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Patient Assistance Programs: Getting Free Drug from the Drug Makers

Fall 2004

The ever-escalating costs of many prescription medications have created barriers to accessing necessary treatment for people who are uninsured, underinsured, and/or have a low income. The somewhat negative term often used to refer to folks in this category is "medically indigent." More Americans are falling into this category each year, with 15.6 percent of the U.S. population (45 million people) uninsured as of 2003 according to the U.S. Census Bureau. It can be argued that the pricing practices of the pharmaceutical industry have helped to create this situation. But industry has also created a response to the problem by creating Patient Assistance Programs (PAPs).

What are Patient Assistance Programs?

Patient Assistance Program are drug company plans that provide free medications to low-income, uninsured, and underinsured people who need them.

What's the history of these programs?

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It isn't clear precisely how or when these programs started, but with the approval of more expensive treatments for such serious and chronic illnesses as cancer, viral hepatitis, and HIV over the past twenty-five years, these programs have grown as well. According to the Pharmaceutical Research and Manufacturers of America (PhRMA), the primary representative and lobbying organization for the pharmaceutical industry, 6.3 million Americans were served by PAPs in 2003. No one can really say how much money in "donated" medications was actually spent on these patients. Each drug company puts out its own public relations figures to demonstrate the extent of its philanthropy through these programs. These figures are often calculated using the inflated retail cost of the drug, a figure that no one really pays and is certainly far higher than the actual cost to the company of manufacturing and distributing the drug.

Who is eligible to participate in PAPs?

Each program is somewhat different, so always contact the PAP directly for its specific eligibility criteria. The following are general guidelines for most programs:

  • You must be a U.S. citizen or legal resident.

  • You must have a doctor or other healthcare provider who can write prescriptions and treat you.

  • You can't have any health insurance that provides prescription coverage.

  • You can't be eligible for Medicaid, Medi-Cal (in California), ADAP (AIDS Drug Assistance Program), or any other drug assistance program.

  • You must meet the annual income limits of the specific program.

How do I prepare for application to a PAP?

You don't have to do this alone. It's hard enough having a serious or chronic illness. It can be helpful to have a social worker, benefits counselor, healthcare professional, friend, or loved one help you with the application process. Before you call the PAP, have as much information at hand as possible. This will help speed up the process and your peace of mind. Below is a helpful checklist. The more of this information you have prepared, the better.

  • Know the name of the prescription drug you need.

  • Know the name of the company that manufactures the drug. This information will help you locate the specific patient assistance program you need.

  • Have general information on hand, such as your name, social security number, address, state of residence, and citizenship/residence status.

  • Be prepared with contact information for your doctor or other healthcare provider (the phone and fax number will help a lot).

  • Have a copy of your Medicaid, Medi-Cal, or other insurance/drug coverage denial letter.

  • If you're on an ADAP waiting list or your state ADAP doesn't cover the drug you need, have a letter or other documentation from the program explaining the situation.

  • Be prepared to provide your estimated gross annual household income (copies of pay stubs, tax returns, etc.).

  • Have proof (such as award letters) of any government income assistance: Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), or State Disability Income (SDI).

  • Have proof of medical expenses that you have had to pay yourself, such as bills or receipts.

Are Patient Assistance Programs the same in every state?

In general, the rules are the same across the country. But if a drug is covered by another program in your state for which you are eligible, then the PAP will not cover that drug for you. The PAP rules are generally designed and adjusted to be the last resort for access to the medication.

Can immigrants (legal/illegal/undocumented) qualify for PAPs?

In practice, drug companies don't want to act as immigration police and usually don't check into these situations beyond what is stated on the form by the applicant. If you have a social security number, currently live in the U.S., and qualify in all other ways, you will usually be approved.

Do I need a healthcare provider before I contact a PAP?

Yes, you need a doctor or other healthcare provider who can legally write prescriptions. The application form almost always has to be sent or faxed to your healthcare provider to complete. Quite often, the PAP requires a healthcare provider to apply on your behalf. If your primary provider is a registered nurse (RN), nurse practitioner (NP), or physician assistant (PA), don't worry. They almost always work closely with a physician who can sign the forms if the PAP requires it.

Are there any medical eligibility requirements for PAPs?

Depending on the program, you might need to have a specific diagnosis relevant to the needed medication, verified in writing by your healthcare provider.

What if I have private insurance prescription coverage but it still leaves me with a big co-payment?

If you have health insurance that covers the drug, but leaves you with a large co-payment, you will not be eligible for the PAP. By federal law, patient assistance programs cannot cover co-payments.

What if I have private insurance with prescription coverage, but it only covers my medicine for a limited time?

If you have insurance that denies coverage of the drug or only covers it for a limited amount of time, then a PAP will usually work to help you.

Can I qualify for a PAP while I am eligible for Medicaid and/or Medicare?

As of this writing in 2004, no one yet has real prescription drug benefits through Medicare. Medicare prescription discount cards don't count as actual prescription coverage, so you will still be eligible for a PAP if Medicare is your only insurance. On the other hand, if you have Medicaid (Medi-Cal in California) that includes prescription drug coverage for that drug, you will not be eligible for the PAP.

What if I am on a waiting list for ADAP (AIDS Drug Assistance Program)?

If you are on a waiting list for one or more HIV-related drugs covered by your state ADAP, the PAPs for those drugs will usually provide medication to you until your ADAP benefits begin. Unless all of your HIV medications happen to be made by the same company, you'll have to apply to the PAP specific for each drug you need.

