What If You Can No Longer Get Your Parkinson’s Medications?

Bottle on pharmacy counter

Imagine this: You’re in line at your local pharmacy to pick up your Parkinson’s medications, which you’ve been taking for several years. When you arrive at the counter, your pharmacist informs you that one of the medications has been moved to your insurance company’s exclusion list, and your insurance no longer covers any of the cost.

What do you do?

In this post, we’ll talk about what it means for a medication to be on an exclusion list, how it might get there, what it means for your out-of-pocket costs, and how you can take action and fight back.

What determines whether my insurance plan covers my medication?

Coverage is determined by a formulary, which is a list of prescription drugs that an insurance company will cover. Insurance companies and other prescription drug providers use formularies, which are continually updated, to determine what medications they will help you pay for, and which are your responsibility. In short, a formulary is a list of approved medications known to provide the best overall value to the patient.

Health plans update their formularies annually and make additional changes throughout the year if new medications become available or the FDA determines that a particular medication is unsafe.

Rubber stamp with FDA and pills on craft paperAlthough changes to formularies happen each year, this year’s changes impacted many more people with Parkinson’s than usual because the powers that be moved five Parkinson’s medications to exclusion lists. If you’re one of the many people impacted by these changes, read on for a list of what you can do.

Who creates the formularies?

There are three primary payers in the US and approximately 80% of all prescriptions go through one of them: Aetna/CVSMark; Cigna/Express Scripts; and United Health Care/OptimRX.

Typically, the medications included on each payer’s formulary reflect the business priorities of the payer and are influenced by value assessment models and evidence supporting a drug’s ability to offer value to the masses.

what do formularies entail?

Formularies include tiers, or categories, based on the type of drug: generic, preferred brand, non-preferred brand, and specialty.

  • Tier 1 includes generic drugs that typically have the lowest copays
  • Tier 2 features non-preferred brand-name drugs
  • Tier 3 usually includes preferred brand-name drugs
  • If Tier 4 exists in your insurance company’s formulary, it will usually feature specialty and biosimilar drugs in Tiers 3 and 4 that are sometimes new or not yet established as safe or effective. Drugs can also be put into Tiers 3 and 4 if there is already a similar, less expensive medication in Tier 1 or 2. Your copays will be highest for medications in Tiers 3 and 4

What else might cause my medication to be excluded?

In addition to these tiers, if a payer is unsure of a new medication’s ability to offer value to the masses, they can place the drug in a “new-to-market block” while they collect and analyze data on its efficacy and value. While they’re collecting and analyzing this data, the medication is not reimbursed or is reimbursed only rarely. (So, essentially, the new medication starts on the exclusion list.)

Two female pharmacists checking inventory at hospital pharmacyAnother reason could be due to step therapy. This is a restriction placed on drug coverage by private health plans and Medicare private drug plans. It means that before your plan will cover some (generally more expensive) drugs, you must try other (generally less expensive) drugs that treat your condition to see if they will be effective for you. A common step-up drug that people with Parkinson’s take is GOCOVRI® (by the pharmaceutical company Adamas), meaning many people must complete a trial of Amantadine IR before they can get a covered prescription for GOCOVRI. Because GOCOVRI is the only drug on the market indicated for both dyskinesia and OFF, this trial period can be especially burdensome. If your physician has recommended GOCOVRI as part of your medication plan, ask them if they are willing to do what it takes to help speed up the process through which your insurance will cover the medication.

What does all of this mean for me?

In theory, formularies exist so that insurance companies can offer a wide range of medications while only covering drugs with proven benefits and low risk. But in practice, formularies create situations where many people who need a specific medication can’t get it.

What actions can I take?

