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Impact of "Right to Try" law on myeloma patients?

by dianaiad on Wed May 30, 2018 1:26 pm

How will the new "Right to Try" law affect those of us in the USA? What's out there that we can 'try,' that we couldn't yesterday?

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

Re: Impact of "Right to Try" law on myeloma patients?

by Boris Simkovich on Wed May 30, 2018 2:32 pm

Hi Diana,

Just an FYI; the commissioner of the U.S. Food and Drug Administration has issued a statement regarding the signing of the Right to Try law. We have the full text of the statement in the Beacon's list of myeloma-related press releases:

"Statement From FDA Commissioner Scott Gottlieb, M.D., On The Signing Of The Right To Try Act" (May 30, 2018)

Boris Simkovich
Name: Boris Simkovich
Founder
The Myeloma Beacon

Re: Impact of "Right to Try" law on myeloma patients?

by borber on Wed May 30, 2018 7:25 pm

For example: Will this Act make available CAR T-cell therapies for those who are not eligible now according to declared criteria? More specifically, for those who failed just one instead of three prior lines of therapy?

borber
Name: borber
Who do you know with myeloma?: me
When were you/they diagnosed?: January, 2017
Age at diagnosis: 60

Re: Impact of "Right to Try" law on myeloma patients?

by Multibilly on Wed May 30, 2018 7:58 pm

Keep in mind that none of the pharmaceutical companies are obligated to approve any given patient under this act.

Additionally, under the act, the patient has to pay for all the drugs and procedures, as well as the cost of managing any side effects. The cost of a single CAR-T cell infusion is close to half a million dollars. All of the other costs associated with the overall therapy and maintenance could easily push that cost much higher.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Impact of "Right to Try" law on myeloma patients?

by Bar-none on Thu May 31, 2018 6:51 pm

Good point Multibilly.

Bar-none
Who do you know with myeloma?: Me
When were you/they diagnosed?: 3/14


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