How Do We Design Patient-Centered Insurance Coverage?


How Do We Design Patient-Centered Insurance Coverage?

GLI’s President and CEO, Donna Cryer, spoke at the American Health Insurance Plans (AHIP) National Health Policy Conference in Washington D.C., where healthcare leaders addressed innovative health policy solutions.

At the AHIP Conference I had the opportunity to speak on a panel about consumer health care perspectives which allowed me to address liver disease and other public health crises through a patient-centered focus. Comprehensive patient-centered care requires the development of a new framework for thinking about coverage. I proposed a novel Convenient, Personalized, and Transparent (CPT) approach.

  1. Care is convenient when it moves closer to the patient in both location and time.

  2. Care is personalized from better use of genetic diagnostics, or from customized delivery and treatment selection based on a person’s culture, values, lifestyle, goals, and other social determinants of health.

  3. Care is transparent when patients have the cost and quality information at the physician, practice, and pharmacy levels to enable them to make informed decisions.

Donna Cryer, JD, President & CEO, GLI

GLI CEO Donna Cryer with fellow panelists Elisabeth Rosenthal, Editor-in Chief of Kaiser Health News, and Amy Tendrich, Founder/Editor-in-Chief of DiabetesMine

GLI CEO Donna Cryer with fellow panelists Elisabeth Rosenthal, Editor-in Chief of Kaiser Health News, and Amy Tendrich, Founder/Editor-in-Chief of DiabetesMine

Policy that aligns with Convenient Personalized and Transparent Framework

Policy that aligns with this new CPT framework is emerging. The Cancer Care Planning and Communication Act (H.R. 5160) was introduced this month by Representative Mark DeSaulnier (D-CA-11). The bill aims to encourage communication between physicians and patients through the development of comprehensive cancer care plans. Providing physicians with reimbursement incentives for greater communication is an effective strategy for developing a personalized and convenient approach.

The Advancing Access to Precision Medicine Act (H.R. 5062), sponsored by Rep. Eric Swalwell (D-CA-15), would direct the Department of Health and Human Services to develop recommendations on how to best lower barriers to genomic testing and precision medicine. Access to genomic testing is vital as more treatments are personalized for each patient. The sponsor of this bipartisan bill is currently seeking additional Republican cosponsors.

And finally, on March 16th the Centers for Medicare & Medicaid Services approved coverage of Next Generation Sequencing for cancer patients. Next Generation Sequencing (NGS) is used to tailor treatments to each patient’s specific genetic information. Access to NGS will be instrumental in providing personalized care opportunities to patients as medicine continues to be driven forward by research into genetic treatments.

These advances are vital signs of progress at the federal level. At the same time states, continue to push ahead with their own patient-centered reforms. As patient advocates, we need to support actions that place the consumer perspective first and focuses on convenient, personalized, and transparent care.


The Duke-Robert J. Margolis, MD, Center for Health Policy at Duke University, supported by a cooperative agreement with FDA, is hosting a public workshop titled Evaluating Inclusion and Exclusion Criteria in Clinical Trials. Register for the April 16 event. GLI President and CEO, Donna Cryer, will be speaking at the workshop.  

PCORI values patient and stakeholder input. Learn more and apply to join PCORI as a merit reviewer, a peer reviewer, an advisory panel member, or a PCORI ambassador.

NIH is seeking applications from genomic centers for the All of Us Research Project. Applying facilities must be in the US and have the capacity to sequence 200,000 genome-wide assays per year. Applications are due by July 2018.


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GLI’s Resources Page

GLI has published a unique curated list of education, support, and tools for patients with liver disease and the people who support them on the GLI Resources Page. This page includes a comprehensive liver glossary, fact sheets, online support groups, and links to external organizations and communities with additional liver resources.

GLI's NASH Council

GLI is holding its second convening of the GLI NASH Council on June 1, 2018 in Washington, DC. This members-only meeting brings together an expanded set of stakeholders to discuss current research, developments, and hurdles in fatty liver diseases and NASH. To find out more information, contact

Want to be a member? Fill out the Membership Application Form.

NASH Council Workgroups

GLI’s NASH Council Policy Workgroup is seeking experts in health policy and legislation. We seek the help of those who can offer valuable insight into creating and/or recommending policies to improve patient experience and those with government affairs experience. To nominate yourself or someone else, please contact Jazmin Hampton at To receive information about other NASH Council workgroups, please email and sign up for GLI’s NASH News, our monthly NASH report.


State Action

Michigan passed a law (HB 4472) with the intent of increasing patient access to biosimilar medication. The law aims to increase the ability of pharmacies to switch drugs to cheaper generic or biosimilar options. Idaho (H 0339) and Wyoming (SF 0075) passed similar laws that allow pharmacies to offer alternative drugs in the same therapeutic class as a patient’s current medication. While encouraging savings is important, GLI is committed to policies that do not interfere with the highly individualistic nature of liver and other chronic diseases. Each patient’s individualized treatment should be prioritized, and the best possible drug should not be compromised through non-medical drug switching practices or a lack of communication between the prescriber, patient, and pharmacy.

