you decide to tell about your Hepatitis C is up to you. However, there are some people that really should be informed – your family, spouse, sexual partners – or anyone else who could have possibly gotten the virus from you. Even though the chances are small that they have the disease, it’s a good idea for them to get tested. Remember, Hepatitis C is transmitted through exposure to contaminated blood, so avoid exposing others to any open wounds, or to personal care tools such as razors or cuticle cutters.

Seeking either professional or peer support when disclosing your diagnosis can be helpful. Telling loved ones can be an upsetting experience for everyone. Planning the disclosure – when, where and how to disclose – can make the experience better for all involved.

Support for caregivers

If you’re living with significant liver damage due to an untreated, chronic Hepatitis C infection you’re likely to need emotional and/or physical support at certain points in your journey. These needs are often met by family and friends who might accompany you to medical appointments or help with household chores such as cleaning or preparing meals.

It’s important to keep in mind that the person giving care and the person receiving care are in this together – sometimes referred to as “care partners.” You as the person with the disease may be the one requiring assistance, but the needs and concerns of both partners must be addressed for the relationship to stay healthy.

The person giving care – the caregiver – often experiences many of the same emotions that you might experience: stress, anger, fear, isolation, depression. As the caregiver takes on more responsibilities it can be overwhelming for him or her to balance assisting you, along with their job, the kids, household duties and so forth. This can lead to the caregiver feeling burned out.

It’s very important for the caregiver to take steps to ward off burnout. One of the biggest mistakes that caregivers make is to think that they can – or should – handle everything themselves. They start to neglect their own needs, both emotional and physical, and the strain begins to take a toll. The warning signs for burnout can include:

Decreased interest in work
Withdrawing from social contacts
Losing interest in hobbies or sports
Trouble sleeping or relaxing
Losing or gaining weight
Emotional or physical exhaustion
Feeling hopeless or helpless

To counteract burnout, the following strategies are recommended for the caregiver:

Have a support network
Attend a support group to receive feedback and coping strategies
Rotate the type of care giving responsibilities among family and friends
Get exercise and maintain a healthy diet
Stay involved in hobbies
Establish “quiet time” for reading, meditation, or massage
Consult with a professional to explore burnout issues
Arrange for respite care when needed

Successful caregivers learn that they need to care for themselves if they are to effectively care for others. Following are some resources that can help:

Caregiver Action Network

Website – www.caregiveraction.org
Email –info@caregiveraction.org
Tel – (202) 454-3970

Educates, supports, and empowers more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. Free member benefits include Take Care! – a quarterly newsletter.

The Well Spouse Association

Website – www.wellspouse.org
Tel – 800-838-0879

Advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner.

Publishes Mainstay, a quarterly newsletter and Member Minute, an e-newsletter
Provides networking/local support groups
Organizes regional respite weekends and a national conference for caregivers

Caregiver.com

Website – www.caregiver.com
Tel – 800-829-2734

Publishes Today’s Caregiver, a bi-monthly magazine and Today’s Caregiver e-newsletter
Provides links to many resources such as government and nonprofit agencies
Provides networking and support groups

What if I need financial assistance to pay for treatment?

If you need help to pay for your prescription medications, you may be eligible for patient assistance programs. The following organizations provide programs that directly reduce the cost of prescription drugs or can assist you in finding programs for which you are eligible.

AMERICAN LIVER FOUNDATION

The American Liver Foundation’s Financial Assistance Resource Support Guide is available for more information: Download

The American Liver Foundation’s Free Drug Discount Card can be used for prescription medications, over-the-counter medications and medical supplies. The card is available with no charge. For more information.

PHARMACEUTICAL PATIENT ASSISTANCE PROGRAMS

There are pharmaceutical company sponsored prescription assistance programs for specific drugs used to treat Hepatitis C. The drugs are listed below by their brand name:

Mavyret
AbbVie Patient Assistance Program
877-628-9738
www.mavyret.com

Vosevi, Sovaldi and Harvoni
Gilead Support Path
855-769-7284
www.mysupportpath.com

Zepatier
Merck C Ahead Patient Support
855-257-3932
www.zepatier.com

Daklinza
Bristol Myers Squibb Patient Assistance Foundation
800-736-0003
www.bmspaf.org

Pegasys and Copegus
Genentech Assistance
888-941-3331
www.genentech-access.com

Intron A
Merck Helps
800-727-5400
www.merckhelps.com

To apply for drug assistance programs, you will likely be asked for the following information, so it’s helpful to have it handy before contacting these organizations:

State of residence and zip code
Estimated gross annual household income
Number of people living in the household
Brand name of the prescription medicines you have been prescribed
Type of health insurance and/or prescription coverage, if any
Name and contact information of your doctor who prescribed the medication
All information discussed with people staffing patient assistance help lines is strictly confidential.

In addition, there are several non-profit organizations that offer insurance copayment assistance for Hepatitis C drugs:

Patient Access Network Foundation
866-316-7263
www.panfoundation.org

Good Days
877-968-7233
www.mygooddays.org

HealthWell Foundation
800-675-8416
www.healthwellfoundation.org

Patient Advocate Foundation Co-Pay Relief Program
866-512-3861
www.copays.org

Patient Assistance Fund
855-730-5873
www.tafcares.org

Patient Services Inc.
800-366-7741
www.patientservicesinc.org

NEEDYMEDS

NeedyMeds is a non-profit organization whose mission is to help people who cannot afford medicine or health care costs.

