By Laurie Shore, MSW, LCSW

The words hope, excitement and worry often describe the feelings end-stage renal disease (ESRD) patients have when preparing for a kidney transplant. Before transplant surgery takes place, you must have a medical and psychosocial evaluation, which is a detailed and lengthy process. Then, if approved by the transplant team, you are placed on the kidney transplant waiting list with more than 63,000 people nationwide (UNOS 2005). But then your day arrives – you receive your transplant – beginning your journey as a transplant recipient. While this special gift of life can provide you with wonderful benefits, you need to be prepared for possible barriers along the way.

One of the most troublesome obstacles is related to insurance coverage for your transplant medications. Your physician may prescribe multiple medications, including those that suppress your immune system, fight infection, protect your digestive system, and supplement your nutrition. It is extremely important to take your medications exactly as prescribed by your physician. These medications are often expensive, but your insurance usually covers some or all of the costs. But what if your insurance does not cover these costs? What if you cannot afford the medications? Although we cannot predict every life-changing event, it is important to explore possibilities and prepare for those events that may alter your ability to maintain adequate insurance coverage.

Joe received a kidney transplant from a deceased donor. At the time of his transplant, he was working as a teacher on a contractual basis and had insurance through the county school system. His teaching contract ended four years after he received his transplant. Unfortunately, the school system did not rehire Joe because he missed too many days of work. Joe was offered COBRA insurance but could not afford the premium and allowed his health insurance to lapse. Additionally, since Joe had his transplant for longer than three years, he was no longer eligible for Medicare. Joe started to seek employment that would provide him with insurance benefits, but he was in immediate need of assistance to cover the cost of his medications. Joe was worried that his transplant would fail if he did not take his medications properly.

Joe’s story is just one example of insurance problems that may arise after you receive your transplant. Insurance difficulties may result in a great deal of emotional distress and anxiety. In order to alleviate some of these concerns, you must take action. If you find yourself without insurance or medications, you may want to consider the following suggestions.

Who Can I Call?

You need to determine who is best suited to help you address your problem. Perhaps it is your current nephrologist or your primary care physician. Once transplanted and medically stable, you are generally referred back to your regular nephrologist. You may want to contact your transplant center and speak with the social worker or a financial counselor. Keep in mind that not all transplant centers have a social worker available after you receive your transplant.

Medications

Depending on whether you are out of medications or just running low will determine the urgency of your need. If you are completely out of your medications, there may not be an immediate solution. It is very important to address your medication concerns right away.

• You may need to contact your family and friends to request financial assistance.

• Another short-term solution might be to contact your nephrologist or primary care physician to request medication samples. Samples are not always available and should not be solely relied upon. If you are no longer being followed by the transplant center, they will be unable to provide you with samples or prescriptions without first examining you as a patient.

• Your transplant center may offer a grant program that provides emergency financial assistance for medications. These programs vary and are not offered at every transplant center.

Primary Insurance

In order to explore your options for health insurance, it is very important to address the specifics of your previous coverage. If your spouse or children are working, you may be able to enroll on their insurance plan. As long as you have not had any lapse in coverage, you will not be held accountable for a preexisting condition.

Returning to Work

Medicare related to ESRD provides coverage for a maximum of three years after you receive a transplant. At the end of three years, if you are under the age of 65 and are not disabled for any reason other than kidney disease, you are expected to have employment with health insurance benefits. If you have difficulty finding employment, you may consider enrolling with a Vocational Rehabilitation Program. These programs provide assistance with job training and placement. The Ticket to Work Program is another alternative offered through Social Security. This program offers assistance in obtaining needed services to return to work. For the Ticket to Work Program Web, click here.

Secondary Insurance

For people with Medicare over the age of 65 or disabled for a reason other than kidney disease, you may need to secure a secondary insurance for financial stability. Without secondary coverage, you will be responsible for 20 percent of the immunosuppressant medications and 100 percent for the remainder of your medications. You may consider purchasing a Medicare supplement; however, you should be aware that many supplemental policies only cover 20 percent of immunosuppressant medications and do not include any additional medication coverage.

Medicaid

Medicaid is a federal and state funded program you might qualify for if you meet the financial guidelines. There are various programs offered through Medicaid that would cover the cost of your medications. For more information on these programs, contact your local Department of Children and Families office. Additional information can be found by clicking here.

Indigent Drug Programs

Medications at reduced or no cost are sometimes available through indigent drug programs if you meet the criteria. Information from both you and your physician will be requested, and you will be asked to disclose financial information to determine if you meet their financial restrictions. Some programs also require a proof of denial from the Medicaid program.

Several drug companies allow you, the patient, to make the initial inquiry regarding the medication program instead of the physician’s office. It is vital that you begin this process immediately due to the lengthy application process. Application forms may be available online or can be sent to you via mail. There are also services that can assist you in determining if the pharmaceutical company offers a drug assistance program:

• Pharmaceutical Research and Manufacturers of America (PhRMA) provides specific pharmaceutical company information. They are available at (202) 835-3410 or click here.

• National Organization for Rare Disorders (NORD) assists patients with obtaining medications. Contact them at (800) 999-6673 or click here.

• Click here for another Web site that provides information about pharmaceutical companies and their drug assistance programs.

Community Healthcare Clinics

County Health Departments or Community Healthcare Clinics are available in most states. These centers offer medical services on a sliding scale or for free. They may also offer assistance with indigent drug programs. Income qualifications will be required prior to utilizing this service.

Other Opportunities

• The National Kidney Foundation and the American Kidney Fund (AKF) offer medication grant programs as a last resort. AKF only provides assistance up to five years after your transplant. Although you may financially qualify, assistance will be awarded to those patients with the most need. Again, remember these applications are lengthy and take a considerable amount of time. The form may also require a social worker and physician signature.

• Fundraising for medication expenses is another option to explore. The National Transplant Assistance Fund (click here) is an organization that provides guidance through the process of raising funds.

Joe did not contact the transplant center until his insurance coverage had lapsed. Fortunately, he had not used all of his medications. This allowed him enough time to enroll in the available indigent drug programs. These programs provided Joe with the medications he needed until he was able to secure insurance through his new employer. Joe is now working as a teacher in another county, and he is hoping to become a permanent employee in the school system.

Conclusion

Financial hardships resulting in the inability to acquire medications can be very overwhelming and may cause feelings of frustration, helplessness and despair. Missing medication or decreasing your medication dosages can be harmful and may result in the loss of your kidney. The best way to avoid problems is by taking an active role in your care.

• Do not wait until you are completely out of medications before taking action.

• Become informed on the terms of your health insurance policy.

• Be aware of your insurance options.

• Be sure to ask questions.

• Contact your physician or transplant center immediately if a problem should arise.

A kidney is a precious gift that should not be taken for granted. Be proactive in your care by being your own advocate and planning ahead for bumps in the road, including insurance coverage. Doing so will help you increase the longevity of your kidney and allow you to live a dialysis-free life.

Laurie Shore, MSW, LCSW, is a pre-transplant social worker for LifeLink HealthCare Institute in Tampa, Fla. She is president of the AAKP Tampa Bay Chapter and has served on its Board for six years. She also serves on the Patient Advisory Committee for FMQAI: The Florida ESRD Network (Network 7).

This article originally appeared in the July 2005 issue of aakpRENALIFE, Vol. 21, No. 1.

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