Show Your Hope!

On a cool and dreary Wednesday night in a hotel conference room, HOPE was in there air.  Old friends embraced and new friendships began. A tiny but radiant woman spoke up from behind the podium and the room fell silent.  Marcia Boyle, founder and CEO of the Immune Deficiency Foundation welcomed us to Capitol Hill.

Over the next few hours, we sat a captive audience as we heard presentations by the Vice President of the PPTA,

Hart Health Strategies,

and staff from the IDF.

Our mission was clear…we were there to MAKE A DIFFERENCE….to DO SOMETHING.

As soon as the presentations were done, we all hurried to our rooms to review our materials and head to bed. It would be an early start to our day tomorrow and there wasn’t a moment to waste.

Thursday morning started on a frenzied note as my alarm did not go off and the shower had no water pressure amongst other things….a comedy of errors for sure.

Downstairs, the conference room was abuzz with eager and nervous men and woman…the time was almost upon us.

Congressman Van Hollen was recognized for his dedication to our cause….

and said a few words of encouragement.

Congresswoman Matsui was unable to attend, but her aide accepted her plaque on her behalf.

and Sen. Brady were waiting in the wings and were introduced, thanked and applauded for their efforts in being our champions on this legislation.

And finished off our morning by commissioning us to go and make a difference.

  After a few encouraging words from the staff at IDF,

it was time to gather our things and head to the Hill.

As a sign of our solidarity (and a way to capture the awesomeness of the moment), we took a few moments on the steps of the Capitol to have a group picture.

With great anticipation and a lot of ‘good luck’ wishes and hugs, our group dispersed and we all went our separate ways.  It was time to get down to business.

Our group consisted of 2 amazing women from Maine (Theresa and Oriana) and Ralph and I.  Christine from the IDF would accompany us to our first meting and Larry (from IDF also) would accompany us for the rest of the day.   We had 6 meetings scheduled for the day.

We had an hour before the chaos of our meetings would ensue, so we took advantage of the opportunity to sit, gather our thoughts and discuss any questions/concerns that any of us might have.

Our first meeting was with with Sen. Snowe’s (ME) office.  Theresa and Oriana took the lead and they did a fantastic job detailing their story and the need for this legislation.  Her aide was compassionate and listened diligently to us speak, we took a picture and off we went to our next meeting.

Next up was Sen. Kerry’s meeting.  We met with his aide, Megan.  This is our 5th year meeting with her.  Since Sen. Kerry was one of our champion original sponsors for this legislation, we took this opportunity to thank her and the Senator for all the hard work that they had put into helping us.  I can’t even begin to tell you how amazing Megan, the rest of the staff and the Senator have been.  There is no greater feeling than knowing that you matter – no matter how vast or few you are in this world.  We also discussed a few other pressing health care issues, took a picture and headed out the door.

We made the trek across the Hill to the House side to meet with Congresswoman Tsongas’ aide, Sara.

It was a great meeting and she assured us that this was something that was important to the Congresswoman.  She was going to look into it and get back to us.  We took our picture and made our way to our next appointment.

We met with Congressman Michaud’s aide, Emma and left feeling positive about our discussions.  Again, the Maine ladies stepped up and did a fabulous job!  We took a quick picture and headed to our next meeting.

Our next meeting with with Sen. Collins’ aide, Priscilla.  When we sat down, she opened her notebook and I saw that she already had notes on our legislation.  It was a pretty awesome feeling to know that she took our meeting so seriously.  We shared our stories and then we headed out to our next meeting.  Unfortunately, due to time constraints, we did not get a picture with her (we’ll have to save that for our Maine gals to do!).

We rushed from the Dirksen building to the Russel building, making it there just in time – only to realize that Sen. Brown’s room assignment had changed – and his room was actually in Dirksen!  Our exhausted but determined group hurriedly made our way BACK to the building we just came from and arrived for our meeting with one minute to spare!
Our meeting with Sen. Brown’s aide, Laura, went very well and, while she couldn’t make any promises – she couldn’t understand why they hadn’t already signed on.  She was going to look into the legislation and get back to us.
We took our final picture and left the office.

Outside the office, we all let out a collective sigh of relief – the day was finally over and we had really positive feedback.
With that, we headed back to the hotel to meet up with the staff in the lobby and share our experiences.
Upon our arrival, we got to share some last minute hugs and hear the updates of others.  It seems like, overall, the rest of our group seemed to have similar reports:  Positive feedback and a lot of hope taken away from the meetings.

As fast as our Zebras descended upon Capitol Hill – most departed.

Ralph and I stayed another night in order to not push myself too much physically by doing a 9 hour or so drive back home after only getting a few hours of rest.  We decided to take advantage of the sunlight and warmth and head out to see the Cherry Blossoms.

This year was the 100th year Celebrating the Cherry Blossoms and we just happened to be there during their peak.

It was beautiful, breathtaking, and the sweet aroma embraced the breeze and kissed every inch of your skin.  I don’t know if I could adequately describe how it felt – there was an excitement that permeated the atmosphere that I had never felt before.  Thousands and thousands of people were there celebrating nature, freedom, unity….

The blossoms feel from the trees like snow….

And people were stopping along the water to take pictures…

I was one of them too…I couldn’t resist.

Of course, during all of this – there had to be a little chaos as several low flying helicopters made several passes around where we were and sirens screamed on the ground.  One can only assume that one of the helicopters carried the President or someone very important!