Program
NeedyMeds offers patient assistance program database for patients to search medications they are taking or need.

Eligibility
Uninsured or underinsured

Contact Information
NeedyMeds
Phone: 1-800-503-6897
www.needymeds.org

PARTNERSHIP FOR PRESCRIPTION ASSISTANCE

The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage to access the medicines they need.

Program
The Partnership for Prescription Assistance has an online prescription assistance program finder.

Eligibility
Uninsured or underinsured

Contact Information
Partnership for Prescription Assistance
1-888-477-2669
www.pparx.org

RX OUTREACH

RxOutreach is a non-profit mail order pharmacy for people with little to no health insurance coverage.

Program
Rx Outreach offers more than 600 medication strengths that cover many chronic diseases. They can ship medications directly to their patients’ homes. For details.

Eligibility
Uninsured and underinsured

Contact Information
Rx Outreach
Phone: 1-888-796-1234 (1-888-RXO-1234)
www.rxoutreach.org

STATE PHARMACEUTICAL ASSISTANCE PROGRAMS

Many states offer subsidies to provide pharmaceutical coverage or a discount program for prescriptions to eligible individuals.

Program
For information on what programs are provided in each state.

Eligibility
Eligibility requirements vary from state to state. For more details.

Contact Information
Contact information vary by state. The information is available on the U.S. Centers for Medicare and Medicaid Services’ website.

Special challenges for people with substance abuse issues

If you use drugs or alcohol it is important to stop. Abuse of these substances poses the risk of serious liver damage, even in people without Hepatitis C.

One of the most important jobs your liver does is to break down and filter out toxic substances from your body. Hepatitis C reduces your liver’s ability to do this. If you have Hepatitis C, it’s even more important to avoid substances that may further harm your liver, like drugs and alcohol.

Drinking too much can lead to cirrhosis of the liver, advanced liver disease, or even liver cancer. At present, there is no evidence for a safe level of alcohol for people with Hepatitis C. And it doesn’t help to switch from “hard” liquor to beer or wine. The best advice is to avoid alcohol completely. This is even more important while on treatment for Hepatitis C.

If you want to stop using drugs or alcohol and need help to do so, ask your doctor or someone else you trust about getting into a treatment program. In addition, you can contact the following agencies for information and help:

Alcoholics Anonymous
A.A. World Services, Inc.
P.O. Box 459
New York, NY 10163
(212) 870-3400

Narcotics Anonymous
World Service Office in Los Angeles
P.O. Box 9999
Van Nuys, CA 91409
(818) 773-9999

National Patient Advisory Committee

Through the generous support of Gilead Sciences, ALF has launched its first National Patient Advisory Committee, comprised of 30 members who are living with or were cured of hepatitis C. These individuals will help guide ALF’s communications activities around hepatitis C. On November 20 – 22, 2014, ALF brought together half of the group who participated in media training exercises and heard presentations about hepatitis C communications messaging and ALF public education activities. A meeting of the second half of the group was held in San Francisco in late January.

To be a hepatitis C patient advocate is to offer your time and energy to generate greater awareness about a disease that affects some four million Americans and try to effect policy changes in Washington for more research funding and services to support patients and families.

Thirty such individuals – people living with or cured of hepatitis C – were quick to volunteer, helping to launch the American Liver Foundation’s first National Patient Advisory Committee (NPAC).

Supported by Gilead Sciences, the NPAC will help guide ALF’s communications activities around hepatitis C. In late November 2014 and January 2015, committee members who are divided into East and West Coast Groups, gathered in New York City and San Francisco, respectively, spending three days learning to be effective communicators. NPAC members participated in presentations on media training and mock interviews, learned about hepatitis C communications messaging and how to effectively use social media.

NPAC members are already putting what they learned into practice. Several have participated in a hepatitis C health education video series produced by WebMD and Everyday Health (view them here). This spring, some will travel to Washington, DC for a series of ALF advocacy activities and others have already participated in advocacy activities on the local level.

Says NPAC member Michael Adams of Houston, “As a survivor of many hepatitis C treatments and a liver transplant, I am thrilled to be involved in the ALF NPAC community. I feel that the experiences that we have endured and the knowledge we have gained on our journey makes us uniquely equipped to help educate and inspire others with this disease.”

“I am so happy to be a part of NPAC because it gives me the opportunity to be among people who have had similar journeys and who have a passion for helping others,” says another NPAC member Charlotte Stewart of Nashville. “The NPAC allows me to share my experiences of living with and eventually being cured of hepatitis C and offer hope and support to those who are still going through treatment.”

As ALF hepatitis C patient advocates, NPAC members will give hope to millions of Americans affected by hepatitis C!

Additional Resources

www.hepc.com

Search for a Clinical Trial

Clinical trials are research studies that test how well new medical approaches work in people. Before an experimental treatment can be tested on human subjects in a clinical trial, it must have shown benefit in laboratory testing or animal research studies. The most promising treatments are then moved into clinical trials, with the goal of identifying new ways to safely and effectively prevent, screen for, diagnose, or treat a disease.

Speak with your doctor about the ongoing progress and results of these trials to get the most up-to-date information on new treatments. Participating in a clinical trial is a great way to contribute to curing, preventing and treating liver disease and its complications.

Start your search here to find clinical trials that need people like you.

Last updated on August 17th, 2023 at 03:54 pm

Support for Patients with Hepatitis C