Plaquenil Use in Lupus
Living with lupus means you most likely take the prescription known as Hydroxychloroquine, (hye drox ee KLOR oh kwin) brand name Plaquenil. I refer to
Plaquenil as a "first responder" drug .... it is the go to drug for treating autoimmune disorders like lupus and RA. Plaquenil prevents lupus flares and is a necessity for managing lupus symptoms over a patients lifetime. It's an old drug that was originally intended to treat malaria.
When I was diagnosed with lupus, it was one of the first medications the rheumatologist prescribed. My doctor discussed the potential side effects with me with most of them being quite manageable and tolerable. Additionally, regular eye examinations would be required to monitor toxicity levels and most important .... it was a cheap drug.
In 2001, I could purchase generic Hydroxychloroquine for $10.79 (30 day supply) at the local drug store. At first, I took the generic version, but experienced debilitating side effects over the course of the following 3 - 4 weeks. When I informed my rheumatologist, he recommended I try the brand name, Plaquenil, as it usually will alleviate the symptoms. I immediately switched from the generic form to the brand Plaquenil at $20 (90 day mail order supply) and the side effects disappeared. I've been taking Plaquenil ever since and had no further physical problems or adverse reactions.
Fast Forward to Present Day
In 2016, I was forced to switch health insurance companies when my monthly premiums skyrocketed with Blue Cross Blue Shield to the point of pricing me out of the market. So I switched to another plan (still a PPO) that was more affordable. However, when I attempted to buy Plaquenil through my new federally sponsored health insurance plan (who shall remain nameless to protect the guilty), I was quoted $1,300.00 for a 90 day supply. Thirteen hundred dollars!!! That's insane! My insurance plan said Plaquenil was too expensive, labeled it as a Tier 3 category drug and refused to share any portion of it.
I guess my question is, who decided it was an "expensive drug"? And, what constitutes an "expensive drug"? Plaquenil is not a new drug, nor did it just receive FDA approval .... it's been around for over 50 years!
So, when did the cost of Plaquenil become so beyond my reach that a health insurance company has to label it a "very expensive drug"? As the cost/demand for Plaquenil has steadily risen over the years, the insurance and pharmaceutical companies have offered many explanations: lack of availability, fewer manufacturers, shipping costs, etc. None of them make any sense. My suggestion - perhaps is it because this medication has been targeted as an "arthritis drug" and deemed a source of huge profit margins for the drug companies? And at the expense, literally, of those of us who need it the most and have no other viable options.
Options?
Plaquenil has become so expensive, I can no longer afford to buy it in the U.S. Fortunately, for now I'm able to turn to our friendly neighbors to the north .... Canada. I'm able to order Plaquenil through
Canada Drug Center for approximately $105 (includes shipping) for a 90 day supply. So, what is Canada doing right and the U.S. doing wrong?
We need to advocate for lower drug costs. When did the U.S. pharmaceutical companies become so powerful that they can dictate the cost of our medications? Medications that are necessary for those living with a chronic illness and crucial in order to prevent future joint and organ damage.
Prescription assistance programs utilize the state "poverty line of income" to determine whether or not you receive assistance and generally won't offer assistance if you have a private health plan or on Medicare.
I've attempted on several occasions to have my rheumatologist intervene on my behalf by submitting a PA "
Prior Authorization"; which basically asks, for a co-pay exception due to my allergy to the generic version and to price the drug based on a lower tiered prescription cost. Two different doctors were unable to help me ... one rheumatologist bungled the entire request and when I asked him for assistance in clarifying the request, he stated, "I don't have time and it's not my problem" and "why don't you just stop taking the drug and see what happens?" I was appalled any rheumatologist would advise a patient to quit a course of treatment for a "see what happens" attitude; solely, because he didn't want to help. So who exactly is dictating the treatment of my chronic illness? The doctor? The patient? The pharmaceutical company? My health insurance company? What is a patient supposed to do when the doctor refuses to help?
How does a patient living with a long term illness manage a skyrocketing prescription drug cost? Who do they turn to for help? We need doctors to step up to the plate, speak up and advocate for their patients.
I wish there were easy answers, but as you can see even a seasoned lupus patient gets frustrated and can feel completely helpless and alone in the fight against a chronic disease.
I think I need a cookie .....
