Despite being the world’s most common liver infection, hepatitis B remains stigmatized and those living with it can still face discrimination from various sources. Each year, the Hepatitis B Foundation answers numerous calls from around the world from people who have faced school, workplace, and travel challenges due to their hepatitis B status. These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness. However, there are laws and organizations who will work to protect you from such discrimination!
The Hepatitis B Foundation has added a new section to our website that focuses on the rights of people living with hepatitis B. We’ve compiled information on common barriers that those living with hepatitis B may face while applying to schools, jobs, or accessing affordable medicine. Each of the below sections provides information on discriminatory practices, what you can do if you experience discrimination, and how the Hepatitis B Foundation is working to fight discrimination.
In the United States, all forms of hepatitis B related discrimination are illegal under the Americans with Disabilities Act (ADA) and the Affordable Care Act (ACA). Both laws include provisions that protect people living with chronic conditions. Unfortunately, some forms of discrimination are still legal in certain countries, but steps cansometimes be taken to appeal to immigration policies in these areas. Local organizations can also help those living in foreign countries to navigate complex laws or policies regarding those living with hepatitis B. Many of these organizations can be found through the World Hepatitis Alliance’s member list. Join them and add your voice to eliminate hepatitis B discrimination in your country.
Specific protections, resources, and ways to combat legal discrimination can be found in the Know Your Rights section of our website! If you are faced with discrimination due to hepatitis B, it is important to know your rights and to have information to support your case. Use the information on our site to help advocate for yourself, join with others, or contact the Hepatitis B Foundation at info@hepb.org if you need additional assistance.
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By Christine Kukka
It is time to sign up, re-enroll or change your health insurance plan in the Affordable Care Act’s Health Insurance Marketplace, also known as Obamacare. Millions of Americans – many of them with pre-existing medical conditions such as hepatitis B — get their much-needed health insurance through this plan.
But President-elect Donald Trump has promised to repeal the Affordable Care Act (ACA), which funds the program, and now Republicans will have control of the House and Senate. What should we, who require health insurance to cover our doctor visits, lab tests and costly antiviral treatment to keep our livers healthy, do? Should we sign up for 2017?
YES, experts say emphatically.
Even if Congress passes legislation to repeal parts of the ACA and Trump signs it into law, these changes are unlikely to go into effect before 2019 because Congress will need time to design a replacement plan and the IRS will need time to create a new tax system to go along with whatever replaces the ACA.
So for 2017, if you still need health insurance coverage and the subsidies including premium subsidies and cost-sharing subsidies, they will still available. They will probably change starting in 2018, but for 2017 you can still sign up and receive coverage now.
To date, healthcare policy experts predict Republicans will not repeal the program because of the huge number of Americans that use it. And what remains popular about the program is that it requires insurers to take all applicants regardless of their medical condition, which is vital for us with chronic hepatitis B.
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Right now, the marketplace can only ask our age and whether we smoke when providing coverage. It cannot ask about our hepatitis B or what drugs we take, nor can it impose any caps on our medical expenses. If and when the Trump-Congress changes the program, it can only do so by changing how it is funded.
The Trump-Congress will have to design a replacement and/or improvements for the ACA if it repeals it, or risk political suicide. “I think they can get away with (insuring) slightly fewer people and somewhat skimpier benefits, but not too much,” wrote Aaron E. Carroll, professor of pediatrics at Indiana University School of Medicine who blogs on health research and policy, in a recent New York Times opinion piece. “There’s a part of me that thinks many in Congress were always so willing to vote for a ‘repeal’ because they knew it had no chance of being signed into law. They got credit for the vote without ever having to face the downside. Actually repealing without replacing would mean effectively stripping more than 20 million people of their health insurance, without anything in return.
“This would be an unmitigated political disaster. The stories — of people with cancer, diabetes and more who were suddenly stripped of their insurance and left out in the cold — would very likely dominate our discussion for months,” “That leaves more than enough time to lead to significant repercussions in the 2018 midterm elections. With no Democratic leaders in any branch of government to blame, I think this would be akin to what happened in the 2010 elections, but in reverse.”
