Taking Control Money Matters for People with Kidney Disease

Chapter 1: Understanding Costs

In all stages of kidney disease, you will have medical expenses for things like doctors' visits, lab tests, and drugs. There are also other expenses for dialysis or a kidney transplant when chronic kidney disease (CKD) progresses to Stage 5, kidney failure. These costs will depend on your health, where you live, what type of treatment for kidney failure you choose, your insurance coverage, and other factors. Ask your doctors and health-care providers for an estimate of costs and keep track of them in a notebook or on our CKD costs worksheet. Taking this step can make you feel more in control of kidney disease and its impact on your financial life, and free you to focus on what is your main concern—getting healthier.

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Chapter 2: Keeping Health Insurance Coverage

Millions of Americans depend on health insurance to help pay their medical costs, and patients with chronic kidney disease (CKD) may depend on health insurance even more. If you have an individual health insurance plan, or one through your employer, consider talking with the health insurance company you bought your plan from, or with the person at your job who is the contact for health insurance questions. If you are worried that this might put your job or insurance in jeopardy, be sure to read your policy and "Protecting your right to work" in the full PDF.

If you happen to change jobs, thanks to the Health Insurance Portability and Accountability Act (HIPAA), the new employer's plan can pay for your kidney disease expenses. You can't be turned down for insurance just because you have a "pre-existing condition," CKD, and you can't be denied coverage for kidney disease costs. You can ask your new employer for information about HIPAA, or read about it online at www.dol.gov/ebsa.

If you're qualified for a job and can do it, you cannot be fired or turned down when applying just because you have kidney disease. This protection is provided by the Americans with Disabilities Act (ADA) and all businesses with 15 or more employees must follow this law.

If you lose your group health insurance because you are laid off, become too ill to work, or your work hours are reduced, you may be able to keep your health insurance coverage for a limited time under the government's Consolidated Omnibus Budget Reconciliation Act (COBRA).

If you don't have health insurance, and you need dialysis or a transplant, Medicare may pay many of your medical costs, but not all of them. For more information on these government programs, see Chapter 3.

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Chapter 3: What Medicare, Medigap, Medicaid, and Medicare Savings Programs Can Pay For

The government provides programs that can help pay a large part of the cost of medical treatment for your kidney disease. Medicare Parts A and B, Medicaid, and Medicare Savings Programs are available through agencies of the federal and state governments. Medigap and Medicare Part D (Prescription Drug Coverage) can be purchased from some insurance companies.

Medicare helps Americans and legal residents of all ages who need dialysis or a kidney transplant. Medicare has three parts:

  • Part A is hospital insurance that helps pay for hospital room and board, drugs and supplies while you are in the hospital, and other services. There is no monthly premium for this part of Medicare if you need dialysis and if you have enough work credits.
  • Part B helps pay for most of the other services and supplies that people with kidney failure need, including doctors' services, dialysis, outpatient hospital care, and other medically necessary services Part A does not cover. There is a monthly premium for Part B services and an annual deductible.
  • Part D is a new drug plan to help people on Medicare save money on prescription drugs. For most, Part D is voluntary, so you can choose to be in it or stay with a drug insurance plan you have through your employer or Medigap. These plans are offered by private insurance companies and each company's plan may cover different drugs.

To see more specifically what Medicare can pay for, see the table on page 23 of Chapter 3.

If you are under age 65, your first chance to enroll in Medicare begins in the month you begin treatment for kidney disease and ends seven months later, but this is not your last chance to enroll (see "Delaying Medicare Enrollment" on page 30 of the full PDF). Medicare will not start until the first day of your third full month of dialysis, if you choose in-center hemodialysis. If you need a transplant and are not on dialysis, Medicare payments can start the month you are admitted to a Medicare-approved hospital for a transplant or up to two months before admittance if pre-transplant health care and testing are begun.

Coverage only for kidney failure will end 12 months after you stop dialysis if your kidney function improves, or 36 months after you have a successful kidney transplant. It will not end if you have to return to dialysis or get a kidney transplant within those time frames. Even if you have Medicare, you will have to pay some of your medical costs. Several programs can help you with those costs, including Medigap policies, Medicaid, Medicare Savings Programs, and state kidney programs. For more information on these programs, see Chapter 3.

