Don’t Make us Fail First

FailFirst ButtonWe had the opportunity to attend the Iowa Fail First Advocacy Day at the Iowa State Capitol this past week to advocate and gain support of Iowa House File 233/ and Senate File 436.  Both bills have passed out of the Human Resources Committee and will be heading to the floor.. soon.   After a briefing and lunch we walked up the hill.  Sophie was so excited and determined to tell our legislators her story.  To read more, see the Our Days on the Hill post.

When Sophie was diagnosed at age 3 with Juvenile Idiopathic Arthritis (JIA) we had to go through several failed medication attempts to help her with her inflammation and pain before getting to a medication that started to work.  During that 5 month process of failing medications, she went from one joint (her left knee) being affected by the JIA to 6 joints (both knees, both ankles, her left hip and right hand).  We were at appointments every 5 weeks with more joints confirmed and medications changed each time because the medications weren’t working.
We had to go through authorization and a lot of hoops to get the prescribed medications covered.  Her Methotrexate in the generic form is not covered by our insurance so it was denied because they (the insurance company) wanted her to take either the oral or the name brand auto-injector pen.  She was 3 and could not swallow pills so the oral was not an option.  The auto-injector was not a desired option because it did not allow for the doctor to adjust dosage if needed due to her age.  We were told we could appeal (which could take up to 10 days) for the prescribed medication to be covered.  I will be honest, I was in a panic when we were days away from needing to give her the first dosage and we had NO medication.  After a lot of phone calls with her doctors and the insurance and the specialty pharmacy, we determined that it was more cost effective to pay for the medication without sending it through the insurance, the cash option.
Then when we got to a medication that started to provide her relief and visible progress with her joints, her eye became involved with the inflammation (called Uveitis).  So her medication was changed again and another pre-authorization filed.
Our hope is to eventually reach remission of the JA.  She has had a very rough winter this year with illness.  With a suppressed immune system from the medications (Methotrexate and Humira) she is more susceptible to illness and it is harder for her to get past an illness once she has one.  She currently has 9 doctors on her medical team to help us with the different systems that are involved either from the JA or side effects of medications.
Iowa House File 233/Senate File 436 puts limits on an insurance industry protocol known as fail first which can require patients to try and fail on a series of medications before being allowed to have a medication their health care provider has prescribed.  The bill can increase access to care for patients by limiting fail first/step therapy practices in Iowa.
We were at the Capitol for the Advocacy day on March 15, 2017 in support of these Bills, because I firmly believe that if we had been able to move more quickly to the more effective medications, her disease would not have progressed so quickly.  No child should have to live with any disease or think that living in pain is normal.  No patient should have to go through the fail first hoops to get needed effective treatment!
If you live in Iowa, please join us today in contacting your State Senator and State Representative to ask them to vote YES on HF 233/SF 436!
Let me know the response you get, I would LOVE to send them more information and a Thank You!

Our Days on the Hill

20170310_153537On Wednesday we received an invitation to our State Capitol to be present on Friday, March 10, 2017 when our Governor signed the Biosimilars House File 305 Bill into law.  With some fast schedule shuffling, we were set to go!  This was our first experience witnessing a bill being signed.  He read the bill he was signing into law and then began to sign it.  Sophie loved watching him use all of the different pens to sign his name and that she got to take one home with her.

After the signing we began to prepare for a full day at the Capitol for the Iowa Fail First Advocacy Day.

What an amazing experience to be at our State Capitol advocating and raising awareness for Sophie’s story and gaining support for the Fail First legislation that is getting ready to go to the floor.  For more information on the legislation, see Don’t Make us Fail First.

We started out the day with a briefing and lunch and then made our walk up the hill to the
Capitol.  Sophie was ready, excited, and determined to share her story.

The Arthritis Foundation and other organizations set up their tables in the rotunda of the Capitol which is just below the entrances to both the Senate Floor and House Floor.  Our table with the Arthritis Foundation was just at the bottom of the grand staircase.

Sophie loved working the table, handing out buttons, and letting people know about her arthritis.  She would watch for anyone to come down the stairs and would immediately rush over to them give them a button, take their hand, and then lead them to our table where she would ask them to sign up for more information and we would have the opportunity to talk to them about her story and our experience with Fail First protocols. During this time working by the information table, we had the opportunity to meet with several Senators, Legislative Assistants, Physicians, and Lobbyists.   We met with Senator Tony Bisignano and Senator Tod Bowman who have pledged their support of the Senate File when it comes for vote.

We then moved upstairs to request an audience with Senator Julian Garrett who represents the county we live in.  When the Senators or Representatives are on the floor and you want an audience with them, you write a note to your legislator and hand it to the Door Keeper.  If your requested legislator is present the Door Keeper will give the note to a Page to deliver.  If they are in a committee meeting or not present, you then have the option to “Leave” them a note letting them know you were there to see them.  Senator Garrett was available and came off of the Floor to talk to us.  We had a short time with him to share our story before he had to leave for his Committee meeting.

