ACTION REQUESTED: Make Your Voice Heard by Medicare
Medicare Wants to Understand Patient Experiences with Anticoagulants (Blood Thinners)
October 11, 2023
- Summary: Make your voice heard! Please take our survey to inform our comments to Medicare about anticoagulants (blood thinners).
- Reading time: 2–3 minutes
Medicare recently announced that it will negotiate the prices of two afib drugs, Eliquis and Xarelto.
As CMS (Center for Medicare and Medicaid Services) prepares for the negotiations, they will be holding Virtual Listening Sessions where they seek to understand the patient experience with these medications and their alternatives.
StopAfib.org has applied to speak on behalf of the afib patient community at the Eliquis (October 30) and Xarelto (November 15) listening sessions. We are launching a survey to gather your feedback about your experiences with Eliquis or Xarelto and the alternatives to them (Pradaxa, Savaysa, and Coumadin/warfarin) so we can appropriately represent your perspectives.
While negotiating prices sounds good on the surface, we have no doubt that the payers (insurance companies and pharmacy benefits managers) will play games with us, and we want to head that off.
Take the Survey
This survey is to gain information for sharing in the upcoming Medicare Listening Sessions but is not limited to those on Medicare. It is, however, US only.
We want to understand and share patient experiences in the aggregate at these Listening Sessions. Thus, the survey is anonymous—we are not collecting names or identifying info.
We appreciate you taking the time to fill out this anonymous survey. You can access it here:
Survey on Afib Medications—US Only
Upon completing the survey, you will be returned to this news story in case you wish to register to speak to share your experience at the Listening Sessions (the deadline to apply is October 15). See the section below to do so.
Even if you don’t want to speak, reading my comments in the Written Comments For Medicare section below may be worthwhile.
If you want to share with us more details about your experiences accessing afib medications, please Contact Us.
Speak at the Listening Sessions
Update: Speaking Registration is Closed
If you’d like to speak (maximum of three minutes) at one of the listening sessions, you can learn more at Medicare Drug Price Negotiation Program Patient-Focused Listening Sessions (the deadline to apply has been changed to October 15 at 11:59 PM PDT, even though the page still says October 2).
Here is the link to register to speak.
The document attached below contains simple screenshots of each registration step to make it easy for you. (I copied the screens as I applied to speak at one of the sessions.)
Written Comments For Medicare
Medicare asked for written comments as well, which closed on October 2. In case you’re interested, here are summaries of some of the points in my written submission.
- I shared my personal challenges with warfarin before the new anticoagulants (the DOACs: apixaban, rivaroxaban, edoxaban, and dabigatran) came along, including the challenges of eating consistent amounts of Vitamin K, drug interactions, side effects, and that I was unstable on it for genetic reasons.
- The DOACs were lifesavers for many afib patients, with few food and drug interactions and no testing. Patients regained their lives and freedom.
- However, in 2022, one of the largest PBMs (pharmacy benefits managers) dropped three DOACs from their formulary, and patients had to pay 100%, apply for a Prior Authorization, or change meds.
- Prior Authorizations may become even more pervasive because of these price negotiations as payers seek to recapture margins eroded by subsidizing a more significant portion of drug costs.
- Prior Authorizations are difficult for patients and their doctors. I shared my experience of having to do so for a life-saving non-afib medication each year, including going all the way to an Administrative Law Judge hearing last year (found in my favor). Now, my access to this medication is again being denied.
- Medicare Part D plans must cover drugs selected for negotiation. However, they will find a way to make patients pay most of the cost of these or other medications by moving them to a higher tier or playing doctor and reducing our access to them by non-medically switching us.
- Non-medically switching patients can have dire consequences, particularly if the new meds work differently or have different dosing regimens and patients accidentally overdose or underdose.
- Medicare Part D plans are already preparing for the negotiations as many patients have received notice that their 2024 Part D premiums will double.
- I asked Medicare to engage with us patients throughout this negotiation process and to protect us from catastrophic consequences caused by payers and PBMs playing games with us.