Ralph and I were able to take a sunset roll/stroll (I rode in my power chair while Ralph walked) along the water holding hands and just enjoying a priceless moment in time.

So blessed.

On our way back, we ended up walking behind this couple for a few blocks.  They were just so sweet….I had to take a picture.  I hope that in 20 years, Ralph and I can be as close as they were…

We made it back to the hotel just as all the lights in the city came on – it was pretty neat to see the city lit up in all it’s glory!

To see all the pictures that were taken of our trip, go HERE

I took a few minutes to upload some pictures and checked my email.  Much to my surprise, I received an email from Larry (IDF) that Congresswoman Tsongas had immediately signed on to our legislation!!!  What a great feeling that was!  After that news, we decided to end our night on a good note and we both crashed for the night.

This morning, we packed up our belongings and I sat down at my laptop to send emails to everyone we met with yesterday thanking them for their time, support, and sending those who requested it whatever information they needed.  I didn’t want the chaos of returning home and getting settled to get in the way of letting our legislators know how much their time and attention to our issue meant to us.

We left the hotel feeling like the world was a whole lot brighter because our group stood up and stepped up and DID SOMETHING! We had over 90 meetings yesterday as a group and it felt good to DO good!

We just entered New York and all I can think about is Will and Sasha.

They are the reason that I do everything I do – and I know that Ralph feels the same way.  We have missed them SO much over the past few days and it was SO hard to leave them, especially with both of them having some really big stuff going on medically lately, but God Provides

And my parents, my friend Sherri, my soul sister Chelsea & her husband Keith and my Aunt Louise all worked together and made it possible for Ralph and I to travel to DC and be a voice for those who could not speak for themselves. I am grateful beyond words.

As hard as it was to leave a weepy Sasha and Will at home – the importance of our mission outweighed a few days for them.

Some of you may be curious and wonder “What legislation are you talking about?”

The legislation is identical on both sides:  S960 and H1845.

Here’s the skinny:
When Medicare added in a benefit about 10 years ago for individuals with Primary Immunodeficiency Disease (PIDD) under Part B – the language of the provision was written poorly and, unfortunately, it basically created a hollow benefit.  Patients could receive their infusions in the home, but Medicare would not pay for the necessary nursing or the supplies.  Also, the reimbursement rate was sub par.  When this took effect, patients began having difficulty gaining access to life saving treatments because it became less than optimal for many infusion centers to offer this product for Medicare patients.  It also forced patients who had been infusing at home, with a nurse – to find an infusion center to go to.  Let’s think about this for a moment….these patients have broken immune systems and Medicare wants them to GO to a hospital, infuse in an infusion center (many of them are cancer centers – which poses a greater risk to both the PIDD patient and the cancer patient).
There was one story that I had heard about a man who was receiving home infusions with no issue until he turned 65 – he suddenly had to travel FOUR hours to an infusion center in order to get a SIX hour infusion…only to have to travel FOUR hours back home.  Eventually, this became too difficult for him to do and he became a recluse because he was unable to access the care that was best for him.
Another story, MUCH closer to home – is that of Michelle Fox’s father, Erlend (to watch his story, click HERE).  After going his whole life undiagnosed and being told that ‘nothing’ was wrong with him or that, ‘you’ve lived this long without diagnosis/treatment – why bother to start now?” – he became gravely ill.  They pushed hard to get sent to Boston from the hospital he was currently in.  Sure enough, he lab results confirmed what they had long suspected –  Erlend had a Primary Immunodeficiency Disease.  After very serious and life threatening infections, he finally was approved for IVIG infusions.  Medicare refused to pay for a nurse to come to his rehab hospital (he was in this recovering from several life threatening infections), so he was shipped out of his private room at the rehab hospital (which was required for his particular infection – that Medicare was paying for), put him in an ambulance and he traveled 2 hours into Boston to the closest infusion center.  He was administered his 6 hour long IVIG infusion and then placed BACK into the ambulance for another 2 hour ride BACK to his PRIVATE room at the rehab facility.

It doesn’t take rocket science to see all of the problems with this – taking a frail, immune compromised individual with serious infections OUT of one hospital setting, into an ambulance, into a setting where cancer patients with often NO immune systems are having their treatments, exposing him to even more germs, putting him back into an ambulance for a 2 hour ride back to the hospital from which he came.  Since Medicare is not interested in these things – it absolutely astounds me that they are not focusing on how much MORE it is costing them to do it their way…..not allowing the nurse to come to the hospital that he was currently in to infuse just made NO sense – but it was their policy – and that policy cost them SO much more!  How does this make ANY sense????

These stories repeat OVER and OVER again in our patient population.

All this legislation does is offer a 3 year study that is capped at 4,000 Medicare patients that evaluates the benefits of providing payment for items and services necessary to administer IVIG in the home setting as well as evaluation of the new payment methodology in all settings.  The cost of this study is offset in full and detailed out in the legislation.

After reading all of this….are any of you willing to DO SOMETHING really simple but incredibly important RIGHT NOW?  If so, please go to the IDF’s Advocacy Center and take a few moments to send a letter to your legislators asking them to support this legislation.  IDF has made it VERY simple to do this – and there is already a drafted sample letter that you can send ‘as is’ or add in your own words.  To you, it is one minute of your time….to us – and all those affected by PIDD, it is a lifetime.
Remember, it feels good to DO good…..so, go….DDO SOMETHING!!!!!!

Thanks for reading…..

Love and Light,
Stefani