It is challenging to be an effective health care consumer. The system can sometimes be quite confusing. As a person with chronic hepatitis C, you will be meeting new people, learning new terminology, and perhaps living by new rules. Learning about the various medical disciplines and becoming familiar with new medical terms may help you become a more confident and comfortable health care consumer.

People newly diagnosed with hepatitis C are often amazed at how much others with the illness know about it. You may marvel at how easily they talk with health care providers and others. Believe it or not, after a surprisingly short period, you will probably be doing the same thing.

This chapter covers the following topics.

choosing your health care provider(s)
building a relationship with your health care provider(s)
communicating effectively with your health care provider(s)
maintaining your medical records
understanding your health care coverage, disability, and Social Security issues
accessing compassionate use drug programs

Choosing Your Health Care Providers

As a health care consumer, you have the right to choose your health care providers. They will be helping you make decisions that may greatly affect your life. Therefore, it is important for you to feel confident about the quality of care you receive. Confidence in your doctors comes from knowing they are well informed about hepatitis C, and are both skilled and experienced in their profession. Your comfort with your providers is also strongly influenced by their attitudes toward you as a client.

Some sample lists of questions are included in Appendix VI, You and Your Health Care. These questions were developed to help you choose health care providers who meet your needs, and communicate effectively with them.

Choosing your health care providers is the first step in getting your health care needs met. Deciding on the roles you want your providers to play in your health care is the next step.

The Roles Your Health Care Providers Will Play

Health care professionals in the United States are either western or complementary and alternative medicine(CAM) providers. Western doctors are either allopaths (MDs) or osteopaths (DOs). CAM providers are trained in one or more health care disciplines such as traditional Chinese medicine (TCM), chiropractic medicine, Ayurveda, naturopathy, homeopathy, or other forms of non-allopathic medicine. CAM practitioners use a variety of treatment methods including massage, healing touch, herbs, nutritional supplements, acupuncture, and other techniques, many of which have been used for thousands of years.

We strongly urge everyone with hepatitis C to have a western doctor on your health care team. Only these providers can order some of the tests necessary to monitor disease progression.

Your health care goals will influence your choice of health care providers. The chapters in Part Two of this book describe various western and CAM treatment options for hepatitis C. Your personality, health care beliefs and goals, and feelings about having hepatitis C should be taken into account in determining those healing disciplines that best suit your needs.

The members of your health care team and their roles are entirely up to you. One health care professional will need to serve as your primary care provider. He or she will coordinate your care and monitor your overall health. Either a western doctor or a CAM practitioner may act as your primary care provider, although your insurance coverage may influence your choice. Some people with hepatitis C see only western medical doctors. Many others have a western doctor as their primary provider and consult with one or more CAM practitioners. Alternatively, a CAM professional can serve as the primary provider and consult with a western doctor to monitor disease progression.

Regardless of whom you choose as your primary care provider, if you receive care from more than one health care professional, it is very important to keep all of them informed about everything you are doing and all of the products you are taking. This is important to insure that treatments prescribed by one health care provider do not change the effects of treatments prescribed by another provider.

Getting Referrals

Finding a western health care provider to either manage or consult on your health care often begins with a referral. You will want a referral to a doctor who is knowledgeable about hepatitis C. The referral will probably come from another western health care provider such as your primary care doctor. When you ask for a referral, keep in mind that some health care providers are uncomfortable saying anything less than complimentary about a professional colleague. You may have to read between the lines. If someone seems uncomfortable, vague, or unenthusiastic about another provider, this may suggest an unspoken concern. A provider who refers all of his or her patients to one provider without considering the circumstances might also raise a concern. As hepatitis C is a complicated disease, we suggest you ask for a referral to someone who specializes in treating hepatitis C. Friends, colleagues, and other people with hepatitis C can also provide referrals based on their own experiences.

You may be referred to a gastroenterologist, an infectious disease specialist, or a hepatologist. Infectious disease specialists treat people with viral, bacterial, and other diseases caused by an infectious agent. Gastroenterologists specialize in diseases of the gastrointestinal system, which includes the liver. Hepatologists are gastroenterologists who treat only people with liver disease.

