Announcement

Collapse
No announcement yet.

ocrevus approved

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Hi temagami,

    So trials are still in progress? Even when the drug is being approved by the FDA?

    Very interested in hearing your experience thanks for sharing so far, can you provide any details from your experience regarding prior testing before the first infusion, some of your symptoms or just being SPMS that confirmed help to decision to go forward with the trial.

    How long did the first infusion take, did you have many facilities to get it at and are the future infusions supposed to take the same amount of time or shorter?

    Any details you can share is appreciated. Thanks. keep feeling well with it!

    Comment


      #17
      [QUOTE=bluegiraffe;1501087]Hi temagami,

      So trials are still in progress? Even when the drug is being approved by the FDA?

      Yes, there are at least two, maybe three trials. Look on the clinicaltrial gov site. They are looking at long term safety and a trial for folks with RR who have not had any other DMT.

      Very interested in hearing your experience thanks for sharing so far, can you provide any details from your experience regarding prior testing before the first infusion, some of your symptoms or just being SPMS that confirmed help to decision to go forward with the trial.

      My longest delay was in having my WBC return to normal after Gilenya- took 3 months. The testing included walking, eye chart test, blood, pee, and MRI for a baseline measurement.

      Went with ocrelizumab b/c I had failed Copaxone and Gilenya. On Gilenya had gotten a new lesion on spinal chord. With Gilenya I had had no new lesions in 4 years but had 2 relapses per year. Neuro was offering Tysabri and that was going to be the plan, but I am JCV+ and even though it was a low number, Tysabri scares me so I was looking for other options. Seems that Ocrevus is about the same as Tysabri for efficacy without the high risk of PML. Since I was already risking cancer with Gilenya, it seemed not too big of a leap to have a similar risk with Ocrevus. What attracted me as well was the chance of not having so many relapses. I will be losing my health insurance in less than two years and am hoping that they offer to make the trial an extended one.

      How long did the first infusion take, did you have many facilities to get it at and are the future infusions supposed to take the same amount of time or shorter?

      There are many trial sites for the trial I´m in- all over the US. I visited two and then picked the one with the people that I connected with. The first infusion took a while- I got there at 8 and left at 2. I had to have a neuro exam prior to the infusion for the trial. The infusion started at about 10:30. You get benadryl, a steroid and then the Ocrevus. They observe for one hour after to be sure there´s no reaction. The benadryl knocked me out for two hours of nap. The next infusion should be shorter b/c there will fewer tests prior to the IV. I am a needle phobe and dealt with it by not looking. The day after it was as if I had not had a new drug in my body- as in no ill effect. With two relapses a year, I should know soon enough if it is working.

      Any details you can share is appreciated. Thanks. keep feeling well with it

      Comment


        #18
        Originally posted by Marco View Post
        65k makes Ocervus the second cheapest drug that we have. Only Glatopa, generic Copaxone, is cheaper for the medication. For Ocrevus you still need to add two days in the infusion center to the price .. something pills and self-injections do not have.


        Like all other MS medications, Ocrevus does have a financial assistance program: https://www.ocrevus.com/patient/financial-support.html
        My Lord, that is terrifying - $65,000 a year the second cheapest MS treatment in the US.

        Here in Australia my $2445 per month Gilenya costs me $35. I finally got on some form of Social Security, so next month's should only cost $7.50.

        Comment


          #19
          The retail cost of these drugs is like buying a house every two years. But I think the percentage of people who can actually pay that is so low that the whole pricing scale is distorted. There are so many different kinds of assistance. Some comes from outside charities but a lot of the assistance is provided directly by the pharmaceutical companies.

          Hospitals and infusion sites offer assistance programs but they negotiate with the companies to settle on a price. Health insurance companies slash the allowed amount...

          The waters are so muddy, who knows what the true cost of the drug is.

          I was getting so tired of all the applications and making phone calls to make sure all the money was flowing where it was supposed to go, when I found an NP who said, "you don't have to worry about all that. That's our job. We will take care of it. That's what we are here for," I was thrilled!

          Anyway. It's nice to hear Ocrevus is going to cost less than the rest.

          Comment


            #20
            Originally posted by palmtree View Post
            ...
            I was getting so tired of all the applications and making phone calls to make sure all the money was flowing where it was supposed to go, when I found an NP who said, "you don't have to worry about all that. That's our job. We will take care of it. That's what we are here for," I was thrilled!
            ...
            NP. Nurse practitioner?
            ~ Faith
            MSWorld Volunteer -- Moderator since JUN2012
            (now a Mimibug)

            Symptoms began in JAN02
            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
            .

