This post is going to be a little bit more of a complaint than an informative or suggestive post but bear with me. Sometimes having ms is a real hassle and is draining. I want to share the not so perfect or pretty times with you all, as well.
As I have noted in previous posts, after first being diagnosed with ms in 2018, I decided with the help and guidance of my family and neurologist to take Tecfidera as my ms treatment and disease modifying therapy. I have been taking it ever since. Since going on Tecfidera, I have had no new lesions and my disease activity has been stable and literally nonexistent.
The unfortunate thing about Tecfidera, aside from having to be tested every few months to make sure my white blood cell count is high enough to prevent me from getting pml, is that Tecfidera is pricey. When I say pricey, I am not exaggerating. Before insurance it costs almost $13,000.00 a month for 60 pills (2 per day). After insurance it costs me about $1,600 per month, but since starting the medication, Biogen, the manufacturer of Tecfidera has been providing me with copay forgiveness. This means that Biogen pays for or provides a waiver so that I do not have to pay for the post insurance cost per month for my medication. This has been a real-life saver, as there is no way I can afford $1,600 per month for my medication. So, since starting the medication, I have literally paid nothing for it—aside from my insurance premiums.
Then, a little bit before Christmas, I received a letter from Biogen stating that they were notified that I no longer needed this copay assistance. I freaked out, and separately was thinking, how do you know what I need or do not need? It’s not like I notified Biogen stating I didn’t need the forgiveness anymore. So, I called Biogen and explained the situation. I learned I no longer “need” the copay assistance, because the copay assistance is simply no longer available.
That was news to me and everyone else. Tecfidera’s patent was challenged in court, and they lost their patent. Tecfidera is appealing this in court, but in the meantime, myself and probs a bunch of other Tecfidera patients are struggling. When a company like Biogen loses their patent for a medication, it means Tecfidera’s ingredients, process and therapy are now posted and free game for generic companies to copy. And, in about October or November of this past year, multiple generic companies came out with a bunch of generic Tecfidera. Apparently once generics of a name brand come out, the original manufacturer of the name brand can no longer by law in California specifically provide copay assistance. I’m sure this law was passed with support and probs bribery from insurance companies, so that they can more easily push you into taking the generic brand instead of the name brand because the generic is simply cheaper for the insurance companies.
After figuring all of this out, my health insurance provider sent me a later stating that since there are generic Tecfideras on the market, they will no longer be paying for me to take Tecfidera and I would fully have to pay out of pocket for it unless my neurologist appeals this decision and wins the appeal. This is really sad and depressing. As with everything, you have to follow the money and know that it really is always all about the money.
I was scheduled to see my neurologist one last time before he retired at the end of 2020, so I figured I would discuss this with him in person and figure out what to do. He started with telling me that he does not recommend and does not want me to take any of the generic Tecfideras. He said the generics all have a ton of added fillers and ingredients that have been causing certain allergic reactions like hives, flushing and headaches. The name brand Tecfidera is purer with less ingredients. So, he agreed to appeal this decision with my insurance and keep me on Tecfidera. Luckily, my appeal has been approved, but I will still no longer be receiving the copay assistance or forgiveness. I will have to pay the copay amount up until I meet my high deductible plan’s out-of-pocket expense requirement.
Separately from being upset about having to battle with my insurance company to be able to continue taking the medication that literally controlled my disease activity after being diagnosed and being stressed that I did not know if I was going to be able to afford this added expense, I was most upset about the fact that I know this will not be the last time this happens. And, until there is actually a cure, I will have to balance my health with what the insurance companies are willing to pay for and what I can afford for the rest of my life. When I realized this, it was a really low day. Everything seems to be working out now, but some days are a real struggle.
Please note that this is not a post about my political views regarding healthcare. My insurance is really good and I have really good healthcare. All I am complaining about is the fact that generic brands should not be able to force people out of being able to take their tried-and-true name brands because they want to knock off the name brands, infiltrate the market, and water down the name brands with added fillers and other unhelpful ingredients.
I hope that this issue never happens to all of you.
Always,
Taylor
