Thread: DC-Advocacy Day
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Old 05-10-2016, 06:00 PM #10 (permalink)
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Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 2,277
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Default Re: DC-Advocacy Day

We just got back to the room after 5 meetings (our two Senators came to us at the same time so we didn't have to do 6 meetings). I'm drained. Exhausted. Physically and emotionally. It was a good day; we had mostly positive meetings and things ran smoothly.

The only resistance we ran into was in one office over Dormant Therapies. Apparently one party (gonna stay non political here) feels the drug companies should pursue those drugs with exhausted patents out of the goodness of their hearts since they are already making obscene profits on other drugs.

I asked my darling to remove his hearing aids, rendering him deaf, and then described my terrible nightmare. The one that lurks in that dark place that I try desperately to keep the door slammed shut on. The one that haunts me even as I am cracking jokes and living in the now. The one where my wish that he lives longer than expected comes true, but as a result we reach that stage where he is locked in and I'm left to execute his wishes and have the ventilator turned off. The one where he is silently screaming to himself, "don't do it Becky, I've changed my mind."

Tears? You bet. In one office the staffer was in tears with us. In another, I had to describe my anger over anyone not providing the incentives when we KNOW that's the only way drug companies will pursue those avenues to a cure. They can charge me what they want for 15 years. I'll bankrupt myself if that saves my husband. If I were a stockholder I'd not expect the company to go into something they knew would lose them money, for God's sake. Yes, I said it. I don't care what upsets YOU about the drug companies, I only care that right now there is no hope that I won't be a widow decades before my time. I only care that a cure might be sitting on a shelf because you don't appreciate the profit motive.

Everyone we say agreed to supporting protecting CRT for ALS and eliminating the 5 month wait for SSDI. Unfortunately, their was little hope for Dormant Therapies right now, Well, there's always another day.

I must make a plug for the ALSA staff here in North Carolina. They were extremely organized, warm, and caring. I don't know how they go through this painfully emotional experience year after year.

Becky
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