Whether you choose a CAM provider or a western provider to manage your care, keep in mind that your insurance coverage may limit your choices. This is particularly important if your insurance coverage is through a health maintenance organization (HMO) or a preferred provider organization (PPO). HMOs usually require a referral from your primary care doctor before you are able to see a specialist. Many PPOs also have this requirement. HMOs and PPOs have a list of health care providers who are members of the organization. Usually, you must choose a provider from this member list. Before you see a specialist or a CAM provider, check with your insurance company to see what services are covered under your policy. Coverage for CAM services vary greatly from one insurance carrier to another. Checking about coverage ahead of time will prevent you from being in the unhappy situation of getting unexpected medical bills.

Checking a Health Care Provider’s Credentials

We urge you to take the time to find out about a health care provider’s credentials and experience. It is important to work with providers who are skilled and experienced in the management of hepatitis C.

Many public libraries have books such as the American Medical Directory, The Directory of Medical Specialists, and Top Providers of America, which can be good sources of information if you are looking for an allopathic doctor (an MD). Many other resources are available on the Internet for allopathic, osteopathic, naturopathic, and other CAM providers. See the Resource Directory for the Internet addresses of these sites. If you do not have your own computer, you may be able to use a friend’s computer, or ask him or her to do some research for you. Most libraries have computers available for public use. Many businesses such as copy centers that have public use computers available for a small fee. You are usually charged according to the amount of time you use the computer. Many public gathering places such as coffee shops and cafe’s also offer Internet access to their customers.

If you are a veteran, see Chapter 19, Military Veterans and Hepatitis C for specific information about the Veterans Administration and your health care.

The Provider/Patient Relationship

Your health care provider(s) will be making recommendations about health care decisions that may have lasting effects on your life. How you relate to these professionals is an important factor in achieving successful treatment and ongoing care. When talking with a potential health care provider for the first time, ask yourself if you are comfortable with the way this person treats you. If you intend to use one or more alternative therapies in your treatment plan, ask any western doctor you interview if he or she will work supportively with you to incorporate these choices into your overall treatment plan. Remember, you are hiring health care providers to work with you, not the other way around.

After you have interviewed an individual you are considering as a health care provider, you will need to decide if he or she is someone you would like on your health care team. Asking yourself questions such as the following may help you decide.

Was I comfortable with him/her?

Did he/she take enough time to answer my questions?

Did he/she treat my questions with respect?

Did he/she answer my questions willingly and completely?

Did we agree on issues about which I have strong opinions?

Does he/she have a thorough understanding of hepatitis C?

Did he/she adequately explain things to me?

An important consideration in assembling your health care team is deciding on the kind of provider/patient relationship that will work best for you. Answering the following questions may help you figure out what type of relationship best suits your personality.

Do you want to have a significant role in reviewing information and making decisions? Or do you want your health care provider to tell you what to do and what treatments you should receive?

Do you want a health care provider who uses only standard western treatments? Or do you want a provider who practices integrated medicine and is more likely to suggest experimental or CAM approaches?

Do you want your provider to provide only facts? Or do you want your health care provider’s opinions about what you should do?

What personality traits are important for your provider to have?

Some people want their provider/patient relationship to be an equal partnership. There are certainly advantages to this type of relationship. You may feel you have lost some control over your life as a result of having hepatitis C. Participating in your health care may help you feel you’ve regained some of that control. While this type of relationship suits some people, it is not right for everyone. You may find the stresses of everyday living with hepatitis C are challenging enough without adding the additional stress of making all of your own health care decisions. In this case, allowing your health care providers to make decisions about your care removes an unwanted burden. Not having to think about the illness and/or its treatment may give you some much needed peace of mind. Only you know what kind of provider/patient relationship is best for you.

Communicating Effectively With Your Health Care Providers

You and your health care providers must communicate effectively for you to get the best care. All information you provide your health care providers about yourself is important. There is no right approach to treatment. Knowing your ideas and feelings will help your health care provider determine which treatment protocol will best match your needs. If you are unable to talk openly and honestly with your health care providers, try to identify what is interfering and work to change it. If the problem persists, you may want to consider seeing a different provider.

