Two days on Copaxone

[ccorina]

I've now had 2 injections of copaxone and must say I'm very surprised.  I was starting to get worried because of the amount of talk lately about skin reactions.  

I had just minor minor burning for a minute and a slight red spot less than a dime size.  The nurse who trained me for the first injection said it was the least reaction she's ever saw.

So I just thought I'd post so that people searching could find some good news as well!  I was also surprised that it took less than a month since my Doctor prescribed it to the nurse being at my door.  

The one thing I'm not thrilled about is the price.  I have some provincial government funding plus my husband's work benefits and I still have to pay $100 a month!  Not that easy on one income.  But I know that there are people who have it a lot worse off than me.

Corina

[bubbles_04]

Alex,

I see your point and I am saddened to hear you are out of pocket so much for treatment. I just think that is wrong. I agree the drugs can help people and it will save money for wheelchairs etc. I just think its wrong to make so much money off of the sick. How do these people sleep at night? I am lucky that if I ever lose my health insurance I can go back home to the UK where it is totally free for me.

Alex, you are battling so many things in your life. Thank you for being strong and giving me perspective. I still think its all wrong though and wish the system was more patient friendly rather than "businessman wallet" friendly.

Stay well Alex, keep fighting!!

[ccorina]

Alex,

rant away!  you have some valid points about drugs saving money but for many its irrelevant if you can't afford either.

we moan in Canada about costs but really have no idea!  my husbands insurance costs 150 per month and that covers 80 percent drugs with no maximum.  it also covers 80 percent basic dental and 50 percent big dental.  there's also misc. stuff but most is already covered by government.

and for low income there's always coverage for kids especially for drugs and dental.  for adults I think every province has some kind of means tested drug coverage.

thanks for reminding me how lucky I am to live in a socialist country (that dreaded word America seems so scared of).  I hope it stays that way.

Corina

[HVAC]

Bubbles,
  I am a NMSS advocate and go to D.C. every year to ask for funding for MS research. Congress basically gives the money to groups who are the most vocal and visible and not enough people tell Congress MS funding is important. In these times lawmakers do not want to spend money on research all the cut the budget stuff. They only ones with real motivation are the drug companies. To be fair the drugs save a lot of money in the long run. If we did not have them more of us would be more disabled. Wheelchairs, retrofitting houses, vans, nursing care, nursing homes, etc. are more expensive. I would pay out of pocket for a DMD than pay for all the other. I know people who can't afford the right wheelchairs and that is a tragedy. Heck my Cancer drugs are costing me $20,000 a pop out of pocket, what my insurance will not pay. What choice do I have lose all my retirement money or die in a year or so? I have learned to just to accept that this is my life. No one is going to help me not the hospital not the government. I do not qualify for anything. I will not for 16 more years and I will either be completely broke or dead by then.

CCorina,

Then people talk about how long it takes for diagnosis in the Canadian system. I was paying full price in the great U.S. system it too 46 years to be diagnosed with MS by then it was basically too late for a DMD. It took four years to be diagnosed with a bad Cancer which had spread I have a less than  5 year life expectancy. I went to all kinds of specialists and had all kinds of misdiagnoses. I am still getting bad care for both. I pay $400 out of pocket to have a Neurologist look at me and say well your MS is progressing and there is nothing I can do. I do not even get to see my cancer doctors during my chemo. I see them in six months. I pay $600 for the biggest group insurance in the State and I huge deductibles. It is through my husbands work and if I did not have it no one would sell me insurance.

Sorry form my rant.

Alex

[ccorina]

this drug company stuff is all very disgusting.  it makes me very frustrated that I have to take a drug from them and give them my money directly or my tax money!  

as if it weren't bad enough to pay the costs for these drugs, there's actually people (rich, white, rightwing) in Canada advocating for private health care!  they really should read forums like this and see the realities.

[bubbles_04]

I also have little to no site reactions from copaxone, so far so good for me too. Hopefully it will work for me.

Alex, I agree with everything you said there. It's all about business. MS is such a fickle disease and with no real good options for us these drug companies can make drugs that don't even need to be that affective. I'm sorry but 33% reduction in relapse rate is not enough. It's just not good enough, but its the only option we have and we want to try something. I hate how these companies prey on the sick.

I think that more funding should go into unprofit research so that maybe a really cheap and affordable treatment can be found. Theres a researcher here at UCI working on treating mice with MS with sugar. He got one question from the audince. "when are you going to start clinical trials?" and his reply "pharma aren't interested in this treatment as there is no money in it, therefore it's taking longer to get the funds". Pharma companies....... errrrr

Shared solutions are now calling me every week because I said my neuro was thinking of switching my treatment. They just see the insurance money going to someone else......

[HVAC]

They are also in competing with all the other MS drug companies to keep your business.. Teva mostly does generics and breaks everyone else's patents. They own hundreds of generic drug companies around the world. The only patent medicines they do are high price MS and Cancer drugs. Copaxone took them over twenty years to get on the market. They tried it as a pill first and it did not work in the digestive system. They had hopes on getting the first oral out after Copaxone but that did not work so they had to make more profit on Copaxone. They call it their goose that laid the golden egg. They promised there share holders big returns in recent years and things did not pan out. Until they have a successful oral drug Copaxone prices will go up and up. In the States many insures are going from a a flat fee copay for the MS drugs to a percentage of the whole cost of the drug. Right now Teva could pay everyone's copay and make a profit. Back when I was on Copaxone I had trouble getting copay assistance they made it very hard. I had to fill out applications every few months, it took months to process and I was always coming down to the wire with refills wondering if they would pay. They did not pay if your application was approved the day after your prescription went through. When I had to stop taking the drug they called me all the time and would do anything to pay my whole copay. They still call years later to get me back. They lost a lot of money on me and they knew it. They are much better with the copays and make it much easier for people now that the oral drugs are coming on the market and they have so much competion. Read there information for stockholders it tells you what they are truly thinking because that is who they really work for. It is all business for these drug companies. Research and development is where the cost is and Teva mostly does generics so they have little R&D and do not have to advertise generics. The oral drugs are way more expensive so Copaxone will not come down in price it will increase but they can pay for the copay and still make a profit. Of course they make most of their money on the U.S. market since the government does not negotiate for everyone like in some countries. In the U.s. they deal with specialty pharmacies which also want the prices kept high for consumers. They make more on the U.S. than all the the other countries in the world combined.

Alex

[ccorina]

Thanks for your replies.  I'm going to look into financial help through shared solutions!  I guess it would pay for them to have some because they are still getting so much from the gov't and private insurance companies.

Corina

[HVAC]

Hopefully it won't happen to you. Some people do not have a reaction. For me I was fine no reaction until days 8 then everywhere I had injected in the eight days blew up to plumb size itchy welts. It is natural for the body to say hey this is foreign. It usually goes away in a few days. Topical antihistimines help. You have copay assistance where you live through Copaxone? Capaxone the generic by another company will be on the market in the US one of these days and it might bring prices down. It might be available in other countries.

Alex

[saucygrl]

Shared Solutions offers financial help.  Give them a call to see if they can help you!

Chris