July Health Policy Update


Liver Patients Will Feel the Impact of GOP Repeal and Replace Efforts

Infants and Children

Nearly 45% of all births in the United States are covered by Medicaid. The proposed cuts to Medicaid will severely impact those born with liver diseases such as biliary atresia and other pediatric liver diseases, leaving the youngest liver patients lacking necessary coverage and care.

Young Adults

The Better Care Reconciliation Act of 2017 preserves the option for patients to remain on their parents’ insurance plans until the age of 26, providing coverage and care for young adults with liver disease.


The majority of Medicaid dollars currently go to people with disabilities. For some people, liver disease is their disability. The cuts in Medicaid funding will harm these patients, leaving an already vulnerable population at an even higher risk.

Baby Boomers

The baby boomers who do not yet qualify for Medicare are facing a decrease in subsidies in the individual market along with an increase in rates. Patients aged 59-64 can be charged up to five times more than their younger counterparts aged 26-58, reaching up to 16.2% of their annual income. As the population most at risk for liver diseases such as hepatitis C, many baby boomers will not be able to afford to maintain the coverage that they need.

All Liver Patients

The Better Care Reconciliation Act of 2017 states that insurance companies are required to accept all applicants, regardless of medical status. However, states have the opportunity to ask to reduce required coverage, known as essential health benefits.  This clause underscores the increasing importance of state-level advocacy moving forward so that liver patients maintain the best possible coverage and care.


Congressman Jerrold Nadler (D-NY) and Congresswoman Jaime Herrera Beutler (R-WA) introduced Living Donor Protection Act of 2017(H.R.1270), to protect the rights of living organ donors. The act advocates for living donors by prohibiting changes in insurance coverage and premiums, ensuring that they can take time off to recover from their procedures according to the Family and Medical Leave Act (FMLA), and by directing the US Department of Health and Human Services to update live organ donation materials by reflecting the changes stated in this act to encourage further donation. To read the press release, click here.


European Liver Patients’ Association (ELPA)

The first European-wide NAFLD-NASH Policy Summit convened on May 31, 2017, in Brussels, Belgium. The event, organized by ELPA, focused on the public health threats that NAFLD and NASH present to Europe and how the burden of these diseases will affect the sustainability of European healthcare systems. The summit aimed to shine light on the importance of these diseases in the public health agenda in the hopes of increasing their policy and treatment priority. To read the full summary of the summit and learn more about what ELPA is doing to innovate NAFLD-NASH policy, research, and treatment, click here.

The ACHIEVE (short for Associations Collaborating on Hepatitis to Immunize and Eliminate the Viruses in Europe) coalition was recently launched in an effort to eliminate viral hepatitis in the EU by 2030. The coalition’s goals are in line with those of the World Health Organization: viral hepatitis elimination by 2030. To read ELPA’s press release, click here, and to read about WHO’s “Combating hepatitis B and C to reach elimination by 2030”, click here.  

British Liver Trust

A recent UK survey revealed that only 12% of citizens have been tested for or have discussed liver disease with their doctor, and that nearly 75% of liver disease diagnoses are made when a patient is in the late stages of his or her disease. With liver disease being the third most common cause of premature death in the UK, the British Liver Trust launched the 2017 Love Your Liver Campaign to raise awareness of liver disease risk factors and to improve screening rates and early diagnoses. To read about the campaign, click here.


Centers for Medicare and Medicaid Services (CMS)

CMS recently published a press release titled “High Costs, Lack of Affordability: Most Common Factors that Lead Consumers to Cancel Health Insurance Coverage”. The release details two new reports, the Effectuated Enrollment report and The Health Insurance Exchanges Trends report, detailing health insurance enrollment trends. CMS Administrator Seema Verma notes the importance of cost and affordability in patients’ decisions to cancel or terminate coverage. To read the press release and the two new reports, click here.

U.S. Department of Veterans Affairs (VA)

The Veterans Transplant Coverage Act of 2017, introduced by Representative John Carter (R-TX), aims to protect veterans requiring organ transplants. This bill requires the VA to provide eligible veterans coverage for live donor transplant operation procedures regardless of the live donor’s VA health care eligibility and regardless of the facility’s status as a VA hospital. To read the bill, click here.  

U.S. Food & Drug Administration (FDA)

FDA Commissioner Scott Gottlieb recently published a blog post titled “FDA Working to Lift Barriers to Generic Drug Competition”. Dr. Gottlieb notes a problem that many patients face: not being able to afford life-saving medication. The FDA can influence the competition in the market for prescription medication by approving lower-cost generic medications. In order to do this, the FDA is working on the Drug Competition Action Plan and is convening a meeting to discuss standards and procedures related to generic drug approvals and innovation in pharmaceutical development. To read Dr. Gottlieb’s blog post, click here, and to read the official notice of public meeting and request for comments, click here.


Patient-Centered Outcomes Research Institute (PCORI)

A recent PCORI blog post outlined the new treatment options for hepatitis C, stating that a balance is being established between curing the disease and prioritizing the patient’s quality of life. Constant and innovative research on hepatitis C makes for a steady stream of new treatment options, and also makes for difficult decision making when choosing the best treatment path for each individual. Research is being done to compare treatment options for hepatitis C patients so that better informed decisions can be made on the individual level. The blog post states the importance of focusing on patients’ perspectives to determine treatment guidelines. To read the blog post, click here.


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.



Senate Majority Leader Mitch McConnell

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