Paying for Revlimid Info

[Lydia]

Mom found out it’s $2000 (I think – since I’m still in shock) a month. Like Chris said I guess the insurance companies decide who lives or dies.

There’s a lot of info here and there on this topic in this forum. Can anyone with info post here to consolidate and update info, problems, solutions, etc. Thought it may be very helpful to all of us. Thanks!

[Eric K]

Revlimid comes in 2 strengths, 5 mg and 10 mg. I’ve been on the 10 mg dose for about 3 months. I was told that my insurance covers a bit over $6,000/month with my co-pays at $14/month.

So far, the Revlimid has slowed down the rate the my Hgb drops but it my Hgb still goes down. At least my Tx’s should be more spaced apart now, I was getting Tx’s every 2 months while on Procrit.

[Lori]

Lydia,
My mom was told that the Revlimid was $84,000 per year – obviously, if insurance covers it, then they pay what ever the agreement is (ins companies don’t pay $84,00). Fortunately, her ins covers it and she pays $40 per month. She can only get one month at a time and she has to go through an interview with the company (Celgene) ever month. I am quite certain they want to make sure she isn’t pregnant (she is 82y/o and had an hysterectomy 30 years ago – I don’t think that is going to change) But, before we knew if it was covered, her doctors office told her that Celgene has a program to provide assistance – they had her fill out a boat load of paperwork re: her financials. Right after that we found out the her ins covered it so we didn’t follow up. Ask the doctors office or get in touch with Celgene Pharmaceuticals. I don’t know who your mom has ins with but she has the 5q chromosone and my mom doesn’t. It seems like your mom would be the more likely candidate. I would brow beat the ins company (alot) and go above customer service, got to a medical person who makes the final decision, tell them it is a life or death situation (which it could be) and you may see a response. Good Luck!
Lori

[LuAnn]

Hi, My dad was on Vidaza and had pretty severe reactions to it so the doctor is going to prescribe Revlimid for him. I checked out the following site which discusses how the drug is to be ordered and also has information on the Patient Support System (PSS) Program at Celgene. It’s a program that offers financial assistance for those with limited insurance coverage. Not sure how this works but we are going to give it a try. Has anyone applied for PSS assistance? Hopefully this info will be of help to some. Good luck everyone!

[LuAnn]

Oops! I forgot to add the site: it’s http://www.revassist.com

Good luck!

[Lydia]

Thanks all for info.

Mom was told her co-pay was $2800 ! – and I thought she told me $1000. Doctor’s office tried calling here and there and got someone to pay $400, then someone else to pay $600. Helps, but . . They’ve been calling for almost a week.

BUT – since then THE PHARMACY THAT CARRIES IT DIRECTLY CONTACTED HER PROVIDER AND IT WAS FINALLY OKAYED FOR A CO-PAY OF $30!!!! WE CAN’T BELIEVE IT. A miracle. Mom will receive in mail tomorrow. I guess they knew what to say!

Not many pharmacies carry it. Closest one to mom is 60 miles away. Your doctor has to fax to them and they mail to patient. It’s to the pharmacies benefit to help and contact your provider since if no one can afford it – they aren’t going to make any money off it. They said they contact her provider, but maybe they contacted Celgene as mentioned.

Hope this helps someone be able to afford it.

Will keep everyone posted with her side effects, etc. She’s going to keep a journal.

[Rackon]

Yes, Lydia, you are much better off letting the pharmacies deal with the insurance companies and Medicare. These specialized oncological pharmacies have staff people that do nothing else but work the system to get people the drugs. Thank goodness!

There are currently only 9 pharmacies in US that dispense Revlimid. Yours will send a 28 day supply at a time. Each time you need more you will need the doctor’s authorization (the office will send this in along with a request for the drug/dosage etc) and your mom will need to do the Celgene interview again. Due to the Thalidomide disaster, Celgene is being extremely cautious about birth defects.

Lori, I had to laugh about your mom’s hysterectomy. My 86 year old dad has been on Revlimid for a while now. His first interview with Celgene was a stitch. (I should tell you that my widower dad had his prostate and a testicle removed several years ago and is sterile. He was diagnosed with CMML in 2002.) Listening to him trying to explain this to the Celegene person over the phone had me in stitches. Finally I said “Dad, just agree you’ll use a condom when having sex!”

Revlimid is usually priced around $7000 a month. Although we took a hit the first month with the infamous Medicare Part D donut hole (co-pay $3600 as dad wasn’t on many prescriptions then), Medicare now picks up 95% of it (we pay $150 a month). Many insurance companies are paying too.

BTW Lydia, don’t be surprised or upset if your mom’s dosage needs to be adjusted. Almost everyone starts out on 10mg a day but many older people can’t tolerate that high a dose. My dad couldn’t. It also takes several weeks for the drug to do its thing – it may be 4-6 weeks before you know if it will work for your mom. It can have side effects such as hives and itchy skin or scalp. So far the only side effect dad hs experienced is the dry skin – which seems a small price to pay if it works.

