Facts Matter to Patients
Facts Matter to Patients
More and more, journalism and the media not only report the news, but recently they have become the news themselves. This is not a development without importance for patients whose points of view historically have been under-reported. When news reports are criticized and labeled as fabricated, biased, or "fake", it creates confusion for those who rely on the media to learn important information. Patients, for example, depend on factual news reports about treatment options and promising investigations or even how they can get involved in clinical trials or advocacy. Among consumers, healthcare facts have always depended to some degree on values, information and knowledge. Do vaccines cause autism? Will ground avocado pits cure cancer? Are over-the-counter medications or food-based supplements safer disease treatments because they don’t require a prescription? For many people, beliefs color the news they receive and the actions they take which is why unbiased reporting from sources meeting long-standing journalism standards is so critical to making informed decisions.
With perceptions of media under scrutiny, GLI CEO Donna Cryer was among a select group of attendees invited to participate in the ABIM Foundation Forum on [Re] Building Trust in heathcare; she attended with leaders in medical education, quality, payment and reporting. A number of trends are making it more difficult for consumers to ignore advances occurring in science-driven medicine, particularly the development of personalized medicine, approaches that tailor treatments to individual factors. Science itself is powerfully putting the individual, their genome, their biome and other individual factors at the center of diagnostic and healthcare treatment options. Personalized medicine makes information individualized. Who can legitimately ignore this development?
At Global Liver Institute (GLI), we are dedicated to being not only a news source for people vitally interested in liver health, but also an organization that helps develop scientifically validated information pertinent to liver patients. We ourselves have surveyed cancer organizations to learn what they are doing for liver cancer advocacy and now GLI is working with the Association of Community Cancer Centers on a member survey to learn more about liver cancer treatment services available at community hospitals across the U.S. GLI also sponsored the publication of the National Comprehensive Cancer Network’s new hepatobiliary clinical guidelines written for patients and caregivers. In the growing NASH epidemic, GLI is bringing dozens of stakeholders, including patient advocates, together to identify key clinical care and policy objectives and to determine and highlight best practices.
Most importantly, GLI provides spaces for patients to speak to each other, producing information curated from their experience and shared with others. In a pinch, these sources can be the most valuable.
So while journalism and media are being challenged, we feel that GLI’s website and our use of social media like Facebook, Twitter, LinkedIn and Instagram give patients a direct opportunity to obtain well-founded information and to participate in discussions with peers. At GLI, we will also do our best to ensure that such information is accurate and responsive to individual patient and caregiver needs.
CDC 2016 Study
The results from a Center for Disease Control (CDC) study conducted between 1999-2016 on liver disease related mortality rates in the US were published in July. A major finding of the study was that both alcohol-induced cirrhosis and hepatocellular carcinoma rates have drastically increased, contributing to the evidence that preventable liver disease is an urgent and growing public health problem. Donna Cryer, CEO and President of GLI, commented on the findings of the study here:
OPEN ADVOCACY OPPORTUNITIES
Are you a liver cancer patient or survivor? Please complete Association of Community Cancer Center’s (ACCC) Patient Experience with Hepatocellular Carcinoma Care survey to help shed light on cancer care during liver cancer diagnosis, treatment, and support.
Liver Health Advocates
GLI recently created a new Facebook group called Liver Health Advocates. Please join our space to discuss your advocacy needs, share your experiences, and connect with fellow liver advocates! Invite your fellow liver patients, support networks, and others who can help advocate for liver health. Email firstname.lastname@example.org for access.
FOR YOUR CALENDAR
September 21-22: GLI’s Advanced Advocacy Academy
Covered California announced that premiums costs will increase by approximately 9% in 2019. It is estimated that 4% of the price increase is due to the removal of the Affordable Care Act’s mandate which penalized those who did not purchase health insurance with a fee. The removal of the mandate makes it more likely that healthier people will drop out of the insurance market, producing a smaller, sicker, and higher risk population to be covered by insurers.
A federal court blocked a work requirement for Medicaid from passing in Kentucky in late June. After the requirement failed, Kentucky representative Matt Bevin took away vision and dental services for 500,000 people on Medicaid using the justification that the state government of Kentucky could no longer afford to offer those benefits. However, the state announced it will reverse its decision by the start of August.
Maine and Wisconsin
Although voters in Maine and its legislative branch approved the expansion of Medicaid to an estimated 70,000 individuals by July 2nd, Governor LePage has vetoed the bill, calling for a long-term funding plan by increasing taxes on hospitals. On July 9th, the House failed to overturn Governor LePage’s veto. Within two days, Wisconsin and Maine received approval from CMS to reinstate a statewide health reinsurance program in an attempt to lower premiums.
Starting in 2019, Maryland will expand its first in the nation all-payer model outside of hospitals to the state’s entire healthcare system. An all-payer model is a system where all billing parties charge the same amount for services. According to an article in Hospital CFO Report, “The state's 36-year-old Medicare waiver allows it to set hospital rates for inpatient and outpatient care and requires all insurers to pay the same rates. This model saved more than $586 million between 2014 and 2016 compared to national spending. The expansion is expected to save an additional $300 million per year by 2023.”
Mississippi has submitted a revised proposal to impose work requirements for Medicaid beneficiaries. State lawmakers reinstated beneficiary protections in their proposal, guaranteeing up to 24 months of coverage for those who met proposed work requirements. Requirements would include working a minimum of 20 hours a week and volunteering or participating in an alcohol or drug abuse treatment program. Revisions were made following concerns for residents who would earn too much to continue receiving Medicaid but too little to afford health insurance on their own. Mississippi is one of seven states to request permission from the Trump administration to impose work requirements.