            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

            Comment


              #21
              Originally posted by Mamabug View Post
              NP. Nurse practitioner?
              Yes. Nurse Practioner.

              Comment


                #22
                Had the second half of the first dose yesterday. This time there was no reaction at all to the drug itself but the benadryl portion was painful and made me involuntarily wince multiple times. Thankfully that ended once it was infused. It did consume the day. I arrived at 8 and left just after 2. Today I am feeling normal. I will get the benadryl next fall with the first full dose. If I don´t have a reaction, they will cut the next benadryl dose in half.

                Am grateful for the trial as the neuro said that patients wanting ocrevus commercially are bumping into the requirement by genentech that pharmacies pay upfront for the first dose and then get reimbursed. This constricts the drug pipeline.

                Now I have a long break from MS meds until next fall while I hope to detect positive changes or at least nothing negative.

                Comment


                  #23
                  Temagami, wishing you the best of luck. I'm hoping to be on it soon myself.
                  God Bless Us All

                  Comment


                    #24
                    Originally posted by REG53 View Post
                    I saw my neuro today and he is very excited about Ocrevus. He is testing my blood and he wants me to have an mri just to have as a starting point. It will go thru the medical part of ins. and they are checking to see if my ins. (which is medicare) will cover it. If everything is go, it will probably be May until they will start infusions.
                    REG53

                    I really hope it all goes well for you! Please let us know how the insurance works out and how you do on the new med.
                    Echo
                    DX 2007 Started Ocrevus on 2/14/2018

                    "Some where over the rainbow...."

                    Comment


                      #25
                      Thank you Echo and I will.
                      God Bless Us All

                      Comment


                        #26
                        Crazy prices

                        Definitively prices in the US are stupid. Can someone explain me why a treatment like Gylenia, Tecfidera cost 4 to 10 times more that the same brand drug in Europe? Not speaking of genreics, generic Tecfidera costs $300/Month! And speaking by Ocrevus, there are countries where you can get the Brand drug from Roche at $5k per infusion, i.e. 10k/year. Why does it cost 65k in the US?

                        Comment


                          #27
                          Originally posted by OlivierSPb View Post
                          Definitively prices in the US are stupid. Can someone explain me why a treatment like Gylenia, Tecfidera cost 4 to 10 times more that the same brand drug in Europe? Not speaking of genreics, generic Tecfidera costs $300/Month! And speaking by Ocrevus, there are countries where you can get the Brand drug from Roche at $5k per infusion, i.e. 10k/year. Why does it cost 65k in the US?

                          A few thoughts for you ...



                          The biggest cost driver is drug manufacturers are allowed to set their own prices in the US. In most other countries, the government sets the price point and if the company doesn't accept the price than the drug will not be approved. So the US generally has a larger medication selection, but at a substantially higher price point. The US also subsidizes R&D and also lower costs medications to most of the world. The US gives billions and billions of medication to other countries and that cost gets passed along to US consumers. Just because a medication has an astronomical list price that doesn't mean insurance companies are paying that price. Private insurance companies negotiate lower drug prices than list. Unfortunately, Medicare is prohibited from negotiating lower price points directly with the manufacturer.


                          Patients also want to cap their medication expenses so drug companies generally offer co-pay assistance programs. So a drug that lists for $6k/month is reduced to $4k/month by a commercial insurance company. Then the drug company steps in and provides co-pay assistance to the patient who ends up paying $50/month or less. So the numbers start off extremely inflated, but the consumer rarely gets stuck paying anywhere near list price.

                          In the US, manufacturers are also allowed to market directly to patients via magazine, television, radio and even direct mail advertising. Direct marketing is effective and will often have a patient telling the doctor they want "drug X" that they saw on TV. Doctors have been sued so frequently that many now practice defensive medicine and give in to patient demands. Doctors also may not prescribe cheaper, but as effective, medications if cost information is not readily available. In addition to manufacturers marketing medications directly to patients, lawyers frequently market class action lawsuits directly to patients as well.

                          Government inefficiency and bureaucracy also drives up the cost of healthcare. The FDA is often slow to approve both new medications and generic alternatives. Government and insurance red tape is another cost driver. Doctors hire small teams of people to deal exclusively with pre-authorization, special paperwork and coordination between insurance and specialty pharmacy. I do not know of any MS drugs that do not require pre-authorization from an insurance company.


