Lauren Santye

For many people, the specter of liver cancer can hide behind a host of other liver diseases.

Currently, there are approximately 30 million Americans with some form of liver disease. Of these individuals, there are as many as 25 percent with non-alcoholic fatty liver disease, with some evidence of the condition even being seen in children.

Fatty liver disease can progress to more serious illnesses, including liver cancer. These factors make it vital for patients to seek out help for liver conditions as soon as possible.

“The American Liver Foundation considers itself the trusted voice for patients with liver disease,” said Lynn Seim, the executive vice president and COO of the American Liver Foundation (ALF). “So we consider ourselves the go to source for information, education, and support services.”

With 14 staffed divisions across the United States, the ALF looks to facilitate, advocate and promote the education, support and research for liver cancer.

A cornerstone of ALF support services is their national help line, 1-800-GO-LIVER, which receives about 6,000 calls each year from patients and family members seeking information and guidance.

The foundation also provides numerous educational programs held by staff across the country.

, which teaches adults about their liver and how to maintain its health.

, which teaches older teens and college age students about liver health and risk behaviors that can affect their liver.

, which is geared towards educating children in grades 3 through middle school on general liver wellness.

Although all of these programs are beneficial to patients, hepatitis in particular is a tremendous concern in the United States.

	“There are as many at 4 million Americans living with hepatitis C, and many are unaware that they have the disease.” Seim said. “Untreated hepatitis C is a leading cause for liver failure and a key indicator for liver transplants. Hepatitis C kills more Americans each year than HIV and it’s much more common.”

	Individuals who are part of the baby boomer generation, born between 1946 and 1964, have a higher risk for viral hepatitis. Furthermore, the rising heroin epidemic within the country is putting millions of more Americans at risk for liver damage that could lead to cancer.

	“The viral hepatitis education program is extremely important, but we touch on that through all our other adult programs as well,” Seim said. “The issue of viral hepatitis is certainly a tremendous concern in this country. We know that calls about hepatitis C comprise the majority of calls to our national help line.”

	The ALF is also involved in supporting research, with nearly $25 million awarded to date for young investigators in the early stages of their research careers. Additionally, in 2014 the ALF created the National Patient Advisory Committee (NPAC) to give patients a voice.

	“We began that NPAC with a cohort of approximately 30 patients with hepatitis C in various stages of non-treatment, treatment and cure,” Seim said. “That concept of a National Patient Advisory Committee to inform us, to be trained, and be ready to be that patient voice is a very important concept at the American Liver Foundation.”

	These patients were trained on various aspects of advocacy and media relations in order to give other patients a voice. The process of expanding the NPAC to include other diseases beyond hepatitis C is currently underway and will include those suffering from rare liver diseases, such as primary biliary cholangitis and fatty liver disease.

	Several goals of the ALF for 2016 are to raise awareness for the various forms of liver disease, including rare liver diseases, as well as the issue of liver transplants and organ donations.

	The ALF will also continue to advocate for liver cancer, which is currently on the rise.

	“We’ve had a very successful liver cancer awareness campaign both in 2014 and 2015 in October, which is liver cancer awareness month,” Seim said. “We will continue to address liver cancer in our advocacy and public education efforts.”

	Seim stresses the importance of patients taking control of their diagnoses and getting involved with advocacy groups.

	“It’s very important for patients to take an active role to understand what their treatment is and to establish an effective relationship with their health care provider, so that they can take advantage of the treatment regimen, properly manage the treatment, and be aware of any issues that may arise during treatment,” she said. “I think it’s important for caretakers to also know that an advocacy organization can provide support to them in the management of their family or loved one with liver disease. There are available resources to assist them and they’re not alone."

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There are currently 30 million Americans with some form of liver disease. Through education and advocacy, the American Liver Foundation wants to decrease that number.

American Liver Foundation Seeks to Address Current Issues in Liver Health

Although there is no scientific proof, there is a large amount of anecdotal evidence that shows emotional support for cancer patients can greatly improve their outcomes. This belief is what fueled the creation of Imerman Angels.

The advocacy group provides one-on-one support for patients fighting cancer, survivors and caregivers.

