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Ways to Pay For Treatment

May 1997

One of your first worries may be that you might lose (or be unable to buy) health insurance because you're HIV-positive. New York State offers a lot of ways to get care, and a number of protections if you have or want to buy health insurance of your own. This chapter supplies a brief overview to familiarize you with the programs available. It will also give you ways to get more information about each. Knowing your options can help you choose the best strategy.

Many people have health coverage as a benefit of being employed. However, a sizable number of people don't have coverage through work or aren't working right now. We will start with employer-provided health insurance. Then we'll move on to options you can use if you have no coverage.

Health Insurance

If you have coverage through your job, the first thing to do is to read the policy booklet that you received when you started work (and take notes). If you've lost it, go to your personnel department and ask for a replacement. They won't be surprised or suspicious; people lose them all the time. There are lots of things to check out in your policy. Three important things to check are:

Prescription Drug Coverage: HIV-positive people can use all the prescription coverage they can get. If you have a choice between two policies, take the one with better drug coverage. The limited drug coverage offered through health maintenance organizations (HMOs) can make them a less attractive choice.

Home Health Care: Home health care coverage pays to have various healthcare professionals come to your home, usually after a hospitalization. You may need a nurse, nurse's aide, home health aide, or homemaker help (they shop, cook, and clean for you). If you ever have to be hospitalized and you have good home health coverage, you may get out of the hospital quicker, which means you may be back on your feet faster.

Whether your company is "self-insured": Over 90% of the companies who employ more than a 1,000 people are "self-insured," and an increasing number of smaller employers are moving to this form of coverage. This means that they don't actually have a contract with an insurance company to provide coverage for their employees. Rather, they took the money they would have paid for premiums and opened a bank account. All their employees' health claims are paid out of this account. Most self-insured employers "hire" other firms to handle their claims paperwork. This can be confusing because most of the firms administering these bank accounts for the self-insured employers are standard health insurance firms, like Prudential, Guardian, or Equitable. Many use the same claims forms for the self-insured businesses as they do for their regular health insurance customers.

The reason that companies like to self-insure is that it exempts them from state insurance regulations. This means that they can choose to exclude coverage for certain disorders if they want to (many of them limit or exclude coverage for HIV-related problems) or change your coverage with very little notice. If your employer self-insures, it's important to know that you may have less coverage security than someone with a regular health insurance policy. If your employer has significant restrictions on HIV-related care, you may want to think about buying your own coverage or getting another job. You can get coverage of some HIV-related care through the ADAP program (see below). The Equal Employment Opportunity Commission (EEOC) has recently ruled against a union that limited payment for AIDS-related illness to $5,000, and there are several similar cases pending. However, it is unlikely that all self-insured companies will suddenly change their policies.

In 1992, the New York State Legislature made it illegal (when selling health insurance) to discriminate on the basis of health status, age, sex, or occupation. This law applies only to individuals or small businesses of under 50 employees. What this means is that if an insurance company offers individual (or family) coverage directly for sale, they 1) cannot turn you away because you are HIV-positive, and 2) have to sell you the coverage at the same price as they would to someone who is HIV-negative. If you would like to know which companies offer coverage that individuals can buy, contact the New York State Department of Insurance at (212) 602-0203. In order to get more information about health insurance, we recommend that you go to insurance workshops offered by HIV service organizations. They are aimed at people who know little or nothing about insurance, and can answer most questions.

Pre-Existing Conditions and Portability

Some people with HIV are scared they now have a "pre-existing condition" and that they will have difficulty changing health insurance or jobs. In New York State this is no longer true.

First, each insurance company defines "pre-existing conditions" differently -- some consider HIV pre-existing, while others only consider an aids diagnosis pre-existing. Even if your health insurance company does consider whatever you have a pre-existing condition, the new law has some provisions that may keep you from having to worry about this.

Second, a pre-existing condition waiting period does not mean that you are uninsurable but that there may be a period of time when the insurance company will not pay for any care related to your condition (in this case, HIV infection) for a set period of time. Under the new law, the maximum length of a pre-existing condition waiting period is 12 months, and during this time you will have full coverage for anything not HIV-related.

Depending on your circumstances, you may not have to even worry about a pre-existing condition waiting period. Under the new law, when you switch jobs (or leave work and buy an individual policy), you will get credit for the amount of time you were covered on your previous job. This will be deducted from your pre-existing condition waiting period on your new job or policy.

If the amount of time you were covered on the first job exceeds the length of your pre-existing condition waiting period, you will have full coverage from the first day of employment. For example, if you worked for Job A for 7 months and then leave for Job B, which has a 6-month pre-existing condition waiting period, you won't have to wait at all!

This only applies when the types of coverage at both jobs are the same, i.e., both are HMOs, or both are regular "major" medical health insurance plans (like Empire Blue Cross and Blue Shield).


