Coping With Hepatitis

Overcoming Stigma, Keeping Healthy, and Accessing Treatment

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Living with hepatitis can be stressful even if you don't have any overt symptoms. This is especially true with hepatitis B for which there is no cure. And while newer direct-acting antivirals are able to cure hepatitis C in many people, the cost of treatment remains well out of reach for most.

The uncertainty of living with hepatitis may be further compounded by the fear of disclosure, the fear of rejection, or the fear of infecting others. Fortunately, there are things you can do to cope with these challenges and overcome the stigma that can undermine your good health and well-being.

Emotional

Like many contagious diseases, viral hepatitis is highly stigmatized. Rather than viewing it as one would the flu or other community-borne infections, people will often assign blame to those who have been infected.

Much of this is due to the fact that hepatitis is associated with stigmatized behaviors (including sex or injecting drug use), wherein people are often considered "guilty" if they are infected and "innocent" if they get infected. These attitudes have long been fueled by ignorance about the disease and how the virus is transmitted.

When the faced with the threat of judgment, many people with hepatitis will isolate themselves, fearing disapproval or discrimination. It is an understandable response but one that can leave you vulnerable to anxiety and depression or dissuade you from seeking the medical care you need.

So great is the fear of public exposure that some will wait for years until their liver is severely damaged and few treatment options remain. Others will turn to alcohol or drugs and further speed the progression of the disease.

While there are no magic pills to overcome these emotional barriers, there are a number of things you can do to cope with a hepatitis diagnosis.

Educate Yourself

Don't simply follow your doctor's instructions passively; become a partner in your own care. Learn everything you can about the virus, including its effect on the body, how it is transmitted, and what treatment options are available.

Use your doctor as a resource to answer your questions and direct you to the best reference materials. By doing so, you can correct any misconceptions you have about the disease and answer many of the "what ifs" that may be causing you distress.

What you will learn is that hepatitis is no longer the hopeless disease it once was. Not only are there effective treatments, but their side effects are far less severe.

Learn Acceptance

Receiving a hepatitis diagnosis can leave you feeling shocked, numb, sad, angry, panicked, or guilty. You may even cycle through these emotions as you grapple with what the diagnosis actually means. All of these feelings are perfectly normal.

Rather than trying to "fix" your emotions, remind yourself that coping is not an event; it is a process that takes time. Even if you are in a state of denial, the denial can be a means of coping, essentially buying yourself time until you have the strength to look at the disease in the eye.

With that being said, you should never allow gloom to define your condition. Strive to remain positive. Not everyone responds to hepatitis in the same way; some have even used it to make positive changes.

Many people with chronic hepatitis will tell you that the disease helped reprioritize their lives, encouraging them to make healthier choices, seek healthier relationships, and improve their overall quality of life.

Establish Goals

Even if you are still reeling from the diagnosis, it helps to set goals and targets rather than wondering what's next? Having some sort of game plan can help dispel the uncertainty you may be feeling and provide you a better sense of control and self-determination.

As a general rule, try not to leave the doctor's office without setting your next appointment. If you find yourself overwhelmed, ask for a referral to a counselor or social worker who can navigate you through the system and help you identify the family, mental health, financial, and substance abuse treatment services you need.

If you are not yet able to access treatment (a situation common with hepatitis C), set aside time for routine lab tests and follow-ups. The most important thing is to remain linked to care. By stepping out of care, you risk falling out of the system altogether.

To normalize hepatitis in your life, you need to establish a routine so that becomes a regular facet of your health rather than some big, bad thing you have to face occasionally and with dread.

Reduce Stress

Living with hepatitis can be extremely stressful, impacting your physical, mental, and emotional well-being. Rather than ignoring it or treating it with alcohol or medications, there are mind-body therapies that can help. These include:

Exercise can also be a great stress reliever, boosting levels of the feel-good hormone serotonin and neurochemicals called endorphins Even taking a leisurely 30-minute walk can help you de-stress by lowering your blood pressure and providing you a much-needed change of scenery.

Seek Counseling

Anxiety and depression are common with hepatitis. Even if the danger is not imminent, you may feel anxious and depressed when you learn that you may be at risk for cirrhosis or liver cancer. Don't suffer these emotions in silence, especially if the feelings are persistent or interfering with your work, relationships, or sleep.

According to a 2017 study from Italy, a third of people with chronic hepatitis C experience clinically significant depression, while those with hepatitis B are up to four times more likely to have depression than the general population.

Depression can take its toll on your health by interfering with your ability to takes your medications as directed. Depression and anxiety may also lead you to use alcohol, sleeping pills, or illicit drugs as a means to cope.

