Newly Diagnosed

When we are first diagnosed with Hepatitis C we want to know all we can about this disease. We have put together a list of questions you might have along with tests, and information. 

Who do we tell?

You and you alone have control over who should be informed you have Hepatitis C. When you start to tell your family and colleagues they may say or do something to upset you. Any negative reaction has no reflection on you, how can you be responsible for the reactions of others?   It's hard to tell anyone about a chronic disease and Hepatitis C is no different.  Remember this is not a confession it is simply sharing what you know about this disease and how it has affected you. You may wish to write down what you will say, and go over it before approaching family members and friends.

You may wish to use these guidelines:

• "I have something to share with you about my health…"
• "I feel I can trust you and have something personal to share with you…"
• "I feel like our relationship is strong and I can tell you anything. I found out recently that I have hepatitis C…"
• "Remember how I have been feeling tired and run down. I went to the doctor's office a few weeks ago and…?"
• "I feel overwhelmed with the recent news I just received can I share it with you?"

Telling our health care professionals:

You should tell any medical professionals that will be taking care of you in the future. You do not have to tell them right away, but in a timely manner. You will find out that 90% of any person in the medical field will be very supportive. Any lab technicians will need to know before drawing blood. Your physician will need to know in order to take better care of you.  Your dentist should be told for precautionary reasons. Any person coming in contact with your blood should be told.

Your employers only need to be told if you choose to do so. In the event you may be going on HCV therapy it might be helpful for them to know. Only you know if it is necessary to inform them.

Do I have to tell my boss?

Before you answer this big question, think about how having hepatitis might affect your job, and talk to your doctor or nurse about whether you are putting yourself or others at risk by continuing to work. Be honest with yourself about what kind of responsibility you have to protect customers and coworkers from being exposed, even accidentally, to the virus. This is especially important if you have hepatitis B, which is more easily spread than hepatitis C.

There are some clear advantages to telling your employer; they will understand your personal situation better, and may be able to help you cope and carry on. But there could also be a bad side if your employer doesn't understand or want to help. There are federal and state laws which offer some protection. For example, the federal Americans with Disabilities Act (ADA), which is described in greater detail later in this chapter, helps protect you from being fired or forced to leave because of your condition, as long as you can find ways to continue doing your job despite your illness. This does not mean you may not be fired or experience other discrimination if you tell your employer; it just means that you have a right to sue if he or she does not obey this law.

If you do decide to speak to your employer, you need to decide who to inform. If there's a human resources or medical department, you may want to start there. If you decide to tell your boss, choose a calm time at work and ask your boss for a moment in private. Be prepared with an informational brochure about hepatitis and, perhaps, a letter about what you will discuss that you can leave with him or her. Also, try to think of questions that your boss might ask about how your illness will affect your job.

What do I tell my co-workers?

Deciding whether to tell coworkers is also a tough decision, and it is one that you may want advice about from counselors or other members of a support group.  if you decide to tell coworkers, remember that trust is a two-way street. If people see you doing your best to eat well, get enough rest, and fulfill your responsibilities at work and at home, they will be more likely to be understanding during those rough periods when you're not feeling as well. This way, people are more likely to feel like sharing some of the workload, rearranging schedules, or covering for you when you have to take time off to see your doctor or get used to a new medicine.

Set a good example about safety as well. Don't share personal care items such as combs or toothbrushes. Such objects could have microscopic bits of blood on them that could infect someone else. Make sure that you always wash your hands thoroughly after using the bathroom and before meals. If others see that you're being extra careful with your own hygiene, they'll be reassured that you're doing what you can to keep them healthy, too.

What are my legal rights?

This section provides a general overview of some federal laws which may apply to your situation. Many states have laws which provide similar protection. For specific advice as to any particular situation, you should contact a lawyer in your area. If you do not know how to find a lawyer, the local Bar association may be able to help.

