Hope is a Journey….

Keep your eyes on the prize!

It was a frigid night in December.  The walls inside my house echoed with the pitter patter of little feet as we all anxiously awaited the arrival of Senator Kerry’s Chief of Staff, Drew O’Brien.  In true, “Murphy’s Law” fashion, Mother Nature had served up an ice storm to keep things interesting.  To our surprise, Drew was adamant on not rescheduling – he stated,
Your needs don’t stop for an ice storm, so why should I?”

It was only 3 days prior (Friday, December 10th, 2007) that I nervously typed out an email explaining that we needed Senator Kerry’s help.  I told him that patients with Primary Immunodeficiency Disease who had Medicare as their insurance were being denied the proper access and coverage to their life saving treatments (gammaglobulin infusions – IVIG) and it was significantly impacting, lessening, or taking their lives.  I was SO afraid to hit ‘Send‘ – I mean, what if I didn’t word it right?  What if I wasn’t clear enough about the need?  What if I messed this up?  The Immune Deficiency Foundation (IDF) knew that Senator Kerry would be a huge asset to helping rectify the issue and had reached out to me to make contact and ask for his help….I didn’t know the FIRST thing about how things like this worked…why would they trust ME to do something like this???  But they did…and, I took a leap of faith and went with it.  I knew that I wasn’t the only one leaving my comfort zone and asking for help, so I jumped in – both feet first!

Within a few hours, I got a response back from Drew – and he put us on the calendar for the next business day (Monday) to come to my house and hear our story.  I excitedly and nervously called my 2 other friends, Michelle and Eleanor and we scheduled an ‘infusion party‘ for that Monday.  They too were nervous about what to say/not say – but I told them the same thing that the IDF told me – just be yourself, be honest and trust that they have your best interest at heart….and that’s just what we all did.

When Drew arrived, I introduced him to everyone (6 kids and 6 adults).  He got to watch us all set up and begin our infusions, and he had some of Michelle’s delicious cake with coffee while he listened to our stories and the struggles of others.  He was kind, compassionate, and just an overall wonderful man.  After several hours, it was time for him to leave, and he assured me that he would speak with the Senator and that he felt confident that this was something that the Senator would be willing to learn more about and possibly take on.

Kerry

Kerry1

Kerry2

Kerry3

Kerry4

Kerry6

Kerry7

A little laugh for us all....

A little laugh for us all….

Kerry10

Our 6 Munchkins Infusing

After he left, we all were elated and empowered – it felt good to DO something!

We kept in contact over the new few months, and finally – on March 16th, 2008 – Senator Kerry attended one of our blood drives and made an official public announcement that he would be an Original Sponsor of the Medicare IVIG legislation!

Our family with Senator Kerry

Our family with Senator Kerry

The plaque we gave Senator Kerry(Donated by Etches in Stone)

The plaque we gave Senator Kerry
(Donated by Etches in Stone)

Will's preschool teacher coming out to show her support

Will’s preschool teacher coming out to show her support

My first opportunity to share with Senator Kerry my heartfelt gratitude.

My first opportunity to share with Senator Kerry my heartfelt gratitude.

Senator Kerry giving Will a squeeze

Senator Kerry giving Will a squeeze (with Drew in the background on the right)

Presenting Senator Kerry with a plaque recognizing him for his support to the Immune Deficiency Community.

Presenting Senator Kerry with a plaque recognizing him for his support to the Primary Immunodeficiency Community.

This began a wonderful relationship between Senator Kerry’s (his office and his staff also), the PIDD community and the Immune Deficiency Foundation.

I’ll never forget how, initially, our efforts were met with a bit of cynicism from our patient community – some didn’t feel the need to get involved because they didn’t have Medicare and it didn’t matter to them.   I told them that it didn’t directly impact us either, but the reality is that it impacts someone….and that’s enough for me. I tried to explain to them that Medicare sets the standard and other insurance companies follow suit eventually – some understood, others couldn’t be bothered…..I decided that I just needed to focus on the fact that it mattered to those of us who led the charge and we were on a mission!

Because of our ignorance as to how the legislative process works (and often how slow it is) – many of us did not realize just how long of a process this would be – but, one thing was certain – we had a great group of folks locally AND nationally to walk with on this journey.

April 17th, 2008 was my first trip to D.C. – Michelle and I traveled together and Eleanor joined us the next day.  It was great to get to meet so many wonderful people, hear their stories, and feel that instant connection with others.  The staff at the Immune Deficiency Foundation (IDF) was incredible also.  Little did we know, this was only the beginning…..

2008j

Marcia Boyle, President and Founder of the Immune Deficiency Foundation with the plaque recognizing Sen. Kerry as our Champion.

2008

2008a

2008b'

2008c

2008d

2008e

2008f

2008h

2008i

2008k

2008l

397652_4552322919591_1875900299_n

We continued to work with legislators over the next several years – going to Capitol Hill yearly and also meeting with our legislators in our home states.  Every year we went and asked for support – and, little by little, every year- our support grew.