Be sure to tell all your health care providers what information you want kept confidential and what information they are free to discuss with your family and friends.

Tips for Talking with Your Providers

Most health care providers will speak with you privately in an examining room. However, it may be more comfortable for you to talk about important issues in an office or other private room. If you prefer to have your meeting in an office rather than an exam room, be sure to let the office staff know this when you make your appointment.

As a health care consumer, you have a right to have all of your questions about your health care answered to your satisfaction. You might have to ask questions more than once, but keep asking them until they are answered. If your health care provider or a nurse cannot answer your questions, ask for a referral to someone who can.

Here are a few tips that can make your interactions with your health care providers easier.

If your health care provider seems distracted or less friendly on one day than another, do not take it personally. It probably has nothing to do with you. Your health care provider is human, too, with different moods, energy levels, and personal concerns. Health care providers often have to protect themselves from becoming emotionally drained so they can provide equal care to all of their patients. Treat your health care provider with the same consideration and respect with which you expect to be treated.

If you are upset with your health care provider, try not to ask angry questions or make angry statements. Instead, express your feelings to someone you trust such as a family member, friend, or support group member. When you talk with your health care provider, try to phrase your comments and questions clearly but without a lot of emotional intensity. This will prevent an upsetting situation, and will help you get your needs met in a positive way.

If you are aware of any extra efforts your health care provider has made for you, express your appreciation. Tell your health care provider if there are things about his or her style of working with you that are particularly helpful. A simple expression of gratitude can go a long way toward establishing a productive relationship.

If your provider does not have time to answer all of your questions during a regularly scheduled appointment, make an appointment just for that purpose. Be sure to say how much time you will need and that you will need your health care provider’s undivided attention.

Ask your health care provider what kinds of things to call about, and the best time to call. This should help you come to an agreement about telephone contact that will work for both of you.

If you make a telephone call to your health care provider, state your need, ask if your provider can take the call, and say how long you think the call will take. If your health care provider cannot take your call, ask when you should call back or when he or she can call you.

Some providers use e-mail to answer questions from their patients. Ask your provider if he/she accepts questions via e-mail. When using e-mail to communicate with your doctor, try to ask specific questions. It is a good idea to reread your e-mail before sending it to make sure it expresses what you want to say.

Talking About Sensitive Issues with Your Providers

Even if you respect your health care provider’s skill and knowledge, you may not feel comfortable talking with him or her about how hepatitis C affects you emotionally. If this is the case, you may want to speak with a social worker or get a referral to a mental health professional.

Some issues may be difficult to discuss with your health care providers such as sexual concerns. Though it may be difficult to bring up sensitive issues, try to keep in mind your health care provider is used to discussing sensitive matters. It is always better to discuss your concerns rather than worry about them. You may find it is easier to talk with a nurse about an issue you may not feel comfortable discussing with your doctor. However, if the discussion affects your care, be aware that the nurse will need to share your discussion with your doctor.

If you feel strongly about issues such as pain management, the initial interview may be a good time to discuss these issues. Coming to an understanding about issues that are important to you at the start of your relationship can prevent the need to change health care providers down the road.

Handling Communication Difficulties with Your Health Care Providers

If you are not satisfied with the care you are receiving, or if you are uncomfortable with the relationship you share with your health care provider, ask to talk with him or her in person about your concerns. Prepare for the meeting by writing down your questions and concerns ahead of time. Be specific about what you are dissatisfied with, and what changes you would like to see. Following these guidelines may help you specify your concerns and communicate them effectively.

Describe the specific behaviors that bother you and how they make you feel. Try not to use negative words to describe your health care provider, or his or her attitude.
Describe specific incidents that you have found troublesome as accurately as possible.
Admit any part you may have played in the problem.

If you either cannot or do not want to meet in person, present your concerns in a letter. This approach can be useful because it gives your provider time to think about your concerns before getting back to you. Ask for your health care provider’s ideas about ways to resolve the problem.