Deciding to tell your boss or your coworkers about your hepatitis is a troubling question, but for most people, the most important thing is finding a way to stay at work, despite their illness. Under the ADA, your employer must help you find ways to try to accommodate your disability if it starts to interfere with your job. That means that you and your boss must together come up with ways that you can keep working, despite your illness, without disrupting the business. Your employer is not required to spend a lot of money to give you an entirely different workplace, or give most of your responsibilities to other workers. He or she is also not required to change the basic requirements of your job.

To claim your rights under the ADA, you must still be able to perform the essential functions of your job. For example, a waitress must still be able to remember orders and deliver food to customers' tables; a machinist must still be able to operate the tools and keep up with the production line; or a computer programmer must still be able to type, attend meetings, and meet project deadlines. Each situation is different and has to be considered on its own.

Usually, you can work with your supervisor to come up with creative ways to continue to do your job despite the impact of hepatitis on your energy level and schedule. For instance, if you are struggling with nausea, you might ask for an exception to a rule stating that you can't have food at your desk so that you can snack on some dry crackers and tea throughout the day. Other reasonable changes might include flex time, shorter workdays, or perhaps allowing you to take some work home so you can go to outpatient therapy or get additional rest at home as you are getting used to a new drug treatment.

However, in order for you to get accommodations under the ADA, you must tell your employer that you have hepatitis and how it is affecting you. The courts have ruled that you cannot use the ADA to get your job back if you never told your employer that you were ill and then were fired because your health prevented you from doing your job adequately.

If you want to use the ADA to help change your working conditions, you will have to give up some privacy and tell the human resource department and your supervisor that you have hepatitis and how it is affecting you. If, however, your privacy is more important to you than getting some changes to your job, then you may choose not to inform your boss that you have hepatitis. If your symptoms are not affecting your ability to do your job, you may want to simply inform your supervisor and the human resources department both in person and with a short note (for your files) that you have hepatitis, so that if problems come up later, they won't be taken completely by surprise. (Always keep a copy of yourself of any letter like this that you write. You may need it later, if you are dealing with a lawyer, an insurance company, or a government office, for example.) Unless your doctor advises you to do so, there is no need to give your employer lots of details about potential complications, such as cirrhosis or liver transplants, that may or may not develop in the future.

Is working part time the right decision?

If you're having major problems with fatigue, mental concentration, and other symptoms that are keeping you from holding a full-time job, a part-time job may seem to be a good solution. However, keep in mind that if you change your official job status from permanent full time to permanent part time, you may also change your insurance coverage, retirement plan, and other benefits. Company policies may be less flexible for part-timers than for full-timers. It may be difficult to switch back to full-time status. If your medical condition gets worse and you need to apply for Social Security Disability Insurance (SSDI), you may not qualify for full SSDI payments if your last permanent job was part time.

Be sure to find out all the details of part-time status from the human resource department before you make the switch. Perhaps you can arrange a temporary reduction in hours (and pay) that will let you keep your full benefits while you're recovering from hepatitis symptoms or treatment.

Can I use the Family Leave Act?

The Family Medical Leave Act (FMLA) says that if you have worked for your company full time for at least a year, you are allowed to take up to 12 weeks of unpaid time off every year (either on consecutive days or on an intermittent basis) to take care of your own serious medical needs. (Your spouse, child, or parent could also claim time under the FMNLA to take care of you if you are seriously ill.) If you return within 12 weeks or your period of absence does not exceed 12 weeks, under the Act your employer must give you your job (or an equivalent job) back when you return. Make sure you talk to your boss about the FMLA, and whether it applies to you, before you take the time off. Again, many states have laws which provide similar protection. For any particular situation you should consult a lawyer in your area.

If you think that your employer isn't willing to be as accommodating as you want in adjusting your workplace, you can contact the local office of the Equal Employment Opportunity Commission (EEOC), which handles ADA complaints, to look at your situation. (See the Resource List to find out how to contact the EEOC.)

