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Hepatitis Education Project

newly diagnosed blog

Newly Diagnosed?

MEDICAL FACTS – there are many excellent websites that present summaries of the basic facts that you need to know about hepatitis C. Start with our summary and then for more detail explore the HCV Advocate information site.

HEPATITIS C TREATMENT
– Treatment options are better than for most other viral infections, with cure rates for most people in the 70-75% range and rising. Previously treatment included two drugs, pegylated interferon and ribavirin, which resulted in viral clearance in approximately 50% of those patients treated.  In 2011 two new medications were added to standard hepatitis C treatment, bringing cure rates up to about 75%; both drugs are protease inhibitors and they are manufactured by different companies.  One is called Victrelis (boceprevir) and the other is called Incivek (telaprevir).  Additional new treatment options became available December 2013 for some genotypes.  They include Sovaldi (sofosbuvir) and Olysio (simeprevir).  With these and other new medication on the way some people will be able to successfully complete treatment without interferon.  Other new medications are in various stages of testing, and these promise to reduce the length of time required for treatment and to increase the cure rate even further.

If you decide to seek treatment, select your medical team carefully. Treatment for hepatitis C demands a good knowledge of the side effects and complications of both the treatment drugs and the disease. Treatment teams with good experience in dealing with hepatitis C patients are to be preferred where they are available.

Even without treatment there are lifestyle changes that can greatly improve outcomes for most patients. Since hepatitis is a systemic disease, healthy eating, maintaining a healthy body weight and keeping stress levels low will help one's hepatitis and can better prepare them for successful treatment.  Many patients are interested in using natural medicine in their health efforts – for a summary of these approaches, see "CAM: Complementary and Alternative Medicine" (PDF)

MEDICAL INSURANCE COVERAGE – In our very fragmented and confused medical insurance system, it’s almost impossible to make any generalizations about what kind of coverage you may or may not have or what your options are. Each patient must explore their own situation with their provider or with agencies that provide social and health services. But below are some things to look for and ask about.

HEALTH CARE REFORM - Some clarity about the U.S. medical care system will come with the changes in the Affordable Care Act (also known as Obamacare) that begins in 2014.  Preventative care will be free and all insurance providers selling through the national healthcare exchanges will be required to cover 10 essential health benefits including prescription medications, mental healthcare, laboratory services and chronic health management.  Also with this law, in some states, free federal health insurance for people with low incomes--Medicaid--will be expanded to all people making up to 138% of the federal poverty level.  The Affordable Care Act also helps people making incomes of 138-400% of the federal poverty level by giving them federal assistance paying for their health insurance. However, the health care reform process at the federal level is rapidly developing, and it’s hard to predict where it will wind up at any given time. Keep in touch with this process at www.healthcare.gov.

UNDERINSURANCE – Many patients have reported problems with insurance coverage running out at critical moments. Sometimes there are limits to the total dollar value that your insurance will provide for any given purpose, and it is important to check and see not only whether something is covered, but also what any spending limits or restrictions may be. Your insurance provider or a printed copy of your insurance policy can provide this information and prevent unpleasant surprises.

For more information about being an effective healthcare consumer:

Tips for Lowering Prescription Drug Costs
Hepatitis PAP and Co-pay Programs


FREE MEDICATIONS
– many pharmaceutical companies offer free medications to those who have no insurance and low income. Look on the website of the company to learn more about these programs. 
For more information about patient assistance options:

HCSP Factsheet on Patient Assistance
PEGASYS Patient Assistance Foundation
Merck ACT Program
Vertex Patient Assistance Program
Ribacare Patient Assistance Program
Rx Assist
Partnership for Perscription Assistance
NeedyMeds.org


VETERAN’S COVERAGE
– If you are a veteran, you may be able to obtain coverage and treatment for your hepatitis C through the Veteran’s Administration, which has some of the best coverage and services available. Click here for more information.

MEDICAL CASE MANAGEMENT AT HEP
- If you have been told you have viral hepatitis at any point in time and you live in King, Pierce or Snohomish counties, case managers at HEP are happy ot help you accomplish your medical goals.  They will help walk you through everything from getting a confirmatory test to getting you set up with a liver or hepatitis specialist and understanding your test results.  They can help with finances and signing up or purchasing health insurance.  Email Chelsie at This email address is being protected from spambots. You need JavaScript enabled to view it. to get more information or to sign up. 

PERSONAL ISSUES – discussing your diagnosis situation with others is one of the more challenging issues to face a newly diagnosed patient. Here’s some basic good advice:

Hepatitis C Disclosure

Disclosure is a very personal issue, and depends very much on personal and family history and circumstances. Support groups can be particularly helpful. Others have wrestled with these issues and can talk about what they did and how it turned out. To link up with support groups to discuss this and many other issues, please click here.

JOB ISSUES – Washington State has legal protection for hepatitis C patients and forbids job discrimination on the basis of the disease. {LINK} That said, whether you tell your employer and/or co-workers is up to you. If you decide to undergo treatment, side-effects can impact your ability to work, and you may need to take more sick time. That doesn’t always happen, but it’s a real possibility.

For most people, hepatitis C by itself will not affect the ability to work too dramatically. Hepatitis C can have some effect on job abilities, particularly if your job requires strenuous effort or physical exertion. The fatigue associated with the disease can mean that you become more tired or have more problems carrying through for long working hours. If this becomes too severe, you may want to look at disability support:

Getting Disability Benefits Under Social Security


SOCIAL AND HEALTH SERVICES – You may need help with everything from housing and child care to transportation or counseling. If you can’t work, disability coverage may be important.

ONGOING SUPPORT – You may want to consider joining or forming a support group to get continuous updates and encouragement as you deal with this long-term chronic illness.



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