Soliris
 

Does anyone know when Soliris will be available in generic form?

Alexion says that their U.S. patent protection for Soliris expires in 2021.

In Europe it's 2015.

Thanks Neil.
I hope the price will come down when it goes generic. I understand that a company wants to see a profit from meds to recover the cost of development but I feel this company has pushed that to a new level.

As far as I know, it is their only product. They have found a couple of other uses for it, but those conditions are also very rare.

Triumphe,

Thank you for your reply.

Do you think the cost will go down once Soliris goes generic?

I have been told the cost of the med for the facility administering is $400,000 per year. If the facility marks that up 50% (which I've been told is the usual hospital mark up) that is almost unbelievable. Please understand that as a family member of someone with a rare disease, I am very very thankful this med is available. I also understand that pharmaceutical co need to make a profit because they answer to stock holders. This can be heartbreaking for rare disease cases because most of the research money is put in areas where the company will see a better return on it investment. I guess my concern is how American's or their insurance can afford to pay for Soliris year after year.

From the Company website:

"Alexion’s objective is that every patient with PNH or aHUS who can benefit from Soliris® (eculizumab) will have access to Soliris. We work with private and public payers, policy makers, and governments around the world so that patients with severe and life-threatening ultra-rare diseases can have access to highly effective, life-transforming therapies. Because of the efficacy of Soliris, governments around the world are recognizing the value of Soliris and are partnering with us to ensure that their citizens suffering with devastating, ultra-rare disorders have access to treatment."

http://www.alexionpharm.com/patients/support.aspx

I think Leigh Clark at www.AAMDS.org might know how to help you get assistance.

BTW: I believe this is the most expensive drug on the market. I heard of one on the news last week relating to liver failure that may cost more, but who's counting at these prices.:(

Thanks for the imformation.

PSI?
 

You probably have already looked into this, but just in case, my hospital helped me get a grant from PSI. It's a company that helps cover high prescription costs.

https://www.patientservicesinc.org/

Also, I know it depends on the insurance company, but my Soliris treatments were classified under my Major Medical instead of Prescription because I received them at the hospital. That alone really helped.

Then the PSI helped cover the remainder.

I read a few articles in 2011 siting it as the most expensive drug in the world at the time, also.