If you are generally satisfied with your health care provider, but have concerns about a particular decision or recommendation he or she has made, you may want to get a second opinion about that particular issue. Your health care provider can give you the names of other providers who can provide a second opinion. Under some managed care plans, you may have to pay for a second opinion. However, you may be able to appeal this decision.

It is important to try to work through any difficulties you might have with your health care provider. However, if it appears that it is just not a good match, you may want to consider finding a different health care provider. This is your right as a patient. Your health care provider should be willing to give you a referral to another health care provider if you request it. You can also get referrals from other health care providers or other people with hepatitis C. You may need to get approval from your insurance carrier before changing care providers. Though it can be somewhat stressful, keep in mind that changing health care providers does not mean there is anything wrong with either you or your health care provider.

Your Role in Treatment: Gathering Information

You can take an active role in your health care by educating yourself about hepatitis C. Your health care providers may have educational materials about medications and supplements, side effects, and their management. Since product manufacturers often provide these materials, you might ask your health care provider to direct you to additional sources of information. Patient advocacy organizations and hepatitis C support groups can be invaluable sources of information about the disease and its treatment. See the Resource Directory for a list of hepatitis C advocacy and support organizations.

If you are comfortable reading technical information, you may want to read medical journal articles about hepatitis C. However, be aware that these journals are intended for health care professionals, so they can be very challenging reading. If you are interested in reading scientific publications, ask a member of your health care team for recommendations about appropriate journals and/or articles. A hospital librarian or the reference librarian at your local public library can help you locate specific journals or articles.

The Internet is another good resource for information about hepatitis C. Any search engine can lead you to a number of resources. However, keep in mind the Internet is unregulated. Anyone can post just about anything on the Internet regardless of its accuracy. Sites that are reviewed by a medical advisory board are generally more reliable sources of information than sites with no such oversight.

Getting Information from Your Health Care Providers

Gathering information takes time and effort. However, it is important to get answers to your questions. If you have questions for your health care provider, organize and write them down ahead of time. Your time with your health care provider is often limited. Being organized will help you get as many of your questions answered as possible in the time available. Identify the two or three most urgent questions. You may even want to give your list of questions to your provider before your appointment so he or she is prepared to answer them. Ask your provider to read all of your questions, not just those you have marked as most urgent. He or she may see questions on your list that are more important than you realize. Be sure to speak up if you do not understand the answer to a question. If you cannot get all of your questions answered in one appointment, you may want to schedule a follow-up appointment just for that purpose.

Nurses are often good sources of information about treatment and care. They are usually easy to approach, and most nurses will go out of their way to make sure you get the information you need as quickly as possible.

Pharmacists can answer questions about your medications, and are often easily accessible. Be sure to tell your pharmacist about all of the medications and supplements you are taking. The pharmacist can advise you about possible side effects, and potential interactions between drugs and/or supplements. However, it is very important that each of your health care providers knows all the drugs and/or supplements you are taking to be certain the various treatments are compatible with one another, and that there is no risk of harm.

The more you know about hepatitis C, the less confused and anxious you are likely to be. Understanding the reasons for particular treatment options, and taking part in the decisions about what options are right for you may help you sort through your priorities.

Health Insurance Portability and Accountability Act (HIPAA)

If you have seen a health care provider recently, you have heard of HIPAA-the Health Insurance Portability and Accountability Act of 1996. In general, HIPAA provides two major protections to health care consumers:

confidentiality of information about your health care

the ability to continue for a period of time the insurance coverage provided by your employer if you leave a job

The privacy protections outlined in HIPAA took effect in April 2003. The patient protections fall into the following categories: ¹

Access To Medical Records
Patients should be able to see and obtain copies of their medical records and request corrections if they identify errors and mistakes. These records should generally be provided within 30 days. Providers may charge for the cost of copying and sending the records.

Notice of Privacy Practices
Doctors and other health care providers must provide notice to their patients how they may use personal medical information and their rights to privacy. Patients will generally be asked to sign, initial, or otherwise acknowledge that they received this notice.