If you leave work, you have the right to keep your health insurance coverage. You will have to tell your employer that you want to do this within 60 days after leaving work, and you will have to pay 102% of the premium each month (the added 2% covers the cost of their paperwork). In the eyes of the health insurance company it is the same as if you were still an employee, and you have the same coverage as when you were employed. It is a good idea to do this if you are not going immediately to another job with health coverage because the policy you get from your job is of higher quality than a policy that you could buy as an individual. Doing this is called "taking your COBRA option."

You can do this for varying amounts of time, based on why you left work. If you simply left (even if you were fired), you can take your COBRA coverage for 18 months. If you were disabled when you left work, you can take your COBRA coverage for 29 months (which is when you will qualify for Medicare). If you were covered under a family plan and the person who was the insured employee has divorced you or died, you can take COBRA coverage for 36 months.

AIDS Health Insurance Program (AHIP)

If you have health insurance and are HIV-positive but your income is low or declining, you should know about the AIDS Health Insurance Program (AHIP). Under AHIP, New York State will pay for your health insurance premiums if you have an annual income less than $14,604 (for a single person), are HIV-positive, and already have a health insurance policy. If you have family coverage, you can have a higher income and still qualify. This is a great benefit because they only consider your income, not your savings or assets. However, AHIP will not buy you a health insurance policy - you must have it when you apply. This program is designed to help people who may be able to work only part-time and who are having periods when they can't work. If someone has health insurance when their income declines to the point of qualifying for Medicaid, Medicaid will pay their premiums. New York State saves money, because it is cheaper to provide care to someone with insurance than someone who has only Medicaid. Medicaid will only do this if you have insurance when your income gets low enough to be Medicaid-eligible. Few people will be able to hang on to their coverage as their income steadily declines. New York State designed the AHIP program to bridge that gap and help more people make it to Medicaid with their health insurance, thus saving the state money.

AIDS Drug Assistance Program

If you earn less than $44,000 a year (more for families), New York State has a trio of programs for you. You don't have to be a legal resident of the United States to qualify. They are: 1) ADAP, which pays for a large number of prescription drugs (including protease inhibitors, drugs for HIV infection and psychiatric medications) and an ever-growing list of nutritional supplements and vitamins; 2) ADAP Plus, which pays for clinic visits, lab tests, nutritional counseling, and limited mental health care on an out-patient basis (as long as you aren't in the hospital); and 3) the ADAP Home Health Care Program, which provides a limited amount of home health care (up to $25,000 per person), including homemaking services (shopping, cleaning, and cooking).

There are two limitations to ADAP coverage. For decades, New York State hospitals that provide emergency hospital care for uninsured people have been paidthrough "Emergency Medicaid." If you have no health insurance and have to be hospitalized, the cost of the hospitalization will be so great that you will qualify for Medicaid (a joint state/federal program to pay for medical care for the poor). The first limitation is that the ADAP program simply does not have enough money to cover hospitalization or emergency room visits in addition to all the other services it provides. Therefore, the hospital cannot bill the ADAP program for your care. Instead, they will bill New York State, and the forms they will fill out are called "Emergency Medicaid." Second, ADAP payments for clinic and doctor visits are restricted to their list of accepted providers (mostly clinics, though a few doctors have started to accept ADAP). However, if your other alternatives are to pay cash for your treatment, these programs can be lifesavers.


If you are disabled and unable to work, you may be eligible for Medicare (not to be confused with Medicaid; see below). Medicare has no income limits, so the amount of your income or savings will not disqualify you. To receive Medicare, you must first qualify for the Social Security Disability program (SSD), and have been on SSD for 24 months. To qualify for SSD, you must be physically disabled accourding to the Social Security Administration, and have paid several years of FICA taxes from your paycheck (the number of years varies by your age). If you are disabled, but don't have a significant work history, you may qualify for Social Security Income (SSI), but you will only receive Medicare when you reach age sixty-five.

Medicare, which is entirely a federal program, has two parts: Part A (which you get automatically) pays hospitals for treating you. Part B pays your doctor a set fee (more than Medicaid) to see you. When you are about to qualify for Medicare (in your 28th month of disability), you will get a letter asking if you want to have Part B and telling you that it will cost $43.17/month, which will automatically be deducted from your SSI or SSD check. This may seem like a lot of money, but it is worth it. The advantage is that you will have a larger choice of doctors.