Many acknowledge that the ACA isn’t perfect and needs improvement. Many clients with hepatitis B who stop for a plan at the ACA’s website may find few choices and higher prices, though subsidies will remain for those with moderate incomes in 2017.
ACA clients need to review the plans carefully, and look up the “drug tier” and price for antivirals such as tenofovir (brand name Viread) and entecavir. The newest antiviral approved by the U.S. Food and Drug Administration—called TAF or tenofovir alafenamide (brand name Vemlidy, a different formulation of tenofovir) will probably not be listed yet in any of the insurance plan drug lists.
If or when your doctor recommends TAF, review your insurance plan carefully to find out the price. You will probably have to be pre-qualified for this new drug, which is designed to reduce side effects such as bone loss and kidney damage in those who have been on tenofovir.
Remember, be an active consumer and participant in our democracy. If the ACA has worked well for you, let your elected representatives know. And, do your research to find the best health plan possible before you enroll.
Remember:
Dec. 15, 2016, is the last day to sign up or change plans for coverage starting on Jan. 1, 2017
And Jan. 31, 2017, is the last day to enroll or change a plan for 2017, unless you qualify for a special enrollment period because you stopped working.
For more information about getting the best hepatitis B drug prices through the ACA, click here.
Liver cancer, caused by hepatitis B and C, is on the rise in the U.S. and it is also the second deadliest. Fewer than 15 percent of patients with liver cancer will survive five years after their diagnosis. It is the third-leading cause of cancer deaths among Asian-Americans and the eighth-leading cause of cancer deaths among Caucasian-Americans.
Despite this bleak outlook, there are people with liver cancer who are beating the odds and surviving. The medical community is also working hard to develop new drugs and effective strategies to treat liver cancer. Here is one survivor’s story.
By Frank Gardea
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
In late 2008, during routine testing before surgery, I found out I had hepatitis C and liver cirrhosis. It was a double whammy because having both viral hepatitis and cirrhosis put me at high risk for liver cancer.
Then the abdominal pain started. I suffered for almost three years and was in and out of the emergency department. They could not pinpoint the cause of the pain. When they finally diagnosed my liver cancer, the tumor was over 8 cm in size. Continue reading "Beating the Odds: A Liver Cancer Survivor’s Story"→
For years, people with pre-existing conditions like chronic hepatitis B struggled to get health insurance. News stories and Michael Moore’s documentary Sicko highlighted insurance companies’ refusal to cover pre-existing conditions and their practice of inflating premium prices if consumers had chronic health problems.
Outraged by industry efforts to cover only low-cost, “healthy” consumers, lawmakers banned discrimination against pre-existing conditions in the Affordable Care Act (ACA – Obamacare). The ACA’s Healthcare Marketplace website promises, “Your insurance company can’t turn you down or charge you more because of your pre-existing health or medical condition like asthma, back pain, diabetes, or cancer.”
While health plans sold on the marketplace can’t openly refuse to insure people with pre-existing conditions, some have devised an insidious way to discourage people with hepatitis B from buying their policies. They have dramatically increased the copays consumers pay out-of-pocket for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately make their health plans unaffordable for people with chronic hepatitis B. Continue reading "Help Stop Insurers from Over-Charging Patients for Hepatitis B Drugs on the Healthcare Marketplace"→
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With the cost of health care and prescription drugs soaring, it’s important to choose health insurance carefully when you take hepatitis B medications and need frequent check-ups and lab tests.
In the next two months, Medicare recipients, people who get insurance through their jobs and consumers buying coverage through the Affordable Care Act (Obamacare) will be selecting insurance plans during open enrollment.
If you take antivirals or interferon and have frequent lab tests and doctor visits, it’s important that you select the plan that:
Has your specialist or primary care doctor and lab in its network,
And offers the lowest copay for the drugs you need.
