The first two phone calls I received Monday morning were from elderly gentleman who had been taking, with great success, Elmiron for their IC. The problem for each was that they had reached the “Medicare Donut Hole” and had just been told that they would have to pay more than $900 per month for their medication. Outraged by the cost, they each said that they couldn’t afford it and were looking for options. This is the tragic reality that many patients face if insurance doesn’t cover the only approved oral medication for IC. We hope that Jannsen Pharmaceuticals, Inc. (makers of Elmiron®) will hear our plea for a more affordable medication but the sad reality is that pharmaceuticals are a for profit business and they get to pick their price point. So, what’s a patient to do? Here are some ideas that might help.
#1 – Embrace Self-Help Strategies.
A. Diet – It happens severe times of year. A patient will call and say “I’ve tried everything and nothing worked.” Most have sincerely tried everything, investing thousands of dollars in their medical care. Yet, in many of those cases, those patients were still drinking large amounts of coffee which, I believe, reduced the chances of any therapy working effectively. No treatment can counteract the irritation created by drinking coffee or soda every day. That acid wash is just too powerful. So, first and foremost, give your bladder a chance to recover by eliminating those foods that we know cause irritation (i.e. coffees, sodas, green teas, black tea, citrus, cranberry, etc.)
B. Muscle Relaxation – What could be easier than spending 30 minutes at home doing simple stretches. It costs NOTHING yet can dramatically improve pain and symptoms caused by tight pelvic floor muscles. Books, such as Heal Pelvic Pain, contain exercises that thousands of patients do at home to keep their muscles relaxed.
#2 – Ask About The Cost(s) of Therapy Before They Are Prescribed
If you have a limited budget, you must be honest with your physicians and explain your limitations with no shame attached. Whether you’re retired and on Medicare or paying off student loans, you must remind your physician that your wallet is thin. The challenge, unfortunately, is that many doctors are simply disconnected from the actual costs of medication and/or if your insurance will cover that medication or treatment. If they don’t know, ask the doctors billing office and, if available, your insurance company.
#3 – Verify Insurance Pre-Approval IN WRITING for Anything over $200
If you agree to have a diagnostic test or a more expensive treatment (i.e. bladder instillations, hydrodistention or neuromodulation), don’t just ask if it’s covered. Get it in writing FIRST. This was a lesson learned by an IC’er who, earlier this year, received a bill for $64,000 for an Interstim® device AFTER she was told by her doctors billing office, the hospital billing office and her insurance company that the treatment was covered. Turns out they had all made a mistake and she’s stuck with a bill that she can’t pay. Always get pre approvals IN WRITING for expensive procedures.
#4 – Consider Generics
While there is no generic yet available for Elmiron, there are for most other therapies and this is an excellent way to save $$ provided, of course, that you can tolerate the medication well. The challenge with some generics is that they use different fillers and ingredients that some patients might be sensitive to. Case in point is generic hydroxyzine which is more poorly tolerated than the brand name Vistaril.
Special note – A generic form of pentosan polysulfate (aka Elmiron®) has been made in India, under the brand name “Comfora®.” They are still going through the FDA approval process and it is not expected to be available in the USA for another two years or so.
#5 – Shop Around
Even if you have one favorite pharmacy that you use, it’s still important to contact other pharmacies for their prices, particularly for the more expensive medications such as Elmiron. Pharmacies in the same town may have dramatically different prices. If you find a lower price somewhere else, ask your pharmacist if his store will match that price.
#6 – For First time Prescriptions – Ask For A Partial Prescription
What could be more frustrating than spending $100 on a medication that, after you try one or two pills, you realize that can’t take due to its side effects. To avoid losing money, ask your pharmacist (and/or doctor) if he’ll give you a partial prescription first.
#7 – Consider A Compounded Product
You might be surprised to learn that many brand name creams and other medications are far more expensive than a simpler compounded version of the same drug. A good example is Premarin, a mass market estrogen cream that can cost twice as much as the same medication when made by a local compounding pharmacy. The good news is that compounded creams often use fewer preservatives and other irritants making it much more tolerable for patients with sensitive skin.
#8 – Drug Assistance Programs
If you have a very low income, you may eligible for company sponsored Drug Assistance Programs (aka Patient Assistance Programs). Each company sets their own policies which generally require an application, proof of income and so forth. The ICN Drug Assistance Center offers more information. Here’s a direct link to the Jannsen Pharmaceuticals Inc. Patient Assistance Program.
#9 – Consider Reducing The Dosage
If $900 per month is impossible but $450 is, you could reduce your dosage by half to extend the prescription an extra month… provided, of course, that your doctor feels that this is safe to do. The typical dosage for Elmiron is 400 mg per day, thus some patients reduce it to 200mg per day and make up the difference with other medications and/or OTC supplements. Ask your doctor about the viability, pro’s and con’s of doing this.
#10 – Utilize Over-The-Counter (OTC) products, when available
The 2011 AUA Guidelines For the Treatment of IC/BPS suggest that patients try OTC neutraceuticals (aka food supplements) before trying the traditional medications contained in Step Two of the guidelines. Why suggestion OTC’s? Because they have fewer side effects than traditional medications and have a fairly long history of success. Patients who cannot afford Elmiron, for example, have transitioned over to using supplements that have a similar bladder coating effect (i.e. CystoProtek, Cysto Renew) successfully. While supplements don’t work for everyone, they are certainly worth considering.
There are a number of Over The Counter products that can be helpful, including:
Do you have any other money saving strategies? Please share them here!
1. Knox R. $1000 Pill for Hepatitis C Spurs Debate Over Drug Prices. NPR. December 30, 2013