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Has having ALS or a loved one with ALS changed your perspective on politics? What issues around rare diseases impact how you vote? What are the most critical issues that influence your vote?
Please note this isn’t intended to discuss who to vote for or debate candidates. I’m just wondering how ALS has impacted your political perspective, if it has.
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President Trump signed “Right to Try” legislation to give terminally ill patients the ability to access experimental drugs that have not been approval by the FDA. But since the drug companies have the ability to deny access to their experimental drugs, I’m not sure how many patients have benefited from the new law.
I am grateful President Trump gave time to consider those of us with a terminal disease, as I would be first in line to try an experimental treatment for ALS.
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I have to admit that for most of my life, politics was just background noise. I’d get up to speed around election time – – reading the crib notes on issues & candidates in the day before going to vote.
But, now, with ALS, I have become totally engrossed in topics such as healthcare, health insurance, community agencies and overall government funding. The 2020 elections have magnified the disparity in all these issues.
We pALS and cALS need to step up our awareness and involvement in government issues. It will help not only those with ALS, but everyone with ongoing chronic diseases.
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