                          The FDA is slow to approve new medications and also generic drugs. Pharmacists cannot always move patients to lower priced generics without patient consent. The brand medications comprise only about 10% of filled prescriptions, but they account for over 70% of all medication costs. Medication costs are under 15% of our total healthcare expenses so Americans are getting fleeced by other areas as well.

                          Drug companies get patents for 20 years so they can recoup R&D costs and turn a profit. That keeps generics off the market to lower costs. In the US, R&D costs are astronomical where one Phase III tests costing over $100 million. According to Tufts University a drug costs about $800 million to bring to market in 2003. In 2014, the same medication would not cost $2.6 billion to bring to market. That's a lot of money considering only about 1 in 5,000 experimental drugs make it to market. Investors would be less inclined to invest in Biotech if the potential margins were small. An investor would take that same money and drop it into a McDonald's where small profit is almost guaranteed.

                          Comment


                            #28
                            Ocrevus

                            I have just been approved through my ins. Although I wasn't expecting to be denied, my nuroligst said it's the ONLY treatment for ppms therefore they can't really deny because there is no other option.
                            I'm waiting for a Mammogram & shingles vaccine before I can begin.
                            Hopefully I won't get cold feet due to the unknown. I will be cleared to start mid May....





                            I really hope it all goes well for you! Please let us know how the insurance works out and how you do on the new med.[/QUOTE]

                            Comment


                              #29
                              I was contacted by the company and was told even if my ins didn't cover it, they have program in place to help.
                              They are even helping with the infusion center.
                              Contact them for anyone who can't afford $65,000 ever 6 months

                              QUOTE=Marco;1502245]A few thoughts for you ...



                              The biggest cost driver is drug manufacturers are allowed to set their own prices in the US. In most other countries, the government sets the price point and if the company doesn't accept the price than the drug will not be approved. So the US generally has a larger medication selection, but at a substantially higher price point. The US also subsidizes R&D and also lower costs medications to most of the world. The US gives billions and billions of medication to other countries and that cost gets passed along to US consumers. Just because a medication has an astronomical list price that doesn't mean insurance companies are paying that price. Private insurance companies negotiate lower drug prices than list. Unfortunately, Medicare is prohibited from negotiating lower price points directly with the manufacturer.


                              Patients also want to cap their medication expenses so drug companies generally offer co-pay assistance programs. So a drug that lists for $6k/month is reduced to $4k/month by a commercial insurance company. Then the drug company steps in and provides co-pay assistance to the patient who ends up paying $50/month or less. So the numbers start off extremely inflated, but the consumer rarely gets stuck paying anywhere near list price.

                              In the US, manufacturers are also allowed to market directly to patients via magazine, television, radio and even direct mail advertising. Direct marketing is effective and will often have a patient telling the doctor they want "drug X" that they saw on TV. Doctors have been sued so frequently that many now practice defensive medicine and give in to patient demands. Doctors also may not prescribe cheaper, but as effective, medications if cost information is not readily available. In addition to manufacturers marketing medications directly to patients, lawyers frequently market class action lawsuits directly to patients as well.

                              Government inefficiency and bureaucracy also drives up the cost of healthcare. The FDA is often slow to approve both new medications and generic alternatives. Government and insurance red tape is another cost driver. Doctors hire small teams of people to deal exclusively with pre-authorization, special paperwork and coordination between insurance and specialty pharmacy. I do not know of any MS drugs that do not require pre-authorization from an insurance company.


                              The FDA is slow to approve new medications and also generic drugs. Pharmacists cannot always move patients to lower priced generics without patient consent. The brand medications comprise only about 10% of filled prescriptions, but they account for over 70% of all medication costs. Medication costs are under 15% of our total healthcare expenses so Americans are getting fleeced by other areas as well.

                              Drug companies get patents for 20 years so they can recoup R&D costs and turn a profit. That keeps generics off the market to lower costs. In the US, R&D costs are astronomical where one Phase III tests costing over $100 million. According to Tufts University a drug costs about $800 million to bring to market in 2003. In 2014, the same medication would not cost $2.6 billion to bring to market. That's a lot of money considering only about 1 in 5,000 experimental drugs make it to market. Investors would be less inclined to invest in Biotech if the potential margins were small. An investor would take that same money and drop it into a McDonald's where small profit is almost guaranteed.[/QUOTE]

                              Comment

                              Working...
                              X