Support for Patients with Hepatic Encephalopathy
If you’re living with HE or caring for a loved one with HE you’ll likely need emotional, physical or financial support at certain points in your journey.
In this section, we cover how and where you can get that support – from finding resources to help pay for the cost of medications to learning how to talk about your diagnosis with friends and family. In addition, many people find it helpful to talk with others living impacted by HE. By attending support groups you can meet other people who have similar issues and may learn from their experience.
Finding support services
The American Liver Foundation provides many resources and support services for people with HE and their family, friends and caregivers. An outline of these services and where to access them follows below:
- American Liver Foundation Support Services:
- National helpline: 800-465-4837 (800-GO-LIVER)
- Support Guides
- Resource referrals: 800-465-4837 (800-GO-LIVER)
- Online support communities
There are other advocacy groups and professional associations that can also be valuable sources of information for learning more about your condition, connecting with other people who have HE and their caregivers, and finding doctors who specialize in treating this condition.
- National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury, CT 06810Web: www.rarediseases.org
Phone: 203-744-0100
Fax: 203-798-2291
Email: orphan@rarediseases.org NORD provides information about rare diseases, patient assistance programs, and resources for patients and their families, medical professionals and the public. - American Gastroenterological Association (AGA)
4930 Del Ray Avenue
Bethesda, MD 20814Web: www.gastro.org
Phone: 301-654-2055
Fax: 301-654-5920
Email: member@gastro.org The patient center section of this Web site offers information about digestive conditions, procedures, diet and medications, and a gastroenterologist (GI) physician locator service. In addition, it rates the accuracy of information provided on certain patient-oriented Web sites. - American College of Gastroenterology (ACG)
6400 Goldsboro Road
Bethesda, MD 20817Web: www.gi.org
Phone: 301-263-9000
Email: info@acg.gi.org The patient section of this Web site helps you to locate a physician liver expert in your area, provides information about digestive health topics and procedures, and has the latest news and updates on GI health.
In addition, pharmaceutical companies have support services for people taking their medications.
- Salix Pharmaceuticals, makers of rifaximin (Xifaxan®), has a program that offers a variety of resources to help you understand and manage your condition, called Hepatic Encephalopathy Living Program (H.E.L.P.). It includes:
- Educational materials
- 24-hour access to a toll-free patient hotline staffed by registered nurses
- Support to help you stay on treatment including prescription and appointment reminder calls Learn more…
Financial assistance
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.
The American Liver Foundation’s Financial Assistance Resource Support Guide is available for more information. 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.
Pharmaceutical Patient Assistance Program
Salix Pharmaceuticals, makers of rifaximin (Xifaxan®), has a program that offers a variety of resources to help you with cost and insurance support regardless of whether or not you have prescription coverage. Find out about the Xifaxan 550 mg Access Helpline, Instant Savings Card, and Patient Assistance Program. Contact them at 1-866-282-6563 or visit them on the Web at http://www.xifaxan550.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.
Needy Meds
NeedyMeds is a nonprofit organization whose mission is to help people who cannot afford medicine or health care costs.
NeedyMeds offers resources that are helpful to uninsured and underinsured patients:
- Patient assistance program database for patients to search for medications they are taking or need:
http://www.needymeds.org/inclusions/pap.htm - MRI/CAT scan discount program
http://www.needymeds.org/inclusions/imaging_discount_service_landing_page.htm - Medication bill mediation:
http://www.needymeds.org/inclusions/medical_mediation.htm
Contact Information
Needy Meds
P.O. Box 219
Gloucester, MA 01931
Phone: 1-800-503-6897
Website
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
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.
Programs are listed by each state. For more details…
Eligibility requirements vary from state to state. For more details…
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 at http://rxassist.org
- RxOutreach is a mail order pharmacy for people with little to no health insurance coverage. Visit them on the Web at http://www.rxoutreach.org
- Patient Access Network Foundation 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 at www.panfoundation.org
- Chronic Disease Fund is a non-profit charitable organization that helps people with chronic disease, cancer and other life-altering conditions obtain the life-savings medications they need. Visit them on the Web at http://www.cdfund.org/
- HealthWell Foundation is a non-profit organization that educes financial barriers to care for underinsured patients with chronic or life-threatening diseases. Visit them on the Web at http://www.healthwellfoundation.org
Support for your loved ones
If you’re living with HE you’re likely to need support from family and friends who might accompany you to medical appointments, make sure you take your medications on a regular basis, help with household chores such as cleaning or preparing meals, and provide for your safety when your symptoms are more severe.
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: 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. It’s important for you to remember that your loved ones need a break too – not from you – but from the disease and the toll it can take.
There are many support services for caregivers and you should encourage your loved ones to take advantage of them. Your “care partner” can get more information by referring to the section specifically for caregivers of people with HE.
Video Library
Patient Stories
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 11th, 2023 at 06:01 pm