Enhanced Medicaid

Medicaid is a joint federal/state program to pay for medical care for individuals with low incomes. It is much more comprehensive than either ADAP or Medicare. If you have a monthly income less than $575 as a single person, you probably qualify for Medicaid. If you are on Supplemental Security Income (SSI) or Temporary AID to Needy Families (TANF), you will automatically receive Medicaid. There are many changes being made in Medicaid due to welfare reform, so it's important to track developments in this area during the next few months. Some people with Social Security Disability (SSD) may also qualify for Medicaid. If you already have health insurance when you qualify for Medicaid, Medicaid will pay the premiums. You can also apply for Medicaid even if you don't receive any of the above programs. However, Medicaid's application process (or applying for most of the programs just mentioned) can be difficult to do on your own. It is very helpful to go to an HIV service organization for case management services. A good case manager can also figure out what other programs you may qualify for and advocate on your behalf with all the various bureaucracies.

In New York State, doctors who see people with HIV get a higher fee from Medicaid. It may be useful to mention this if you are shopping for doctors and the doctor's office indicates that Medicaid is a factor in whether or not they will take you. Another option is to get your care through a clinic or community health center (see below).

Medicaid Co-Payments

The New York State Legislature, in an attempt to lower the amount of money that the state was paying for Medicaid, decided that people on Medicaid should have to pay part of the cost of their care. "Co-payments" are small amounts of cash that you may be asked to pay for various things. There is a price list, from $1 for an x-ray to $25 to go to the hospital. Medicaid advocates fought co-payments in court, and the court decided that Medicaid could charge them BUT recipients did not have to pay them, and they could not be refused services. If you are asked for a co-payment you cannot afford, you can simply say "I can't afford to pay the co-payment." You are still legally entitled to the services, and the doctor, pharmacist, or other provider cannot harass you for non-payment.

Medicaid Utilization Thresholds (MUTS)

In another attempt to lower the cost of Medicaid to the state, lawmakers in Albany limited the total type and number of services a Medicaid recipient can get in a year. If you go to the doctor or hospital more than you are supposed to or have too many prescriptions, one day they will tell you that your services have been used up or that you have reached your MUTS limit. HIV-positive people and people with AIDS are exempt from these limits. The doctor or pharmacist should have the forms to file a "MUTS override" for you, which will give you unlimited services. Demand that they do this.

Community Health Clinics

If you have any of the above forms of payment, some of the best places for you to find quality care are community health clinics. They generally accept Medicaid, most insurance plans, and offer sliding-scale fees for those with no coverage. There are several that offer high-quality HIV care.

Infectious Disease Clinics (IDCs) within Designated AIDS Center hospitals may also be an avenue to high-quality care. Designated AIDS Centers are hospitals that have chosen to fulfill additional New York State requirements and provide a full range of state-of-the-art aids care. If you get your care through hospital-based clinics, you may have difficulty seeing the same doctor from visit to visit. You can still get high-quality care, but it will be important for you to know how to advocate for yourself.

You must be much more assertive and ask lots of questions about tests, medications, or procedures that are recommended. Remember that while clinic staff may be very rushed and have a limited amount of time to spend with you, they want you to understand your treatment.

No matter what your health history is or was, now is the time to start paying close attention to health care. Check out one or more of the programs listed above as a way to pay for your care. If you don't have health insurance, explore the various entitlement programs available. It is vitally important that you understand what you are entitled to and that you get the highest quality care you can find.

You Are Eligible For The AIDS Drug Assistance Program (ADAP) If You:
  • Are a New York State resident (you don't have to be a legal resident of the U.S.)
  • Are HIV-positive
  • Have an income less than $44,000 for a single person (more for families)
  • Have assets less than $25,000
  • Are insured or uninsured (you don't have to be uninsured to use ADAP)

You Are Eligible For The AIDS Health Insurance Program (AHIP) If You:
  • Have an income of less than $13,000 (more for families)
  • Have health insurance coverage
  • Are a legal resident of the United States
  • Are a New York State resident
  • Are HIV-positive
ADAP Covers:
  • Over 150 AIDS-related medications
  • Pain medications
  • Psychiatric medications
  • Nutritional supplements (after seeing participating nutritionist)
  • Out-patient visits at clinics and some doctors' offices
  • Lab tests
  • A limited number of mental health visits a year
  • Home health care
ADAP Does Not Cover:
  • Hospital stays
  • Emergency room visits
You Are Eligible For Medicare If You Are Either:
  • Over 65 or:
  • Have been disabled and unable to work for 29 months
You Are Eligible For Medicaid If You Have Both:
  • An income less than $575 per month (more for families)
  • Less than $2,000 in savings or assets

Karin Timour is a freelance writer, trainer, and consultant. The former Director of Education at Body Positive, she is now Director of the Empire Blue Cross Conversion Project at New Yorkers for Accessible Health Coverage.

This article is reprinted from Positive Options: A Handbook for People Living With HIV, published by Body Positive, Inc. It contains comprehensive and helpful information for people who are HIV-positive. To find out how to order the book, please call the Body Positive helpline at (800) 566-6599.

Back to the May 97 Issue of Body Positive Magazine.

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This article was provided by Body Positive. It is a part of the publication Body Positive.