Advocacy Goals 2013

Advocacy Goals 2013

As we look to the new year, our political leaders are faced with many challenges. In 2012, we had many states playing the "waiting game". Missouri and Kansas fall into this category and didn't do much in 2012 due to the election. My least favorite phrase to hear on both sides of the aisle was, "After the election we will . . . ". This brings us to "After the Election". Whether you are Republican, Democrat, or straight down the middle, we should share some of the same common goals. Here are my top Advocacy New Year Resolutions:

1. Find out who my new elected officials are in 2013.

Whether you have an incumbent or someone new in office in your district, you should know who they are, how to contact them and if they are local, when there office hours are in your home town. Here is a helpful website: http://www.usa.gov/Contact/Elected.shtml

2. Attend your state advocacy day. Missouri and Kansas will both hold advocacy days this year. If you haven't been before, this should be the year you try to attend with your family! Check the MHA website for details for this fast approaching event!

3. Write a letter!

Take the time to sit down and write a letter to at least one of your elected officials. If you are not ready to share your story, send them a card to just say hello, wish them a happy birthday or send your families holiday card. The more personal connections you make, the better off you will be down the road.

4. Attend at least one new MHA event this year.

We offer so many different educational and fun activities throughout the year. This year, we will be offering events in Wichita, Kansas City, Columbia and Springfield. It is amazing how many connections you can make at an educational event. The more educated you are, the better advocate you can be for your family.

5. Share your story.

I will be collecting stories to take to our two state capitols. Take time out this month to write to your story and send it to me. You will be amazed at how your personal story can help change bleeding disorder legislation for the better. If you need help, please feel free to e-mail me or call me and I will help you through the writing process.

6. Take a close look at your family's insurance plan.

Many things have changed or are changing with your insurance. Do you know what those changes are for your family? Who is "In-Network"? Make yourself an insurance expert and look over your plan with a fine tooth comb. If you have questions, your Human Resources department or the insurance company should be able to help.

7. Take action if there is a problem.

When you have a problem, take action. Sometimes, it helps to share your problems with MHA so that we can see if the same problem is happening with other families. As Health Care Reform is implemented, we want to make sure that our community is taken care of and that nobody falls through the cracks. If you, or your family, ever have a problem, whether it is with your insurance company or your pharmacy, please look to MHA or NHF for help. Use us a resource. We are here to help you!

8. Serve on the advocacy committee.

If you are passionate about advocacy or government affairs, please contact me. We are currently forming a committee. Kristin Marema e-mail: mucarleton@hotmail.com

Bleeding Disorders Day In Missouri

The Midwest Hemophilia Association has announced that Bleeding Disorders Day in Missouri will be March 21st in Jefferson City, MO.  This is a great opportunity to share your story with your elected officials and be an advocate for our community. Lunch will be provided by the association.  If you need travel assistance (your mileage paid for), please contact me personally and we will help! 

Please look for our event page on Face Book!

http://www.midwesthemophilia.org/

NHF Conference Summary To Follow

I apologize I don't have all of my meeting summaries posted yet.  On Saturday evening, right before the final night event at NHF, we learned that my in-laws house had caught fire.  We were devastated.   (as were they)  Trenton had been staying with them while we attended the conference in Chicago.  My husband and I feel very blessed that they were not home at the time and that nobody was injured.  We didn't arrive back in town until after dark this evening and have not been over to their house.  My in-laws will be living with us for a while.  They will need a new roof, carpet and many other things.  The fire department in Columbia did an amazing job of taking pictures off the walls and saving furniture. They did loose many "things".  They are just things and we are very happy, once again, that nobody was injured.  Tonight I helped my mother-in-law squeeze things into our kitchen that they had dug out from their house this afternoon. They went to bed early and I am hoping they will get some much needed sleep this evening.

I will try my best over the next week to post summaries of all of the sessions that I attended.  This was by far the best NHF Conference that I have attended.  I hope sharing all of the information will motivate everybody as much as it is motivating me!

Please say a prayer for my in-laws tonight!

Rough Time

The last few weeks (almost 6 weeks to be exact) I have had company at my house. I complained to any and everybody that would listen to me. During this period I also had many things going on in my work and personal life. I threw numerous pity parties for myself. (. . and probably consumed one too many glasses of wine! :)

This weekend I got over it all. Yes, the company left and that helped me "get over it" much faster. I was also reading post on the FB page "Hemo Friends" that I check daily. Some of the things that these families go through on a daily basis made me sit back and think how truly blessed we are. It also made me think about how I could turn my negative attitude into positive energy that might help other people.

I can't imagine infusing Trenton every day. I can't imagine him having a port or having a port infection. Inhibitors. .. . .would probably have to join the wine of the month club! Recently, we lost a member of the group. A young boy around Trenton's age passed away because he didn't have access to care and could not receive his factor fast enough. The love and support this group showed to this family made me cry. . . . several times!

The things that these Hemo Moms go through every day makes my complaints in life look like nothing. These women are strong, resilient and more importantly advocates for their children every day. Even though I have been active in the hemophilia community since 1990, I have learned more from this group in recent months than I have at some conferences.

I feel very blessed that Trenton has had so little incidents. Hemophilia is still part of our life. I still pray each night that God would look over him and keep safe. I realize, though, that we all have challenges in our daily life whether it is Hemophilia or something personal that is holding us back. What do we do with these challenges?

I know that next time I think about throwing a pity party for myself, I will turn to my "Hemo Friends" group. How can I support these parents and friends? How can I put my energy into something positive instead of a glass of wine?

