Thanks to the Freedom Caucus, the sick and disabled are officially under the bus. Medical coverage for those with preexisting conditions is being jettisoned in the new GOP plan, a step backwards to mollify conservatives. High-risk pools would replace that provision in the ACA. Those would apply to a limited number of conditions with no price controls. We could be denied coverage or gauged. In short, we would be screwed. Trump, of course, will sign on to anything putting him close to the winner’s circle.
We are invisible and have no clout.
I was interviewed for a site called Big Think. They are partners with a few universities sponsoring a conference about hope and optimism. I talked about a theme we have discussed in this space. Most diseases known to humanity have an affinity group they call their own. These organizations provide support and a public profile for people living with the conditions.
According to Dr. Google, there are an estimated 30,000 human diseases known to medicine. The number is staggering. I had figured there were like, maybe one hundred. Way off. All of these single illness advocates are competing for the same dollars. The federal government does not want to finance research on specific illnesses. That would cause a riot. They just appropriate money and not too generously for NIH. And, of course, Trump is calling for cuts in the NIH budget.
So during the videotaped interview, I blathered on about building a movement around a coalition of these groups. A portion of the monies they raise could be pooled and used to lobby for increased research on chronic illnesses and disabilities. And we could become a political force with clout.
Dream on. Never going to happen. Affinity groups, including the NMSS, jealously guard their turf. They value their control over fundraising and how the monies are spent. I believe all are taken with their own perceived power. I know that sounds harsh, but I believe that is how the world works.