Canada: Retired nurse from Halton was shocked when she was diagnosed with Hep C

Halton residents asked to recognize World Hepatitis Day by tweeting

 

She spent most of her adult life working as an emergency room nurse and was looking forward to a less stressful retirement.

So the Halton resident never imagined a routine check-up with her family doctor would reveal she had contracted Hepatitis C.

“It came as a complete shock,” said the married woman with three adult sons. “I didn’t have any inkling I had this disease.

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Overview – Preparing for Treatment: Part 1 – Alan Franciscus, Editor-in-Chief

Treatment of hepatitis C has made great advances from the early days.  Back when interferon was first approved, the cure rates were about 10%.  The list of just the most common side effects could take up an entire page.  Now, we have medications that can cure 90 to 100% of patients who undergo therapy.  Even better, the side effects of the newer treatments are much easier to tolerate.  This article will discuss what it takes to prepare for treatment. 

Support and Resources
Start by gathering resources.  Trusted resources such as your medical provider, a support group, and a reliable internet site are safe places to start.  An important issue for people thinking about treatment is to learn as much as possible about treatment.  Talk to others who have been on treatment—they are some of the best experts.  Facebook is another resource where you can learn about treatment and receive support.  There are various Facebook accounts for the brand name drugs—HARVONI and VIEKIRA PAK—that provide a wealth of information about what people are experiencing while on treatment.  A caveat: Sometimes the sickest patients may use these sites more than those who feel well, and may have more side effects and complaints.

The pharmaceutical companies also have many resources that can be useful for investigating treatment issues and receiving support.  

Financial Preparations 
Whether you are dealing with your pharmacy, insurance company, medical provider or a patient assistance program—be prepared to provide the following information:

• Patient’s name
• Patient’s address
• Patient’s phone number (home and cell)
• Patient’s date of birth
• Identifying number—social security account number or a membership number.

Note:  Every time you call your insurance company or medical office, keep comprehensive notes—include the date, name and any issues that you discussed.  If it was over email, print it out and keep it with your other records.  If your medical office has an online record keeping system, print it off and keep it in a secure place. 

Insurance
HCV treatment is very expensive; some insurance companies have exclusivity agreements for individual HCV medications.  Check with your insurance carrier if there is a preferred HCV drug.  This could limit the choice of drugs.  Find out how much your share of expenses will be.  Additionally there are costs associated with medical appointments and lab tests.  Factor all these costs into what you have to pay.

Try to get answers to the following questions:

• Do you have prescription coverage?
• If so, what will your out-of-pocket expenses be?
• Do you have any reason to think your medical insurance will stop during treatment, such as a probable job lay off or a reduction in work hours?
• If you do not have prescription coverage, what is the cost of HCV treatment?
• How often will you have lab tests done and what is the co-pay?
• How often will you need to see your medical provider and what is the co-pay?  Remember, HCV treatment is typically 12 weeks but for some people it can range from 8 to 24 weeks.
• Insurance or not, can you afford the costs associated with HCV treatment?

Patient Assistance Programs:
The pharmaceutical companies that make the drugs to treat hepatitis C have programs that can provide the medications if you qualify.  Additionally, there are other programs that help with the co-pays.  A list of the Patient Assistance Programs can be found below and on our website.  There are also programs that can help people through the entire process of physician visits, insurance issues, and specialty doctors. 

The Workplace
In the past, some patients were unable to work while on interferon-based therapies.  Now that we have interferon-free therapies with fewer side effects, this is mostly an issue for people with more advanced liver disease.  In fact for most people, the workplace issue will mainly involve scheduling medical appointments and lab work. 

Remember you do not have to tell your employer you have hepatitis C or that you are taking hepatitis C medications.  Everyone has the right to time off for medical reasons.  However, it is not always that easy, so you should check in with your employer about your rights and responsibilities.  Also check in with your state health department about your rights.  It is also important to think through the worst-case scenario.  Some people are worried that they may feel sick especially at the beginning of therapy.  This is normal.  It might help to schedule a couple of days off at the beginning of treatment.  Talk with your employer about your sick leave policy, how much you have available and what your employer’s policies are.  You may also be able to use your vacation.  There is also the Family and Medical Leave Act (FMLA)—see if you qualify for this benefit. 

The most important issue is likely to be the time that you will need to take off for doctor appointments and lab tests. 

Part 2 of this article will discuss Medical Tests, Medications and Side Effect Management, among other things.

Resources:

Help with Medicines

Patient Assistance Programs

Widow’s Right to Workers’ Comp Benefits Affirmed, Without Direct Proof of Harm

St. Peters, MO, (Law Firm Newswire) February 20, 2015 – A Missouri Court of Appeals has affirmed the decision of a lower court to award workers’ compensation benefits to Dorothy Smith, a widow who lost her husband to hepatitis C.

Smith’s husband, Stephen Smith, worked in a medical laboratory for more than 30 years, beginning in 1969. There, he could have been exposed to the disease before protective equipment and procedures became common in the 1990s.

“In this case, the employer tried to argue that Ms. Smith should not get benefits because she could not definitively prove that the workplace was the source of her husband’s infection,” remarked Charlie James, a Missouri workers’ compensation attorney not involved with the case. “But the court ruled that Ms. Smith did not have to provide absolute proof. Ms. Smith only needed to show that it was probable that her husband’s workplace was the source of the infection.”

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Hepatitis C in the Workplace: Should Health Care Professionals Disclose?

by Lucinda K. Porter, RN

About nine months ago, a hepatitis C advocate contacted me and asked if I would be open to having a discussion on hepatitis C among healthcare professionals. Specifically, should we disclose or shouldn’t we? He talked about hepatitis C-positive medical professionals faced with the dilemma of disclosing their hepatitis C status to their employer. Some who divulged their status were terminated. There are also cases of those who were denied a job because pre-employment screening revealed that they had hepatitis C.

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Stephanie Goldberg Widow of health care worker who died of hepatitis C due workers comp benefits

The widow of a heath care worker who died from complications related to his hepatitis C is entitled to benefits despite the fact that the man received a blood transfusion in 1970 that his employer argued could have given him the disease, the Missouri Court of Appeals has ruled.

Stephen Smith worked for Capital Region Medical Center in Jefferson City, Missouri, as a medical laboratory technician from 1969 until March 2006, court records show.

Mr. Smith and other health care workers didn't wear protective equipment while handling blood and human tissue before safety measures were implemented in the 1980s or 1990s, according to court records. They also used a narrow glass straw, known as a pipette, to prepare blood slides by placing one end in a tube of blood and sucking on the other end to draw blood into it, records show.

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