question about REVLIMID-please help!

[VIOLA]

I have read that Celgene received approval for Revlimid for treatment patient with transfusion-dependent anemia. I try to find out something about available this drug in Poland and possibility of import this to my country, but now I know that Revlimid is available only in U.S. This sytuation could be difrent in next time, but presently it is impossible to import this (this information I have received fron pharmaceutical wholesalers in Poland, which is doing import drugs from whole the wolrd).
I have a question: I have also read that Revlimid is expected to cost $ 215 for each 5 mg capsule and $ 225 for each 10mg capsule. Can You tell me is this true information? Also, I want ask You who is distribitor of Revlimid? (I know that it isn’t Celgene). Thank You for help and best wishes for all od You!!!

[Harold]

I believe the prices you quoted are close to the prices at which the drug will sell in the US. A lot of patients will have insurance which will pay for some or most of the cost of this drug. Celgene and other agencies may also assist patients with the cost of the drug. Revlimid is available under a special restricted distribution program (RevAssist). Only physicians and pharmacist registered with RevAssist will be able to prescribe and dispense Revlimid. Normally, pharmacist obtain drugs through a wholesale drug distributor, but with the RevAssist program, it may be possible that pharmacists will order the drug directly from Celgene.

[Suzanne]

I believe there is another requirement for taking revlimid. It is approved only for those with the 5q- chromosome change. I read that Doctors have to get special traing to get it. The controls are because it is a dirivitive of thalidomide and therefore a real danger to unborn babies.

[VIOLA]

Harold, Suzanna thank You for Your posts. My Dad has MDS 5q and Revlimid is only hope for us, because another drugs didn’t work.I wish You all the best!

[Suzanne]

Then I hope you find a way to get it.. There was soneone else on the forum that was able to get a drug out of the US. Can’t remember which drug it was a but I think they came into this country and carried it out after getting some kind of permission from their government or something. Someone here will remember more.

[patti]

Hi Viola,

Margaret and Luke in Canada got government approval to come to America and take Vidaza back to Canada. Margaret, if you’re still here, can you share with Viola the process you went through to do that? It may be somewhat different for Poland, Viola, but it might give you a place to start.

Patti

[VIOLA]

Suzanna, Patti! Every information can help us. Maybe Revlimid will be approved in Europe, but we don’t know when? I know from Celgene that it is planed to include the hospltals in Poland in next clinical traials, but we aslo don’t know when? I beleive that my Dady will be strong and we will find a way to get it! Thank

[VIOLA]

Thank You!

[sugarwhale]

Dear Viola,
I believe Revlimid is approved in Switzerland. OK, it isn’t Poland; but it’s closer! Best of luck to you!
~~~ Janet

[Brenda P]

I’m SO happy this drug is finally approved! I just found out my dad has -5q, so JUST IN TIME, he’s been sent to the ER twice in the past 2 months for dangerously low blood counts.

Does anyone know about patient financial assistance for Revlimid? It’s currently not reimbursed by Medicare because it’s so new, and it supposedly costs about $6000/month. EEK!

[sugarwhale]

Dear Brenda,
Our fine doctor put my mom on Revlimid today (although she won’t start it for a week). He told us that there are TWO pharmacy companies in the U.S. now dispensing it. No more, only two! Yes, it’s prohibitively expensive. However, insurance pays all or most of the cost. My mom needs only to pay a co-pay, which will amount to $35 per month. I hope this helps. I feel sorry for anyone without insurance. Something about it isn’t right. Revlimid, and drugs like it, shouldn’t be available only to the affluent. The entire System seems to be built on GREED. I’m sorry to be so vocal; but this isn’t right. And what about people like Viola? Don’t they deserve just as much? Anyhow, I hope this information helps someone.
~~~~ Janet

[jeanswear]

Brenda, please contact Celgene about that directly. There was talk about them working with patients that cannot afford the medication.