When it comes to managing hepatitis, it is just as important to treat your mental health issues as well as your physical ones. If in distress or unable to function normally, ask your doctor for a referral to a therapist experienced in chronic diseases.

If your condition is severe, make an appointment to see a psychiatrist who can dispense antidepressants and other medications (rather than asking your general practitioner to do so). Psychotherapy may be needed in addition to drug treatment.

If you are abusing alcohol or drugs, it is vital that you seek substance abuse treatment, not only for your general health and well-being but to save your liver from the ravages of these substances.

Physical

Living with hepatitis is about more than just your liver. To prevent liver injury, you need to look at the disease from the perspective of your entire body. In the end, the liver is but one organ that works in tandem with the heart, lungs, kidneys, circulatory system, and digestive tract to ensure that your body functions normally. By treating your whole body with care, your liver will invariably benefit.

Exercise

Being overweight or obese increases your risk of liver damage by depositing fat in the vessels leading to and traveling within the liver. This can lead to a condition called portal hypertension which not only hurts the liver but also increases your overall blood pressure (as well as your risk of heart disease and diabetes).

Losing weight and lowering your blood pressure is essential to protecting your liver. The best place to start is by engaging in routine exercise with a combination of resistance and cardio training. No matter how out of shape you may be, by starting slowly and increasing incrementally, you can gradually shed the pounds and feel an actual benefit in a relatively short amount of time.

Invest in your health by meeting with a personal trainer or physical therapist who can design an appropriate fitness plan with specific targets and milestones.

Aim to exercise no less than three times weekly. Start with a 15- to 30-minute low-intensity routine, monitoring your heart rate and gradually increasing the duration and intensity week-on-week.

In addition to lowering weight and blood pressure, regular exercise can help prevent diabetes, manage treatment-related side effects, and elevate your overall mood and energy levels.

Diet and Nutrition

The liver metabolizes everything you eat, so a healthy diet is essential for people living with hepatitis. Moreover, if you have fatigue common in acute and advanced-stage disease, a healthy diet can provide you with the fuel needed to function normally.

Here are some of the ways to protect your liver while ensuring proper nutrition:

  • Reduce your red meat intake. Opt instead for skinless poultry, fish, and protein-rich dairy, nuts, or legumes.
  • Reduce your saturated fat intake. Limit your saturated fat intake to no more than 5 percent to 6 percent of your total daily calories, choosing heart-healthy monounsaturated and polyunsaturated fats instead.
  • Cut back on simple carbohydrates. Limit your added sugars to less than 10 percent of total daily calories. This includes excessive fructose, which can raise your triglycerides and promote fatty liver disease.
  • Eat more whole grains, beans, and vegetables. These foods are rich in dietary fiber and complex carbohydrates needed for good digestion and blood sugar control.
  • Drink plenty of water. Your body functions better if it is not dehydrated. Aim for no less than eight 8-ounce cups of water per day, more if you are overweight or obese.

Avoid fad diets which rarely work and often deplete you of the nutrients your body needs. Instead, work with a qualified nutritionist or dietitian who can help design a program that is safe, effective, and sustainable.

Sleep

You cannot manage any health condition if you don't get plenty of rest. Sleep deprivation not only promotes fatigue and depression, but it also diminishes the body's overall immune response (including the production of T-cells). Among people with chronic hepatitis infection, it's a bigger problem than one might think

According to research in Current Hepatitis Reports, insomnia and chronic sleep disturbance affect anywhere from 60 percent to 65 percent of people with chronic hepatitis C whether on treatment or not.

While psychological distress is a common cause of insomnia in people, poor sleep habits (known as sleep hygiene) also contribute. There are a number of ways to improve your sleep hygiene:

  • Limit daytime naps to no more than 30 minutes.
  • Avoid stimulants like caffeine or nicotine before bedtime.
  • Eat dinner two to three hours before bedtime.
  • Avoid electronic devices an hour before sleep.
  • Go to bed at the same time every night.
  • Establish a good sleep environment with cool temperatures (between 60 and 67 degrees F)
  • Use blackout curtains, eye masks, or earplugs if needed.

Social

Managing hepatitis is a team effort. As much your medical team can address your physical and mental health needs, it helps to have a support network of family and friends to help through the daily challenges of living with hepatitis.

Making Disclosure

The first—and perhaps hardest—step is disclosing your condition to others. It can be especially difficult if you have to make secondary disclosures, namely how you got infected. However tough this may be, it shouldn't stop you from trying.

