Breaking News: Significant GLI Liver Policies Advance To Close Out 2019

Senator Tammy Duckworth Introduces Senate Companion to the LIVER Act of 2019

Washington, DC – December 19, 2019 - On Wednesday, Senator Tammy Duckworth (D-IL) introduced S.3074, a bill to amend the Public Health Service Act to provide for and support liver illness visibility, education, and research, and for other purposes. S. 3074 is the Senate companion to HR. 3016, the Liver Illness Visibility, Education and Research (LIVER) Act of 2019.

The LIVER Act properly adjusts the priority of the liver within federal agencies and modernizes systems currently in place to better address the unmet need of liver disease patients. It is a public health initiative that will help people of all ages, lifestyles, and ethnic backgrounds reduce their risk for liver cancer and related illnesses by enhancing the federal government’s research initiatives while empowering local entities to promote treatment and raise awareness. 

This legislation also rightfully establishes a starting point for future liver disease advocacy efforts and gives a voice to more liver cancer and liver disease patients who have been neglected for far too long.
The Global Liver Institute (GLI) has been actively involved in advocating for the advancement of this crucial piece of legislation. On October 31, 2019, the Advanced Advocacy Academy (A3) alumni participated in the GLI’s inaugural A3 Capitol Hill Advocacy Day centered around the LIVER Act. To close out October’s Liver Cancer Awareness Month, GLI collaborated with Congresswoman Nydia Velazquez (D-NY), and American Gastroenterological Association, Hepatitis B Foundation, Hep B United, AAPCHO, NVHR, NASH kNOWledge, and NASTAD to host an educational Congressional briefing entitled, "Liver Cancer Drivers and Disparities." The briefing included a key call to action on the LIVER Act.

As a nonprofit patient advocacy organization committed to improving the lives of individuals and families impacted by liver disease, we could not be more appreciative of Senator Duckworth’s recognition of the need for federal support and leadership for this critical public health issue affecting numerous of Americans.

We also greatly commend her inclusion of other critical liver diseases that act as crucial drivers of liver cancer, most importantly, nonalcoholic steatohepatitis (NASH). Of the many causes of liver cancer, NASH has emerged as a significant contributor to this disease.

With the introduction of both a Senate and House version of the LIVER Act, our work is not done. Please stay tuned for ways you can help us advance these critical pieces of legislation.  

The Trump Administration Implements Two Major Organ Donation Reform Policies

Currently, almost 14,000 people are on the liver transplant waiting list! On Wednesday, two major new proposed policies from the Trump Administration were announced that bring accountability, and take important steps towards repairing our broken organ donation and recovery system.
No longer are organ procurement organizations (OPOs) allowed to self-interpret and self-report their performance metrics!  Reg. 0938-AU02, is the first major overhaul of organ procurement standards by the Centers for Medicare and Medicaid Services (CMS) since 2006. The proposal implements a more stringent evaluation process for OPOs. Specifically, OPOs will now be subject to annual reviews requiring them to meet the donation and transplant rates of the top 25 percent. If they fail to meet this standard, CMS will make them revise their quality assurance and improvement program. According to the U.S. Department of Health and Human Services (HHS), 37 of the nation’s 58 OPOs currently are out of compliance with the newly proposed regulation. A second proposed rule from the Health Resources and Services Administration (HRSA), Reg. 0906–AB23, was implemented. It aims to ease the financial burden on living patients donating organs by reimbursing them for lost wages, childcare and eldercare expenses. Currently, the number of living liver donations is a fraction of the total number of liver transplants. In 2018, there were only 401 living liver donations out of 8,874 transplants. This proposed rule should incentivize and protect more living donors, and increase the number of available livers.

Both of these proposals are key pieces of President Trump’s Executive Order, Advancing American Kidney Health, that was highlighted on July 10  and 30, 2019.

Over the last year, GLI has been actively working with the Administration, HHS, CMS, and Capitol Hill on these critical issues. As stated previously, we believe that there is a clear disconnect between the organs that are being donated and the ones that are being made available for transplant. The executive order, and now both of these proposals, rightfully implement measures that reform the organ procurement and management system to increase the supply of transplantable organs and protect living donors. With almost 2,000 liver patients dying every year waiting for an organ, we applaud any action taken to modernize the system. We look forward to continuing to work on future initiatives that shrink the organ waiting list. We will not stop until the waiting list is fully eliminated!

National Institutes of Health (NIH) Announces Trans-NIH Research to Cure Hepatitis B 

An effective vaccine to prevent hepatitis B virus infection has been available for nearly 40 years, yet millions of people worldwide continue to become infected with the liver-attacking virus and more than 600,000 die from its complications each year. Scientific discoveries within the past decade suggest that a hepatitis B cure is possible.  NIH has developed and released a new Strategic Plan for Trans-NIH Research to Cure Hepatitis B which focuses on three key research areas. Priorities include a better understanding of hepatitis B biology; developing and sharing resources to support research and development; and creating strategies to cure and prevent hepatitis B while strengthening public health efforts to promote screening, vaccination access, adherence to treatment. The strategic plan builds on NIH’s ongoing hepatitis B research portfolio and the U.S. National Viral Hepatitis Action Plan. NIH sought input from academia, patient advocacy organizations, private and nonprofit companies, government organizations, and clinical trial networks funded by the NIH. Most importantly this action builds on one of the goals of the LIVER Act and follows through on the mission of GLI. The trans-NIH strategic plan further advances goals to end the silos of funding for liver diseases and increase the interoperability of agencies on liver diseases. It brings liver health one step closer to its proper place on the global public health agenda consistent with its prevalence and impact. 

About the Global Liver Institute

The Global Liver Institute is a 501(c)(3) tax-exempt not-for-profit organization, headquartered in Washington, D.C., United States, with offices in the U.S. and Europe. GLI's vision is for liver health to take its place on the global public health agenda commensurate with its prevalence and impact. GLI's mission is to improve the impact of the liver community by promoting innovation, collaboration, and scaling optimal approaches to eradicating liver diseases.

For more information, visit www.GlobalLiver.org, Follow us on Twitter @GlobalLiver, Facebook at www.facebook.com/GlobalLiver or Instagram @GlobalLiverInstitute.

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Media Contact
Andrew Scott
Email: ascott@globalliver.org