Pegasys Copay!

[DN515]

Looking to see if anyone has any resources... So, I've been on Pegasys for about two years now ( PV diagnosed 6 years ago) and my allele burden has gone from 80% to 30% so far... I was paying $100 copay for my meds (which was already a lot) and as of January 1st, CVS decided that they were no longer going to have Pegasys on their formulary list... so today I got a phone call informing me that my copay would now be $1235.00!!!

I was given several numbers for "copay assistance" programs to be met with closed doors. I don't have the "right" disease for funding, or because I don't have Medicaid or Medicare, or federal employees plan...

This medication is WORKING for me, keeping my numbers under great control with no phlebotomy, and reducing my allele burden significantly with no side effects.

Does anyone have any suggestions for copay assistance or resources? I am thinking about talking to my hemo at my next appointment in February about Besremi, but not sure if that's on their "approved" list either.... UGH...

[FloydWood]

DN515 how terrible for you! Do you have health insurance or were you direct pay at CVS? I would reach out to your doctor right away. I had a doctor help me years ago to get a med he prescribed. You might also reach out to the Cancer Society to see if they have any resources. I hope you are able to get help without delay!

[hunter5582]

I would circle back to your insurance plan to find out what is going on. Formularies do change from year-to-year, but Pegasys would be something that should be expected to stay on formulary since it is a standard treatment for hepatitis. Its use for MPNs is off-label however. You will not know how to respond unless you know the underlying plan rules for your insurance.

Now that Besremi is FDA-approved for PV you may be able to get it approved. it may or may not be on your plan formulary. you can find out by contacting you insurance plan. Perhaps they will approve it with the $100 copay. That is what my plan did.

You may also be able to file an appeal with your insurance plan. Again you need to understand your plan rules to find out how this works.

NOTE: most patient assistance plans require that you NOT be on Medicare or have Federal Employee insurance.

NOTE: PharmaEssentia does have a patient assistance program for Besremi. I was immediately contacted by the specialty pharmacy (Biologics) when my Besremi was approved to see if I needed assistance.

Hope you get this sorted out ASAP.

[DN515 in reply to hunter5582]

Thank you for your response! I am working with the insurance company and HR at my husbands employer ( which is where are insurance is through) and hopefully it will all come together!

[hunter5582 in reply to DN515]

Wishing you success. Please do post what you learn during this process. Others will benefit from your experience. We are stronger together.

[shiftzz]

Great news on your allele burden numbers, I've been on interferon for over 3 years and the last allele burden results were down to 2%.

As I live in the UK I have no idea as to the cost of medication, I wish you luck getting it sorted..

[DN515 in reply to shiftzz]

2%!! That is wonderful! Thank you for your good wishes!

[shiftzz]

Uk prices..

bnf.nice.org.uk/medicinal-f...

[Wyebird]

I’ve read your post with horror and dismay. I’m going through a care crisis regarding my mum’s social care. It’s nothing compared to what you are up against. I so wish you well and mental strength to cope with your situation.

[DN515 in reply to Wyebird]

Thank you!

[light]

DN515, I am so sorry that you have to go through this unfortunate, difficult situation. May God our Lord help you and provide for you as He promised especially for this difficult situation. In His precious name, I pray. Amen

[yippinurse]

I applied for genentech under insured services while my insurance barely covered it. I got pegasys for 1 year at no cost. Social worker from my hospital helped me get the application and submit it. It was a godsend because I could not afford it.

[DN515 in reply to yippinurse]

I called Genetec's patient services and they said that the sold the manufacturing to some other company and are no longer offering assistance... grrr.

[yippinurse]

gene.com/patients/patient-f...

[gvibes]

The PAN foundation helps cancer patients with funding medications. You might try them.

[Emmyroos]

Where are you located? I'm in California and my Pegasys comes from "CVS - Specialty" (not the standard CVS down the road). It shows up via mail on ice. Maybe this is something to inquire about. Good luck. Navigating this whole insurance thing is so infuriating. I feel for you!

[DN515 in reply to Emmyroos]

Yes! I'm in Oregon and it is through CVS specialty mail order :). Thank you for your good thoughts!

[DN515]

Update!!! So... through our HR, we were connected with a program for specialty medications called Prudent RX... they enrolled me and contacted CVS specialty internally and handled it! $0 copay! That is even better than the $100 I've been paying for the past two years! What I learned is this however.... the copay assistance programs tend to group funding by medication and disease... so I found in many instances that Pegasys was a medication that had funding, but because PV is so rare and not the typical usage for the drug, that kicked me out of qualification... I suppose the lesson is: if you are going to get a disease/disorder, get a common one??!!

Thank you all for you support, suggestions and well wishes!

[Emmyroos in reply to DN515]

Wonderful result!! What a relief!!

[hunter5582 in reply to DN515]

Great news! This is why you never give up and keep looking for solutions.