You can also contact the Department of Justice, which operates the ADA Mediation Program. The Mediation Program provides federal mediators, or peacemakers, to try to work out such disagreements. (See the Resource List under the Americans with Disabilities Act Information Line to learn how to contact the Department of Justice in your region or the central office in Washington, D.C.) Every state has at least one mediator to step in and help. If that is not successful, you may still be able to sue under the provisions of the ADA.

Can I get disability payments?

Disability payments are often available under federal and state law. The U.S. government provides disability payments to people who have mental or physical problems that the government believes will keep them from being able to work at all. The Social Security Administration (SSA) has a list of conditions that it considers to be disabilities. If what you're experiencing is not on that list, you will have to prove to the SSA that you have a physical or mental condition that keeps you from being able to work.

Proving that you are disabled takes a lot of effort. You'll need proof of that from your doctor and supervisor, and possibly from some co-workers as well. You may also have to prove that you have tried different ways of working - perhaps doing a different job for the same employer, or adjusting your hours so that you can work when you feel best. The SSA may also want to know if you could work at a completely different job that is not as hard physically - say, instead of being a truck driver, if you could work as a dispatcher, or instead of being a teacher, if you could be a secretary. The SSA will want to know about other job skills you might have - if you have a home computer and can program computers, you might be encouraged to get a job doing that.

Do all you can to make it easy for the SSA workers to understand your situation by giving them complete information. It can be frustrating, but try to be patient with the process. It may take months for your case to work through the Social Security system. If you're asked to provide additional information, do so without delay. The time you waste is yours, not theirs!

Planning for long-term financial security

Many people with hepatitis live with it for decades, so it's important to think through your long-term plans. The best time to deal with these issues is when you're feeling well. It's hard to spend those energetic days taking care of legal and money issues, but you'll be glad you did. Start to do this as soon as possible after you learn about your disease.

Keep saving for retirement. It's more important than ever to be sure that you'll have enough money to live on, especially because your medical expenses may be higher than you'd anticipated. Get details from your employer's human resources department about how you can put more money into your company's pension, profit-sharing, or retirement savings plan. You may want to consult with a certified financial planner to be sure that you have considered every retirement-planning option.

You may also have to change your expectations about how you run your household. Is your house or apartment too big or too cluttered to take care of yourself when you're ill? You could save money, and gain convenience, by reorganizing your belongings or shutting down some rooms. You may even want to consider moving into a smaller place. This is also a good time to think about how you will feel traveling regularly from your home to your doctor's office when you are ill. Is this a convenient trip now? Or is it long and/or expensive?

Finally, make certain that you understand your health insurance benefits, and what you need to do to keep them. If you do not have health insurance, there are strict regulations for what is and is not covered by state and government relief agencies, so find out what the rules are, and stick to them.

This is a confusing time, and it may seem overwhelming having to deal with all of this right now, but you will be very glad you did later. By clearing up these details, and doing your best to become financially secure, you can free your time up for what is most important - taking care of yourself and looking to your future.

Dialogue Box:

TELLING YOUR BOSS THAT YOU HAVE HEPATITIS

You: Do you have a minute? There's something I need to discuss with you.
Your Boss: Sure, come on in.

You: I know that this will be as much a surprise to you as it was to me. I just found out that I've got hepatitis. It's a liver disease, and it's caused by a virus. That explains why I've been feeling a bit under the weather lately.
Your Boss: You certainly haven't seemed like yourself lately. How did you get it? When will you get over it?

You: I'm not sure how I got it, but the doctor says that really isn't the important issue anyway. Getting the right medical care is the most important thing right now. There are treatments that help some people with hepatitis, and I'm checking that with my doctor, but it probably won't be going away any time soon. In the meantime, I'm trying to get more rest than usual, and I'm also making some changes in what I eat to try to build up my strength. I just wanted to let you know what's going on, because there may be times when I need time off for medical appointments, or just to rest.
Your Boss: Well, of course, I understand about that.
How much time off do you think you'll need?
And can you still do your job?

