Imagine going to the doctor for refill prescription in the New Year, because your insurance has changed yet again! It’s a prescription you know you will need to take the rest of your life to stay alive and yet every year, it seems the whole justification argument starts over again. It’s been a long, hard process to accept that you live with a rare and serious illness; one that few doctors understand. Most people have never heard of your disease, unless they are one of the unlucky few also forced to cope with it.
PHARMACY – RARE DISEASE RARELY GOES SMOOTHLY
So, you take your prescription to the pharmacy where you have always filled this medication. You hand the pharmacy tech your NEW insurance cards and go off to do the rest of your shopping. A few minutes later you hear your name over the loud speaker, with a request to return to the pharmacy ASAP. Your heart sinks, because you know this is never a good sign.
The kind staffer, with a well-rehearsed worried-look informs you that the new insurance is refusing to pay for the prescription. “It is not on their formulary”. Later you learn your insurer considers it “just a super-duper Vitamin” and suggests you purchase it “over the counter”. It’s obvious to you that this decision was made with no awareness of what Hypoparathyroidism is and what treatment it requires.
Kindly, the pharmacy staff informs you can always purchase the medicine for cash, which will be either $125 for a month’s worth or $348 for a 90-day supply. Your jaw drops. Being on full-time disability means more than 10% of your income will go to pay for just ONE medicine!
DOCTOR’S OFFICE – RARELY HAS TIME FOR RARE DISEASE
I leave, with a huge knot in my tummy and no medicine in hand. It’s only January and I can’t imagine how I will survive the year. I call the pharmacy the next day to request the endocrinologist put in for an exception to the insurance company. And the circus begins! I wait a few days, call the pharmacy and ask what the status is. They reply, “Nothing yet. Why don’t you call the doctor’s office and see what they know?” I do, and leave a message. When I finally get a reply from the office three-days later they claim they never got a fax from the pharmacy!
A FAX??? Ug! So, I start over…back to the pharmacy…I’ve lost a week already.
I will have to keep a close eye on this process. This means frustrating calls to the pharmacy with long waits on hold and one, two, maybe three trips to the pharmacy, waiting in line, told its not ready yet, etc.
Eventually doctor’s office submits paperwork to the insurance company’s “prior authorization” department. Now I’m in a near panic, because my meds are almost gone.
INSURANCE – RARE DISEASE? TRY ‘RARELY HELPFUL’
I call the insurance company to give me an update. Here is where the most of my time gets eaten up. Getting through to the pharmacy review team is nearly impossible, and probably on purpose. I am starting to get paranoid. My thoughts drift…this insurance company would rather I died, so they wouldn’t have to deal with me and my expensive, rare disease.
I call the pharmacy again, telling them “I run out of medicine in two days!” Since they know me, they advance me a few pills at a time.
Finally, after a few more days the authorization comes in and the medicine cost comes to $42 a month instead of $125. Still feels like a lot of money especially for a generic drug.
This process – the process of filling a prescription I have been taking for years – from start-to-finish took two weeks. But the anxiety! Feels like it took two years off my life!
TIMES THIS BY 30 MILLION – RARE DISEASE IS NOT RARE
The time. The cost. The stress. I am only one patient, one of 30 million in America living with a rare disease. I’m very active in support communities and talk to patients from all over the country and I know this torture is not an unusual occurrence in the Rare Disease community.
From the Editor: Michele is a retired registered nurse who has been an advocate for rare disease for many years. And she’s right. Every day, all across the country, patients are pushing boulders uphill just trying to get a simple prescription. The hours and hours wasted, the days ticking by not knowing if you are going to run out of your medications. There must be a better way.
One such is to use a drug discount card. They’re not usable if you have government insurance but if you have private insurance (or none) you could end up paying less by using the discount card than what you’d end up paying if you went through your insurance. You can learn more about drug discount cards by visiting our partners at Needymeds.org.
Michele West is a long time Registered Nurse, with a Master’s in Public Health Education & Program Development. 
She worked all areas of nursing before moving into patient and community health education. While working in Public Health she was injured on the job and disabled as a result. Later she experienced thyroid cancer and sustained parathyroid damage due to surgical error, which left her unable to return to even part time work. She now does volunteer patient education & support.