Limits on Use of Personal Medical Information
The HIPAA rules limit on how health plans and providers may use personal health information. The rule does not restrict the ability of doctors, nurses, and other providers to share information needed to treat patients. However, personal health information generally may not be used for purposes not related to health care. In addition, patients have to sign a specific authorization in order for their medical information to be released for any purpose not related to their health care.

Prohibition on Marketing
HIPAA privacy rules restrict and limit the use of patient information for marketing purposes. Pharmacies, health plans, hospitals, and other health care providers must obtain an individual's specific authorization before disclosing their patient information for marketing purposes.

Stronger State Laws
The new HIPAA rules do not affect state laws that provide additional privacy protections for patients. Any state law providing additional protections above and beyond those outlined in the HIPAA regulations continue to apply.

Confidential Communications
Patients can request that their doctors and other care providers take reasonable steps to ensure that their communications are confidential. For example, a patient could ask a doctor to call his or her office rather than home, and the doctor's office should comply with that request if it can be reasonably accommodated.

Complaints
Consumers may file a formal complaint regarding the privacy practices of a covered health plan or provider. Such complaints can be made directly to the covered provider or health plan or to HHS' Office for Civil Rights (OCR), which is charged with investigating complaints and enforcing the privacy regulation. Consumers can find out more information about filing a complaint at www.hhs.gov/ocr/hipaa or by calling (866) 627-7748.

The health insurance provisions of HIPAA address the following concerns of consumers: ²

limits the use of pre-existing condition exclusions (denying coverage for expense related to a condition you had when you signed up for an insurance plan)

prohibits group health plans from discriminating by denying you coverage or charging you extra for coverage based on your or your family member's past or present poor health

guarantees certain individuals who lose job-related coverage the right to purchase health insurance

guarantees (in most cases) that individuals who purchase health insurance can renew the coverage regardless of any health conditions of individuals covered under the insurance policy

In short, HIPAA may lower your chance of losing existing coverage, ease your ability to switch health plans and/or help you buy coverage on your own if you lose your employer's plan and have no other coverage available. The insurance portability provision of HIPAA makes it easier for people with chronic diseases such as hepatitis C to purchase and maintain health coverage. While HIPAA allows you to maintain health coverage, be aware that there are time limits. Also, continuation of coverage will be at your own expense; your employer does not pay for continuation of coverage under HIPAA. For additional information about HIPAA, see www.hhs.gov/ocr/hipaa for privacy information and www.cms.hhs.gov/hipaa/hipaa1/content/cons.asp for health coverage information.

Maintaining Your Medical Records

It may be helpful to keep your own set of medical and insurance records. Managing your treatment records and filing insurance claims can take a lot of time and energy, though doing so may help you regain a sense of control over your situation. You may want to turn this responsibility over to someone else if you are not feeling well. Family members and friends often feel helpless when a loved one is sick. The opportunity to help you may come as a welcome relief to this sense of helplessness. A social worker or a community service organization may also be able to help. Some private companies check bills, file claims, track deductibles, and advocate for their clients.

You can create your own medical record file. Start by contacting the medical records departments of any hospitals or clinics where you have received care. Requests for copies of your records usually need to be in writing. Be sure to ask for copies of everything in your file. If possible, get copies of all treatment records and tests including x-rays, biopsies, and other lab reports. These documents will provide you with an easily accessible historical record of your hepatitis C experience. It is also a good way to keep track of the medications and supplements you are currently taking or have taken in the past.

Keeping a diary of your reactions to medications and supplements may help you identify those that seem to be helpful and those that do not. Your provider will have a reference for making treatment recommendations, and you will have a record of your reactions to specific drugs and/or supplements.

Health Care Coverage

At times, it may seem that your relationship with your insurance carrier is almost as important as your relationship with your health care provider. You may need to call for authorization to see a specialist. You may need to get permission to have certain tests done. You may need to ask questions about billing procedures and what charges you will have to pay. You may even need to voice a complaint. If you can, establish a relationship with one person in customer service who is familiar with you and your situation. These workers are often called case managers. The more familiar your case manager is with your situation, the easier it will be to get the information you need. He or she may even be willing to advocate for you, if necessary. If you cannot get the help you need or if you are not satisfied with a decision your case manager makes, do not be afraid to ask to talk to someone with greater authority.

