It is not cheap to have multiple sclerosis (MS). Many of us can remember instances in our pre-MS days when we filled a prescription and were shocked by the price - $112 for a tiny bottle of eye drops or $89 for anti-fungal cream that might help our baby's diaper rash. Then we got diagnosed with MS and got hit with medication sticker shock beyond what we could have ever expected.
The world of chronic disease is a big eye-opener when it comes to drug prices, as we need “specialty drugs” that cost a lot of money. It would be shocking enough to grapple with the idea of paying thousands of dollars for a month’s worth of meds, but then we have to get our heads around the fact that this is not just for one month – oh no, those calendar pages keep flipping.
In most cases, with limited exceptions, whatever disease-modifying therapy we end up on is a part of our life for the long-term; that is, until it stops working, we can’t tolerate it anymore or we stop taking it for some other reason. Throw some pricey symptom management treatment in there and we are talking about lots of money for a long time.
It is undoubtedly helpful to have health insurance. But drugs still might cost quite a bit, due to things like complications with formularies, choice of specialty pharmacies and weird and unclear “tier classifications,” which may mean that we find ourselves paying substantial percentages of drug costs, rather than a fixed copay amount.
If you have health insurance, the first thing to do is line up your prescription meds and call your insurance company to see if there is any way to reduce the money that you are paying out of pocket. You might also take a look and see if you are getting generics (on some of the symptom management drugs or drugs used "off label"), which can make a huge difference for some medications.
I'm including some ideas that are adapted from my book, The Multiple Sclerosis Manifesto: Action to Take, Principles to Live By. I can't guarantee that you will find a way to pay for all of the medications that your doc may prescribe, but this will give you a good head start in finding out what programs and options are available to you.
How to Check Prices
DestinationRx is a helpful site to help you compare prices on drugs, check out generic options and manage your list of medications, including checking for drug interactions or safety information. You have to sign up for a membership to have access to pricing information, but it is a simple process and free of charge.
Just to see what it was all about, I searched “Copaxone” to see what the price was and found out that it was $3,753.83 per month. There was then an opportunity to view my "savings options" – I clicked on those and a list came up of the other disease-modifying therapies and their prices (Rebif being the lowest at $2,809.91). The site used to provide information about the price range for each medication, but that information no longer seems to be available.
Prescription Drug Cards Might Help
You can also look into discount prescription drug cards, which may help ease the pain a little. Disease-modifying meds are NOT included, but some of your other medications may be – you can check a list of drugs that are covered.
Two to check out are: RxDrugCard (888-216-2461), through which members pay a small yearly fee to receive discounts at participating pharmacies; or Together Rx Access Card (800-444-4106), which is free but limited to people who have no prescription drug coverage and meet certain income guidelines.
Patient Assistance Programs
Patient assistance programs exist for many of the disease-modifying drugs and other medications. You can check with the manufacturer or you can look at some of the websites that have organized much of the information about the various programs in one place in easy-to-search formats that can help you figure out eligibility and provide application forms.
My favorite one, for ease of searching and comprehensiveness, is NeedyMeds. Check out the column on the left side: you can search by medication name or "Disease-Based Assistance" – searching "multiple sclerosis" turns up a bunch of organizations willing to help pay for medications, MRIs, respite and provide other types of assistance to help people with MS.
The National Organization for Rare Disorders (NORD) also has a very limited number of medication assistance programs for uninsured or underinsured individuals with multiple sclerosis. It's worth checking out, mainly for the other interesting information and links about multiple sclerosis and other diseases.
Don't Forget to Ask Your Doctor for HelpYou should never hesitate to tell your doc that the cost of meds is a huge consideration for you. He or she might be able to suggest an equivalent medication, have a staff member help you fill out paperwork to one of the patient assistance programs or know of another solution, such as an open-label clinical trial.
You should never just agree to take a medication, knowing that you will be unable to afford it. Your doctor should be your partner in taking care of your MS and, as such, realize that the best choice of medication for you is a decision based on much more than efficacy data in a medical journal. Taking medications for a chronic disease like MS is a real-life experience, a multifaceted decision in which cost is a major factor in the final choice.