Hep C: Be Your Own Advocate (original) (raw)

Self-advocating when you have hepatitis C can mean speaking up and taking action to make sure you get the best care possible. Here are some ways you can do that with your health care team:

Know Your Rights

As someone receiving treatment, you have certain rights. Some of those, such as the right to have copies of your medical records and the right to keep them private, are guaranteed by law. Many states have additional patient rights laws. Your health care facilities may also have a “patient bill of rights.”

You have the right to:

• Courtesy and respect
• Timely responses to your needs
• Access to your medical records and test results, including your own copies of them
• Privacy and confidentiality. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) protects you from having your sensitive information shared without your permission.
• Informed consent. Your health care provider must give you the information you need to make an informed decision about your treatment options.
• Continued care as long as you need it
• Report bad experiences you have with medical staff
• Refuse treatment
• Change doctors

Understand the Vocab

A hepatitis C diagnosis comes with a whole new list of unfamiliar words and phrases. Take time to learn the terms your doctors uses to describe your condition and treatment. These include terms about your blood work and liver panel.

Your liver panel will include liver enzymes such as:

• ALT
• AST
• ALP
• GGT
• Albumin
• Bilirubin

Find out what your viral load is. That’s the amount of hepatitis C virus (HCV) in your blood. Learn the names of diagnostic tests you might have and what they tell your doctor, such as:

• Magnetic resonance elastography (MRE)
• Transient elastography
• Liver biopsy

Hepatitis C is treated with drugs called direct-acting antivirals. Ask your doctor to teach you about the different options, including:

• Ledipasvir/sofosbuvir (Harvoni)
• Elbasvir/grazoprevir (Zepatier)
• Ombitasvir/paritaprevir/ritonavir/dasabuvir (Viekira Pak)
• Ombitasvir/paritaprevir/ritonavir (Technivie)
• Glecaprevir/pibrentasvir (Mavyret)
• Sofosbuvir/velpatasvir/voxilaprevir (Vosevi)
• Sofosbuvir/velpatasvir (Epclusa)

It’s helpful to use credible resources to learn more about your condition, such as:

• CDC
• American Liver Foundation
• Hepatitis C Association
• National Viral Hepatitis Roundtable
• National Hepatitis C Advocacy Council

Ask Questions

Be sure to ask about your specific health status, treatment options, drug costs, and care plan. That’s key to understanding your condition more fully.

Communication with your health care team will go better if you:

• Plan ahead. Write down your important issues and questions before you visit your doctor, so you don’t forget them.
• Keep information in one place. Have a notebook, binder, or file on a computer where all of your hep C information is kept, so it’s quick to find and reference.
• Be clear about what you need. Make sure your health care team understands your goals and objectives.
• Talk to the right people. Think about who can be the most helpful to you. For example, if you need information or help with treatment, your doctor can advise you. For questions about drug costs, talk to your pharmacist or insurance company.
• Try written communication. If you’re less confident talking in person, send your health care team an email or message on a patient portal.
• Take notes. It can be helpful to have a trusted friend or family member with you as you meet with your doctor. That way, more than one person hears the information. This person can record what your doctor says in the appointment so you can reference it later.

Do Your Part

You want your health care team to take your care seriously, so take it seriously yourself. Show up to appointments on time. Take your meds like your doctor says. Give your doctor an honest and accurate list of any drugs, vitamins, and supplements you’re taking.

Report any side effects or issues you’re having, and work on making lifestyle changes that can make a difference in your hep C health.

Photo Credit: Morsa Images / Getty Images

SOURCES:

HHS.gov: “What are my health care rights and responsibilities?”

American Medical Association: “Patient Rights.”

HepatitisC.net: “How to Become Your Own Patient Advocate.”

Medscape: “Hepatitis C Medication.”

BC Centre for Disease Control: “Speaking Up for Hepatitis Care and Support.”