Celgene Corporate Headquarters
86 Morris Avenue
Summit, NJ 07901
(908) 673-9000

Sugarwhale, Viola is in the same position that any of us would be in if the med was approved in the EU first. Remember, most meds get EU approval first and everyone tries to get them overseas. This time the role is reversed. Biotechs can only apply for approval in one country at a time.

Hope this helps
Ben

[g-masews]

It is depressing that the cost of drugs is so prohibitive sometimes. At the MDS conference in July, they did a presentation on the cost of developing new drugs like Revlimid etc. Between research, development, clinical trials that involve years and thousands of people, and then applying for FDA approval, drug companies spend Billions (yes, billions) of dollars and then it may not be approved after all. And for patients like us, with a disease that is not only rare but only a few of us even fit the criteria for use, it sometimes becomes cost prohibitive for them to even make the drug. The seminar was a real eye-opener. This is why countries with socialized medicine depend on us to do the research and development, because they can’t afford to and why it is hard to get the drugs in those countries because their governments won’t pay what it costs celgene etc. to make it. It’s a terrible quandary and I wish someone could come up with an answer to the health care issue. I don’t have it.

[patti]

Well said, g-masews. I think the “on the whole” answer to health care is removing government barriers. Whenever there is a monopoly on anything (as in socialized medicine countries), things are NEVER as good as when you throw competition into the mix. Did anyone watch 20/20 last night? It was an excellent example of government control (and I don’t usually watch TV).

How do those government barriers get removed? The FDA? Well, when drug companies were coming out with new drugs years ago without the FDA the patient was willing to take on a certain amount of risk of trying those drugs without some panel to review every nitty gritty person that took it and not sue the company for troubles. The problem today is mostly people. People think the US government ought to take care of them. They ought to have their drugs safe (but they don’t want to have to wait for what the FDA puts a drug company through), they want their drugs paid for (but they expect everyone else to cough up the tax dollars to do that). The bottom line is, there was a day and age where people paid their own bills (and they were cheaper because of fee for service plans), people saved for their own retirement or had family help them (they didn’t EXPECT social security to be able to support them). We’ve become a lazy society that wants their government nanny to do everything for them. And what you get is a slow moving, horribly inefficient system where everyone just screams for more regulation to fix all the problems created by those government programs. I say gut the whole government system and start over the way it was when our signers signed the constitution. They told us to keep government limited and it’s to our peril if we don’t. And we haven’t, so here we sit.

I’m going to give you an excellent example of what I mean.

We do not have family insurance right now because we just started our business a little over a year ago and we’re just not there yet. But since we still have to go to the doctor and dentist, etc. we have discovered one very important thing. We pay A LOT less than those who have insurance do. Ya know why? Because the doctors are so thrilled not to have to pay to bill the insurance company, to have to write a portion off because the insurance company says it’s not “reasonable and customary” that they automatically give us a 10% to 25% discount(depending on the doctor)because they say we’re saving THEM money by paying cash. When we add up what we would pay in insurance premiums with what we pay as a fee for service patient, it is so much less as fee for service that it makes it hard to even want to get insurance. If doctors could cut their fees by 25% think about how much cheaper things would be?

That just touches on the daily issues. There are catastrophic issues that are a whole other discussion.

This is a complicated issue but the blow hards in Washington will never solve it. When people decide it’s time for everyone to take responsibility for their owns lives instead of everyone having some sort of “disorder or disease” (ever heard of ADHD?) then and only then will any of these issues change.

Hey, Caroline, see… told you we were political in our home.

Have a nice day all

Patti

[Brenda P]

I have historically agreed with you, g-masews, on the price of rx drugs because of the costs of research and development… But working in pharmaceutical advertising, I see how much the sales reps are making, and how much money the drug marketing managers are making, and how much money the PR agencies and advertising agencies and everyone else is making, and it simply HAS to inflate the price so much.

Nevertheless, I still feel that most biotech drugs and orphan drugs (like Revlimid) and vaccines are worth the cost.

[Author]

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