Becoming Your Own Advocate

How to Find New Treatment Choices: Locating Clinical Trials and New Drugs in Development When Standard Treatment Is Not An Option

For patients with cancer, there are three main situations that may lead to a search for new treatments. First, if a standard treatment has not been successful. Second, if the cancer returns after being initially treated successfully. Third, when a person is faced with a diagnosis for which there is no effective standard therapy.

Avenues Becoming Your Own Advocate

Patient Assistance Plans: Pharmaceutical Companies Helping Patients Get Their Medicines

It is a choice no one should have to make: pay rent and buy food or get prescriptions filled. Yet all to often, it is a choice many Americans have to make.

Over 40 million Americans have no health insurance and millions more have limited coverage. Many Americans just can’t afford health care, and if they can, they still don’t have the money to pay for their medicines.

There is help available for many people who can’t afford their medicines. These programs, frequently called patient assistance programs (PAPs), are designed to help those in need obtain their medicines at no cost or very low cost.

Many pharmaceutical companies have PAPs. The manufacturers who have these programs do so for various reasons: Some believe that they have a corporate social obligation to help those who can’t afford their products while others believe PAPs are a good marketing tool. As one PAP director once told me, many people who can’t afford their medicines eventually go on to obtain some type of coverage. And when they get this coverage, the companies want the patient to continue using their products.

In 2002, PAPs helped over 5 million people. The programs filled 14.1 million prescriptions with a total wholesale value of over $2.3 billion.

All PAPs are designed to help those in need obtain their medicines. Since each pharmaceutical company establishes its own rules and guidelines, all are different. All have income guidelines, but these vary considerably. Each company selects which drugs are available on their programs and how long a person can receive assistance.

Although no two programs are exactly the same, most require that the patient complete an application form.The amount of information required varies. Some programs require detailed medical and financial information, others very little. All require a doctor’s signature and some programs require the doctor complete a portion of the application.

Most send the medicines to the doctor’s office for distribution to patients, while others send the medicine to a pharmacy. A few send a certificate that the patient gives directly to their pharmacist. Some patients need drugs for a long time and most, but not all, programs that cover medicines used to treat chronic diseases offer refills.

The pharmaceutical companies decide if they will have a PAP and, if they do, which of their medicines are available through the program and at what dosages. Some include many or all of the medicines they make, while others include only a few. Sometimes different dosages of a certain medication will be available at various times. The reasons for their decisions are not something they make public. None include generic medicines in their programs.

As your doctor or pharmacist may not know about PAPs, the best place for information is the Internet. There are a number of sites that have information on these programs. Many pharmaceutical company websites also have information about their patient assistant programs on their websites, but often this information is buried and difficult to locate.

There are many websites with information on patient assistance programs, including,, and There is no charge to access the information and these sites don’t have a PAP of their own nor do they help individuals apply to get their medicines.

NeedyMeds, a website I co-founded, is self-funded by sales of manuals and other items.The Robert Wood Johnson Foundation supports RxAssist. The Pharmaceutical Research and Manufacturers of America (PhRMA), an association and lobbying group whose members include many of the larger pharmaceutical manufacturers, runs; it only has information on PhRMA members programs.

There are also a number of sites that charge to help people learn about patient assistance programs and complete the application forms. The charges vary as does the quality of the services provided. Some offer a money-back guarantee if they can’t get your medicines.

I will describe how to use the NeedyMeds site as it is the one I know most about. RxAssist and HelpingPatients contain similar information.

There are two ways you can check to see if your medicines are available on a patient assistance program.One is to click on the drug list, which brings up an alphabetical list of all the drugs currently on PAPs. Find the medicine you take and click on its name to bring up the program page. You can also search by drug manufacturer.

On the program page,you will learn about the specifics of the PAP, including the qualification guidelines, the application process, the information you need to supply, and what your doctor must complete. In addition, you will learn if there is a downloadable application on the website or if you must get an application from the company. (Some companies accept copies of their application form while others require you complete an original.)

Once you get the information you need, it is then up to you to complete the applications, get the necessary signatures, and send the form to the program.

The most common problem patients encounter when completing the application forms is the lack of physician cooperation. Patients often complain that their physicians refuse to complete the forms or charge to do it. If you run into this situation, here are a couple of suggestions:

1. Make sure you have completed everything on the form you can. Not only should you complete the applicant’s section, but anything else you can do. This may include the physician’s name, address, and phone number.
2. Bring all the information your doctor may need. For example, some programs require proof of income. If so, attach whatever documents are required.
3. Bring an addressed envelope with the appropriate postage.
4. Don’t expect your doctor to complete the form immediately. A busy doctor may not have time to read the form while you are in the office.
5. If you encounter resistance, tell your doctor that without his or her help, you won’t be able to obtain the medicines you need. Be blunt.
6. If all else fails, you may need to find a physician more sympathetic to your situation and willing to help you.

Many people without a computer can still use the information available on these websites. Nearly everyone knows someone with a computer – a family member, a neighbor, or a friend. Most public libraries have computers for public use and people who can help those not familiar with their use.

Patient assistance programs are not the best solution to the problem of the high cost of medication. However, it is the best solution for some people. Millions of people use PAPs to get the medicines they need but can’t afford. If you can’t afford your medicines, a patient assistance program may be able to help you.

Richard J. Sagall, MD, is a board certified family physician practicing in the Philadelphia area. He co-founded and continues to run the site, where he can be reached via email.

Avenues Becoming Your Own Advocate

How to Tell Your Physician You’re Using Complementary & Alternative Medicine: Why It’s Important For Them to be Informed

In the last Avenues, we wrote about strategies patients can use to improve communication with their doctors. In this article, the third in our Becoming Your Own Advocate series, we discuss the issue of letting your physician know about your use of complementary and alternative medicines, why it’s important for them to be informed, and how to communicate this to them effectively.

Avenues Becoming Your Own Advocate

How to Communicate Effectively with Your Doctor: Working Toward Informed and Shared Decision Making

Treatment results improve when doctors and patients collaborate in medical decision-making. Such was the conclusion of Dr. Jane Harrington, of University College London in a January 2004 meta-analysis.1 Dr. Harrington critically examined 25 papers that studied how improving the quality of doctor-patient communications affected patients’ level of satisfaction with their care and their response to treatment. In each of these studies, patients were provided with sample questions to ask their doctor, informative essays or brochures, or videotaped examples of communication techniques to use as preparation for a doctor’s appointment. In most of these studies, efforts to help patients more effectively communicate with their doctors resulted in increased patient satisfaction, an increase in the amount of questions asked and information received, an increased feeling of control over one’s health, better compliance with treatment recommendations, and better overall health outcomes.With all the emphasis on technology in today’s medicine, it is encouraging to note that quality human interaction can still influence the effectiveness of medical care. In this article, the second in our Becoming Your Own Advocate series, we present suggestions to help enhance preparation for medical consultations and offer some specific questions to ask your doctor. We also include findings from recent research that may help dispel common myths about the clinical encounter and the ways in which doctors and patients truly interact.

Avenues Becoming Your Own Advocate

How to Evaluate a Clinical Study: Guidelines to Help Understand Published Research

Science is a work in progress. Every day, promising studies are released and new treatments are approved. But how can you evaluate whether the information you’re reading is relevant to your own health or to that of a patient, friend, or family member?