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  • All of Us Research Program

    Medicine is not one size fits all. Changing that idea takes All of Us.  Why is it that an African American woman in her thirties living in a large city tends to receive the same medical care as a man in his sixties of European descent who lives on a farm in rural America, who in turn receives the same treatment as a Korean American mother of two in her forties living in a midwestern suburb? Each of these people has different ancestry, lifestyle, environment, socioeconomic status, and genetics, all of which have a major impact on health. Why should these factors not impact healthcare as well? The All of Us Research Program, an initiative of the National Institutes of Health, is working to change that. The goal of the program is to diversify the pool of available biomedical data, so that researchers can study many different people and groups, and doctors in turn can then make much more informed decisions about prevention, diagnosis, and treatment of various conditions, that are much more tailored to individual people and to specific groups of people, a practice known as precision medicine. For far too long, doctors have been using data from and information about “the average person” (typically a white man) to make decisions and provide care to everyone in the extraordinarily diverse population of the United States. Now there is a great opportunity for all of us to come together to help them change that!  The overall objective of the project is to recruit one million or more participants and to follow them over ten years.The Hepatitis B Foundation, in partnership with Hep Free Haw aii and the Asian Engagement and Recruitment Core (ARC), is working to spread the word about the All of Us Research Program to everyone, but particularly among Asian American, Native Hawaiian, and Pacific Islander communities, who are under-represented in this area, historically and currently.  Why should I participate? This is an important chance to learn about your own health,

    http://www.hepb.org/blog/us-research-program/
  • Copay Accumulators - What They Are and What They Mean For Your Prescriptions

    In January of 2020, the Centers for Medicare and Medicaid Services (CMS)  proposed a new rule that could increase the out-of-pocket costs for people who take prescription medication for hepatitis B in the U.S. The proposed rule states that health insurance companies would be able to collect patient coinsurance through pharmaceutical manufacturer financial assistance. However, the insurance companies will be allowed to disregard any coinsurance paid with copay assistance when calculating how much the patient has paid toward their deductible and annual out-of-pocket (OOP) limit.  This proposal - titled 2021 Notice of Benefit and Payment Parameters - reverses a recent ruling that would have required health insurance companies to count the value of manufacturer copay assistance toward an enrollee’s annual deductible and OOP limit in most circumstances1.  This rule acknowledged that manufacturer copay assistance helps lessen the financial burden of medications for patients. In the US, prescription drugs can be extremely costly, making manufacturer’s copay assistance programs necessary for many patients.  For example, brand name treatments are often expensive in order to help pharmaceutical companies earn back the costs of the research and time spent making the medication. Sometimes, the brand name treatments are the only ones that are available, like Vemlidy, or the only version that a person can take. A reversal of the rule would mean that hepatitis B patients and those living with other chronic illnesses may have to pay a larger amount of out-of-pocket costs for their medications.  To understand the significance of this change, we first need to understand what a copay accumulator is.  What is a Copay Accumulator Program and How Does It Work?   A copay accumulator - or accumulator adjustment program - is a strategy used by insurance companies and Pharmacy Benefits Managers (PBMs) that stop manufacturer copay assistance coupons from counting towards two

    http://www.hepb.org/blog/copay-accumulators-mean-prescriptions/
  • We Will No Longer Be Invisible

    The Hepatitis B Foundation and the Hep B United coalition are excited to partner with the All of Us Research Program, a program funded by the National Institutes of Health (NIH) to advance precision medicine - health care that is tailored to each person. All of Us will enroll and engage 1 million or more people across the country, from all walks of life, to contribute to research that could improve health for generations to come. We are partnering with All of Us to increase representation of Asian American and Pacific Islander communities in biomedical research. Diversity and inclusion in health research is critical to understanding how certain diseases or treatments affect individuals differently and helping transform health care to be more customized and effective for each person. In the U.S., over half of the 2.2 million people living with chronic hepatitis B are Asian Americans and Pacific Islanders. Join All of Us to help researchers better understand the causes and risk factors for chronic conditions like hepatitis B and make health equity a reality. Visit JoinAllofUs.org to learn more about the All of Us Research Program. Additional resources: Fact Sheet: All of Us Research Program  Infographic: All of Us Research Program  Flyer : How do I sign up for this research program?

    http://www.hepb.org/blog/will-no-longer-invisible/
  • Support Services for Families Facing Liver Cancer Webinar

    What support services are available for patients and families that are facing liver cancer? Are there any assistance programs to help pay for treatment or other costs? What about online or community support? Listen to this webinar from the Hepatitis B Foundation's Liver Cancer Connect program. Guest speakers Karla Pillote, a nurse practitioner at Johns Hopkins' Sibley Memorial Hospital in Washington DC, and Andrea Wilson, founder of BlueFaery: The Adrienne Wilson Liver Cancer Association, explain how families can access valuable services. Be sure to visit Liver Cancer Connect for all you need to know about liver cancer! https://www.youtube.com/watch?v=wEHj1tDdJfk&feature=youtu.be

    http://www.hepb.org/blog/support-services-for-families-facing-liver-cancer-webinar/
  • HBV Journal Review - June 2013

    HBF is pleased to connect our blog readers to Christine Kukka's monthly HBV Journal Review that she writes for the HBV Advocate. The journal presents the latest in hepatitis B research, treatment, and prevention from recent academic and medical journals. This month, the following topics are explored: • U.S. Doctors Failing to Treat Patients Who Need Treatment • Doctors Say Poor Training and Limited Resources Contribute to Substandard Care • More Proof—Many Patients with Slightly Elevated ALTs Have Fibrosis • Tenofovir Reduces Viral Load in HBeAg-Positive Patients Faster than Entecavir • Researchers Find Tenofovir Does Not Damage Kidneys • Tenofovir and Entecavir Highly Effective—If Taken as Prescribed • Family History of Liver Cancer Boosts Cancer Risk to 15.8% Among HBV-Infected • Vitamin D Deficiencies Found in People with High Viral Loads • More Evidence Shows Breastfeeding Does Not Transmit HBV Infection • Cesareans Do Not Reduce Mother-to-Child HBV Infection • 2% of HBV Genotype D Adults Lose HBsAg Annually HBV Journal Review June 1, 2013, Vol 10, no 6 by Christine M. Kukka U.S. Doctors Failing to Treat Patients Who Need Treatment Fewer than 50% of patients infected with the hepatitis B virus (HBV) who need treatment get antivirals or interferon from their primary care doctors and fewer than 70% of patients who go to university liver clinics get appropriate treatment, according to research presented at the Digestive Disease Week medical conference held in Orlando in May. Stanford University researchers conducted a real-life study to see what percentage of 1,976 hepatitis B patients treated in various clinical settings over four years received treatment. They used current medical guidelines when evaluating whether patients received appropriate treatment. Continue reading about this and additional studies...                    

    http://www.hepb.org/blog/hbv-journal-review-june-2013/