I head to Chicago in less than two weeks for the National Hemophilia Conference. I look forward to gaining knowledge that I can bring back to this FB group and also bring back to the Midwest Hemophilia Association.

Cheers!

Boy Scout Motto - Be Prepared

The Boy Scout motto is "Be Prepared". I was a Girl Scout for over 10 years . . . not a Boy Scout. When Trenton fell recently I was "not prepared".

When Trenton was first born I was your typical paranoid Hemo Mom. (even though I said I wouldn't be) I had a medical alert bracelet on him at all times and one on the car seat. I carried the factor in a cooler with us on any trip over 30 minutes away. I had several ice packs in the diaper bags at all times. I had medical information on the fridge. I had medical information in the diaper bag . . even the travel letter.

Fast forward almost three years .. . .

Trenton had a horrible fall recently. We were crossing a parking lot and he did a face plant. He didn't put his hands up to catch himself. His nose and lip took the impact. There was more blood coming out of my child's nose than you would ever want to see. His cute white frog t-shirt was a throw-away within two minutes.

I reached in the diaper bag to find one ice pack. . . that was so old that is didn't work! After we controlled the bleeding I tried to call the treatment center. I didn't have the correct number in my phone and I didn't have the nurse's pager number. After calling the hospital's main number and waiting on hold I was able to talk to the nurse.

We went home and dosed with Amicar for the mouth bleed. After I gave Trenton the dose I realized that it was expired Amicar! (Do you see where I am going with the "not prepared")

I can write another three paragraphs about what went wrong, but I won't. Here are my suggestions for the future:

If you have a child with mild Hemophilia, always be prepared. Don't become so relaxed that you think nothing will happen to your child. You never know when you will be in a car accident, or have a silly fall in the parking lot.

*Check your factor and Amicar often. If you have a wall calendar, circle the expiration date on the calendar and maybe the date a month before so that you can have some on hand.

*Always have your child wear their medical alert bracelet! If your son is young like mine, they won't be able to tell a paramedic that they have Hemophilia in a medical emergency.

*Keep your HTC's numbers close. I had one number in my phone, but not the right one. I now carry our nurses' business card in my purse as well.

*Have all emergency numbers posted clearly in your house. Our numbers are on a dry erase board on the fridge. I realized that I hadn't updated our nurses' name and that my mother-in-laws number was no longer visible.

*We still take factor on longer trips. I would recommend doing the same. Check the NHF website before you go on a trip to find out if there will be an HTC close by.

Please feel free to post more tips below!

Remember . . . Always Be Prepared!

It passed!

Today was a crazy day. My baby boy woke up with over 100 degree fever and it was raining outside. I ran into work briefly, but came home to be with Trenton. As we sat resting in the basement, I heard my phone ring.

"I have confirmation that your bill passed, " Jay Bryant-Wimp. I was so excited. The Gateway Hemophilia Chapter and The Midwest Hemophilia Assocation have worked for years to get the Standards of Care for People With Bleeding Disorders Passed. This year I feel I gave it my all. Mary (from St. Louis) had given it her all for two years and couldn't make the drive this year due to work. (She still worked on getting the bill passed from home . . don't you worry) I felt like it was on me to get this bill through.

So many friends, family, and people from the Hemophilia Community helped get this bill passed. I had classmates from Warsaw that wrote letters to the Legislators. (These are people that I haven't spoken to in over 10 years!) Many people gave up a day or days of work to come to Jefferson City. Many people brought their families from 100's of miles away to talk to their Legislators.

I am excited that Missouri will now have something "on the books". There are going to be many changes in the coming years and it will help to have this bill.

I'll post more details about the bill soon!

CSL Grant

In the fall I applied for an advocacy grant from CSL Behring on behalf of the Midwest Hemophilia Chapter. I am attaching the grant below!

CSL BEHRING AWARDS GRASSROOTS ADVOCACY GRANT
TO MIDWEST HEMOPHILIA ASSOCIATION IN KANSAS CITY, MO
Grant provides support for patient initiative to obtain passage of Standards of Care.

King of Prussia, Pennsylvania, January 20, 2011 – CSL Behring, a global leader in the plasma protein biotherapies industry and a subsidiary of CSL Limited (ASX:CSL), has awarded an advocacy grant to the Midwest Hemophilia Association (MHA) through the Local Empowerment for Advocacy Development (LEAD) program. LEAD grants support the grassroots advocacy efforts of organizations committed to helping people who use plasma-derived or recombinant therapies to manage rare and serious diseases.

MHA will use its LEAD grant to bolster legislative efforts in support of passage of Standards of Care for People with Bleeding Disorders in Missouri. In addition, MHA will start grassroots advocacy in Kansas and also help educate the public about women’s bleeding disorders.
“MHA is delighted to receive this generous LEAD grant from CSL Behring. This grant will help our ultimate goal to make all our members better self-advocates,” Kristin Marema, MHA Board Member, said.

LEAD grants total $500,000 since 2008
According to Dennis Jackman, CSL Behring’s Senior Vice President, Public Affairs, the company has awarded 33 grants totaling approximately $500,000 since the LEAD program was established in 2008. Almost $100,000 was awarded in the current grant cycle to six patient organizations including MHA.

“CSL Behring is pleased to recognize and support these organizations, all of which play a vital role in expanding patient access to information and healthcare,” said Dennis Jackman, Senior Vice President, Public Affairs, CSL Behring. “We hope that these grants will help improve the lives of people with bleeding disorders, immune deficiencies and hereditary angioedema.”