May I use the PAP from one drug company to get my medication from a different company?

No. You can only get the medication you need from the PAP run by the manufacturer of each specific drug.

What is the general procedure to enroll in a PAP?

Most PAPs have a toll free phone number that you call to make the initial contact. Most of the people who answer the phones for these programs are more pleasant, sensitive, and better trained than in the past. When you contact them, most drug company PAPs have an application for you to complete in writing or over the phone to get general information from you including income and medical benefits. As stated earlier, the application form almost always has to be sent or faxed to your primary healthcare provider to complete.

Do I need to have a certain income level to qualify? Does what I have in the bank and/or assets such as a house or car affect my eligibility for PAPs?

Most PAPs no longer have restrictive asset limitations. Owning a home or a car, your bank account assets, and the like no longer disqualify you.

Most PAPs go purely by current income level. The Federal Poverty Guideline annual income level for an individual in the lower 48 states in 2004 is $9,310. Rates vary but, realistically, most PAPs use between 200% and 350% of the poverty level (between $18,600 and $33,500) for current income eligibility. This may vary by region of the country and other circumstances, including the number of people in your household. (For a complete Federal Poverty Guideline Chart, including those for Alaska and Hawaii, go to: http://aspe.hhs.gov/poverty/04poverty.shtml.)

Drug companies are reluctant to give out exact income guidelines, presumably fearing that people may cheat to try to meet them. When pushed, some companies will state a specific percentage of the poverty guidelines. Practice has actually shown that most of the programs are quite flexible in terms of proof of individual circumstance, even if you're slightly over their limits. But be prepared to justify your current financial situation, including proof of medical expenses. PAPs aren't going to bail you out of credit card debt that is non-medical.

What happens if I work while receiving medication from a PAP?

Most PAPs are primarily concerned with your insurance status, and then with your income. As long as you have no insurance that covers the drug and your income is within the PAP's guidelines -- regardless of the source -- the fact that you are working shouldn't affect your eligibility.

How soon after applying will I be eligible for benefits from a PAP?

Each program is different. For every story of swift service of only a few days, there is a horror story of waiting several months to receive the needed medication. On average, it usually takes two to four weeks. Submitting all of your required information as quickly as possible and following up with your healthcare provider to make sure that their portions of the application have been completed will help speed up the process. So advocate courteously for yourself and keep after your provider if necessary. Your healthcare team wants you to have your medications, too!

How do I stay enrolled/eligible in a PAP? How do I reapply?

Each program has somewhat different requirements that you must follow. Some require you to reapply each time you need a new prescription, but many require that you only reapply every three months, six months, or annually with a recheck of your income and other eligibility requirements. Be sure that you understand the provisions of the specific program.

So tell me how to contact these Patient Assistance Programs already!

Finding out how to contact a PAP has often been the hardest part about them! These companies are in business to sell drugs, not give them away, so there is very little printed information available about these programs. There is often little on the actual drug companies' Web sites either. Because of the amount of paperwork and follow-through required by the healthcare providers, they sometimes don't keep on top of everything.

Some companies consolidate their various drug products into one PAP. Others have different programs for each drug or each set of drugs for a specific disease. Some programs have catchy names (such as Boehringer Ingelheim Cares Foundation, GlaxoSmithKline's Bridges to Access Program, and Schering-Plough's Commitment to Care Program), slightly different requirements, and their own application form. It can be very confusing and, frankly, is often geared to make things difficult rather than easy.

Use the Internet resources listed below for the contact information for most Patient Assistance Programs that provide HIV-related medications. If you apply, don't get discouraged. Follow the steps suggested above, courteously ask for help, and follow-up with your healthcare provider and the PAP throughout the process. Hopefully, you can get the medication you need!

Brian D. Klein M.A., L.M.S.W. is a former medical social worker and a founder of the Hepatitis C Action & Advocacy Coalition (HAAC). He is an advocate for people living with hepatitis C (HCV) and those co-infected with HIV and HCV.


Patient Assistance Programs Useful Internet Resources

The Access Project of AIDS Treatment Data Network
www.atdn.org/access/pa.html
This organization, which helps people with HIV access treatment, has a Web page dedicated to up-to-date information on Patient Assistance Programs, particularly for drugs used to treat HIV, hepatitis C, hepatitis B, and opportunistic infections related to HIV. Scroll down the page and click on the name of the drug you need, and you will be linked to a page with the corresponding company name, contact information and general eligibility requirements for that company's Patient Assistance Program.

PhRMA (Pharmaceutical Research and Manufacturers of America)
www.helpingpatients.org/Intro.php
If a drug you need isn't listed on The Access Project, here's another source to try. Surprising as it may seem, this lobbying organization for the drug industry has easy-to-use, up-to-date contact information for all of the different Patient Assistance Programs offered by its members. The best way to use the site is to know the name of the drug you need and the name of the company that manufactures it.

ACRIA
www.acria.org
As an online addition to this issue of ACRIA Update, our Web site includes a list of the PAP contact information for the most commonly used medications for HIV, hepatitis C, hepatitis B, and AIDS-related opportunistic infections (click here).


Warning

There are a few sites on the Internet that offer to help you apply to any drug company Patient Assistance Program you need. Some of them charge a small fee that may or may not be refunded to you. Some of these sites are run by perfectly reputable folks, but others aren't. It's probably best to skip them all together. They usually create extra steps for you. They can only use the exact criteria that the drug companies provide. You will be far better off applying directly to the PAP yourself so that you can explain your individual situation as necessary.




  
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This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.
 
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