Being a SpecialtyRx patient isn't always so Special
Reading this article https://bit.ly/33154MP struck a major nerve with me and will do the same for many Americans dealing with chronic illnesses that require Specialty Pharmaceutics. Let me just highlight a couple paragraphs from that article:
Patients with chronic diseases face an additional burden due to a Department of Health and Human Services (HHS) rule that took effect last week curtailing co-pay assistance—financial aid in the form of co-pay coupon cards from drug manufacturers that millions of Americans rely on to help pay for their prescription medications.
HHS recently finalized its annual regulation called the Notice of Benefit and Payment Parameters for 2021 (NBPP 2021), which expressly allows health insurers to adopt “co-pay accumulator adjustment programs” (CAAP). These programs can prohibit co-pay assistance from counting toward patients’ deductibles and maximum out-of-pocket limits. For many patients, this policy means that once their co-pay assistance runs out, they are back in the position of not being able to afford their medication.
It also triggers anxiety and the fear of what treatment avenue I may need to take in the possible near future. For me personally, I was diagnosed with plaque psoriasis, the most common form of psoriasis at age 35, typically the end of the age range when people can develop this auto immune disorder to which there is no permanent cure as of today. It effects approximately 8 million Americans and 125 million people worldwide. I guarantee you have seen a commercial for one of the treatments - the majority that are shown on TV are biologicals (injectables aka shots) which typically have famous celebrities expressing their appreciation for the results of the drug. What most don't know unless you are either in the Healthcare/Pharma industry or a patient yourself is the cost and steps it can take to get on these treatments and have your insurance actually approve it. SpecialtyRx drugs make up approximately 50% of total pharmaceutical sales on only 2% of the total prescriptions written....read that sentence again and it should tell you something. These drugs are EXPENSIVE!
As a psoriasis patient you don't start off on a biological. You start with a topical aka creams (typically a steriod cream), possibly some light therapy, etc. For many psoriasis patients, myself included the results from the cream work great..........initially. Having a hyper active immune system it seems that our bodies quickly build up a tolerance for the medication and the efficacy of the drug quickly diminishes so back to the Dermatologist you go to see what they have next in their bag of tricks. For me the psoriasis started as a little patch on my scalp. Well being bald and in a public facing career that wasn't an ideal look for me. It also started to spread which is also unfortunately common. My wife gets a kick out of the commercials for these drugs as they say something to the effect of "my moderate to severe psoriasis" like who would ever state having the disease in that sense but basically there is an amount of psoriasis coverage of your body (approx. 40+%) needed to possibly be approved to get on a biological drug. Even then it's usually going to be a challenge as there are a lot of different treatments you likely will need to show you have tried without receiving positive results over a period of time. For my journey, I went through several topicals. The last one was supposed to cover about 15 days worth of treatment but at that time I had so much plaque coverage there was no way if I was really hitting all spots it would last that long. With insurance it cost me $75/bottle. One time I forgot my prescription provider on the Health insurance changed and I thought the poor guy at CVS was going to die trying to tell me how much it was going to cost me. I watched as he would glance at his screen, then back to the med, then back to the screen which must have happened about 6x in a row until I said, "how much is it saying" to which he wincingly said ...um, $1466 and some change. I proceeded to laugh out loud and said well if it costs that much I won't be buying it. Fortunately he asked if my insurance had changed and then I recalled that my prescription provider did so once that was corrected, I proceeded with the $75 copay. Still not cheap but far from $1466. It was around this time that I started to think to myself how much am I going to be willing to pay to treat my psoriasis. While it's hard to really know how the psoriasis is impacting the inside of my body its also not a medication where if I didn't take it I'm going to die from not taking it, at least not relatively soon. Nor would I be in pain (I don't have psoriatic arthritis), its just extremely unsightly to look at and living in a very hot/humid climate there is no way I'm wearing pants, long sleeves and shoes for that matter all the time if I want to be out in public. At this point I wasn't a SpecialtyRx patient, just using a regular pharmacy.
So fast forward a couple years and I get my first experience having to use a Specialty Pharmacy. My psoriasis at that point was probably covering 20-30% of my body and I went onto Otezla, which is a pill format but falls under a SpecialtyRx drug likely due to the cost as it doesn't have the other factors that usually support being a Specialty drug such as how the treatment is required ie. injectable, infusion, etc., and/or special handling needs (shipped in cold pack lined styrofoam containers as an example). For me Otezla looked like it may work after the first few months and again quickly the efficacy diminished along with being a bit harsh on my stomach. So back to the Dermatologist I went, already having a good idea which direction I was going to be lead....to a Biological. Personally I'm already not a fan of taking any type of prescription medication, much less having to give myself a shot? Um, yeah, not excited.
So after talking with my Dermatologist and asking a million questions we decided we would try to get approval for me to get on Taltz which is Ely Lilly's biological for psoriasis. The reasons I agreed to try and go that route is A., she saw patients with similar or worse levels of psoriasis have excellent results in a timely manner, and B., for me, it was going to be only 1 shot a month after getting through the initial loading phase cycle versus every other week which I would have to do with Humira for example. This is when I officially realized I was moving into the world of becoming a SpecialtyRx patient. It got REAL. Real scary and real confusing.
Almost immediately I had both a Specialty Pharmacy and the Patient Advocacy/Support group for Taltz calling me. I had no idea they would be reaching out especially since at this point I wasn't even approved by my Insurance to go onto the drug, plus I had a series of items I needed to take care of before being allowed to take the biological. Those items were a ton of blood work, a chest x-ray, both pneumonia and shingles vaccinations that are typically only given to people over 65 years old. On top of that my chest x-ray came back with a dark spot which then required a CT scan. Needless to say I paid out my max deductible that year. So after all that was said and done the rejection letter came. Ok, so what does that mean.....well, your insurance is basically saying you haven't tried XYZ therapies which are cheaper to treat your psoriasis so you need to go that route if you want them to approve and likely pay a fairly cheap deductible. Well, not so fast is what I found out....basically these Pharma companies want more patients to be on their medication to hopefully show positive results increasing the odds more healthcare providers will recommend their drug and then allowing them slowly decrease the cost of the medication due to volume - with the goal of becoming approved by the insurance. What did this mean to me? Well, I believe at the time the going retail price for 1 shot of Taltz was about $5,000. So basically $60k/year if I had no insurance and was going to have to pay out of pocket. Who can afford that? Well turns out Ely Lilly and their Taltz Co-Pay Program would basically pick up the bulk of the cost and my out of pocket payment was $35/per shot initially so $420 annually out of pocket, now that is doable. The results I had from Taltz were about as close to a miracle as I could imagine. When you deal with something for so long only to get worse and then literally by the second month of taking this biologic my skin had cleared up 95% was a type of relief and joy I just can't adequately describe in words. By month three or four I had 100% clear skin. Of course with psoriasis you are always in fear that at some point the medication is going to lose its efficacy. Over the next 6-9 months I would occasionally receive an updated rejection letter in the mail from my Healthcare insurance stating basically the same message - try something else if you want approval. The business side of me gets it. The patient side of me says some unkind words. At that point I'm totally fine and happy to be paying $35/month but these co-pay programs don't give you a guarantee on how long they will last. At probably the 11th month I receive another rejection letter from insurance but literally the next week I receive a "Congratulations, you've been approved" letter from my same Healthcare insurance provider. What changed? I still have no clue but didn't care...it sounded like a good thing. My co-pay went from $35/shot down to $5/shot. At this point I'm thinking $5/month for this miracle drug, this is awesome.
About 3 months later as annual enrollment for healthcare benefits is coming up I get another notification. This time it states that the company I work for is basically saying I need to try another option and it lists those drugs. So here I've had amazing results with Taltz for over a year that my insurance basically said we are not going to pay for the bulk of that year then change their mind an after about 4 months of that now I have to change or will be forced to pay retail price for Taltz?!? At that point I really just wanted to back to paying $35/shot but after inquiring was told that was not an option. So, ultimately I made the decision to select Cosentyx as I knew the application method was fairly similar to Taltz except that I give myself 2 shots instead of 1, once a month. By the way, over this period of time I think my actual SpecialtyRx provider has changed 4x. I have had no say in who actually fulfills my prescription and fortunately the majority I've dealt with I really haven't had any issues with. I have to see my Dermatologist once every 6 months, get bloodwork done, and have an annual TB test.
So I believe it was this past Feb when I started Cosentyx. Fortunately for me there was some confusion about whether or not I was going to need to do the loading phase since I had already been on Taltz. Ultimately it was decided I didn't need to do the loading cycle and just do my typical once a month injection(s). The fortunate part is that I was sent the loading phase so that equated to a 6 month supply of treatment that would last me through June. So in early July I reached out to my Specialty Pharmacy that was chosen for me and when I went to have them process my prescription they ran into an issue. I was told they needed a new pre-authorization but they would put notes stating it was a rush so I could hopefully get my prescription by the 20th. I also notified my Derm office of the situation. Ultimately I would receive a call back from the Specialty Pharmacy informing me that the prior authorization had been approved but that now my Specialty Pharmacy would change again. Ok, no problem...so after a few days after not hearing anything from the new Specialty Pharmacy that was going to fulfill my prescription I called them. Once we got to the part of co-pay and having been through this process before I wasn't shocked when she said, um....your co-pay amount will be $1,846.51. I didn't get angry as I knew what was going to need to take place so I asked the questions if I had been set up with the Cosentyx co-pay program. I had not so off I went to contact them. I will say in this day and age of poor customer service, typically your experience when it comes to Specialty Pharmacies and Pharma manufacturer's patient support/co-pay program telephone reps are actually top notch. The woman I spoke with at Cosentyx's support center which is made by Novartis was superb. She got me all set up with not only a co-pay card but a secondary virtual VISA card as when I mentioned what my annual co-pay amount would come to $22,158.12 and she mentioned the co-pay card would cover up to $16k on an annual basis max so the secondary VISA card was to help cover what the co-pay card wouldn't. Now here is the part I don't understand and loops back to what the article referenced in the beginning of my story is so concerning. When I called back the Specialty Pharmacy to get the prescription going and provided her first my co-pay card it only took off a tad over $250 of that $1846.51 amount. I wasn't told what limit if any was on the virtual VISA but it went through to cover the rest as I wasn't asked to cover anything additional. Success! At least for this month. I specifically inquired if these co-pay card and VISA payments would also be applied to deductible limits and I was told that I would have to inquire with my insurance directly about that. So let's think about a few things. If my co-pay card and secondary VISA ultimately have an annual $16k max limit but that $16k also applied to your max deductible then the meds for the remainder of the calendar year after the $16k are covered at no cost. In the article, if these copay card amounts are no longer to apply I'm going to be on the hook for an additional $6,158.12 in a calendar year if I want to continue using the medication. Those are costs above and beyond my already significant monthly insurance premiums. Now let's think about those with more chronic illnesses who's medication is even more expensive? Possibly life or death decision or chronic pain so bad they can't function. Yeah, it's not a pretty picture.
As a consumer, and seeing my insurance provider whom is almost a monopoly continue to post record breaking profits, do they really need to stick it to the patient by not allowing these co-pay cards to credit towards max out of pocket limits? I'm all for capitalism but healthcare in particular is a slippery slope. All you hear in the media is price gouging, etc., but yet all of these large pharma manufacturers and insurance companies are publicly traded companies....it's their job to increases sales and profits so how do we expect to see change?On a more positive note I'm continuing to not have any psoriasis forming nor any side effects so thank you Ely Lilly and Novartis for making some drugs that truly impact patients lives for the better. My hope is some day they will find a permanent cure for psoriasis in all its forms and being an auto-immune disease likely solve many other chronic AI illnesses. If you suffer from psoriasis or want to share your thoughts on Healthcare reform, Specialty Pharma, etc., I'm always open ears.