Frequently Asked Questions

The American Liver Foundation provides referrals to other organizations which can help with medical bills, copay/medication, transportation and housing. Visit the ALF financial resource guide for more information.

Follow up with your primary medical provider who knows your medical history and current medication regimen.

Online resources to find more information about supplements:

1. LiverTox – National Institutes of Health searchable database on hepatotoxicity of medications, herbal or supplements
2. The National Center for Complementary and Integrative Health (NCCIH) – Provides educational information on supplements and herbal products.

Eating well is a great lifestyle change that can help your liver function at its fullest potential. Making changes in your diet including limiting fats & sugars while increasing consumption of fruits, vegetables, lean meats and whole grains. Learn more information about diet and liver wellness here.

Local support groups are great resources for people to connect and be able to share their experiences with others. Finding local resources is easy – go to the ALF Resource Center.

If there are no support groups near you, we have created an online forum on the Inspire. Here you can connect with other patients with liver disease and their families to share experiences, information and support.

Helpful resources to find a clinical trial can be found:

• ALF Resource Center
• National Cancer Institutes (NCI) – Educational resources on all types of cancer including liver cancer. 800-422-6237
• Clinical Trials Registry – National Institutes of Health (NIH)
  • Clinical trial locator in the U.S. and other countries
  • Comprehensive for clinical trials in the U.S.
  • Advance search available by condition (e.g., HCV, NAFLD, HCC etc.), recruitment (open studies vs. closed studies) and other criteria
• World Health Organization (WHO) International Clinical Trials Registry Platform – World-wide clinical trial locator

Liver transplant referrals typically come from your gastroenterologist, hepatologist or primary care physician.

You can access a list of transplant centers via OPTN (Organ Procurement and Transplantation Network) and UNOS (United Network for Organ Sharing).

You can learn more on these pages of this website…

• Liver Transplantation
• Living Donor Liver Transplantation Information Center
• Organ Donation

Substance Abuse and Mental Services Administration (SAMHSA) Drug Abuse Treatment Referral HelpLine 800-662-4357

Additional Resources include:

• Treatment service locator for alcohol and drug abuse or mental health
• Buprenorphine physicians and treatment programs authorized to treat opioids, such as heroin or prescription pain relievers.
• Treatment programs in your state that treat addiction and dependence on opioids, such as heroin or prescription pain relievers.

Also, if you have health insurance, many plans include behavioral health assistance and we suggest contacting your member services to see if further information is available.

CLICK TO ENLARGE

Unfortunately, we’re seeing an ever-increasing number of people with liver diseases such as hepatitis C, non-alcoholic fatty liver disease (NAFLD), and liver cancer.

At least 30 million people—or one in 10 Americans—have some form of liver disease. At the same time, keep in mind that there are more than 100 types of liver disease.

• More than one million Americans are infected with hepatitis B and four million Americans have hepatitis C. Unlike hepatitis A and hepatitis B, there’s no vaccine to prevent hepatitis C.
• A hot news topic is the 20 percent of Americans who have fatty livers, which is the basis of non-alcoholic fatty liver disease or NAFLD.
• Each year, about 21,000 Americans are diagnosed with primary liver cancer—one of the few cancers on the rise in the U.S.

Very often they aren’t.

• Hepatitis C is called “the silent epidemic.” Three-quarters of people infected with hepatitis C don’t know they have it because they can have no symptoms for years. The disease often lies undetected for 20 to 30 years and is a leading cause of cirrhosis and liver failure. (Think about the baby boomers who simply don’t know).
• There are usually no symptoms of cirrhosis in its early stage. Over time, cirrhosis may cause symptoms, complications and even lead to liver failure.

Yes. Take children, for example:

• The incidence of biliary atresia is one in 10,000 live births in the U.S. and there are approximately 300 new cases each year.

• The prevalence of all causes of neonatal liver disease may be as high as one in 2,500 live births.

• Approximately 15,000 children are hospitalized every year in the U.S. with pediatric liver disease or disorders.

• An alarming statistic is that six million children—up to 10 percent of all children in the nation—have NAFLD, the non-alcoholic fatty liver disease we referred to earlier. NAFLD is the leading cause of chronic liver disease in children and adults in the United States.

Let’s limit our answer to another story making headlines. A high profile study unveiled by the Centers for Disease Control and Prevention (CDC) finds that more than 75 percent of adults with hepatitis C are baby boomers, those born between1945 and 1965. It’s estimated that one in every 33 baby boomers has viral hepatitis. They are five times more likely to have hepatitis C. The CDC recommends that all baby boomers get tested for the virus, as should all at-risk groups.