We then went over to the House Floor to request an audience with our Warren County 20170315_151538Representative Scott Ourth.  We have the pleasure of knowing Representative Ourth from other events and have shared Sophie’s story with him before and consider him a friend and neighbor.  While Representative Ourth was in Committee when we went to request the audience, we were able to meet up with him a little later.  He took Sophie (and myself & Corrine from the Foundation) up the secret elevator to the House Floor and showed her around.  He showed her where he sat, gave her an official House of Representatives pin, and took her up to sit for an official picture as the Speaker of the House.  What an amazing experience for anyone, especially a 5 year old!  I am so very proud of  my little advocate and how amazing she did sharing her story.

She is still talking about her experiences at the Capitol!

If you ever have the opportunity, do NOT pass it up!


I’m an Ambassador, I’m an Advocate, I’m a JIA Warrior Mom

yes-advocateWhen my daughter was diagnosed a year ago with Juvenile Idiopathic Arthritis (JIA) my brain was swirling.  Over the past year she progressed from 1 joint containing arthritis to 6 joints and her eye.  I have been so very blessed to find a support group of moms from all over the world who are Mothering Juvenile Arthritis.

Who are these moms?  Most are seasoned Warrior Moms, some are new moms (like I was), all are fighting the fight along side their children.  Some have been to battle and won, some have been to battle and lost dearly, some of us are still fighting the battle every day.  Regardless of where we are in our journey, these moms have been a blessing beyond measure for me for the past year.  I have had the pleasure of talking on the phone with several moms, whom I have never met in person, to compare notes and get support.  After only 1 year on our journey, I am now one of the seasoned moms answering questions, providing support and giving input or encouragement to other new moms who are just starting to wrap their heads around this diagnosis.  We are a team.  We are fighting this disease together.  We spend countless hours on the phone with doctors, insurance, and pharmacies.  We spend grueling hours in cars and on airplanes to take our children to doctor appointments.  We have come to consider the team of doctors we see as family and we sometimes see or talk to them just as much as our real families.  We pray daily for our JA family members who are facing appointments, medication changes, flairs, pain, frustration… and we celebrate loudly our members who have reached remission!   We are in a never ending state of awareness of our children and how they move (or don’t move) and what their joints look like.  We are fighters.  We will fight with our children to encourage them to move and we will fight for them when the pain is so extreme they can’t move another step.

But our mission and fight doesn’t stop with our circle of JA Family or our personal daily battles.  We Advocate for all children with JIA.  We tell our stories to anyone who will listen.  We raise money to help find a cure for this dreaded disease.  We are Ambassadors and go to Capitol Hill and talk to Congress about the needs of our Arthritis Community.  We will take our fight where ever we need to take it in order to help others gain easier access to doctors, medications, treatment, and research.  We will make our voices heard so that our children do not have to suffer in pain silently.

NO child should ever think that living every day in pain is normal.

How can you get involved?  You can become an Advocate!

What is an Advocate?

Advocates help improve the lives of people living with arthritis. The key to success in changing government policies and funding is through grassroots advocacy and our advocates are the Arthritis Foundation’s chief resource for making positive changes in Washington. Click here to join the movement!

Source:  Arthritis Foundation, Advocate 101.

What does an Advocate do?

Advocates make their opinions and personal stories known. By signing up, you’ll receive Action Alerts in your inbox when important arthritis-related issues are debated on Capitol Hill.   In 5 minutes or less, you’ll be able to write your elected officials and tell them their constituents care about arthritis and how it impacts our communities.

Source:  Arthritis Foundation, Advocate 101.

Want to do more?  You can become an Ambassador!

What is an Arthritis Ambassador?

Arthritis Ambassadors are volunteers committed to taking part in the democratic process and serve as liaisons between the Arthritis Foundation and their Congressional District’s Representative. Each Ambassador’s efforts are crucial to the success of the Arthritis Foundation.Ambassadors are asked to work with the Arthritis Foundation Advocacy and Access staff on special activities to advance the Foundation’s advocacy efforts and to share their story with important decision makers. There is an Ambassador Briefing every other month to:

  • Update Ambassadors on the latest advocacy news
  • Present special guest speakers
  • And work on activities that will further Arthritis Foundation advocacy at the state and federal levels

Calls are recorded and posted to the current or past activities page. Ambassadors must be of voting age (18+). Click here to sign up!

Source:  Arthritis Foundation, Ambassador Program.

What is the difference between an Advocate and an Ambassador?

An Advocate receives the bi-monthly Advocacy in Action newsletter as well as periodic Action Alerts.  Action Alerts are customizable, pre-written letters that are sent directly to your elected officials.  Advocates also have access to the monthly Advocate Webinar Series, a collection of webinars on different advocacy topics that help Advocates understand more about Arthritis Foundation advocacy issues and topics. Click here to sign up as an Advocate!

An Ambassador is committed to forming relationships with their state and federal elected officials.  Ambassadors also receive Advocacy in Action, Action Alerts, and access to the Advocate Webinar Series, but also have the opportunity to participate in briefings held every other month.  Ambassadors have an activity every month with the goal to foster the relationship between them and their elected officials.  Click here to join the Ambassador program!

Source:  Arthritis Foundation, Advocate 101.

Join the movement!  Get involved!  Let’s fight this fight together.  Together we are Stronger than JA!