For Patients Caregiver Tips and Advice For Medical Professionals

Support for patients with Hepatitis C

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


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Online Support Groups

Visit the American Liver Foundation online support group at Inspire…

American Liver Foundation


Phone Support Help Line

Questions about liver disease? Need support or information about our resources? Call our helpline at 1-800-465-4837, 9am – 7pm ET, Monday – Friday.

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.

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
Emailinfo@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

Websitewww.wellspouse.org
Tel800-838-0879

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

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:

Daklinza
Bristol?Myers Squibb Patient Support Connect program
844-442-6663
daklinza.bmscustomerconnect.com

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

Olysio
Janssen Patient Assistance
800-652-6227
www.olysio.com

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

Victrelis and PegIntron
ACT Program
866-363-6379
www.merckhelps.com
(Offered through Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc)

Intron A
Merck Access Program
855-257-3932

Technivie
AbbVie’s proCeed Program
844-484-3547

Viekira
AbbVie’s proCeed Program
844-484-3547

Ribasphere RibaPak (Ribavirin)
Kadmon Enabling Your Success (KEYS) Program
800-364-4767
Copay Card (download)
www.kadmon.com

  • Ribasphere not covered
  • RibaPak covered
  • Enrollment contact info: ribapak.com or 877-377-7862
  • Already enrolled inquiries: 800-364-4764

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.

Patient Access Network Foundation (866-316-7263) is a non-profit organization that provides assistance to under-insured people for their out-of-pocket expenses for life-saving medications. Visit them on the Web.

The Patient Advocate Foundation Co-Pay Relief Program (866-512-3861) provides direct financial assistance to insured patients who meet certain qualifications to help them pay for the prescriptions and/or treatments they need. Visit them on the Web.


NEEDYMEDS

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

Program
NeedyMeds offers resources that are helpful to uninsured and underinsured patients:

Eligibility
Eligibility depends on programs.

Contact Information
Needy Meds
P.O. Box 219
Gloucester, MA 01931
Phone: 1-800-503-6897
Website


HEALTHWELL FOUNDATION

The HealthWell Foundation is a nonprofit organization which reduces financial barriers to care for underinsured patients with chronic or life-threatening disease.

Program
The HealthWell Foundation provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies.

Eligibility
HealthWell bases eligibility on an individual’s medical, financial and insurance situation. Click here for further eligibility requirements.

Contact Information
The HealthWell Foundation
P.O. Box 4133
Gaitherburg, MD 20885-4133
grants@healthwellfoundation.org
(800) 675-8416 Phone
(800) 282-7692 Fax
Website


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.

Contact Information
Partnership for Prescription Assistance
Phone: 1-888-477-2669
Website


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 varies by state. For more details…

Additional organizations

  • RxAssist offers a comprehensive database of patient assistance programs, as well as news and practical tools. Visit them on the Web.
  • RxOutreach is a mail order pharmacy for people with little to no health insurance coverage. Visit them on the Web.

PATIENT ADVOCATE FOUNDATION CO-PAY RELIEF (CPR)

PAF Co-Pay Relief (CPR) provides direct financial assistance to qualified patients, assisting them with prescription drug co-payments their insurance requires relative to their diagnosis. CPR call counselors work directly with the patient as well as with the provider of care to obtain necessary medical, insurance and income information to advance the application in an expeditious manner.

Program
Maximum Award Level: $25,000 Per Year

Eligibility

  • Patient should be insured and insurance must cover the medication for which patient seeks assistance.
  • Patient must have a confirmed diagnosis of Hepatitis C.
  • Patient must reside and receive treatment in the United States.
  • Patient’s income must fall below 400% of the Federal Poverty Guideline (FPG) with consideration of the Cost of Living Index(COLI) and the number in the household.

Contact Information
Patient Advocate Foundation
Co-Pay Relief Program
421 Butler Farm Road
Hampton, Virginia 23666

Toll Free 1-866-512-3861
Local: 757-952-0118
Fax: 757-952-0119

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:

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

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!

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Video

Hepatitis C Public Service Announcement

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Sanjay Gupta interview with ALF’s Paul Bolter and Sue Simon

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