#OctoberIs4Livers
POLICY PERSPECTIVE
#OctoberIs4Livers
October is Liver Cancer Awareness Month! GLI is promoting awareness and action with a month-long media campaign to generate more public recognition of liver cancer, the burden it has on patients’ and caregivers’ lives, current research, and the importance of liver cancer screening for all liver disease patients. GLI began the month with an educational press release, a designated hashtag #OctoberIs4Livers and a specific call to action. Each week in October, GLI is focusing on a different topic providing background information on liver cancer, awareness of the importance for liver patients of regular screening, advocacy opportunities, heartfelt patient and caregiver stories, and new innovative research programs.
As a part of our campaign for increasing screening awareness and prevention in liver cancer, GLI has drafted a letter to California officials, regarding the State’s first annual “Cancer Screen Week.” The initiative encourages greater awareness of the need for screenings in order to achieve early intervention when cancers are most successfully treated. The assembly’s resolution highlights statistics for breast, lung, skin, cervical, and colorectal cancers, but failed to address the growing epidemic of liver cancer which is very responsive to early treatment. American Cancer Society (ACS) estimates the 5 year survival rate for liver cancer is as low as 18%. GLI asks patients, caregivers, healthcare professionals and advocates to join us in signing and sending this letter to advocate for the addition of liver cancer to screening information.
GLI is also excited to announce the fulfillment of our longstanding advocacy goal with the creation of the Liver Cancer Program, a joint collaboration between Cancer Center Research (CCR) and NIH, aimed at treating liver cancer. This partnership, NIH-CCR-LCP, is developing a multidisciplinary approach aimed at improving preventive efforts, early detection, diagnosis, and treatment of liver disease. Led by Xin Wein Wang Ph.D. and Tim Greten M.D., LCP’s mission will bring professionals with a wide array expertise together to develop innovative and cutting edge research aimed at treating liver cancer. LCP’s mission is to optimize patient diagnoses as well as advance novel research, such as immunotherapy, in both laboratory and clinical settings that will help to improve patient outcomes. The center encourages any medical professionals who have prospective liver cancer patient cases to submit them for consideration into their new clinical trials or for consultation with their team.
OPEN ADVOCACY OPPORTUNITIES
As part of its continuing Patient-Focused Drug Development initiative, FDA is hosting a public workshop October 15-16th to examine patient and caregiver input methods addressing what is most important to them with respect to burden of disease, burden of treatment, and the benefits and risks in the management of the patient’s diseases. A second part of the meeting will address clinical trials and determine whether such research is including and measuring appropriate variables. GLI encourages liver patients and caregivers to review the FDA meeting materials and to consider making input or attending.
FDA has announced draft guidance on establishing further blood collection and testing for donor screening patients that show reactivity to Hep C antibodies. The agency is seeking both written and electronic comments for the guidance document to be submitted before December when it will be finalized.
CDC has announced a meeting on the prevention and treatment of HIV, Viral Hepatitis, and STDs. The meeting will discuss current incidence rates in these diseases and current treatment options. It will seek to develop strategies for female and youth populations affected by these diseases and potential telemedicine initiatives to help in prevention and treatment. The meeting will permit both oral and written comments to be submitted and will be available to the public to attend in person or view via webinar.
POLICY DEVELOPMENTS AT GLI
GLI held its second annual Advanced Advocacy Academy (A3) on September 21 and 22, 2018. Liver patients, caregivers, and professionals gathered in Washington, DC at Georgetown University Law Center Campus to become better educated, equipped and empowered to advocate for liver health through presentations and interactive workshops on media and storytelling, state advocacy, patient-driven research, and the role of the caregiver in health care system design.
FOR YOUR CALENDAR
October 15-16: NORD’s 2018 Rare Diseases and Orphan Products Breakthrough Summit. Washington, DC.
November 9-13: AASLD's The Liver Meeting, San Francisco.
November 30-December 1: 9th Annual Ruesch Center Symposium: Fighting a Smarter War Against Cancer. Washington, DC.
January 30-February 1: 6th Annual Cholangiocarcinoma Foundation Conference
Let us know about events we can add to our calendar. Send notices to info@globalliver.org
STATE ACTION
The California state legislature has passed SB910, a law that prohibits health insurers from selling, renewing, or offering any form of short term limited health policies to individuals. These types of policies are found to be in violation of preexisting condition coverage acts, are harmful to liver patients, and, as of January 1st 2019, will no longer be available in the state.
The Michigan legislature has enacted work requirements for Healthy Michigan, the state’s Medicaid program, However, the law requires Federal approval. Under this new requirement individuals must work or be enrolled in job/vocational training programs for 80 hours a month to be eligible for Medicaid. Those who fail to meet the requirement for more than 3 months will be dropped from Medicaid and will need to wait until the following cycle to apply again. This change however could put patients, especially those waiting for liver transplants, at risk of losing their Medicaid benefits. For a more detailed look at Michigan’s, or the other 14 states seeking to add work requirements, see this detailed chart prepared by the National Academy for State Health Policy.
The Ohio general assembly has passed bill OH HB332 seeking to protect disabled individuals from discrimination in receiving transplants or anatomical gifts, including liver transplants. The provisions would prevent healthcare specialists from refusing to add someone to transplant waiting lists or lowering their position on waiting lists due to a patient’s disability. The bill also will ensure that disabled patients will have access to equal medical care and counseling following a transplant or receipt of an anatomical gift.
