Dream On

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.





10 Responses to Dream On

  1. Dale April 28, 2017 at 1:30 am #

    That is exactly how the world works. Each group is climbing all over each other for dollars. Some more reputable than others. The one glimmer of hope for out of the box thinking was the Ice Bucket Challenge and low and behold the monies have actually led to some real discoveries apparently. But the turf wars are brutal. I actually admire the American Kidney Foundation started by a woman who spent much of her childhood in bed with Nephrotic Syndrome. It seems they are a lot more focused.

  2. Christopher April 28, 2017 at 4:01 am #

    No Richard, it’s not harsh… it’s accurate. Sometimes it really sucks to be right, and there’s no glory or much appreciation. But there is the (measured) satisfaction of knowing that you’re aware of the truth. The world — at least our world here in the U.S.– has become a place of such self-interest and intolerance that it’s nearly impossible to find seeds of hope germinating anywhere. I see so much intolerance, contempt and resentment each day it’s painful. When did our society become so mean-spirited and careless? I think it’s been coming on for years, and we have all become habituated into these behaviors, and it will take many years to replace those bad habits with new better habits. In the meantime it’s going to take a lot of hard work to stay in front of this.

    It won’t be easy.

    • Richard Cohen May 3, 2017 at 9:18 am #

      I think it began in the 1980s when the radical right joined the GOP. The brought on a new nastiness.


  3. Amy Hunt April 28, 2017 at 1:29 pm #

    They’ll never repeal Obamacare. It’s more popular than Trump and way, way more popular than Congress. Covering pre-existing conditions is now a thing. Not making insurance prohibitively expensive for the sick and disabled, that’s a thing too. They can try mightily, but that toothpaste is not going back in the tube.

    • Richard Cohen May 3, 2017 at 9:20 am #

      I agree. These high-risk insurance pools are a giant step back. Even Trumpsupporters want the coverage.


  4. Hilary D April 29, 2017 at 12:26 am #

    These orgs have way too much overhead. Look at NMSS headquarters, one of the most expensive rental properties in NYC. Move to North Dakota and save some money to fid a cure or help lobby.

    • Richard Cohen May 3, 2017 at 9:21 am #



  5. Sue in Tx May 2, 2017 at 2:23 pm #

    I dont know maybe you are onto something Richard. A coalition of people with diseases all have a dog in this fight. i’m sure they all noticed as i did when Our President said this weekend that “Pre-existing conditions are in the bill. And I mandate it…, ‘Has to be,'” After some head scratching, i got it , this is so called “cute” semantics : insurers will be required to offer health insurance to those with pre-existing conditions but it will cost, cost a lot, cost more than is affordable for families to pay. And wow, GOP leaders are also saying it “protects” those with preexisting conditions. I figure the proposed legislation does protect us with preexisting conditions, in the same way a grifter promises to take care and protect her wealthy mark’s children.
    I think none of us know how to get our leaders to be more forth coming or truthful on their aims. But i do know that a foundational principal of insurance is that it is a risk distributing enterprise. i also think We need to call out our leaders who completely dismiss the notion of spreading the risk of health care among the sick AND healthly. How many of these leaders live in cities with the true cost of insuring their motor vehicle in the city is borne, at least partially, by their rural neighbors?
    did we as society decide that health insurance is something we should all have an ability to get or not? if a political leader thinks insurance shouldn’t follow egalitarian principals, they should just say so and not patronize us with “cute” semantics. Maybe a coalition of people with preexisting conditions could agree on and be effective in uniting on messaging – exposing politicians in the media and press for misleading messaging and correcting them with hard facts and data, as much and as long as needed. Politicians want to be reelected and a coalition could blitz their constituents with real facts.
    Not a bad idea.

  6. Christopher May 2, 2017 at 3:00 pm #

    Someone is listening, a little…


  7. Christopher May 3, 2017 at 4:08 am #

    The line of people ready to stand up and lean into the wind will grow longer with each person who stands up and leans into the wind, because we all are beholden in some way to modern medical care and we know it. Even with political knuckleheads who assert that healthy people are good people and sick people with preexisting conditions are bad people [Rep. Mo Brooks of Alabama]. Really? Please….

    People are listening, and people are beginning to wise up and speak up. We’ve heard from a few already, not many but a few strong ones.

    And now another…