Angie received a call from the Epilepsy Foundation. They asked if Rachel would be interested in taking part in a panel discussion with people from the epilepsy foundation and other groups as well as Steny Hoyer and some of his staff people? Rachel probably would, but she had just started a summer job and didn’t think she could get the time off. They asked if Angie would be interested and of course she was. She hasn’t exactly gone in for this sort of thing in general… but try to get between her daughter and healthcare and you meet a different side of Angie.
I took a day off from work so we went together. At the meeting were a diverse group of people including Steny Hoyer and some of his staff people, people from the Epilepsy Foundation, Cystic Fibrosis Foundation, American Heart Association, MS Foundation, NAMI. There were survivors, legislative folks, activists, a doctor, some of the activists and even legislative workers and representatives also had some pre-existing condition.
We met and talked with some wonderful people associated with the Epilepsy Foundation. We met a person with CF who had a lung transplant last year. That one life saving operation would blow away a lifetime cap for her, of the type that have silently been part of the GOP “healthcare” legislation. All of the participants seemed to be feeling the same types of things, what are we supposed to do? Here are these otherwise productive members of society who without healthcare coverage, real healthcare, not accessible, in that if you rob a bank you can afford it, or if you are a senator you get to have it, kind of accessible healthcare, but healthcare “for the rest of us”. What, do we just go away and die? Do we watch our daughter begin having terrible, possibly fatal seizures again because the medicine that has kept them at bay for 4 years would suddenly be out of our reach? Because some people have a philosophical issue with the “government getting involved”? I would bet most of those people would be fine with government involvement when the firemen come to rescue them from a house fire. The thing is, there are LOTS of hard-working people who daily live with that fire. It is not an abstract, it is a stark reality.
It was a very good discussion. It was good to see other people similarly concerned and willing to do whatever they could to make sure that we at least help to inform people about the ramifications of what is being proposed as health care. These are not statistics and numbers, these are people of worth, some who have gone through the kinds of situations, pain, discomfort that most of us can’t fathom and many of them are now looking at what could be leading a greatly reduced life of increased pain, relying on others for everything at best and a death sentence at worst. That death sentence, for many, is not hyperbole, it is real, very real.
At the end of the discussion, Steny Hoyer held one on one, recorded interviews with some of the people from the discussion. Angie gave a great interview and they will have that up soon on https://trumpcarestories.org/ We were very happy to see their efforts to put stories to the numbers and faces to the stories.
It is so important in this age of constant dehumanization and polarization, to understand that we are all human beings, not notions, not faceless numbers of “the other”, the “bad guys”, the “stupid”, the “lazy”. It is time for us to stand together, for ourselves, because no one else is going to. We thankfully have a brief reprieve in this latest healthcare bill, but they voted to repeal without replacement over 50 times, at huge expense, when they didn’t control everything. Don’t think for a second they won’t keep gunning for your healthcare in order to “make a statement” and/or get tax breaks passed. We have to keep educating that policy has real and profound impacts on real people’s lives. We’ve got to band together with people who may irritate us with their views, even those “on the other side” but who also need and rely upon healthcare to remain productive, to live.