Liver Health Advocates should pay more attention to NIH
Liver Health Advocates should pay more attention to NIH
GLI recently participated in the annual meeting of the Friends of NIDDK with the leadership of this Institute which drives, conducts, and funds research in diabetes, digestive, and kidney diseases including liver diseases and obesity. This is a broad mandate with vital implications for the nation’s health given that combined 1 in 3 people in the U.S. are living with one or more of these conditions. That translates into more than 100 million people and hundreds of billions of dollars in direct and indirect medical costs.
Although NIH and NIDDK specifically received a 5.4% increase in funding in the FY2018 appropriation, this does not in any way match the challenges that NIDDK is attempting to address, leaving an increasing number of unfunded high-quality research applications and undermining the process of attracting the next generation of researchers in liver and other related diseases.
NIDDK has a rich portfolio of projects, centers, and collaborations including the NASH Clinical Research Network and a Childhood Liver Diseases Research and Education Network, but there is an opportunity for advocates to help push for the expansion and prioritization of liver research in several ways (and we love to hear more ideas from you) including:
Support the FY 2019 NIDDK appropriations request for $2.165 B;
Encourage inter-Institute collaborations such as with the National Institute for Allergy and Infectious Disease (which has been essential to the success in HIV and HCV) or with the National Cancer Institute, since liver cancer is one of the few cancers with rising rates;
Encourage intra-NIDDK integration of liver questions in ongoing research, for example ensuring NAFLD and NASH are part of the research plan in childhood liver disease, gestational diabetes, genetic risk, and obesity/nutrition projects in various divisions and branches; and
Insist that NIDDK resources, including communications and external partnerships, are allocated in a manner that reflects the prevalence and impact of liver diseases vis a vis other conditions.
Please contact the United States Capitol switchboard at (202) 224-3121 to best advocate for liver health.
OPEN ADVOCACY OPPORTUNITIES
Global Liver Institute is a patient-driven advocacy organization that promotes innovation and collaboration to advance liver health. To give voice to patient perspectives, we need you, your stories, your insights, and your expertise as a patient or caregiver dealing with liver disease.
Please contact us at email@example.com if you are interested in:
- sharing your story in written form (we can interview and write it if you prefer)
- Sharing your story in a video
- Answering a survey or providing comments based on your experiences navigating clinical trials, medical care, or insurance coverage
- Participating in a focus group
- Learning more about advocacy
You can learn more about what it means to be a patient advocate and how to get involved in GLI’s work by visiting our website.
Any information you share with us will be respected and shared only with your consent.
1st International NASH Day: June 12
Support the first International NASH Day on June 12, 2018 by signing this global call to action to raise awareness of NASH. Ask peers and colleagues to join you in this international effort for the chance to be recognized as a leading expert and advocate in NASH!
POLICY DEVELOPMENTS AT GLI
GLI’s Advanced Advocacy Academy
GLI is thrilled to announce its second annual Advanced Advocacy Academy (A3). The two-day conference that teaches liver patients and caregivers how to best advocate for liver health will take place on September 21-22, 2018 in Washington, D.C. To learn more about A3 and to apply, visit globalliver.org/A3 or email firstname.lastname@example.org.
FOR YOUR CALENDAR
June 2-5: Digestive Disease Week. Washington, D.C.
June 12: International NASH Information Day
June 18-24: Love Your Liver Week. United Kingdom.
July 5-6: Paris NASH Meeting. Paris, France.
September 21-22: GLI’s Advanced Advocacy Academy
California Assemblymember Mike Gipson (D-California) has officially declared Hepatitis Awareness Month and Hepatitis Testing Day. The month of May is now recognized as Hepatitis Awareness Month, and May 19, 2018 was the inaugural Hepatitis Testing Day. Hepatitis B (HBV) and C (HCV) and related liver diseases are some of the leading killers in the state of California. Increased hepatitis testing and awareness may serve as ways to decrease rates of viral hepatitis in California.
Nebraska Governor Pete Ricketts signed the Investigational Drug Use Act (LB117), making Nebraska the 40th state to adopt their own version of the Right to Try Act. This act permits terminally ill patients to try potentially life-saving treatments that are not widely approved by the FDA.
Vermont Governor Phil Scott signed a bill (S.175) that will allow for the importation of prescription drugs from Canada at wholesale prices. The program has been designed to meet US Department of Health and Human Services (HHS) requirements, including drug cost, drug safety, and drug type. If approved by HHS, the program is expected to begin about six months after receiving federal funding.
British Liver Trust
The British Liver Trust is encouraging UK residents to celebrate Love Your Liver Week this year from June 18-24. Nearly 75% of patients diagnosed with liver disease receive their diagnoses at a late stage of disease and in a hospital setting. However, liver disease can be largely preventable as 90% of liver disease cases can be at least partially attributed to obesity, alcohol abuse, and viral hepatitis. Learn more about how you can celebrate Love Your Liver Week and what the British Liver Trust suggests you do to protect your liver.