One of the challenges of non-disclosure is that forces you to keep your treatment secret. This, in turn, can interfere with your ability to adhere to your medications, resulting in missed doses and an often-inadequate response to treatment. The consequences are more serious than one might imagine.

Poor adherence to hepatitis B drugs (generally less than 90 percent) is associated with antiviral resistance, while adherence of less than 93 percent can undermine the success of the hepatitis C drugs like Harvoni.

Lack of privacy and secrecy are frequently cited as reasons for missing doses.

To find the support you need, disclose your status to those you trust and can fully rely on. These will be the people who are less likely to be concerned about how you got hepatitis and more about how to help. Take the time to educate them about hepatitis, and allow them the time to ask questions without consternation or rebuke.

Support Groups

You can also find support from those living with the disease both online and off. It often helps to speak with those who have first-hand knowledge of what you are going through, who can share advice and insights, provide emotional support, and lessen the isolation you may be feeling.

You can ask your doctor or social workers for referrals to local support groups, do a community search on FaceBook, or access local or regional meetings through non-profit organizations like the American Liver Foundation.

Practical

If you have hepatitis, the two things that can shatter your peace of mind are the risk of infecting others and the cost of accessing care. This is because both involve your family as well as yourself. Fortunately, there are practical approaches to both.

Hepatitis Prevention

While hepatitis viruses share similar characteristics, their incubation period, persistence, and modes of transmission can vary significantly.

Of the three most common viruses, hepatitis A is a picornavirus primarily transmitted the fecal contamination of food. Hepatitis B is a hepadnavirus mainly transmitted by blood, sexual contact, and breast milk. Hepatitis C is an RNA virus that can be transmitted through direct blood contact or via the placenta during pregnancy.

The guidelines for prevention vary by the viral type and should be shared with anyone who may be at risk of infection:

  • With hepatitis A, avoid unclean food or water and wash your hands thoroughly after using the restroom and coming into contact with a person's blood, stools, or other bodily fluids.
  • With hepatitis B, always use condoms during sex, be cautious about body piercings or tattoos, avoid injecting drugs or sharing needles, and do not share personal care items like razors or toothbrushes.
  • With hepatitis C, avoid sharing needles, direct exposure to blood, shared personal care items, or tattoo/piercing studios that don't use disposable needles. Condoms should also be used in the unlikely event the virus is passed during sex.

People at risk of infection should get a two-shot series of the hepatitis A vaccine and a three-shot series of the hepatitis B vaccine. The vaccination of newborns can also prevent the transmission of hepatitis B via breast milk.

There is no vaccine to prevent hepatitis C.

Accessing Care

The hepatitis C drug Harvoni (sofosbuvir + ledipasvir) made world headlines in 2014 when it was released at a wholesale price of $1,000 per tablet (or roughly $112,000 for a 16-week course). While the price has dropped in recent years, the least costly drug option, Mavyret (glecaprevir/pibrentasvir), still costs a sizable $26,400 for an 8-week course.

While the drugs used to treat hepatitis B are less costly, at least from a per-tablet perspective, they are not curative and need to be taken for a lifetime in people who are chronically infected.

Generally speaking, private insurance companies will only approve hepatitis C treatment when the liver injury is significant (typically a fibrosis score of 3 to 4). Eligibility requirements for Medicaid and Medicare are less restrictive, but both still deny treatment to those whose liver injury is considered minimal.

According to a 2018 study from the Perelman School of Medicine, 52.4 percent of hepatitis C treatment requests are denied, while 34.5 percent of Medicaid and 14.7 percent of Medicare requests are also turned down.

This doesn't mean that you should abandon hope of treatment, especially if you don't have insurance. Today, most every hepatitis drug manufacturer offers patient assistance programs (PAPs) and co-pay assistance programs (CAPs) which provide low-cost or free hepatitis B and hepatitis C medications to those who qualify.

While the program rules vary, these vital assistance programs can be broadly described as follows:

  • PAPs provide treatment to uninsured people who meet eligibility requirements (generally an annual income 200 percent to 250 percent of the Federal Poverty Level, or FPL).
  • CAPs provide drug co-payment assistance to insured individuals up to a certain annual limit. Annual income eligibility ranges from 400 percent to 500 percent of the FPL, depending on the drug manufacturer.

These programs may not solve all of your problems, especially if you are insured and are denied treatment. CAPs may cover a significant portion of your costs but can still leave you burdened with excessive out-of-pocket expenses.

To learn more about eligibility requirements and which costs are covered, contact the drug manufacturer directly. You can access the free, confidential Partnership for Prescription Assistance program for contract details and program information.

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