Hi Guys,
Has anyone’s health insurance been refused for ro-peginterferon because their spleen was enlarged? Axa have just told me they won’t authorize my claim as this medication does not reduce spleen size.
Has anyone else been in this position and what did you do?
Thanks for your comments in advance
I have been in this position. When Besremi first came out my insurance company not only refused to authorize but stated my plan would "never" pay for this medication. My hematologist tried to appeal and could not get it authorized. I filed my own appeal, which many people do not realize that they can do.
Filing your own appeal requires understanding the process. It takes persistence and commitment to finding the information you need to file a successful appeal. It took me about 14 hours of work to pursue my appeal. It was worth it. I won.
One element of your appeal is that the reason for denial is bogus. You can check multiple sources, starting with the PROUD-PV and CONTINUATION-PV trials. From the FDA in the USA. "BESREMi works to normalize blood counts, spleen size, and prevent new blood clots. In the trial, 61% of patients receiving BESREMi achieved this benefit (see the BESREMi Prescribing Information." fda.gov/drugs/drug-approval...
I believe you are in the UK. The appeals process may be different in your private insurance system. Note that this is from how insurance works in the USA. I will post it for the people in the USA who are in this situation. Hopefully, some of it will apply to people in other places.
Another element of the appeal is to review your insurance plan formulary. See where Besremi is on the formulary. You need to know whether Besremi is on the forumarly, what tier Besremi is on, what requirements exist for that tier, and whether there is a step requirement. You can often access this information on-line.
You will need to contact the insurance company directly. In the USA, this will likely be a Pharmacy Benefits Manager (PBM). You will be connected to a "Patient Navigator" who works for the PBM. While they may try to provide some help, note that they work for the PBM, not for you. You need to be specific in the information that you request and very persistent when you run into roadblocks. One of the things to find out is what the "Plan Rules" are for your specific plan. They can vary quite widely between plans even within the same insurance company. They may also go by other terms, such as "Plan Guidelines." You will also need to find out what the different kinds of appeals that you can file are. This will often include a third-party review. You will also need to know whether your plan is "fully insured" or "self-funded" (by your employer). In some cases, you can also contact the health insurance regulator in your state. They can sometimes help.
Filing your own appeal requires that you educate yourself about the process. It also requires dogged persistence. It is important to be polite and very assertive in your interactions with the insurance company employees. Some may want to help but ultimately they answer to the insurance company, not to you. One thing to know is that a patient-filed appeal can have more legal weight than a physician-filed appeal. A physician-filed appeal is a difference in medical opinion. A patient-filed appeal can allege a violation of contract law. If an insurer denies a claim improperly or fails to honor the policy terms, the patient may have a breach of contract claim. This is why it is so important to understand the policy terms (Plan Rules).
Regardless of what healthcare system you are in, assertive patients will receive better access to the care they need. Insurance companies rely on patients giving up when they hear a denial, even when the denial of care is improper. It is up to each patient to be their own best advocate and refuse to accept an improper denial. It can take a lot of effort to overturn a denial but it is worth it.
Wishing you success moving forward.
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My goodness, thank you for your reply. This is very helpful!
Agree. We have to be well informed, make a plan and follow it.
When I was prescribed Besremi it was also rejected twice. There was a patient advocate at the doctor who took the role of working with my physicians and the insurance to work towards getting it approved.
On the third attempt it was approved. While I did not have an enlarged spleen, this drug is very expensive and as has been extensively covered in the media, insurance companies often reject first, unfortunately. Can you find a patient advocate who can fight on your behalf from the doctor's office who is prescribing it? Or is it past that point of being able to apply again?
Hello Luthorville,
Thank you so much for your reply. I have found out from the insurance company that the reason they have rejected the drug is because I have an enlarged spleen and this drug doesn’t reduce spleen size.
However, as my spleen has shrunk 2.6 cm’s since being prescribed carvedol it is thought that the enlarged spleen was mainly due to portal hypertension.
The insurance company have said that they will review my case again if my specialist can comment on his choice of drug, hopefully this will work!
By lowering blood cell counts and slowing disease progression, Besremi might help decrease spleen size over time. However, this is not its primary function. Some patients see improvement, while others may continue to experience splenomegaly.
If splenomegaly remains problematic, JAK2 inhibitors like ruxolitinib (Jakafi) are specifically approved to reduce spleen size in PV and other myeloproliferative disorders. Is there any reason you aren't on that drug? I would think that it would make the most sense for you to be on both.
For what it's worth, I'm on both Besremi and Rux.
I am more than a bit skeptical that your enlarged spleen is due to hypertension since spleen size is something that happens from PV.
MF, considering interferon treatment
Spleen embolisation gone wrong
Holiday insurance
ET but with falling platelet counts
starting ruxolitinib