The British Liver Trust issued a press release in support of the World Cancer Research Fund’s (WCRF) updated Cancer Prevention Recommendations. Nearly 15 people are diagnosed with a primary liver cancer each day in the UK, and most diagnoses are at a late stage with limited treatment options. Increasing prevention initiatives for liver cancer can decrease the number of cases and severity of disease at time of diagnosis. Read more about liver cancer prevention and WCRF’s recommendations to decrease cancer risk.
US Food and Drug Administration (FDA)
In early May, FDA Commissioner Dr. Scott Gottlieb published a blog post detailing the federal government’s “Unified Agenda of Federal Regulatory and Deregulatory Actions", which allows federal agencies to update the public on regulatory priorities. This year’s Spring Unified Agenda at FDA includes initiatives such as “Addressing the Nicotine Addiction Crisis,” “Modernizing and Harmonizing Standards,” and “Enhancing Clinical Trial Processes”. The Spring Unified Agenda builds on last year’s Fall Unified Agenda, and aims to ensure science-based decision making and FDA’s efforts to protect public health. Read more about the Fall and Spring Unified Agendas and how FDA determines and maintains their regulatory agenda.
Centers for Medicare and Medicaid Services (CMS)
CMS announced its first Rural Health Strategy, which aims to deliver high quality, affordable health care to the almost one in five Americans who live in a rural area. The Rural Health Strategy will apply a rural focus to policies and programs, improve access to care, advance telemedicine and telehealth, empower rural patients, and leverage new and existing partnerships. Learn more about rural health at CMS and how the Rural Health Strategy might be implemented in your area.
National Institute of Health (NIH)
On May 6, NIH opened national enrollment for its All of Us Research Program. The All of Us Research Program is a cohesive program that aims to individualize care for all Americans. Such individualized care, also referred to as precision medicine, permits health care providers to tailor prevention, treatment, and care to each patient and allows unique differences in lifestyle, environment, and biologic and genetic makeup to be included in health care planning. Learn more about the All of Us Research Program and how to enroll.
Veterans Administration (VA)
VA announced a new federal rule that will allow VA clinicians to administer care to veterans across state lines via telehealth and telemedicine practices. There are many state-specific laws and regulations regarding telehealth and licensing restrictions that initially gave VA cause for concern. This development directly supports VA’s “Anywhere to Anywhere” initiative, which strives to expand veterans’ access to care. Learn more about telehealth and how veterans can access care regardless of physical location.
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
Epidemiologic Research on Emerging Risk Factors and Liver Cancer Susceptibility (R21 Clinical Trial Not Allowed). Funds available from NIH: $200,000. Application deadlines: June 16, 2018 or October 16, 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.
NAMES TO KNOW
Richard Bankowitz. Chief Medical Officer, America’s Health Insurance Plans (AHIP). AHIP is a healthcare organization that advocates for policies to expand quality healthcare to all. Bankowitz works with clinicians to improve health outcomes and spoke on a panel about “The Patient Experience” at the Atlantic’s event: The State of Care.
Stephen Ubl. President and Chief Executive Officer of PhRMA, an organization that represents biopharmaceutical research companies in the US. Ubl was also present at The State of Care event and spoke about “Balancing Access and Affordability in the New Era of Medicine”.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is a department within the National Institutes of Health (NIH) that conducts biomedical research on diabetes and kidney and digestive diseases. They work to communicate their research findings to the public through programs and partnerships with other organizations. Some of their notable members include:
Dr. Judith Fradkin, MD: Division of Diabetes, Endocrinology, and Metabolic Diseases
Dr. Stephen James, MD: Director of Digestive Diseases and Nutrition
Dr. T. Jake Liang, MD: Chief of the Liver Diseases Branch
Dr. Griffin Rodgers, MD, MACP: Director of NIDDK
Dr. Philip Smith, Ph.D: Deputy Director of Division of Diabetes, Endocrinology and Metabolic Diseases & Co-Director of Office of Obesity Research
Dr. Susan Z. Yanovski, MD: Co-Director of Office of Obesity Research
TERMS TO KNOW
Telehealth: the use of technology to facilitate health, education, and medical services. ‘Telemedicine’ is a major aspect of telehealth, which involves technology such as video monitoring and correspondence between a patient and practitioner. With new avenues for communication, practitioners are able to remotely make a diagnosis, give recommendations, or prescribe medicine to their patients.
REMS: To make sure the benefits of a drug outweighs potential harm, REMS (Risk Evaluation Mitigation Strategies) are actions taken to minimize the risk of a certain drug as much as possible. For example, if birth defects are a potential harmful outcome of a drug, the FDA might require that a patient has a confirmed negative pregnancy test prior to the medicine being prescribed.