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:
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.
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:
To counteract burnout, the following strategies are recommended for the caregiver:
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
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.
Website – www.caregiver.com
Tel – 800-829-2734
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:
AbbVie Patient Assistance Program
Vosevi, Sovaldi and Harvoni
Gilead Support Path
Merck C Ahead Patient Support
Bristol Myers Squibb Patient Assistance Foundation
Pegasys and Copegus
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:
In addition, there are several non-profit organizations that offer insurance copayment assistance for Hepatitis C drugs:
Patient Access Network Foundation
Patient Advocate Foundation Co-Pay Relief Program
Patient Assistance Fund
Patient Services Inc.
NeedyMeds is a non-profit organization whose mission is to help people who cannot afford medicine or health care costs.
NeedyMeds offers patient assistance program database for patients to search medications they are taking or need.
Uninsured or underinsured
PARTNERSHIP FOR PRESCRIPTION ASSISTANCE
The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage to access the medicines they need.
The Partnership for Prescription Assistance has an online prescription assistance program finder.
Uninsured or underinsured
Partnership for Prescription Assistance
RxOutreach is a non-profit mail order pharmacy for people with little to no health insurance coverage.
Rx Outreach offers more than 600 medication strengths that cover many chronic diseases. They can ship medications directly to their patients’ homes. For details.
Uninsured and underinsured
Phone: 1-888-796-1234 (1-888-RXO-1234)
STATE PHARMACEUTICAL ASSISTANCE PROGRAMS
Many states offer subsidies to provide pharmaceutical coverage or a discount program for prescriptions to eligible individuals.
For information on what programs are provided in each state.
Eligibility requirements vary from state to state. For more details.
Contact information vary by state. The information is available on the U.S. Centers for Medicare and Medicaid Services’ website.
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:
A.A. World Services, Inc.
P.O. Box 459
New York, NY 10163
World Service Office in Los Angeles
P.O. Box 9999
Van Nuys, CA 91409
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!
The liver is the seat of our overall health and wellness and the health of nearly every organ is intimately connected with our liver. A healthy liver is essential to a fully functioning body, but our modern sedentary lifestyles and unhealthy eating habits can truly damage the liver and damage our health overall.
A silent health crisis is impacting one-third of the American population—nonalcoholic fatty liver disease (NAFLD). Because its symptoms often don’t manifest until the liver is seriously compromised, many people are not aware that they are at risk. Did you know that if you have fatty liver disease you are more likely to develop cardiovascular disease (heart attack and stroke), and potentially several devastating conditions such as liver cirrhosis and liver cancer? Did you know that fat is as dangerous as alcohol to the liver?
Award-winning dietitian Kristin Kirkpatrick and hepatologist Dr. Ibrahim Hanouneh have teamed up for a life-changing program that will help you achieve optimal health. Skinny Liver’s four-week program shares the steps you can take to get your liver health back on track, with everything from exercise to healthy eating and other lifestyle changes—along with delicious liver-friendly recipes. Written by two experts in the field and based on the latest research, Skinny Liver is an authoritative, easy-to-follow guide to health and wellness, not just for your most essential organ, but for your whole body.
To order this book online, click here.
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 9th, 2022 at 08:28 pm