Tuesday, April 9, 2013

Ginger Foxxx goes to Washington!

As a lot of you know, i spent a part of last week on capitol hill "being a lobbyist."  If i came away from the experience with anything, it's that i am a terrible lobbyist; thank god i excel at food packaging design.

Luckily, i had this incredibly distracting hair wing going on the entire time i was meeting with very important people about a very serious issue
I'm just kidding - i suck at food packaging as well.  Being a lobbyist isn't terrible, i just am not enough of a smooth talker or a quick thinker.  I tend to fumble with my words and make awkward jokes, so don't expect me to be relocating any time soon!
So why was I in Washington?  For the third year in a row, we are trying to get the Huntington’s Disease Parity Act passed.  When someone goes on disability, there is a two year waiting period before they qualify for medicare.  For most, this is not a huge problem, but for HD patients, by the time they are properly diagnosed and able to file for disability, they are so sick that they need extensive and costly medical care.  Their health can decline rapidly in those two years.  I lived this personally, as all of our savings went to my dad’s care during this “gap”  (two years is a gap?  GTFO.)
I went to DC to meet with the offices of Senator Kirk and Senator Durbin to beg and plead with them to co-sponsor, or at very lease support this act.  For the record, Senator Kirk has a much better spread of candy in his office.

Kirk's spread!

The HD Parity Act addresses two things.
1.        The out of date diagnostics.  People are not diagnosed early enough because they only list chorea (uncontrollable body movements, like in Parkinson’s Disease) as a diagnosable symptom.  This is complete and utter bullshit, as the psychological aspects can be just as debilitating, and can set in early.  (i.e. my dad locking us in the basement with no power to protect us from spies.  He was obviously sick, and obviously needed medication, but lacked any physical manifestations at the time, and was misdiagnosed.)
2.       The need for immediate care after diagnosis.  There is no cure or treatment, but there are some really amazing drugs out there that help control the symptoms, and slow the disease down.  But they are expensive.  Really expensive.  Medicare would make these drugs accessible.  MEDICARE GOOD.  And honestly, my dad spent 3-4 years in a nursing home.  People who get the drugs they need when they need them require a lot less professional care in the long run.  This makes sense people.
Why this act is not being passed is beyond me.  It’s a rare disease, so the people who would benefit would really only cost the government chump change.  Yet it goes unpassed.  There are just so many other issues on the table right now.  Marriage Equality, Gun Control, the Sequestration.  This is just not something the government cares about at the moment.  We currently have a 2% chance of getting this bill passed in 2013 (these odds are about as good as me surviving that upcoming marathon.)
The first day I was there, I went to a symposium that celebrated the past twenty years of HD research.  Sadly, most of it was over my head.  These were the people that worked on the genome project, and they are all brilliant.  The famed Dr. Nancy Wexler was there, one of the scientists that discovered the HD gene.  To my knowledge, it has not been made public, but the second I saw her I knew she had HD.  Its extra hard to watch the disease take someone who is actually a genius, and was making a difference.
I had to channel my inner "Loop Looks" for a capitol hill appropriate outfit.
The second day, I was grouped with a few other Illinois folk to go to our meetings.  There was a lot of crying unfortunately, and as the only one who could keep their emotions in check, I was left to do all the talking.  That day drained me in a way that I can’t describe.  There was just so much sadness.  These people’s lives had been devastated by HD, and it was really hard for me not to just fly into a rage over how unfair it all is.  Emotionally, I am still recovering from it, which is why it took so damn long just to write a recap.  I have spent my entire (adult) life drowning all my emotions about HD in booze and binge-sized portions of candy, so facing it head on was very difficult, and a little traumatizing.  I would do it again in a heartbeat though. 
Maybe I won’t need to;  Maybe they will just pass the damn bill so they don’t have to see me next year.  And I will steal even more candy from your office in 2014, Senator Kirk!

The best part of the Senate?  There are dogs everywhere.  Not like drug-sniffing dogs.  Normal dogs that I got to pet.  Who would have thought??
The worst part of the Senate?  The brie and cucumber sandwich.  I was not impressed.  And I was prohibited from photographing it, which seems a little intense.
***Why do you care about any of this?  You probably don’t, but I will put more information on the parity act, and how you can help by writing to your state representatives in the Huntington’s Disease tab anyway.  I will hopefully do it tonight, as I am just too tired right now.

Sadly, there was no time for sight seeing, but i did get to see the capitol building!


  1. Feel better Sara!

    This kind of thing blows my mind. It seems like it should be a no brainer, yet they make it so incredibly difficult. I'm so glad you are working so hard to bring about positive change.

  2. Cute outfit! I am sure that is what you wanted to hear right? ha! ;-)

  3. was your hair right wing or left wing? haha

    You should be proud of yourself for your commitment to the cause! Even if it seems like you're grasping at straws right now, know that it is worth it to get the word out and show that people care.

  4. Glad you were able to keep the emotions and rage in check to speak for those who couldn't....keep on pushing and someday you will be heard and a bill will get passed!

  5. Gahhhh that is SO frustrating!!! Why the heck doesn't it pass?! As a special educator, I see stuff like this happen all of the time..SO FRUSTRATING!

  6. I applaud you for going and doing this. It was tough but hopefully, maybe, someone there heard something you were saying. It might not have been the senators right then and there, but at least you planted the seed and gave HD a face.

  7. Good for you all for going! I hope your chances increase and they do pass it. It seems like a no brainer.

    Sorry it left you so drained. Have the people in this group turned in to a good support group? I hope you were there among cool peeps! :)

    P.S. I am not sure how far I will get in my job, because I cannot do the political schmoozing either!

  8. What a great cause to be an advocate for. It's something that I never knew before today, and I will definitely write to my state rep!

  9. you are so amazing to support such an awesome cause. I know after I retired from the Air Force it took a good year to start getting my disability.

  10. What an amazing thing to do. I am horrible "on my feet" type person. I am always thinking, "ooh I should have said..."

  11. You looked super cute Sara! What an amazing experience for you to have. Kudos to you for being so strong and inspiring!

  12. I love your lobbying outfit! So cute!!!

  13. Persuasion & lobbying are hard, especially on such personal issues. I appreciate your candidness on your experiences and I hope that you were able to share what the impact your father's disease has had on you and your family's life. The cost savings of medicare supporting your father & other HD'ers earlier on wouldn't have just saved on his medical care needs, but also I'm sure on other supports / lost wages/mental taxing that went on for family members too.


  14. Thanks for sharing your thoughts on such a deeply personal topic, and POWER TO YOU for taking a stand out there and working to make things happen. You truly, truly inspire me.

  15. I applaud you for working so hard for something you believe in. That is awesome and I admire you for it! And thank you for sharing your experience, I have never done anything like this so it is interesting to hear what goes into it.

  16. I love your Hill outfit! You look so adorable!

    I'm also fully aware that that is a silly thing to say in response to a post this important. So I'll also say.. I'm mega impressed that you have the balls to go out there and talk to any politicians at all. You ought to be proud. So many people are a lot of talk, but you actually walked the walk. So awesome!