[LookingForInfo]

Access to medications through trials

by LookingForInfo on Sat Jun 13, 2015 5:17 pm

Hi All,

The reason I am writing is I am trying to help a dear friend. He lives in Italy, he is in his late 60's and he has been diagnosed with multiple myeloma micro molecular K, D&S 3, ISS 1, FISH 13q- positive, 1q+ positive.

He recently underwent transplant autologous, but it appears his condition is not responding too well as initially hoped.

Doctors in Italy have mentioned that certain family of medications may help. Namely:

- Poma​lidomide - carfilzomib - daratumumab - bortezomib - et al.
- Velcade, thalidomide, dexamethasone, melphalan, cisplatino, et al.

However, in Italy these drugs are prohibitively expensive (can be as high as $20K per month). We are wondering if there are ways to purchase such medications at a cheaper price in the U.S., considering that such medications are FDA approved in the US and used more customarily.

Another route we are trying to explore is entering clinical trials for multiple myeloma treatment. Do you have any suggestions?

Can anyone provide any information/advice on how to approach this?

Any pointer or information is greatly appreciated.

Thank you very much!

[Boris Simkovich]

Re: Access to medications through trials

by Boris Simkovich on Sat Jun 13, 2015 6:19 pm

Hi LookingForInfo,

Welcome to the forum, and sorry to hear about your friend's situation.

The best way to find information on clinical trials anywhere in the world is to go the website clinicaltrials.gov . If you use the advanced search function, you can focus the searches on "myeloma" as the condition, and you can also restrict the results to a specific country and, in many cases, specific parts of a country (state, etc.). This link, for example, will take you to a search showing all myeloma-related trials in Italy that are currently recruiting patients.

A trial will be the only way your friend will be able to get access the drugs daratumumab and carfilzomib (Kyprolis) right now, as those drugs are not yet approved in Europe, and daratumumab also is not approved by the FDA for sale in the U.S.

In most cases, myeloma drugs are more expensive in the U.S. than in Europe, so purchasing the drugs in the U.S. will not lead to any cost savings. If your friend wants to purchase the drugs in some other country, through what is often described as the "grey market", then that is some­thing the two of you will have to research elsewhere. To avoid spam and having to differentiate between legitimate and illegitimate information, and because the legality of such importation varies from country to country, the Beacon doesn't permit posting on that subject here in the forum or elsewhere on the site.

All the best,
Boris.