Keeping Accurate Records of Medical Costs

It is important to keep records of all of your medical care costs. Ask for a receipt each time you go to an appointment. Before leaving the office, review the receipt to make sure everything is correct. Keep track of all insurance claims and expenses, including such things as mileage to and from medical appointments. You may be able to deduct a portion of your medical expenses from your federal and state tax debt. The Internal Revenue Service can help you to determine which expenses are deductible from your federal tax debt.

When you receive a statement from your insurance company, review it to make sure it is accurate. Call the insurance company immediately if you find a mistake. Ask to have the error corrected, and to be sent a corrected statement. Review the new statement to make sure that all changes have been made and the total is accurate.

When a health care provider submits a claim, the insurance company responds by paying the provider the covered amount. You will receive a statement showing the request for payment, and the amount of reimbursement to the provider. If the amount is not covered entirely, the carrier will instruct you to pay the health care provider whatever amount is remaining. Normally, your health care provider will also send you an invoice for any remainder that is due. As many people with hepatitis C know, medical bills can pile up very quickly. If you are unable to pay the full amount you owe on a bill, call your health care provider and ask to set up a payment plan. Most health care providers are aware of the financial burden of health care and are usually willing to work out a reasonable payment schedule.

Filing Insurance Claims

Most hospitals and many medical offices will file claims to your insurance company for you. However, be sure to file claims for all medical treatments you receive that were not filed by the provider. People often do not get the most from their medical insurance because they either do not know what is covered or are overwhelmed by the paperwork. If you are filing claims yourself and are not sure if something is covered, file the claim anyway. Even if the cost is not reimbursed, it might be applied to your deductible. There is no harm in trying.

Your insurance company may not cover treatments or services your health care provider considers necessary for any of a number of reasons. The insurance company may not be up-to-date on the latest treatments. They may not share your health care provider’s views about standard and experimental treatments. Some insurance companies try to keep costs down by covering only older, less expensive treatments. Carriers often refuse to pay for treatments that have not been approved by the Food and Drug Administration (FDA). If a claim is denied, do not panic. Denied claims can be appealed.

Appealing Denied Insurance Claims

If you decide to appeal a denied claim, contact the insurance company to find out about the appeal process. If possible, find out who made the decision to deny your claim and talk with him or her to find out why the claim was denied. If that person does not answer your questions satisfactorily, ask to speak to someone with more authority. Your state insurance commissioner’s office may be of assistance.

If a claim is denied because the treatment is not considered standard care, a letter from your provider explaining that your treatment is consistent with standard practice may help. Copies of articles from respected medical journals that support the treatment may also help.

If your health care provider’s fee is challenged for being above what is customary, check with other local providers to find out if their fees for that procedure are similar to what you were charged. If you need assistance, someone involved in billing at your health care provider’s office should be able to help.

Document any conversations you have with a representative of your insurance company in a brief letter to that person. Summarize the conversation and any arrangement or decision that was made.

Submit all requests in writing. Keep copies of all written correspondence you have with your insurance company, billing agencies, hospitals, and doctor’s offices. When you speak with a representative of one of these organizations by telephone, make a note of the date and time, who you spoke with, and what you discussed. Consider keeping a notebook by the telephone for taking notes during telephone conversations.

Changing Insurance Plans

If you plan to change jobs, be aware that you may not be able to enroll in your new employer’s medical insurance plan for a period of time. Also be aware that some insurance policies have what is known as a pre-existing condition clause. This clause states the insurance carrier will not cover expenses for a previously diagnosed medical condition. This clause may be in effect for a defined period, or it may permanently exclude coverage for such a condition. These clauses are most frequently encountered in policies issued by relatively small companies. However, the HIPAA regulations have significantly reduced the use of such clauses. Many exclusionary practices that were permitted before the HIPAA regulations took effect are now illegal.

