Not the Halloween Liver Policy Issue


Not the Halloween Liver Policy Issue

It would have been very easy to write a spooky, scary Halloween issue of the policy update - liver cancer rates are on the rise, access to health insurance coverage is still endangered by Zombie bills and regulations to undermine the Affordable Care Act, and young people are being driven to need life-saving liver transplants by fast progressing fatty liver disease. However, at GLI we choose hope. At a recent Senate briefing representatives of ASCO and the National Cancer Institute forcefully made the case for fighting liver cancer and pronounced obesity “a greater carcinogen than tobacco or sunshine”.

The Veteran’s Administration has driven down rates of hepatitis C by 70% by adopting an aggressive treatment strategy which can be a model for the nation.  The recent Liver Meeting, the largest annual conference of hepatologists in the United States, was bookended by the GLI NASH Council launch, the first patient-led effort in the U.S., which enjoyed unprecedented support from NHLBI, NIDDK, European partners, and organizations such as the American Heart Association, AACE, and the Endocrine Society, and a Congressional briefing on the epidemic of fatty liver disease and NASH by AASLD.  In short, liver advocacy is growing and it matters. Liver advocacy can be effective in changing the conversation and the policies that support liver health.  That is why I am so excited to help more liver patients and caregivers increase their advocacy capabilities at the GLI A3 (Advanced Advocacy Academy) November 10-11 here in Washington, DC at my beloved alma mater Georgetown University Law Center.

- Donna Cryer, JD, President & CEO, GLI


  • Nominations are now open for the 2018 Rare Impact Awards. If you or someone you know has done outstanding work and had a positive impact on the rare disease community in 2017, nominate them for the 2018 Rare Impact Award.  

  • To contribute to future health IT policies and standards, apply to become a member of the Office of the National Coordinator for Health Information Technology's (ONC) Health IT Advisory Committee (HITAC).

  • Participate in the HOPE Study, a hepatitis B and C observational, longitudinal, prospective study. Participants will be seen on an annual basis with optional additional visits for up to 10 years and provide samples for research and evaluation of disease progression.

  • Are you a liver cancer patient or survivor? The Exercise Oncology Lab at the University of Illinois at Urbana-Champaign is conducting an online study examining exercise programming and counseling preferences of liver cancer patients and survivors.


Advanced Advocacy Academy (A3)

GLI is proud to host the Advanced Advocacy Academy (A3), a workshop designed to train patients with the skills they need to conduct effective advocacy. Learn more about becoming a Liver Health Advocate and apply at


Liver Cancer Landscape

GLI recently completed a landscape assessment of cancer advocacy organizations examining the liver cancer-specific resources available to patients and healthcare professionals specific. The study was done from the perspective of a naive consumer as to mimic the patient experience in finding resources specific to a diagnosis of liver cancer. Read the study to learn more about liver cancer resources and their availability.


NASH Council

On October 18, 2017, GLI convened the first annual NASH Council. GLI’s NASH Council aimed to shine a spotlight and coalesce an expanded set of stakeholders, in addition to hepatology, around the urgency of developing mechanisms for quantifying and addressing the silent epidemic of fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) in the U.S. and abroad. Current estimates are that as many as 1 in 4 people already have NAFLD or NASH yet these conditions are underrecognized, underdiagnosed, and undertreated.


World Health Organization (WHO)

WHO released new information on the World Hepatitis Summit 2017, which is being held in Sao Paulo, Brazil. The theme for this year’s Summit is “Implementing the Global Health Sector Strategy on Viral Hepatitis (GHSS): Towards the elimination of hepatitis as a public health threat”. The program, which seeks to promote advocacy, open communication, and learning, will include viral hepatitis data, estimated hepatitis B statistics, treatment innovation, and diagnostic challenges. Learn about the summit and stay informed on what is happening at the meeting online.


Food and Drug Administration (FDA)

The FDA convened the first meeting of the Patient Engagement Advisory Committee (PEAC) on October 11, 2017. The PEAC consists of patients, caregivers, and patient advocates who strive to give FDA insight into patient perspectives, benefit and risk analysis, and health priorities and outcomes. The first PEAC meeting examined patient engagement in clinical trials, exploring topics ranging from enrollment to retention to communication. Read the FDA press release to learn more about the PEAC and patient engagement at FDA.

Centers for Disease Control and Prevention (CDC)

CDC issued a press release on the increasing rates of cancer associated with obesity and overweightness tied to their October Teleconference: Obesity and Cancer. The 13 cancers mentioned account for up to 40% of all cancer diagnoses in the United States. Liver cancer was named as one of these 13 obesity and overweight linked cancer types with increasing rates. Read the press release and the transcript from the October Teleconference: Obesity and Cancer.

U.S. Department of Health and Human Services (HHS)

Eric Hargan was sworn into office as Deputy Secretary on October 6, 2017. On October 10, 2017, President Trump appointed Eric Hargan as Acting Secretary of the U.S. Department of Health and Human Services. Learn more about Acting Secretary Hargan and his work with HHS.

National Cancer Institute (NCI)

Norman Sharpless, M.D., took the oath of office on Tuesday, October 17, 2017, to become the 15th director of NCI. Director Sharpless succeeds Harold Varmus, M.D., who stepped down as director in March 2015. The interim director, Douglas Lowy, M.D., has been NCI’s acting director since April 2015. Read the press release and learn more about Director Sharpless.

NCI’s Cancer Currents blog posted an article about liver cancer immunotherapy drug nivolumab (Opdivo®). The article detailed the drug’s accelerated approval for some patients with advanced liver cancer (hepatocellular carcinoma) who had previously been treated with the targeted therapy sorafenib (Nexavar®). Read the blog post and learn more about drug development in the world of liver cancer.


Mechanisms of Disparities in Chronic Liver Diseases and Cancer. Funds available from NIH: $200,000. Application deadlines: April 4, 2018 or April 4, 2019.

HIV/HCV Co-Infections in Substance Abusers (R01). Funds available from NIH: $3,000,000. Application deadline: January 8, 2018.

HIV and Hepatitis B Co-Infection: Advancing HBV Functional Cure through Clinical Research (R21). Funds available from NIH: $275,000. Application deadline: May 8, 2020.


Policy UpdatesDonna Cryer