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Care Coordination and Chronic Liver Diseases: The Importance of Liver Health

JULY 28, 2016

Global Liver InstituteBy Donna Cryer, President and CEO of the Global Liver Institute (GLI)

People with chronic liver disease often face many challenges before starting the process to control their health related condition. In fact, the vast majority of individuals living with chronic liver disease are completely unaware that they even have a disease at all.

Due to the liver’s resilience and ability to regenerate, many of the more than 100 types of liver diseases take years to show symptoms, and as a result, liver disease diagnosis is often delayed until patients are over 65. Given this troubling fact, it is essential to ensure Medicare beneficiaries have access to the options and services needed to treat the appropriate diagnosis.

As the President & CEO of the Global Liver Institute, and a liver transplant recipient, I strive each day to ensure patients have access to the treatments they need to survive. Each day I work with patients, hepatologists (liver disease specialists), oncologists, primary care doctors, nurses and other healthcare professionals who all share one common goal: finding a sustainable solution to treating chronic liver disease.

Diagnosis is often difficult, and varies depending on the type of illness, particularly the auto-immune and fatty liver diseases. Although simple blood tests can identify viral hepatitis, unfortunately many people are not getting screened for hepatitis B or C which leads to challenges down the road.

For example, hepatitis C kills more Americans than any other infectious disease – an all-time high of 19,659 in 2014. Surprisingly, the greatest concern (75 percent of new cases) falls on baby boomers who in many cases unknowingly have been living with the infection for years.[1] Chronic infections like hepatitis B & C are linked with increased rates of primary hepatocellular carcinoma (“liver cancer”). Liver cancer is the only kind of cancer where the death rate is increasing and not decreasing like most cancers. These unusual statistics make this year’s World Hepatitis Day (July 28) an opportune time to focus on improving care for patients living with chronic liver diseases.

The Liver – It’s Integral to Your Health

The liver has over 500 functions that contribute to energy production, food digestion and drug metabolism. Without liver equivalent alternatives like dialysis for kidney disease, or a left ventricular assist device (LVAD) to keep the heart pumping blood, liver disease can compromise other organ system functions, and can exacerbate other diseases. What’s more, many medications and biological functions are passed through the liver or based on liver pathways, so having chronic liver conditions may limit the patients’ treatment options.

When patients from chronic liver disease have multiple specialists, in addition to their primary care physician, during the course of their care, communication often proves to be a challenge. This common miscommunication between providers makes the patient’s responsibility to relay their own health history and be their own patient advocate more important than ever – especially for people with chronic liver diseases who have multiple comorbidities.

GLI has partnered with the MACC Task Force to develop a pocket guide – focused on Liver Diseases and Care Coordination – for patients. The guide at this link provides six tips including:

  1. Get screened
  2. Get vaccinated
  3. Add a hepatologist to your care team
  4. Ask for a comprehensive treatment plan
  5. Understand the care coordination services available to you through Medicare or Medicare Advantage Plan
  6. Seek out support services

The Global Liver Institute is currently working on a care guide for patients and their doctors to help increase knowledge of the unique care schedule for chronic liver disease. Additionally, GLI has partnered with Johns Hopkins on a transplantation program to optimize information available for clinical care guidelines, care coordination and shared decision-making for the increasing number of transplant recipients 10, 15 and 20 years’ post-transplant.

Additionally, GLI is also working closely with the World Hepatitis Alliance on sharing content for World Hepatitis Day to further patient advocacy, such as our Cure Campaign (CureCampaign.org), which works with advocates and Medicaid directors to find solutions to help states meet goals in terms of eradicating hepatitis.

Jonathan Mermin, MD, Director of CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB prevention has said: “Once Hepatitis C testing and treatment are as routine as they are for high cholesterol and colon cancer, we will see people living the long, healthy lives they deserve.” This World Hepatitis Day, join our efforts as we work to make the complexities surrounding chronic liver disease more clear and care relating to it more coordinated.

[1] http://www.cdc.gov/media/releases/2016/p0504-hepc-mortality.html