Change of Plans

I struggled on a title for this one, thought of "Less is More", "Win Some, Lose Some", but they all had positive or negative connotations to them and sometimes a change is just a change. In rare disease things often change and in politics it is the same. So, when I got the call yesterday morning I should not have felt the disappointment. Representative Burchett's office had called me last week to give notice of this possibility - and for the debt ceiling issue to be resolved would be a great thing for our country.

Something to understand about politics and politicians, again is that they are people just like us. They cannot know everything about everything that is brought to them. They know this so it is important that they surround themselves with people who specialize in all the areas that they are expected to make governing decisions about.

Part of the phone call that I got cancelling my meeting with the Congressman was also that they would put me in touch with his lead staffer on healthcare. It was explained to me that when a healthcare bill comes about since Rep. Burchett is not on any healthcare committees he goes to this staffer to get the important information on the bill and to talk through the bill itself. In other words, this staffer has his hand on the pulse of healthcare in this officials office.

Within 10 minutes of my meeting being cancelled, my phone was ringing with a 202 are code - Washington, D.C His healthcare aide was already calling me. I did not have all my notes in front of me right away and was giving myself this whole day to prepare for my meeting the next day - to go through notes, stories and data. While I took a moment to get my bearings on things I asked for a quick recap on where the representative stands on healthcare in general.

While I was listening to his platform on healthcare because that is very important for me to know, I was also gathering myself to make my big ask....

I have changed exactly how I am wording things because the big named pharmaceutical company that has cut distribution of the life saving drug for adrenal insufficiency by 25% should have things back on line in June. I would not want to burn the bridge of the one company that makes the only life-saving medication and also many of the oral daily medications for adrenal insufficiency. It is important though that those in government understand the danger of anyone, especially those with a rare disease having to depend on one manufacturer to live. When that is the case, lives are at the mercy of one company and in this case all protocols to get the medication were to go through a pharmacist and/or doctor. The people who need this medication to live had no control in how to work towards getting it to them.

My conversation with the staffer went well. He is researching some things related to all of that I questioned and going through correspondence that has happened related to this situation.

You see, I will be honest, I had worked hard on this and was really looking forward to an opportunity to meet one on one with a Congressman. But honestly, in this case, and I have been told this by many it was probably most beneficial to work with the person on his staff who handles healthcare. This person is more than likely who would have received the notes from a meeting and been instructed on what to do - now he heard it all directly from me. There is one less person to have in the middle and with how complex these issues are going directly to the person who will do the work and report back to the congressman is probably best.

Let this be my final point here, as you reach out to legislators about anything talk to whomever they send your way. Do not be upset if they do not have the biggest and best title. Do not be discouraged if plans are changed - the wheels of government are ever changing and complex. Continue to move forward and share your story, ask you questions and work to make the change you want to see happen.