This drug can be scary at first. Revlimid can depress all cell lines – sometimes quite dramatically. Don’t panic. Dad’s WBCs and platelets had always been in the normal range – it was the HG that was the problem. The first 10 days on 10mg R sent all his cell lines south. Way south. (9.1 hg to 6.0, platelets from 121 to 31.)He was off it for 8 days and then back on 10mg every other day. (Same as 5mg every day.)

That has been a better dosage for him. He tolerates it much better and it appears that his hg is holding longer and that his WBCs and platelets have bounced back into normal or low normal range. Dad was having 1-2 transfusions a week this spring (after 3 1/2 happy years of Aranesp shots every 3-6 weeks). He has become transfusion resistant so it would be a blessing if Revlimid works for him – we don’t have many other options. A transfusion every 3 weeks would be a huge gain for us now.

We’ve hit a few bumps in the road – Dad fell and broke a hip April 22 and is currently in rehab – but I’m guardedly optimistic about Revlimid therapy. We’ll just have to see.

BTW, dad does not have the 5q- or any other mutations. His hematologist says he has had good success with Revlimid and CMML patients.

Good luck with your mom.

[SusanJ]

Oh my goodness! I had no idea that Revlimid was so expensive! My dad’s doctor is going to let us know at our next appointment if he thinks Revlimid would be worth a try for my dad. But my dad is such a tightwad(HaHa) that if he has to pay over $100 for anything, he absolutely refuses to have it! I’m not sure what we will do, but I will find a way to afford it if insurance won’t pay.

[Rackon]

My dad about had a heart attack when he heard the cost of Revlimid!

I just sucked it up and charged that cc I keep for special emergencies. It’s the initial cost that’s breathtaking if you’re on Medicare. (Still, $3500 is a lot better than $7000.)

After that, it doesn’t cost that much more than most other prescriptions. Other orphan drugs can be even more expensive.

It if will help my dad, it’s worth every penny. If it doesn’t, I have no regrets. If the tables had been turned, dad wuld have spent it on me in a heartbeat.

The Revassist program has helped several patients of my dad’s oncologist who need financial help.

Just tell your dad it’s like getting chemo in a capsule (which it is). Chemo is expensive.

[Lori]

I hope and pray that Revlimid works for all of ya’ll parents like it has for my Mom. We did not believe my Mom would make it through the summer and this weeks her counts went up again even without Procrit for two weeks. Hgb and hct are now normal, wbc 2.5 (higher than when she was diagnosed 4 years ago) and plt 58. She told me yesterday all that she did (church, out to eat, shopping for hours) and then came home and read the paper without falling asleep – she was sooo excited about not falling asleep! I had alot of doubts (so did her doc) and her counts dropped so low when she started the revlimid that she was running out of numbers. FYI – after Celgene if convinced that our 80 something year old parents (without testicles and uterus – lol) won’t procreate, they do extend the interview process 4-6 months. Good luck everyone on the finacial end and with Revlimid – you are in my thoughts and prayers.
Lori

[Lydia]

Mom has been on Revlimid for 2 weeks now – 5 mg. Is having some fatigue and the scalp itching lasted only a few days and not severe.

BUT NOW she is experiencing abdominal pain and thinking about stopping taking the Rev. She has no other choice.

She is also experiencing tingling in her spine, but we assume this is a sign that it is working !

Has anyone else experienced this abdominal pain ????

[lbeachbum2]

Just a question how does a drug (Thalidomide)
that was developed over 50 years ago , and giving out to pregnant women like candy at a normal cost ,,, come back with a new name as Revlimid that now cost $8000 per month ,,,, what kind of development cost could there bee for a drug that was banned ???? this is a travesty that the drug company’s take advantage of dyeing cancer patients …. we must all write our congressmen ….. Our family’s work too hard as caregivers , for then to go into bankruptcy so that a drug company can pay its ” Healthy ” shareholders ,,a more then a Healthy dividend this is our blood money ………… Mike11561@aol.com

[Rackon]

Lydia, my dad has had the dry skin and scalp, a bit of diarrhea (which may or may not be related), but no abdominal pain nor spinal tingling.

Be sure you tell your mom’s doctors about these symptoms. They may or may not be Revlimid related. The most common side effects are listed on the Revlimid/Celgene web site.

Beachbum, I share some of your frustration and anger with the obscene prices charged by drug companies but must point out that Revlimid, while a closely related to Thalidomide, is not the exact same drug under another name but a recent, chemically differentiated formulation. (BTW, the price was raised on Thalidomide too!)

The short answer to your question is that Revlimid is an “orphan” drug. Despite the fact that R’s cousin Thalidomide has been around for years, R had to be tested in studies and brought to the market just like any new drug. There is actually a very small number of patients Revlimid will help – it will never make back its development costs. In fact, R is much less expensive than chemo and some other drugs being taken for MDS. Weekly/bi-weekly transfusions and labs for my dad were actually costing *more* than a month’s supply of R.

There is a very good reply to your same post in another thread. As noted there, the manufacturer does have a program to help patients with Revlimid therapy costs who cannot afford it (Revassist).

I understand how you feel. But a letter to our congressional reps won’t do much.

[Author]

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