Governor Phil Murphy designed a new state budget to help revamp the New Jersey Medicaid program. The proposed program is configured to better treat prediabetic and diabetic individuals, conditions comorbid with liver disease. Additionally, the new program lifts previous restrictions on who can receive hepatitis C drugs.
Following a meeting of stakeholders, including government and healthcare representatives, who created an action plan to eliminate Hepatitis C Virus (HCV) in New York, Governor Cuomo announced his support of the plan. New York is the first state in America to commit to an HCV elimination plan.
The Centers for Medicare & Medicaid Services (CMS) has permitted the state of Oklahoma to negotiate value-based drug pricing contracts with prescription drug manufacturers. Under a value-based program, Oklahoma would pay a drugmaker a set amount if its medication works as advertised, but only a fraction of that if it isn't as effective as promised. The devil may prove to be in the details.
British Liver Trust
In late June, the British Government released new childhood obesity guidelines to combat the ongoing health crisis. According to an article on its website, the British Liver Trust “was critical of the original plan (published two years ago)...” However, it “joined forces with other health charities to welcome these commitments.” BLT noted that “The UK has one of the highest proportions of overweight and obese children in the EU with recent figures showing that a quarter of children are obese at the age of 11.”
On 2018 World Hepatitis Day, India’s national Health Minister, J.P. Nadda announced the start of the nation’s national viral hepatitis control program with the goal of ending viral hepatitis by 2030. Some of their strategies include launching preventative interventions and making a commitment to constructing new treatment facilities.
National Comprehensive Cancer Network (NCCN)
A report has been published of the September 2017 NCCN summit on Redefining Quality Measurement in Oncology. The summit’s purpose was to “understand the current challenges and promising practices in quality measurement and to explore future considerations for measure development and measure reporting in oncology.” In part, the report’s executive summary states, “Quality measurement in oncology is an iterative process that continues to evolve. The importance of meaningful quality measures is increasing as payment schemes shift from volume to value. Further, there exists a need to standardize measures and minimize reporting burden. Accomplishing this requires health information technology (HIT) systems that are sophisticated enough to capture the right data and automate reporting of measures.
World Health Organization (WHO)
WHO released an article describing the reduced need for liver transplants in Argentina, the first country in North and South America that has routinely used hepatitis A vaccinations. Argentina’s 13-year success with hepatitis A vaccinations has led to its use in Brazil, Canada, Colombia, Chile, United States, Mexico, Panama, Paraguay, and Uruguay.
Food and Drug Administration (FDA)
On July 18th, the FDA approved the first cancer drug using their new oncology review program that was developed to streamline the evaluation process. The program, “Real-Time Oncology Review,” cuts down waiting time by permitting FDA officials to examine clinical trials data before the formal submission process.
Department of Health and Human Services (HHS)
On July 25th, Congressman Eliot Engel introduced a bill to reform HHS’ Organ Procurement and Transplantation criteria for liver allocations. The legislation aims “to establish and implement reforms to the criteria for liver allocation so that such allocation is not based on the donor candidate’s place of residence or listing, except to the extent necessary to avoid wasting organs, and for other purposes.”
Congressman Engel also sponsored legislation that the House of Representatives passed on July 23rd, the Palliative Care and Hospice Education and Training Act. It would implement an increase in the number of permanent faculty in palliative care at accredited medical schools and to promote the importance of quality of life care for patients.
National Cancer Institute (NCI)
NCI collaborated with the Department of Veteran Affairs (VA) to provide veterans easier access to novel cancer treatments in clinical trials. This program called the NCI and VA Interagency Group to Accelerate Trials Enrollment (NAVIGATE) will be implemented at 12 VA facilities across the country.
National Institutes of Health (NIH)
The Health Care Systems (HCS) branch was recently awarded multiple research grants for the expansion of their program that conducts large-scale clinical trials in real-world clinical settings. The focus of these clinical trials will be non-communicable chronic diseases and a variety of other conditions such as kidney failure and suicide prevention.
Centers for Disease Control and Prevention (CDC)
CDC released a report on hepatitis B treatment based on results from a 2016 study. This report is crucial for the achievement of the WHO’s goal to eliminate the HBV by 2030. The CDC’s 2016 study was cited as support for the U.S. to recognize World Hepatitis Day on July 28th, a bill that was introduced into Congress at the end of July.
Centers for Medicare and Medicaid Services (CMS)
CMS announced in early July that it would not be renewing its contract with LiveOnNy, one of the largest organ collection organizations in America. CMS said this was a decision based on the organization’s inability to follow standards of success for collecting organs.
The Trump administration announced it will cut funding by an additional 72% for the ACA navigator program, a program that supports nonprofit groups to help Americans purchase individual health insurance. CMS Administrator Seema Verma supported the decision, however other organizations and advocates did not concur. In a quote in The Washington Post, Catherine Edwards, executive director of the Missouri Association of Area Agencies on Aging, said “They’re just strangling the program. . . . They couldn’t kill the program in Congress, so they are cutting the money.”
A CMS and Trump administration directive is requiring all hospitals to post their prices online in an effort to increase price transparency by the start of next year.
Epidemiologic Research on Emerging Risk Factors and Liver Cancer Susceptibility (R21 Clinical Trial Not Allowed). Funds available from NIH: $275,000. 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 NIH contingent on appropriation. Application deadlines: October 5, 2018.
NAMES TO KNOW
Robert Wilkie has just been confirmed by the Senate to serve as the department of Veteran Affairs secretary. During his confirmation hearing, he pledged that he would would not support attempts to privatize the VA health system.
TERMS TO KNOW
Medigap: The supplemental private insurance plans that one in four Medicare recipients choose to purchase to help them pay for Medicare co-pays, deductibles and uncovered expenses.