You: Well, for right now I don't think I need any more time than what I get for sick days. I just want to be sure you understood that this is something I need to take care of, and that I will be sure to take the time only when I really need it. I can still do all of the parts of my job.
Your Boss: I see. Is there anything else that I need to know?

You: Not at this point. I've talked to my doctor about this, and she feels it's OK for me to keep working for now. I feel all right most of the time, but if I'm feeling too sick to come to work, I'll give you a call.
Your Boss: OK. Keep me informed and let me know if there is anything else I can do.

You: There is actually one more thing. See, this is very personal, and I don't really want other people here to know about it yet. Could we just keep this between ourselves for now?
Your Boss: That seems reasonable. Again, let me know how you are doing and if anything changes.

You: That's great. I knew you would understand, and I really appreciate it. Just for your records, I've written down what we just discussed in this letter to you. If you have any more questions about my hepatitis you can review this letter or please feel free to ask me.

SETTING UP A FILE SYSTEM RELATING TO YOUR CONDITION

If you keep copies of important medical papers on hand, it will be easier to fill out paper work for medical and insurance benefits, the Social Security Administration (SSA), and other agencies that may need to know your whole medical history.
- Make a file folder for each of these categories. Be sure to keep your files up-to-date.

- Record your basic medical history, including all immunizations, illnesses, and treatments.

- Including copies of your birth certificate, Social Security card, your driver's license, your passport, and life and health insurance documents.

- Include copies of all hepatitis treatment related documents, such as tests results, doctors' opinions and comments, X-rays, ultrasounds, and other health records. You may want to keep a time line that summarizes your history with the disease, starting from when you first had symptoms, when you first were diagnosed with it, and all treatments since that time.

- Include copies of all medical receipts, hospital bills, and prescriptions, plus canceled checks and statements of reimbursements from your healthcare providers and insurance companies.

- Keep a dated work diary that charts how hepatitis has affected your ability to do your job; detail any problems and the solutions that you and your supervisor developed to handle them. Also include copies of your personnel file showing when and how you told your employer that you have hepatitis, who your supervisor was then, and how your employer changed or adjusted your job responsibilities to enable you to keep on working. Keep detailed records, including dates and places, about any requests that you made to your employer to have adjustments made to your job, and about any resulting solutions or disagreements.

- If you can, ask a few sympathetic coworkers, a clergyman, or friends to write notes that describe how hepatitis has affected your ability to do your job and live a normal life. Be sure that the notes are dated and include the writer's address and phone number.

- Include a time line that shows when you applied for any government benefit, who you talked to and that person's phone number and title, and the time, date, and results of all follow-up calls. Include copies of any letters you send to the SSA or receive from them, and the responses.

THE BASICS OF THE AMERICANS WITH DISABILITIES ACT

The Americans with Disabilities Act (ADA) defines a disability as a "physical or mental impairment that substantially limits one or more of the person's major life activities." (Note: Employers with fewer than 15 employees do not have to follow the ADA.) Under the ADA, your employer cannot discriminate against you because you have hepatitis by:

- Limiting your opportunities or status

- Starting company policies that will discriminate against you

- Refusing to give you benefits

- Not making reasonable changes, called accommodations, to help you continue to do your job

- Using your illness as an excuse to prevent you from doing some aspect of your job

- Using a pre-employment test that intends to determine something about your illness rather than whether you can do the job you're applying for

http://www.hepnet.com

Other points of interest: From HCV ADVOCATE

Read about people who have lost their jobs or suffered discrimination because they had HCV, and about the court cases and laws enacted to protect you against discrimination in the workplace.

Employer Pays $24,000 for Hepatitis C Firing

Restaurant Employee Fired becuase of HepC

Firing Man for Being Hepatitis C Carrier Illegal, Court Rules

Commission Sides with Fired Restaurant Staffer

Americans with Disabilities Act: Protection for People Diagnosed with Chronic Hepatitis B or C

Hepatitis C Basics: Disclosure


Click here for more on Insurance and Benefits, and Disability issues
http://www.hcvadvocate.org/hepatitis/Workplace.htm