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With 2020 quickly approaching and another election, I was wondering if ALS has impacted how you view politics. There has been a lot of focus on bringing tax breaks to pharmaceutical companies who are researching treatments for rare diseases. There has also been a lot of talk in the United States about making sure that these treatments are affordable to those who need them. So, has having ALS, or loving someone with ALS changed your perspective? Are you more likely to vote a certain way because of how a candidate supports or doesn’t support research for rare diseases? What are your thoughts? How do we, the ALS community, keep/make research for a cure a pressing issue?
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I do not expect any politician will make any mention of helping rare diseases in their platform. Frankly not enough voters. On the other hand, I stronger than ever will support candidates who support expanding health care to all citizens. I’ve talked to Canadian pALS who do not need to worry about the cost of treatments in deciding whether to take expensive treatment like Radicava. Other new drugs will surely be just as expensive or more so. Our current US president and senate are very much against universal health care for US citizens. We need to vote for people who care more about compassion that serving ones personal interest.
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