If you learn that a medication you’ve been prescribed has landed (or is soon to land) on your insurer’s exclusion list, here are some actions you can take:

  • Ask your physician about alternatives. Check with your doctor to see if a less expensive or generic version of your medication is available. If there is, that medication is more likely to be covered under your formulary, and your doctor should be able to tell you if the generic version would work for your needs. If you’ve already unsuccessfully tried other medications, though, one or more of the steps below will be required.
  • Stock up. If your pharmacist learns and informs you in advance that a medication you’re taking is moving to the exclusion list, you may be able to stock up, at least a bit, before the cost increases. Due to several circumstances, this is not always possible.
  • Titrate. For many Parkinson’s medications, abruptly ceasing to take them can cause bothersome and sometimes very dangerous side effects. If you and your physician plan to try a new medication in place of the one that is now (or soon to be) excluded, work with them to create a schedule that allows you to titrate off the medication slowly.
  • Pay cash. This option is out of reach for most people because without insurance to help cover the costs, Parkinson’s medications often are prohibitively expensive.
  • Fight back. Every insurer offers an exceptions process, through which you can request that a specific medication be covered. Your doctor’s office is likely familiar with the exceptions process and can help you with a request for an exception, so don’t hesitate to ask them for assistance. Though the exceptions process varies depending on the insurance company, typically, each will require confirmation from your prescribing physician that the medication you are requesting is necessary to your care. To request an exemption:
    • Ask for a confirmation letter from your prescribing physician stating that the medication you are requesting is necessary to your care.
    • Request a statement from your doctor explaining that the medications included on the formulary, even those considered alternatives to the drug you are requesting coverage for, will not treat you as well as the one you are requesting.
    • Request temporary coverage for your requested medication during the exceptions process. If you’re granted temporary coverage, your insurer will help you pay for the medication while they determine whether to grant you the exception. If your doctor includes on the exception request that the case is urgent, the insurer will be required to decide about coverage much more quickly than if it’s a non-urgent case. (Your doctor’s office will know more specifics about this timing, so remember to ask when you’re discussing the exceptions process with them.)
    • Know that it’s incredibly likely that your request for an exception will be denied, and the reasons for that decision are not always clear. Be prepared to appeal.
  • Appeal. If you lose your initial request for exemption, you can (and should) appeal. You may ask your insurer to conduct an internal appeal, a complete and fair review of the decision, or you can request an external appeal when you take your request to an independent third party. Doing so ensures that your insurance company does not have the final say over your request. Know in advance that you may lose the appeal unless your doctor is willing to go to bat for you.
  • If you lose the appeal, explore whether the pharmaceutical company that makes your medication has a Patient Assistance Program to help or fully pay for your medication. One company that offers this service is Neurocrine for the medication Ogentys®, which is a once-daily carbidopa/levodopa enhancer for OFF times that was just put on the exclusion list, along with a few other Parkinson’s meds, including Inbrija® (Apokyn), Lodosyn® (carbidopa), Requip XL® (a long-lasting dopamine agonist), Zelapar® (selegiline). For more on Patient Assistance Programs, explore our blog post here.
  • Explore other insurance options. Not all plans and not all formularies are created equal. For example, even within one insurance company, a medication could be Tier 1 for one plan and Tier 2 for another. Different insurers will also place medications in different tiers. If after taking all the steps above you’re still having trouble getting coverage for your prescriptions, consider exploring other plans—within your insurance provider’s other offerings or through other insurance providers—to see whether you can find your medications for a lower copay elsewhere. When you’re choosing a healthcare plan or considering switching to another insurer, don’t hesitate to shop around and ask questions about specific formularies. Questions about copays, monthly premiums, and covered providers are critical when choosing your health insurance. By comparing which prescription drugs are covered and on which tiers, you can narrow your options to make sure you’re picking the best plan for your needs.

You can overcome exclusion lists with a lot of noise and appeals. Your doctors can make noise and fight for you. However, if doctors hit a lot of walls when prescribing a drug on the exclusion list, they may just stop prescribing the drug altogether. 

The takeaway: don’t take no for an answer!  

Learn More about Formularies, Insurance, and Parkinson’s

We recently sat down with Davis Phinney Foundation Ambassador Amy Carlson to discuss the issue. In the video included in this post, Amy shares her story about navigating the exceptions process when her formulary stopped covering one of her prescribed medications. 

One of the most common worries we hear from people living with Parkinson’s is concern about how they’ll be able to pay for their medication over the long term. Since Parkinson’s often causes a wide variety of symptoms that require treatment, it can be a challenge to find a way to afford everything you need. To help, we’ve compiled a set of resources for you to reference depending on the medications you take. Click here to explore the resources 

Thank you to our 2021 Peak Partners

A special thanks to Neurocrine for their help in understanding the complexities of this issue. 

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