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Chapter 4: How Social Security Can Help

Social Security may be able to help you if it determines you are disabled through a Social Security disability program. Social Security has a very strict definition of disability: it must be the result of a mental or physical condition, such as chronic kidney disease (CKD), which has lasted, or is expected to last, at least one year. If you are in the early stages of the disease, you may not qualify, but if you need dialysis or a transplant, you probably will qualify. You must not be able to do "substantial" work because of your kidney disease. This means you are unable to earn more than a specific amount of money each month.

If you have held a job and paid Social Security taxes, you will be able to get monthly payments from the Social Security Disability Insurance (SSDI) program if you meet Social Security's definition of disability and have worked long enough to qualify. The Supplemental Security Income (SSI) program gives money to adults and children who are disabled, have limited income, do not have much in savings or financial assets, and have little or no work history. You can apply for SSDI or SSI by scheduling an interview in person at your local Social Security office or over the phone.

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Chapter 5: More Sources of Financial Help

In addition to health insurance and government programs, other resources are available. Some states offer programs to help residents: if you're a veteran or American Indian, or you have a child with kidney disease, you may qualify for special health-care plans or alternatives. Also, a number of organizations, including drug companies and charities such as the local Kidney Foundation affiliates, can help pay for some services.

State kidney programs help people living in that state pay for their kidney disease health care, but usually only after those people have taken advantage of federal and state help. Each program is different in what it pays, how much it pays, and who can qualify for help. A few states offer programs that provide income to workers who cannot work due to disability, but whose disability was not caused by work. These programs serve as a safety net, providing some income until a worker can qualify for Social Security Disability Insurance (SSDI).

If you own a life insurance policy that has a cash value (whole life, universal life, and others), you might be able to borrow up to 90 percent of that value, but you will have to pay interest on what you borrow. Talk to your insurance agent or company and ask how much cash value is in your policy and how much you can borrow.

Workers' Compensation is an insurance program that pays benefits to employees who are injured or become ill because of their job. If you want to make a claim, tell your employer as soon as you can.

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Chapter 6: Definitely Yes! Going to School, Working, and Traveling

For many people, it is absolutely possible to return to a "normal" life. As dialysis becomes routine or as you recover from your transplant, and as your strength and health improve, you can return to the important things in your life, including going to school, working, and traveling for business and pleasure.

Education develops the mind and social skills, and it also is a key factor in how much money an individual will earn over his or her lifetime. Going to school can be as important to children as going to work is for adults, yet disabled children are twice as likely to drop out of school as healthy children. Additionally, if you are the parent of a college-age child with CKD and have a health insurance plan at work, be sure to ask how long that plan will insure your child. Many plans provide coverage for children up to their early to mid-20s (the specific age is set by state or plan) if they are full-time college students. In addition to traditional sources of information on financial aid for college students, some kidney organizations offer scholarships and grants to help people of all ages with kidney disease pay tuition and other expenses. For more information, see page 49 in Chapter 6.

Working and being independent are strong values for Americans. Work brings in the money we need to support ourselves and our families, gives us a chance to be with other people, and fosters a more positive outlook on life. People with kidney disease can definitely go back to full- or part-time work, pursue different work, or get their first job. If you receive income from Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), and you're uncertain about the kind of work you'd like to do, contact your local Vocational Rehabilitation (VR) agency. These agencies help people return to a job or retrain for a new one.

If you have had a transplant or are on dialysis, you don't have to stay close to home for the rest of your life. Traveling can lift your spirits and boost your sense of well-being. You will have to do extra planning before you leave, especially if you are on dialysis. Check your health insurance plan to find out if dialysis away from home, called "transient" dialysis, will be paid for. If you receive hemodialysis treatments at a dialysis center (or if you cannot bring your home hemodialysis machine with you), you will need to arrange for dialysis where you will be visiting. With peritoneal dialysis (PD), you have more freedom to travel because you do treatments yourself or with a partner. You'll want to make sure you have the supplies you need on your trip.

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Chapter 7: A Summary of Helpful Programs and Financial Resources

This chapter has summarized the key support programs and financial resources available to people with chronic kidney disease (CKD). Every dialysis and transplant center has a social worker on staff that will be an important part of your health care team. These professionals are highly skilled and knowledgeable about the medical, social, psychological, and financial needs of people with CKD and their families. Talk with your social worker about your financial concerns and ask for his or her help in finding ways to pay your medical costs. To see the full table of programs and resources, click here.

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