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While a divided Congress and the upcoming Presidential campaign year make for challenging times for policymakers, Global Liver Institute is committed to advocating for liver patients at all levels of regulatory and legislative decision making. With Congressional activity slowed, GLI is active at all levels of advocacy to educate regulators and legislators, impact federal agency actions, and support the liver patient voice for involvement and decision-making with all policymakers.

Policy Developments at Global Liver Institute

GLI Applauds Dr. Monica Bertagnolli’s Nomination as Director of the National Institutes of Health

Donna R. Cryer, founder and CEO of GLI, shared the following quote in response to Dr. Bertagnolli’s nomination: “All of us here at Global Liver Institute are grateful for President Biden nominating Dr. Monica Bertagnolli to be the next NIH director. We appreciate that Dr. Bertagnolli is a cancer survivor and will continue to drive forward the Cancer Moonshot goals to end cancer as we know it. With her background coming from rural America, she brings to the job a fundamental recognition of the challenges facing people who struggle to access health care. We share her concern that clinical trials need to be more diverse, a significant challenge for liver disease and cancers that disproportionately affect people of color. We are excited to work with Dr. Bertagnolli as she leads NIH with a focus on collaboration, as she has demonstrated in her leadership of the National Cancer Institute.” Read more.

GLI Encourages Robust Support for H.R. 2544 to Modernize and Reform the U.S. Organ Procurement and Transplantation Network

This bipartisan legislation responds to the urgent need for reforming the organ procurement transplantation network (OTPN) by breaking up the national monopoly contract so that the Health Resources Services Administration (HRSA) can run an open, competitive process and thus fixing this broken system. Reach out to your legislators today to support the bill!

GLI Provides Comments on the NIDDK Advisory Council’s Report of the Health Disparities and Health Equity Working Group

Global Liver Institute provided comment on the Report of the Health Disparities and Health Equity Working Group of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Advisory Council supporting NIDDK’s recommendations.

GLI Frustrated by FDA GIDAC Committee Failure to Recognize Serious, Unmet Need of Liver Patients in Rejection of Obeticholic Acid for Pre-Cirrhotic Fibrosis Due to NASH

Despite acknowledging that OCA met the endpoint established by the FDA of reducing fibrosis by at least one stage, the FDA’s Gastrointestinal Drugs Advisory Committee (GIDAC) voted against approval for treatment for NASH. Read more here.

GLI Finds New AHRQ Study to be a Call to Action for Inter-Agency Research Collaboration on Links Between Nutrition and Liver Disease and Liver Cancer

A systematic review from the Agency for Health Care Research and Quality (AHRQ) highlights what we have known to be true: there are few studies that look at the impact of nutritional interventions on cancer health outcomes, and those that do exist are prone to bias. Nutrition can be a significant factor leading to obesity and NASH, many of whom develop liver cancer. This review should be a call to action for more inter-agency research collaboration from the National Cancer Institute, the National Institutes for Diabetes and Digestive and Kidney Diseases, the Centers for Disease Control and Prevention, the Veterans Administration, and others to better understand the role of nutrition in liver diseases associated with liver cancer.

GLI Supports the Living Donor Protection Act (H.R. 2923)

Bipartisan legislation was introduced to protect living organ donors and remove barriers to greater donation. The bill addresses tactics to deny or limit coverage by insurers, family and medical leave for donors, and public awareness. Click here to contact your Member of Congress through the American Association of Kidney Patients Action Center.

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Further reading: Organ transplants