Delaware has amended a previous restriction and will now enable small businesses to obtain a stop loss policy for health insurance. Stop loss policies protect employers against catastrophically high medical claims from any individual employee. This bill aims to give small business owners greater flexibility in the health insurance market.
GLOBAL
British Liver Trust
British Liver Trust has teamed with five other charities has to begin a campaign to double the 5-year survival rate of 14% for the top 6 deadliest cancers (brain, liver, lung, pancreatic, esophageal and stomach) to 28% by 2029. The charity coalition, The Less Survivable Cancers Taskforce (LSCT), has urged the NHS to begin prioritizing research for these cancers as well as to begin including and publishing data on their 5 year survival rates, incidence reports, and demographics similar to how prostate, breast, colorectal, and lung cancers are currently recorded. With this new effort, the LSCT hopes to save an additional 12,500 lives a year from the annual 90,000 people diagnosed with one of these cancers.
As part of this new initiative to double the rates of survival, Cancer Research UK has announced a $6.5 million dollar grant for liver cancer research. While progress has been made for cancers like breast and prostate, liver cancer has become the fastest rising cause of cancer death in the UK, with deaths having tripled since 1970. 5 year survival rates are only estimated at 9% in the UK and 11% across Europe. Through this new research funding initiative, Newcastle University will create a network of specialists and clinicians across Europe to research hepatocellular carcinoma (HCC) and treatments via immunotherapy.
The UK National Institutes of Health and Research (NIHR) has funded $3 million for a nationwide study aimed at preventing deaths caused by cirrhotic variceal hemorrhage. Over the course of 6 years, 1,200 cirrhosis patients across 25 separate UK hospitals will be treated with beta blockers or placebo to examine if variceal bleeding can be managed before requiring emergency treatment or causing death.
World Health Organization (WHO)
WHO has published a worldwide analysis on incidence and mortality rates for various types of cancers in 2018. Worldwide liver cancers represented 4.7% of new cancers and 8.2% of all cancer deaths. The report also shows a disparity between males and females in liver cancer rates where 3 times the number of males both in the US and worldwide developed liver cancer compared to females.
.GOV NEWS
National Cancer Institute (NCI)
In an interview with Dr. Supriya Mohile, NCI examines how geriatric assessment can be better integrated into current oncological care models. The recommended geriatric assessments examine the comorbidities and risk factors not present in normal adult age populations but can cause increased toxicity from chemotherapy treatments and higher mortality risks for adults 65 and older. As the geriatric population rapidly increases, Dr. Mohile believes that geriatric oncology should be integrated into all oncology fellowships in the future to help doctors understand the appropriate methods of care for this growing population.
Centers for Disease Control and Prevention (CDC)
CDC has released a report on adult obesity prevalence across all 50 states, and District of Columbia and Puerto Rico, showing an increase in states that report obesity levels over 35%. The report also examines obesity across population demographics showing a growing disparity in obesity based on racial and education backgrounds. Obesity represents a dangerous public health threat and is often linked to increased risks of cancer, type 2 diabetes, and liver disease. For a state by state breakdown of obesity prevalence and disparities between populations, see this detailed graphical map.
The 41st Nationwide health and mortality report has been issued by CDC. Its findings show that chronic liver disease has overtaken HIV as the 6th most leading cause of death in US populations. In addition, chronic liver disease, along with suicide and drug overdose, is among the top factors contributing to the decrease in US life expectancy.
CDC has published a blog on how precision medicine may be applied to public health. Normally considered as an application to the medical care of individuals, applying precision medicine to populations, public health researchers gain a new tool in population health assessments, data surveillance and prediction models. They are calling it “precision public health.”
U.S. Department of Health and Human Services (HHS)
The HHS Chief Data Officer has released the first report on HHS data sharing. The report, which spans 11 HHS agencies including NIH, CDC, FDA, and the CMS, finds there are significant barriers to sharing high value data within HHS. It proposes a series of strategies to improve transparency and create an efficient data sharing initiative which will minimize administrative costs within the organization.
NGOS
PCORI
The U.S. Government Accountability Office (GAO) has appointed seven new members to the 19 person board of PCORI. For detailed information on each new board member read their bios here.
GRANT OPPORTUNITIES
Epidemiologic Research on Emerging Risk Factors and Liver Cancer Susceptibility (R21 Clinical Trial Not Allowed). Funding available from the NIH. Application deadlines: November 16, 2018.
Addressing health disparities for the National Institute of Diabetes and Digestive Kidney (NIDDK) high priority diseases (R01- Clinical trial not allowed). Funding available from the NIH. Application deadlines: October 5, 2018.
NCCN and Eli Lilly Quality of Care in Gastric Cancer Opportunity. LOI submission deadlines: October 24, 2018
NAMES TO KNOW
Anna Jewell: Chair of the Less Survivable Cancer Taskforce
Supriya G. Mohile, M.D: Physician and professor at University of Rochester School of Medicine and founder of Specialized Oncology Care and Research in the Elderly, SOCARE
TERMS TO KNOW
Hepatocellular Carcinoma: Most common form of primary liver cancer
Immunotherapy: A type of therapy that uses substances to stimulate or suppress the immune system to help the body fight cancer, infection, and other diseases.
Varices: Veins that are stretched and thinned as a result of impaired liver function. Often found in the digestive tract, especially in the esophagus as esophageal varices.
Fit for Purpose: The “validity” or how to determine in a trial if you are measuring the correct thing.