Oregon passed a law (HB 4005) that is designed to increase drug pricing transparency. Drug manufacturers will now be required to report marketing and research costs for any price increases greater than 10 percent.

Virginia passed legislation (HB 1177) that aims to decrease prescription drug costs by regulating pharmacy benefit managers (PBMs). Similar bills were passed in South Dakota (SB 141) and Mississippi (HB 709). The bills remove a “gag-clause” that prohibits pharmacies from telling customers about cheaper options, and they prohibit PBMs from requiring patient copays for a drug whose cost is greater than they would pay if they did not utilize insurance. While PBMs do play an important role in negotiating lower prices, there is a need to increase transparency so patients are able to receive the lowest cost option that best suits their medical needs.



World Health Organization (WHO)

This year’s World Health Day, held on April 7, 2018, focuses on the theme of “Universal Health Coverage: Everyone, Everywhere.” WHO provides information on how many people do and do not have access to quality essential healthcare services. Explore some of WHO’s key messages and learn more about how you can get involved.

Canadian Liver Foundation (CLF)

Canada celebrated Liver Month this March with a campaign that highlighted the liver’s role in the body. Comparing the human body to a luxury car, this campaign explained how the liver is like an auto engine. Watch CLF’s YouTube Liver Month video, learn more about liver health, and explore ways to #CheckYourEngine.


US Department of Health and Human Services (HHS)

Idaho challenged the Affordable Care Act (ACA) last month when it said it would approve insurance plans that do not comply with the ACA standards. However, HHS ruled that Idaho must continue to adhere to federal standards. While this action encouraged support for the ACA, CMS administrator Seema Verma wrote in her letter to Idaho Governor Butch Otter to keep trying for alternative insurance options. This rebuke came as the public comment period on a proposed rule to expand the role of association health plans—often used as vehicles for fraud—came to a close.

US Food and Drug Administration (FDA)

FDA gave a boost to precision medicine and genomic testing when it approved the first direct to consumer medical genetic test. The 23andMe test screens for three mutations in the BRCA breast cancer genes. Liver disease and cancer offer similar opportunities for precision testing opportunities. Just as variations in the BRCA genes can predispose individuals to breast cancer, polymorphisms in the genes PNPLA3 and TM6SF2 have been shown to promote the development of NASH. Increased access to tests that can detect these variations paired with proper counseling to help interpret results could provide options for earlier screening and instigate efforts to slow cirrhosis progression.

Center for Disease Control (CDC)

HHS Secretary Alex Azar appointed Dr. Robert Redfield to be the next director of CDC following the resignation of Breda Fitzgerald last month. Dr. Redfield is an infectious disease researcher who worked within the U.S. Military HIV Research program. Democrats and other groups have come out against the appointment citing past scientific misconduct and support for controversial HIV policies. He currently runs a Maryland clinic that provides services to 6000 HIV and Hepatitis C patients.  

Centers for Medicare and Medicaid Services (CMS)

CMS approved a Medicaid work requirement request from Arkansas. The state joins Indiana and Kentucky in requiring work or community engagement in order to apply for insurance benefits. In their letter CMS also deferred on a decision to roll back the Medicaid expansion that has provided an additional 300,000 people with insurance in Arkansas.

National Institutes of Health (NIH)

President Trump signed a spending package into law that boosted the NIH budget by three billion dollars. Each department saw funding increases with specific earmarks going towards Alzheimer's Research and the All of Us precision medicine campaign. This appropriations bill will fund the government through September.

US Department of Veterans Affairs (VA)

Senator Bill Cassidy (R-LA) introduced the VICTOR Act of 2018 (S. 2473). This bill would increase the eligibility of veterans who require an organ or bone marrow transplant to receive hospital services and medical care at qualified institutions. A companion bill (H.R. 2601) sponsored by Representative Neal Dunn (R-FL-2) passed the House last November. The VICTOR Act would provide veterans with much needed accessibility for liver patients who reach the point of requiring a transplant.


Silvio O. Conte Digestive Diseases Research Core Centers (P30 Clinical Trial Optional). Funds available from NIH: $750,000. Application deadlines: June 1, 2018 or March 1, 2019

Epidemiologic Research on Emerging Risk Factors and Liver Cancer Susceptibility (R01 - Clinical Trial Not Allowed). Funds available from NIH: Application budgets are not limited. Application deadlines: July 5, 2018 or November 5, 2018

Secondary Analyses in Obesity, Diabetes and Digestive and Kidney Diseases (R21 Clinical Trial Optional). Funds Available from NIH: $200,000. Application deadlines: July 16, 2018, or November, 2018

Early-Stage Preclinical Validation of Therapeutic Leads for Diseases of Interest to the NIDDK (R01). Funds available from NIH vary with project scope. Application deadlines: July 12, 2018, November 12, 2018, and March 12, 2019.



California Attorney General Xavier Becerra: Mr. Becerra has emerged as the primary legal roadblock for many of the Trump Administration’s more controversial healthcare decisions. He is launching a legal strike force that seeks to enforce federal health laws surrounding access and delivery in California.