It is very important to find out the details about health insurance coverage before making a decision to change employment. Some people decide to consider a less satisfying or lower paying job in order to get the kind of health insurance they need.

Getting Health Care Without Health Insurance

Many people do not have health insurance. Once you have been diagnosed with hepatitis C, getting health insurance may be difficult. However, there are always options to get the health care you need. For example, many states have a high-risk insurance pool that is set up to provide insurance for citizens who would otherwise be denied health insurance. Many of these pools provide competitive rates and services.

Medicaid is another option. Medicaid provides health insurance for people with low incomes, the disabled, and certain groups of children. Services are provided through your state under federal guidelines. Benefits vary widely from state to state. To apply for Medicaid, contact your state’s department of social services.

Patient advocacy organizations, support groups, and social workers are all good sources of information about these and other options for obtaining health care in a difficult situation.

Compassionate Use Programs for Prescription Drugs

Several pharmaceutical companies have compassionate use programs covering their prescription drugs. These programs are also known as patient assistance programs. These programs provide drug treatments for individuals with low incomes who do not have medical insurance, and would not otherwise have access to these treatments. To qualify for one of these programs, you will probably need to provide basic information about yourself, and your health care provider’s name and contact information. Some programs will only work directly with your health care provider, or a representative such as a social worker or case manager. You will probably be interviewed to verify that you qualify for the program. Most programs request proof of your income level. Review for final approval varies, but many programs make a decision within a matter of days.

For compassionate use programs contact information, see the Pharmaceutical Companies listing in the Resource Directory.

Disability Status under Social Security

Hepatitis C affects everyone differently. How much the illness affects your daily life depends on the status of your liver, your age, overall health, and a number of other variables. Some people with advanced disease and/or severe symptoms find they are unable to work. If you are unable to work because of your hepatitis C, you may want to consider applying for disability benefits from the Social Security Administration (SSA).

Gaining approval for social security disability benefits can be challenging. SSA denies the majority of first time claims. However, an initial denial should not keep you from pursuing this option. If you have been denied, you must appeal the denial within 60 days. You can build a strong case for your appeal by paying close attention to the information and documentation SSA requires. Be sure to follow all instructions carefully. Be honest, accurate, and brief when completing the required forms. You will need detailed medical records that document your symptoms and limitations. You will also need the support of a doctor, psychiatrist, and/or psychologist if you hope to win your case. SSA requires proof that your diagnosis causes your limitations. There must also be medical proof that your limitations are significant and severe enough to prevent you from working full-time on a sustained basis.

If you want to win your SSA disability claim, it is important to receive continuous and consistent medical care. This will allow you to provide SSA and a judge with current and complete medical records that support your doctors’ opinions. You can choose to use any CAM therapies you believe are beneficial. However, be aware that SSA and judges are most persuaded by western doctors your response to mainstream treatment.

You should apply for disability benefits as soon as you and/or your doctors believe your hepatitis C will prevent you from working for at least one year. Waiting to file may cost you benefits that cannot be recovered. Many people recommend consulting with and/or hiring a disability lawyer as soon as possible after you have filed your claim. A lawyer can explain the process and lay the proper foundation for your case. If you decide to hire a disability lawyer, find one who is familiar with SSA rules and regulations. You should have an agreement with your attorney that you will only owe fees if you win your case and receive benefits. For more information, see the Resource Directory.

Summary

Dealing with the health care system can sometimes leave you scratching your head and wondering what you are supposed to do next. You will meet new people, hear and use new words, and very often, live by new rules. Information is probably the most important tool you have for making your way through the maze and getting the best care you can — the care you deserve. Gathering information will put increased demands on your time and energy, but you may be surprised at your own strength and stamina.

You can do a great deal to advocate for your own rights and needs. Be assertive about your needs with your current health care providers and when choosing new providers. Look for treatment facilities that meet your needs. Ask about new treatments and clinical trials. Analyze your insurance coverage and other financial concerns.

Remember, there are always options.