March 30th, 2009 Capitol Hill Trip

2009e

Our Awesome MA group with Kathy Antilla and Marcia Boyle

2009

2009a

2009b

2009c

2009d

2009f

2009g

April 30th, 2010 Capitol Hill Trip

2010a

2010b

2010c

2010d

2010e

She's been with me all the way!  :)

She’s been with me all the way! 🙂

2010g

2010h

2010i

2010j

May 29th, 2011 Capitol Hill Trip

2011

Our Awesome MA group!

2011a

2011b

2011c

2011e

Ralph's first year with me!!!!

Ralph’s first year with me!!!!

2011n

Yep, our Awesome MA Group, again!

2011g

2011i

2011j

2011k

2011l

2011o

2011p

2011q

2011r

2011s

2011u

And finally….
March 21st, 2012 Capitol Hill Trip

2012k

Our Awesome MA/ME group!

2012

2012a

2012e

2012f

2012g

2012h

2012i

2012j

2012l

2012m

2012n

2012o

It had been a long haul….several years walking the Hill – and many were weary, fearing the legislation would never come to pass….but HOPE carried us….

On Wednesday, December 19th, 2012 – HR1845 passed in the House of Representatives by a vote of 401 to 3!

On Friday, December 21st, 2012 – the companion legislation went to the Senate for a vote and passed UNANIMOUSLY and is waiting for the President to sign it into law!

To say we were excited is an understatementThis is incredible news!  I can’t even begin to tell you just how awesome it feels to be a part of something that’s bigger than me….to know that our efforts had an impact goes beyond what I can put in this blog.  I don’t know if some of you realize just how hard it is to get existing law amended…but it’s extremely difficult, especially when you are a small disease population that is not well known (like Cancer, AIDS, Alzheimers, and so on).

Our heartfelt thanks go out to Senator Kerry and his incredible staff (Drew O’Brien, Megan Thompson, Ashley O’Neill and SO many others), especially for being our Champion on the Senate side of this legislation along with Sen. Alexander – for never giving up, never backing down, and never losing hope!

Of course, we had some incredible champions on the House side – Representatives Brady and Matsui worked tirelessly to gain support and raise awareness about our need. 

We’d like to thank our local legislators who stood alongside Sen. Kerry in this legislation:  Senator Scott Brown, Congresswoman Niki Tsongas, Congressman Keating, Congressman McGovern, Congressman Neal.  Their support was critical to the success of this endeavor and there are NO words to express the depth of our gratitude.

Difference

Stepping out of my comfort zone and doing something that intimidated me: Worth It
Countless hours making phone calls, sending emails, and raising awareness for the need to have legislation supported and passed: Worth It
Several trips to Capitol Hill: Worth It
Waking up this morning and realizing that all the years of hard work with countless others dedicated to the same thing you were —-
it all came down to 2 votes: the House and Senate – and it passed with almost unanimous support: Worth It
Knowing you made a difference in the lives of those who need it most: Priceless.

Thank you to EVERYONE who was with us on this journey – all of my fellow friends with Primary Immunodeficiency Disease – YOU ARE WARRIORS and I’ll fight alongside you any day!  Thank you to all my friends who didn’t have the disease but helped anyway…and most importantly, a HUGE Thank You to my family – for knowing how important this was to me and supporting it…helping with phone calls, awareness events, taking care of our kids when we needed to go to meetings with legislators or to Capitol Hill. I love you all! This couldn’t have been done without the help of each and every one of you!

2508_1136798573617_1032656_n
I am SO PROUD of what we were able to accomplish together!

THANK YOU to Marcia Boyle, Lawrence A. LaMotte, Emily Hovermale, Colin Seal, Kathy Antilla, and ALL of the other folks at the Immune Deficiency Foundation who worked tirelessly to make this need become a reality! These people are tireless and pour their hearts into the patients, their needs, and their work.  We are so blessed and fortunate to have these people in our corner fighting with and for us.

SO…the moral of the story is this:  Don’t EVER think that you can’t do something because you’ve never tried it or don’t know how to do it….where there’s a will, there’s a way. AND, don’t EVER underestimate the power that ONE person has…….while I certainly was NOT the reason this legislation went through, I was a part of it….and that mattered!

one person

The next few days I will be posting (hopefully) several blogs – there’s SO MUCH going on – I don’t want any of this good news to get lost in the shuffle!!!!

I hope you all had a Merry Christmas…..keep your eyes peeled for the next exciting tidbit of news….coming soon!

 coming-soon

Love and Light,

Stefani

Comments on: "Keep your eyes on the prize!" (1)

  1. Hi Stef,
    Thanks so much to you and all the other folks who have fought so hard, so long to get this passed. The importance of home care was brought home to me personally last winter when I was ill and did not feel well enough to drive but it wast the only way of getting to the hospital for treatment that would help me get better!
    I did make some calls to (hopefully) encourage this outcome and though it was only a small thing.
    hope it was helpful. Needless to say I was thrilled to hear it had passed and hope it is “signed, sealed, delivered” quickly. Thanks again to you and all the others who made this happen!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: