How can I assist you?

My health has been a roller coaster lately. This past week my disease is basically out of control. I had to break out my cane because walking and balance were an issue. I woke up Friday morning feeling exhausted, but I got out of bed and forced myself to drive to work. I lasted 1.5 hours before realizing that I couldn’t function. Pain, swelling, nausea (from the pain), and devastating fatigue overwhelmed me. I slept for over 7 hours during the day and still went to bed by 11 pm that night and didn’t wake up until 10:30 the following morning. I am not a good sleeper, so this really shows me that I pushed my body way too far.

Why am I flaring so badly? Well, I think it is a perfect storm. Huge shift in temperature/weather always causes a bit of a flare up. I’ve been living with stress, grief, and depression for months without relief. Finally, my biologic drug just seems to be plateauing in it’s ability to control my disease. After an appointment with my rheumatologist, we decided to try another drug. This is (I think) my 10th biologic drug in 20 years. I will say that Kevzara (my last biologic drug) has been the most effective one I have ever used. The only drug that helped control my joint swelling and pain. My fatigue was still pretty bad, but overall, Kevzara made me feel pretty good. I’ve been fighting a change, but after 4 months of watching my disease spiral. I probably waited too long. Now I am paying for it. Time for a change.

My rheumatologist had her office do the pre-authorization with my insurance. I got an unexpected call on a Monday morning saying that the new drug did not require a pre-authorization because my insurance considered it an “approved” drug. I was told that they would send my information to Taltz and they would get in touch. I missed the first call from my “Companions in Care” team from Taltz (seriously….that is the name that their crack PR team came up with??) , but called back the following day and was told there was some “issue” and they had to make sure I could get approved for their copay assistance program. The person I spoke to wasn’t overly clear as to what the issue for the hold up. I was told they would call the next day. Well I didn’t hear from them and honestly, I didn’t think much about it because after 9 previous biologic drugs, I didn’t think there would be any reason for the hold up. How wrong I was….

Do you want to know what the problem was? It was the fact that my insurance did not require a pre-authorization. To the lay person, one would assume this would be an easy/peasy experience. Nope. My insurance didn’t require a pre-authorization, but Taltz needed to “approve” that I didn’t need to be approved to determine if I qualify for the Taltz copay assistance program without a pre-authorization. Basically, I had to be pre-authorized to not be pre-authorized. That took almost over 48 hours to determine. Now two days might not seem like a lot, but when you are living in excruciating pain, it’s a lifetime.

Some may be asking, “What is copay assistance?” Well, it is a program set up by pharmaceutical companies to help patients have access to expensive drugs without a high copay. Copay assistance programs help people with private insurance lower their out of pocket costs for drugs. My last drug, Kevzara, had a copay of $1200+. With the copay assistance program, my out of pocket cost was $0. I’m not sure how much my copay would be for Taltz which has a list price of $5,974.40. Realistically, I wouldn’t be able to afford it. So copay assistance programs seem like a great idea since Taltz would only require me to pay $5 on their program. Now if you are wondering who covers the cost? Pharmaceutical companies cover the majority of the cost and personal insurance covers the rest. Seems like a great deal, right?

It is, for the most part, but it is not available to anyone who is covered by medicare or medicaid (it would be like the government receiving a kickback). Also, many private insurances are now requiring a separate copay assistance plan. In January, I tried to refill my Kevzara. I had a $0 copay due to the Kevzara copay assistance program. I ordered my refill via the pharmacy app. I noticed I received a voicemail from the specialty pharmacy, but didn’t listen because I just assumed it was the notice that my prescription was shipped. When I listened to it the following day, it said my prescription refill was due. I assumed it was an error, since I already ordered it. The delivery day came and went. So I went to reorder the prescription again, via the app, thinking that I may not have completed the order. Again, the following day, I got a reminder to refill my prescription. So I called. Apparently, my insurance was requiring me to sign up for a copay assistance program called Saveon SP. Now, I did remember getting an email about this, but I assumed, as did a few other colleagues, that if we were enrolled in copay programs there was no need to sign up. Why would I need help paying a $0 copay? It turned out that because I was not enrolled in Saveon SP, my biologic drug refill was canceled twice. I had to sign up for Saveon SP even though I already had a $0 copay through Kevzara’s copay assistance program. I still don’t understand why I needed two cards when there was no copay, but what do I know?

Now that I have switched to Taltz, I was told they could not refill my prescription until I signed up for not only Taltz’s program but Saveon’s as well. Apparently you have to sign up on a drug by drug case. You can’t just sign up once and be covered. I didn’t know that. When I was asked if I signed up for Saveon, I said yes. That held up my progress with Taltz, too. My insurance refused to refill the drug until I signed up for Saveon. I had to have my speciality pharmacy call Saveon with me to switch my assistance card from Kevzara to Taltz.

At the end of the day, Copay assistance programs are simply coupons. They lower patient out-of-pocket costs, but they have a cap. The thing to watch out for besides the red tape with sign up is “copay accumulator programs” and how these adjustment programs can actually cause patients to pay way more for their drugs. According to the National Infusion Center Association (NICA) “A copay accumulator – or accumulator adjustment program – is a strategy used by insurance companies and Pharmacy Benefit Managers (PBMs) that stop manufacturer copay assistance coupons from counting towards two costs: 1) the deductible and 2) the maximum out-of-pocket spending.” Most copay assistance programs have a cap. So when you sign up, they will say there is an annual limit that they will cover. Most insurance require a deductible to be met before it kicks in to cover medications. I know some that can be as low as $3000 and some as high as $10,000. Now that we know the numbers, let’s look at how this can impact a patients. Let’s look at my former drug, Kevzara. Each refill, my copay was listed at $1200+ but I paid $0. (I get Kevzara twice a month so my insurance would have been billed $2400/month). Some insurance companies use a copay accumulator adjustment program. That means instead of posting the $0 towards my annual cap, it would post $1200+ to go towards my copay assistance cap. The bad part is $0 would go towards my insurance deductible. Once the annual cap is reached, the patient would be responsible for the entire copay going forward. So if I had a $5,000 annual cap on my copay assistance program, and my insurance posted $1200 twice a month, I would lose the benefit of the copay assistance after 2 months and then would be responsible to pay for the $1200 myself for each subsequent refill because my deductible would not have been met to have it covered by insurance. It is important when you sign up for a copay assistance card that you find out if your insurance uses a copay accumulator. It is a question that I have learned to ask in the world of expensive biologic drugs.

The world of biologic drugs means a whole new world of red tape, pharmacy benefits managers, copay assistance programs, and specialty pharmacies. Copay assistance programs are suppose to help with lowering out-of-pocket costs for patients while increasing adherence to drug programs. In my experience, I have had those lower out-of-pocket costs, but have had worse adherence because something always delays my drug shipments because there is so much red tape to weed through until you can get what you need. It’s a program that is supposed to be simple. The past few years, I’ve found it to become a bit more cumbersome and confusing. Why put up with it? Because I have learned that life on a biologic drug is way better than life without one, even when I have to put up with “companions in care” confusing the heck out of me. Wish me luck that #10 is the lucky charm!

Why are programs designed to make things simpler so difficult to navigate?

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

8 thoughts on “How can I assist you?

  1. As you note the real losers are those who have Medicare for insurance. Our biologic medications are simply unaffordable. Thank you for raising the issue.

    Liked by 1 person

      1. i fear next year I will have to stop using Rituxan. We simply cannot afford what we anticipate the costs will be.

        rick

        Like

  2. It’s absolutely crazy what we have to go through just to get medication! I’m sorry you’re having to deal with this bureaucratic mess.

    Liked by 1 person

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