SPINRAZA FOR FOREIGNER

[deann-r]

Hello Mehdi,
Thank you for joining us. Congratulations on your studies, going for your PHD is quite an accomplishment. What field is your focus?

I’m sorry to hear your SMA has been progressing. Unfortunately I know Spinraza isn’t readily available world wide however more countries are approving it as time passes. As other treatments come down the pipeline I hope more people will gain access to Spinraza.

In the meantime, please don’t focus on what you can’t do or what you could do if you were on Spinraza because even though it is a wonderful drug it won’t make SMA go away. It doesn’t really turn back the clock, it’s more like hitting the pause button. My best advice is just to keep living your wonderful life, and take things day by day.

Hugs!

[mehdi]

Hi DEANN,

many thanks for your pretty advices. I work on finance topics ( you can see my articles on the Net).

Well I hope to  hit the pause button of SMA monster. but the expensive price of Spiranza is real obstacle. I think the unjustified and inhuman price should be negotiated.

Best wishes,

[kevin-schaefer]

Hey Mehdi, thanks for joining, and for sharing your perspective!

Echoing what DeAnn said, it’s unfortunate that Spinraza isn’t readily available in every country. At the same time, it is a treatment, and not a cure. I’ve been on Spinraza since November 2017, and while it has great benefits, it’s more designed to stop the progression of SMA. I certainly hope that you are able to receive this treatment eventually. Yet, like DeAnn said, don’t let it keep you from living your life.

I want to invite you to read my weekly column on our main website: https://smanewstoday.com/category/embracing-my-inner-alien-a-column-by-kevin-schaefer/. I write about living life with SMA, and how I’ve come to embrace my disability as a key part of my identity. Hopefully, you can find some comfort here through my absurd stories.

Please let us know if there’s anything we can do, and I hope that the days ahead are better.

Best,

Kevin

[ryan-berhar]

Hey Mehdi, unfortunately, I can’t be of much help to you here. After pursuing Spinraza for about two years, I finally gave up, because it was just setback after setback. I really don’t mean to discourage you, but that’s my story. As far as cost, I do believe Biogen will provide it for free after two insurance denials. If you have any other questions, we’ll do our best to help you. Welcome aboard!

[mehdi]

Thank you guys

Rayan Iam very sad for your bad experience with Biogen. Unfortunately Spiranza is the unique hope For SMA patients.

Do you know why the price is horribly expensive ?

 

 

[deann-r]

I think there are several reasons why it’s so ridiculously expensive. First I think development costs for medications for rare diseases are very expensive. High prices help recoup those costs and probably help with developing new and better treatments for not only SMA but other diseases as well. Another reason is that the market is relatively limited. It’s not like a medication for let’s say diabetes where I’ve seen affects something like 300 million people world wide. The rate of occurrence for SMA is much less. When you can sell a lot of the medication it can reduce the cost. It also doesn’t help that at the moment this is the only treatment for SMA. Without competition to drive prices down there’s not really a choice but to pay the higher price. In my opinion as other treatments become available we’ll see prices drop. It was developed by a capitalist society after all, so my guess is the company wants to take advantage of the profit potential while it’s there. I also think the price is set high so the company can negotiate with insurance companies and other countries. Even though there’s a set rate I suspect not everyone pays that price. Those are my opinions as to why the price is so high, but I do agree with you in that I wish it was more accessible worldwide at a lower cost.

[lupa-f]

This is a little bit of a pet peeve of mine regarding Spinraza.

“First I think development costs for medications for rare diseases are very expensive.”

This is only sort of true, and definitely not true in the case of Spinraza. Spinraza (nusinersen) was developed in a by Ionis and Cold Spring Harbor, it was then bought by Biogen for a small amount upfront and about 12% of the revenues per quarter from Spinraza. Biogen is making about an 80% profit margin at the very least off of it. Their CEO even admitted a big reason the cost was so high was because people had no other choice. Biogen did spend the money for the clinical trials, but even that is misleading as the government gives companies up to 50% of the cost of trials for orphan (rare disease) drugs back to the companies as a tax credit (the company’s tax bill is reduced by that amount, it’s a straight cash subsidy). Companies are purposely now trying to limit that amount of people a drug covers by making very many small variations of the same treatment so that each version counts as an orphan drug so they receive those tax credits.

There have been articles on this site from an independent observer stating that Spinraza costs more than 5 to 8 times what it should: https://icer-review.org/announcements/icer-issues-final-report-on-sma/

[deann-r]

Great discussion! Valid points Lupa. Another thing the pharmaceutical companies don’t consider in their pricing is all of the other costs surrounding our disabilities. From equipment to other medications it all adds up. As someone who does have access to Spinraza I shudder thinking about how much it’s costing.

[ryan-berhar]

You also have to remember that Spinraza injections are literally ongoing for life, so naturally it’s going to be expensive. There are costs beyond the drug itself to account for.

[kelly-miller]

Thank you very much Lupa for not only posting the link to ICER’s report but also for your excellent explanation of the workings of the price points for Spinraza! While I don’t personally get the treatments (for the same reason Ryan gave), I do keep up with it and have gotten into discussions about the exorbitant cost involved. I understand the idea behind capitalism and Biogen wanting to make a profit, but I don’t think they should be expecting not to have some backlash because of the extent of their profit.

Medhi, welcome to our SMA community! You will find that we discuss just about everything here, and your opinions are always encouraged & respected. I was wondering… Is Spinraza approved in Morocco? From everything I’ve read, it doesn’t look like it is. Based on articles I found, your healthcare system is very connected to France. It’s my understanding that if you want a major medical issue handled, you get your doctor or surgeon from France. I was thinking what if you tried to get Spinraza from France. It has been approved there. If you have medical insurance that works in France maybe that would be willing to negotiate for injections for you. If you’re willing to fight with them to get it, that might be worth looking into. I have given the link below to an article from SMA News about a girl in Poland whose family moved to France so that she could get the treatments. You may not want to move there, but since your country has an agreement with France for Moroccan citizens to get medical treatment, it might be worth a shot. Everyone who gets the injections here uses their medical insurance to pay for it because we can’t afford it either. I hope this helps a little bit.

https://smanewstoday.com/2018/08/30/sma-patients-meeting-in-poland-demand-access-to-spinraza-lifesaving-therapy/

[mehdi]

thank you

I agree with you Lupa. Spiranza price is unethically high ” maybe it’s theft or murder !!! …” there is one SMA for each 10 000 person so the campany can  earn about 22.901.200.000 Dollar just in USA that’s unfair even if injections are literally ongoing for life (RYAN). At this price we can build factories , hosptals or small city

special thanks for the best kelly over the world. I went to  paris last year however the neurologist didn’t know Spiranza. also my insurance don’t work on european area.

I think associations, senators and nonprofit organization must renegotiate the price

Sorry for my bad english. I prefer to speak french or arabic