How I’ve controlled the costs of taking my treatment for MS
When the price for my effective DMT is a challenge, I have to scour the options
I’veĀ been on the same disease-modifying therapy (DMT), GilenyaĀ (fingolimod), for my multiple sclerosis (MS) for several years. It’s worked well for me, as my last exacerbation was at least five years ago. I credit this DMT for stabilizing my MS and allowing me to live better with my disease.
Today, my symptoms only mildly interfere with my life, and I remain independently mobile and work full time.
Until recently, my DMT was available only as a brand-name product, which was expensive. I found a receipt from my specialty pharmacy dated May 2023, and my insurance copay alone was around $5,000 a month. That’s the definition of sticker shock!
Pharmaceutical companies have been labeled as greedy and uncaring. I know the public has significant mistrust of the industry, and some of this mistrust is deserved, based on certain companies’ actions. Still, I’m grateful to Novartis, Gilenya’s manufacturer, for investing its knowledge, skills, time, and resources in developing a novel treatment for MS.
Under a Novartis copay assistance program, I didn’t pay a single cent for Gilenya. It didn’t use need-based criteria and was open to anyone receiving the medicine. I’m grateful for this financial support. The copay assistance program allowed me to continue taking Gilenya. Without it, I wouldn’t have been able to afford the medication and my MS might not be this stable.
Well, all good things must come to an end. GilenyaĀ became available as a generic medication in 2023, and my health insurance company notified me that it would no longer cover the brand-name product.
As a pharmacist, I’m confident about the quality of generic medications and have no problem taking them. But surprisingly, the problem with this generic medication, fingolimod, was the cost. My insurance copay was almost $500 a month.
I’m fortunate to be able to afford that, but it’d require some new budgeting on my part. I discussed the cost issue with my MS healthcare provider, who gave me some options. The first suggestion was to switch my DMT to a newer medication that’s available only as a brand-name product, and then access the new pharmaceutical company’s financial assistance resources.
I didn’t consider this option as I was adamant I wanted to stay on the DMT that has kept my MS stable.
Getting the cost down
Another suggestion was not to use my insurance to pay for my DMT, but to pay the full cash price. That was lower than using my insurance, as long as I used GoodRx or the Mark Cuban Cost Plus Drug Company. A 30-day supply of fingolimod became roughly $195-$260. The downside to this option was that the prescription cost can’t be applied toward my insurance deductibles or out-of-pocket limits.
I decided to pay cash for my DMT through Cost Plus, as it was the cheapest option.
The specialty pharmacy that had been filling my Gilenya prescription called to convert me to the generic and refill it. I informed the pharmacist of my decision to obtain the generic formulation elsewhere.
I believe in the saying, āGood things happen to good people.ā
The pharmacist informed me that the healthcare system affiliated with the specialty pharmacy had reevaluated the copay costs of many generic ābiologicā medications, including DMTs for MS, and my copay was now only $20 for a three-month supply. I couldn’t believe it and profusely thanked the pharmacist.
Public perception in the U.S. is that our healthcare system is broken, but this example shows that sometimes the pharmaceutical industry, healthcare systems, and pharmacies put the health of patients over profits.
Note: Multiple Sclerosis News TodayĀ is strictly a news and information website about the disease. It does not provide medical advice,Ā diagnosis, orĀ treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Vandra
Good to have comments from someone to has
ms like me! Sadly as I have got to the age of 75 am too old for any new tablets etc.
Kathryn R Pasquini
I stopped taken my medicine, it made me sick and it was too expensive. I have been hanging in there, but I wish it could be just alittle easer with paying for my meds. Good luck to all. Kay Pasquini
Gregory McGowan
On Aubagio 4yr, co pay assistance program stopped 1/24 cuz terifluminide generic is available, same issue. Name brand would be 9k. Generic is $112.00 towards deductible until it's paid, then 0 copay. Don't work, still have employer benefits 4 more yrs yet. Consider looking at other DMT, new stuff in pipeline but soon turn 61 & at 65 be on Medicare & private insurance to cover everything else, I believe im stuck with terifluminide cuz of cost & age. š„¹š
Gregory McGowan
Same as Aubagio, copay assistance program dropped cuz generic Terifluminide is available.
Teresa Cameron
I have been on Rebif since 2000. There is still no generic available. One month supply is $2018.40! I have a private plan that pays 80% up to $2750/year. Obviously doesnāt take long to reach that. Once we meet a threshold determined by family income, my (universal) provincial plan takes over. I am retired, and still paying at least $5000 before any relief.
BUT WHY, AFTER 24 YEARS IS THERE NO GENERIC AVAILABLE? They have a stranglehold on the market!
Betty Beem
Leigh, Iām so pleased you were finally able to purchase your DMT at a reasonable price. I was diagnosed in the early ā90ās with symptoms for 5 to 6 years before my diagnosis. My former neurologist continually predicted Iād be wheel chair bound by 2000. Iāve proved him wrong. When the DMTās hit the market, I inquired about my being prescribed one of the miracle drugs. He stated that I wasnāt bad enough. In 2001 MS forced my early retirement and I relocated to Houston to be closer to family. At a conference I attended here in Houston I learned that MS is the 2nd most expensive medical condition. Now, along with MS I have several comorbidities and at least 1/3 of my total retirement income goes to used for medical care. I will be changing DMTās shortly as the Aubagio generic is now available. Iāll be changing to a brand name DMT. My neurologist is quite leery of new generics when the hit the market. Rigorous clinical trials for truly well-seasoned folks are not included in those clinical trials. Medications prescribed for those of us whoāve been around the block 4,5, ā¦10 times may respond to new medications differently than those who had been included in those clinical trials. The rules of the game of āSecuring Drugs at a Reasonable Priceā change when one reaches Medicare age. It is far more challenging to be given grants from foundations and the manufacturers for multiple very expensive medicines. Also it seems that fewer foundations are providing grants for MS patients. When funding opens up, itās a race to see who the recipients will be. The various forms can be quite complicated. Some foundations only grant funding to those whose income is below that yearās median income; some for those only below the poverty level; while others accept applicants whose earnings are up to 5 times that yearās poverty income.
IMedicare drug coverage has several levels based on what an individual has paid out of pocket for prescription drugs that calendar year. The level with the most benefits for MSers is the catastrophic level. This year one must pay $8,000 to reach that level. Some years Iāve hit the jackpot by February or March. In 2025 the magic number is supposed to be $2,000. Mmmm. Iām skeptical. Itās too good to be true. Iāll wait and see.
Joan Bondira
One workaround I've found: if it's at all possible to find a med in a form that needs to be infused or even just injected at a clinic, then it's not a drug (Part D), it's a procedure (Part B). Hope this helps.
Patricia P. Garrett
I enjoyed your article. Iam doing well with my MS, but would like to walk faster, but safely. I want to know about what are my choices for a dropped foot. The Cionic sleeve did not work for me, because of the swelling of my legs. The Walk-Aide the same problem. I have not given up! I will never give up!!!
Patricia Garrett