Patience for Patients; Off-Label Drug Use

Wait is a four letter word. Oh geez great opening…so that was definitely not the deepest phrase ever written… I mean the expletive kind of four-letter-word, of course. Being asked to wait for anything can be painful, coffee as it brews in the morning, at stoplights, in traffic, for the elevator, etcetera, etcetera… All of these things are inconvenient and irritating. Livable, but irritating.  
Imagine, if you will, having cancer. You have daily pain, and daily problems from the symptoms of your condition. Then imagine being told that there is a medication that can help to alleviate your pain, and minimize your symptoms. WOOHOO, sign me up! Right? Then they tell you you have to wait for insurance approval before you can have it. “Well…how long can that possibly take?” In this case…2.5 months and counting.
This is something hundreds if not thousands of people are dealing with ever single day. The issue, most often is off-label use of medications. (Off-label use is basically any usage not described on the medications label, as approved by the FDA)
The majority of cancer treatments begin this way, due to the fact that cancer drugs are often found to be effective against multiple types of malignancies. The problem arises when health insurance companies will not cover these off-label uses. They are usually deemed experimental and therefore excluded.
There are ways around these exclusions though, of course. There are appeals procedures thru the insurance companies, or to the drug company directly. There are also federal and state laws on the books that do require some state-regulated health insurance providers to cover the use of off-label drugs for cancer treatments, provided that the use is documented in authoritative drug reference books or in medical literature. The following states have laws on record. Alabama, Arizona, Arkansas, California, Colorado, Connecticut, Florida, Georgia, Hawaii*, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Nebraska, Nevada, new Hampshire, New Jersey, New Mexico#, new york, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Rhode island, South Carolina, South Dakota, Tennessee, Texas, Virginia, Washington# (Source: Association of Community Cancer Centers *Non-legislative agreement with insurance providers #Administrative rule with force of law)
I have stressed repeatedly the need to be an empowered patient, and if there was ever a situation that required a proactive approach, this is it. Do not sit idly by and wait to hear from the doctor’s office. They are busy, they have many patients to handle, and despite their best efforts, there is the chance that you will fall thru the cracks. Do not take no for an answer. Do some research. If your state is on the list, try to find studies that support the use of the medication in question. For MPN Patients, I suggest visiting to find articles supporting the use if PegInterferon(the drug I am waiting for). For other cancer patients I would suggest visiting, or
Being sick is hard enough as it is, and being told to wait makes it even harder. To make the wait more tolerable help yourself in any way you can by being proactive, and resourceful. Together with the perseverance of your doctor’s office and staff you will get the care you need.
Information for this entry was gathered at

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom. ~ Anais Nin


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