I am smouldering and not in treatment, but during open enrollment last year in the fall, I made sure the usual mm drugs were covered. Now I am finding the formulary is dropping drugs. These are unrelated to myeloma but I am upset to think they can do this during the year. Can they also drop some of the previously approved myeloma drugs? Would I have any recourse?

Hi all~ I’m wondering if anyone in the 55 & under group who has applied and received Social Security Disability would have the time &/or energy to talk with me about your experience. I just applied online in February. Thanks for your help!

New Social Security overpayment law goes into effect today. If you were notified by the Social Security office that you were overpaid you used to be able to repay the department at 10% per month until it was repaid. that is still ineffect for overpayments made prior to March 27, 2025. For Overpayments that occur after 3/27/2025, you will have to repay it 100% of payments until the overpayment is payed back. Over payments may have happened if the Social Security department miscalculated your payments or if you failed to update earned income with them. You can appeal the issue or if you agree and cannot afford to pay it back as stated, you can request a change in the overpayment recovery rate. Go to ssa.gov for more information

Amyloidosis Support Groups In-Person Meetings https://www.amyloidosissupport.org/upcoming_events.html April 5th, 2025 (VA, D.C., MD) (Drs. Ibrahim Saeed, Timothy Welch, Sumeet Mitter, Farooq Sheikh, Joban Vaishnav, Ana Barac, Amitabha Sarma, Marion Cole, Carol Ann Huff,, Neeraja Tandra, Carmen Elena Cervantes, Robert Bulat) April 26, 2025 (PHILADELPHIA MEETING) (Drs. from UPenn and more to follow) April 26, 2025 (PORTLAND OREGON-OHSU) (Drs. from OHSU and more to follow) These are small and topic-targeted meetings, where you have the chance to meet with local experts and ask personal questions face-to-face. Also, a place to get to know your doctors personally! I highly recommend it to everyone. Register here: https://www.amyloidosissupport.org/upcoming_events.html

Would like to speak with someone with same diagnosis

On Wednesday, April 2, I am participating in a roundtable webinar with the Cancer Support Community on Utilization Management. We will discuss the recent prior authorization and formulary changes being used by insurers to delay or deny patients’ access to Libtayo or Revlimid. As I have recently experienced this denial of Revlimid, that will be my role on the panel. If you are interested, here is the link to sign up; https://events.zoom.us/ev/Aj20IEYrxUTUTJvmuZRZYoK0coIymO172n9rJbxSXr4y7Edaj4J9~AuKsJhJs6t_WcTqHERh5jfXlOUo0_ccTSEwY2RzY62ezzKufnBEdtv7wYQ?eType=EmailBlastContent&eId=117faff7-9e6b-4c66-a0ae-c1f626f9279e