POLICY PERSPECTIVE

How A Patient Saved Healthcare

Days after a new diagnosis with cancer, Senator John McCain returned to Washington to stand with two stalwart female Senators, Collins and Murkowski. Together, they struck a blow for both real healthcare reform under regular order and for our republic, calling for bipartisanship and a robust role for Congress. The various versions of “repeal and replace” legislation were defeated and the patient voice has seldom rung louder or with more impact.

What now? That is uncertain, but moving quickly to stabilize the ACA markets by approving subsidy payments to insurers on behalf of low-income beneficiaries is essential to averting premium increases and more people having few or no insurance options. Further efforts must address both 1) mitigating the financial risk of individuals and families engaging with the healthcare system, and 2) supporting the delivery of public health and individual health services in a manner both efficient and focused on optimal outcomes.

Introducing GLI's Advanced Advocacy Academy

Since 2014, Global Liver Institute has been committed to improving the lives of patients and family members affected by liver disease through advocacy. When it comes to our vision of liver health taking its proper place on the global health agenda, we cannot do it alone. Thus, we are very excited to invite patients and family caregivers to Washington D.C. on November 10th-11th 2017 to participate in our premier Advanced Advocacy Academy. With sessions led by expert physicians, policymakers, and communicators, participants will be equipped with essential information, empowered with strategies and tactics, and engaged with opportunities for sustained advocacy through our Liver Health Advocates Network. We offer a diverse set of tracks in legislation, drug development, patient-centric value frameworks, healthcare delivery and media designed to help patients and caregivers grow into a well-rounded and seasoned advocates.This is the first program of its kind to offer patients and family members affected by liver disease an opportunity to gain advanced advocacy skills. We are excited to develop the Advanced Advocacy Academy so this training creates a force for change in the liver landscape. Apply today here and contact us at a3@globalliver.org with any questions.

OPEN ADVOCACY OPPORTUNITIES

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) by clicking here.

To read about CMS’s “Updates to the Quality Payment Program to increase flexibility and reduce burdens”, click here. To read the public inspection document and submit your comments, click here.

To learn about the FDA’s “Developing a Framework for Regulatory Use of Real-World Evidence” public workshop and get the information needed to participate, click here.

FOR YOUR CALENDAR

August 2-5: NATCO 42nd Annual Meeting. St. Louis, MO

August 21: Webinar: How Can We Address Rising Rates of Hepatitis C Among California's Youth?

August 21-24: Precision Medicine Leaders Summit. San Diego, CA

September 6-8: 6th International Symposium on Hepatitis Care in Substance Users. Hudson, Jersey City/New York

September 7: Straight Talk: National Health Research Forum. Washington, DC

September 13-14: Rally for Medical Research. Washington, DC

October: Liver Cancer Month

October 16-17: Rare Diseases and Orphan Products Breakthrough Summit. Washington, DC

October 20-24: AASLD’s The Liver Meeting 2017. Washington, DC

October 31-November 2: 2017 PCORI Annual Meeting: Delivering Results, Informing Choices. Arlington, VA

November 1-3: World Hepatitis Summit. Sao Paulo, Brazil

November 10-11: GLI Advanced Advocacy Academy. Washington, DC

November 14-16: 13th Annual Personalized Medicine Conference. Boston, MA

November 17-18: International Viral Hepatitis Elimination Meeting. Amsterdam, The Netherlands

GLOBAL NEWS

British Liver Trust

British Liver Trust released a statement on a new study by the Foundation for Liver Research carried out by the Sheffield Alcohol Research Group stating that alcohol consumption will claim the lives of 63,000 people in England in the next five years. The British Liver Trust encourages people to be informed on the risk factors for liver disease and to take advantage of their online screening test, the Love Your Liver Health Screener. To read the statement and learn more about the British Liver Trust’s online screening test, click here.

The British Liver Trust worked with the National Institutes of Health and Care Excellence (NICE) to develop the new NICE Quality Standard for liver disease. The guidance includes standards in the identification, assessment, and management of liver disease in children, adolescents, and adults. The standard also includes areas of needed improvement in high-quality care. To read the British Liver Trust and NICE’s Quality Standard for liver disease, click here.

World Health Organization (WHO)

The WHO released a statement saying that they prequalified the first generic version of a drug critical in the treatment of hepatitis C. A generic version of the drug has the potential to reduce costs and expand access to treatment for those who need it. The development could expand access to affordable and quality treatment to countless patients in need. To read the statement, click here.

Canadian Liver Foundation (CLF)

The Canadian Liver Foundation issued a press release ahead of World Hepatitis Day stating that three-quarters of those at risk for hepatitis C do not know that the disease typically does not present symptoms. CLF urges those born between 1945 and 1975, to take the CLF online Hepatitis Risk Assessment questionnaire and to get tested for the disease. To read the press release and learn more about CLF’s online resources and recommendations, click here.

HHS NEWS

Food and Drug Administration (FDA)

The FDA issued a press release following approval of Vosevi for the treatment of hepatitis C. Clinical trial results demonstrated a 96-97% suggested cure rate, based on a 12-week post-treatment blood test detecting no trace of the virus. The drug provides an alternative treatment for those with all subtypes of hepatitis C and those who had been previously treated with sofosbuvir or other drugs for hepatitis C that inhibit the NS5A protein. To read the press release, click here.

The FDA released a statement via a blog post addressing the forthcoming inaugural meeting of its Patient Engagement Advisory Committee. The meeting will be held on October 11-12, 2017, and will be focused on the topic of the challenges of clinical trial design, conduct, and reporting identified by patients. This focus on clinical trials gives patients the opportunity to voice their concerns and for the FDA to gain insight on ways to better conduct clinical trials. To read the blog post and learn more about patient engagement, click here.

NGOS

National Academy of Medicine (NAM)

The National Academy of Medicine released a special publication titled “Effective Care for High-Need Patients: Opportunities for Improving Outcomes, Value, and Health.” The publication details ways to improve health outcomes while reducing treatment cost in high-need patients. The demographic accounts for nearly 50% of health care spending, but only 5% of all patients. To read the publication and learn more about high-need patients, click here.

National Organization for Rare Diseases (NORD)

NORD released the Rare Action Network’s Summer 2017 State Policy Legislative Tracker. The document shows which legislation NORD’s Rare Action Network tracks in the hope of improving the lives of patients and families with rare diseases. Currently, the Rare Action Network is taking action in 42 states and the District of Columbia. To read the release, click here, and to read the Summer 2017 State Policy Legislative Tracker document in full, click here.