Imerman Angels was formed by Jonny Imerman 10 years ago after he received a cancer diagnosis at 26 years old and again at 28. During his battle, he had immense support from his family and friends. This experience caused Imerman to come to the conclusion that all patients should not have to navigate this journey alone.

With a background in advertising, Imerman started going from hospital to hospital and doctor to doctor, while also raising money through small events. By 2006, Imerman Angels was formally launched, with a primary focus on individual support within the cancer community.

Ben Bornstein, the newly appointed CEO and executive director of Imerman Angels, is a three-time cancer survivor who previously sat on the board of directors for the organization.

“It’s for cancer fighters,” Bornstein said. “It’s also for caregivers, like a child or parent of a cancer fighter, a sibling or even a friend, if you’re the primary caregiver.”

Mentor Angels, who are cancer survivors, are at the center of the organization as they lend support to those currently battling cancer.

“The whole point is that they’re providing information that the cancer fighter needs to have that’s outside the scope of their medical doctors and maybe their family and friends,” Bornstein said. “Someone who’s literally been in the same shoes as the person fighting the cancer, has made it through the other side, and has experienced some of the same side effects either medically or socially. They also act as the guiding hand and emotional support through the journey back to health.”

To match patients with Mentor Angels, the group looks at demographic information such as gender, age and type of cancer.

How a Mentor Angel interacts with a cancer fighter is dependent on the geographical location. If the match is not local, then communication is held over the phone, or via Facetime and Skype. As the relationship develops, they can communicate as much or as little as needed.

“Now if it’s a local match, which we strive for, if we can get the cancer type and all that matched up, then they can go with cancer fighters to treatments. They can go grab lunch, they can go for a walk in the park and just shoot the breeze — it just kind of depends on the relationship,” Bornstein said. “The beauty is we’re making the match as specifically as possible and then we’re letting the matched entities run with it.”

Although one-on-one matches are the most common, some Mentor Angels can have more than one. Currently there are 7,000 Mentor Angels and over 13,000 matches and a total of about 26,000 people who are involved.

Imerman Angels is headquartered in Chicago, but has a staff presence in Los Angeles and is looking to develop a full-time presence in New York.

“We’re the biggest in the world [at] what we do,” Bornstein said. “We’ve got a presence and matches in 50 states and 60 countries.”

The group consists of volunteers, a medical board of directors, and professional boards made up mostly of professions that help with fundraising and events.

Professional boards have also been set up in Los Angeles and New York, including race teams that participate in fundraising oriented marathons across the country.

“We’ve got a lot of people involved that aren’t on our payroll, which makes it great for how much we can accomplish with a relatively small team,” Bornstein said. “That is what the vision was 10 years ago, making sure folks didn’t have to face cancer alone and where it’s gotten to today.”

Thanks to the power of computing and databases, the group is able to make contact within 24 hours. Imerman Angels is a completely free service funded by private and corporate donations. Many cancer fighters who beat the disease end up becoming a Mentor Angel themselves.

“Many of them do, but it’s not a requirement,” Bornstein said. “A lot of them do because if they stayed with it and found it useful, most people coming through a cancer experience want to give back to somebody else in the next generation of people going through it.”

For patients who are newly diagnosed, Bornstein believes one of the first things they should do is listen to their physician and get the right care.

“I think it’s a combination of listening to their doctors on the medical side and getting an appropriate medical protocol in place,” Bornstein said. “Seek out support secondarily, through groups like us that provide direct help on that front, and then build up a nice network of family and friends that they trust and want to have involved to help see them through. I think with those three sides of the triangle, you’ve got a winning team.”

It’s also important for patients to take an active role in their diagnosis, and to continue the fight.

“It affects outcomes,” Bornstein said. “I mean, hospitals are busy, doctors are human. If you’re not critically evaluating what’s being said and what your options are, you’re selling yourself a little bit short on your treatment protocol.”

“We believe in being one’s own advocate,” Bornstein continued. “Secondarily, we do preach a lot of wellness and checking your body and things like that, because as we all know catching cancers early is a recipe for success, and catching them late makes it much more difficult to treat.”

Lauren Santye

American Liver Foundation Seeks to Address Current Issues in Liver Health

Going Through Cancer With an Angel By Your Side

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