Paying for Treatment

This is an excerpt from There is Hope: Learning to Live with HIV, 2nd Edition, written by Janice Ferri, with Richard R. Roose and Jill Schwendeman, a publication of The HIV Coalition (an Illinois-based AIDS organization).

Paying for Treatment

If you're not receiving treatment free through a clinical trial, you will have to determine how you're going to pay for the medications you need. Taken regularly, antiviral drugs and preventive treatments may cost thousands of dollars per year. Expenses can escalate quickly if you become ill.

1) If you have insurance, review your policy to see whether prescription drugs are covered in full or in part. If the medication is given intravenously, and/or if you need nursing or home health assistance to inject it, benefits may be spelled out under the "home care" rather than "prescription drug" section of your policy. (Coverage varies widely from policy to policy. If in doubt, contact your insurance company directly.) Some policies require only a small co-payment for each prescription you fill. Others require you to pay the full amount up front then submit a claim for reimbursement. If tying up cash is a problem, it may be helpful to use credit cards for your purchases. This can give you a "grace period" to get your money back from the insurance company, which you can then use to pay off the charged amount.

Also, when trying a new medication with unknown side effects, it's a good idea to order a small amount initially. If you can't continue taking it, you haven't invested much. If it's effective, your doctor can call in a larger order. Comparison shopping among several pharmacies can save money too.

Keep in mind that most insurance companies will not cover "experimental" (non-FDA approved) treatments. A few plans will cover unapproved treatments if they are considered the "standard of care" or "treatment of choice" for a particular condition by most qualified physicians. Contact your insurer if there's any doubt.

2) If you have Medicaid, or you have met your spend-down for the month, your non-experimental HIV-related drugs will be covered in full when you purchase them at pharmacies that accept Medicaid reimbursement.

3) If you have no insurance coverage for drugs, but your income is too high to qualify for Medicaid, you can apply for help through the Federal AIDS Drug Reimbursement Program, administered in this state by the Illinois Department of Public Health. A number of major medicines are reimbursed in full for individuals who:

• are diagnosed as having HIV or AIDS;
• have low or no income;
• are not eligible for 100% coverage of drugs through another third-party payor (insurance company);
• are not eligible for medical assistance through the Illinois Department of Public Aid Medical Assistance Program on the date drugs are obtained. (Individuals with a financial/medical assistance application pending or those in spend-down unmet status may participate.)

To get into this program you'll need to fill out an application. Forms are available at health department HIV testing sites, public aid offices, and local AIDS service organizations. You can also get more information or an application if you are an Illinois resident by contacting:

Illinois Department of Public Health
AIDS Activity Section
AIDS Drug Reimbursement Program
525 West Jefferson Street
Springfield, IL 62761
217-524-5983

You'll need to enclose copies of your most recent wage stubs or proof of other income or benefits with your application. You'll receive a decision within 30 days from the date your application is received. If it's approved, you must fill all covered prescriptions through Home Pharmacy in Chicago.

Besides this federal program, the pharmaceutical company Bristol-Myers Squibb has announced its intention to provide the antiviral drug ddI free to HIV-infected persons who are ineligible for Medicaid and can demonstrate they have no other means to pay for treatment. Have your doctor contact them for details.

4) If you want to purchase "experimental" drugs without participating in a clinical trial, or wish to locate approved drugs at a discount, there are buyers' clubs operating in several U.S. cities. These "underground" organizations offer domestic and imported prescription and non-prescription drugs for use by individuals under a doctor's care. Your doctor may be opposed to your taking medicines that have not yet received FDA approval. If you're committed to pursuing this kind of treatment, you may have to switch doctors. It is extremely important that you keep your doctor informed about all drugs and medications you are taking, regardless of their source or legal status.