The CDC states that reason isn’t completely understood. Most boomers are believed to have become infected in the 1970s and 1980s when rates of hepatitis C were the highest. Specifically:

• Many baby boomers could have gotten infected from contaminated blood and blood products before widespread screening of the blood supply began in 1992 and universal precautions were adopted.
• Others may have become infected from injecting drugs, even if only once in the past.
• Still, many baby boomers don’t know how or when they were infected.

In some instances. For example:

• Primary liver cancer is about twice as common in men than in women.
• About 70 percent of people with autoimmune hepatitis are women, usually between the ages of 15 and 40. Many people with this disease also have other autoimmune diseases. The disease is chronic, meaning it lasts many years. Less common forms of autoimmune hepatitis generally affects girls between the ages of 2 and 14.

To highlight a few facts:

• Though African-Americans represent 13 percent of the U.S population, they make up about 22 percent of chronic hepatitis C cases. In addition, numbers published by the National Medical Association from the CDC show that four of every 100 infants born to African-American mothers with hepatitis C become infected with the virus. Chronic liver disease, often hepatitis C-related is the leading cause of death among African-Americans ages 45 to 64.
• Also, according to the CDC, an estimated one in 12 Asian-Americans and Pacific Islanders have hepatitis B, yet as many as two in three are unaware they’re infected.
• The American Cancer Society (ACS) estimated that in 2012, approximately 4,300 Hispanics would be diagnosed with liver cancer, and about 2,700 would die from the disease. Among men, liver cancer was expected to account for about 10 percent of the total.
• The ACS stated that liver cancer incidence rates in the U.S. were about twice as high in Hispanics as in non-Hispanic whites and about three times higher in men than in women.
• Liver cancer is one of the most fatal types of cancer; the 5-year survival rate among Hispanics is about 19 percent for both men and women, according to the ACS.

For the sake of brevity, let’s respond by saying that, as one would expect, there’s ongoing research to find efficacious medications to combat hepatitis C. For patients with chronic hepatitis C, medications are often used in combination, including interferon, ribavirin, and the more recently FDA-approved boceprevir and telaprevir.

Two examples:

• Renal Risk Index: With their results published in the Journal of the American Society of Nephrologists (Sept. 12, 2013), researchers have created and validated a score that predicts the risk of end-stage renal disease after a liver transplant. Investigators at the University of Michigan and Arbor Research Collaborative for Health created the Renal Risk Index using national data of 43,514 liver transplant recipients. It’s calculated by evaluating recipient characteristics like age, race/ethnicity, history of hepatitis C and body mass index.

• Magnetic Resonance Elastography (MRE): This is a new, noninvasive imaging test that accurately detects fibrosis in children, including those who are severely obese, with non-alcoholic fatty liver disease and other forms of chronic liver disease. A case series was published online in the Journal of Pediatrics (Sept. 23, 2013). Lead author Stavra Xanthakos, MD, a gastroenterologist at Cincinnati Children’s Hospital Medical Center in Ohio, said in a news release: “MRE is likely to be superior to ultrasound-based elastography in this population, as ultrasound-based methods are less reliable in severely obese patients.”

Think of this topic in three different ways:

• Waiting: Currently, about 16,000 adults and children are on the national waiting list for liver transplants. The list grows every year and the shortage of organ donors—deceased and living—is a major obstacle.
• Transplants: From January 1, 1988 through July 31, 2013, there were 123,392 liver transplants in the U.S., according to data from UNOS/OPTN. Of those, 4,931 were living donors.
• Deaths: But, on the other hand, UNOS/OPTN data reveals that from January 1, 1995 through July 31, 2013 (a shorter period, by comparison), a total of 29,424 listed patients died while still waiting for liver transplants.

Having type-2 diabetes or high cholesterol increases the risk of non-alcoholic fatty liver disease. But by far the biggest problem is obesity. More than one-third of Americans and approximately 12.5 million (17%) of children and adolescents are obese. As it becomes an emerging epidemic, non-alcoholic fatty liver disease is the third most common reason for liver transplants in the U.S.

Many liver diseases are preventable with vaccines or reversible, and nearly all are less expensive to treat if detected early. This is why education and awareness provided by the American Liver Foundation, as well as the Foundation’s research projects, are so important. Getting tested can help people learn if they are infected and shifting them into life-saving care and treatment.