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Saturday, March 2, 2013

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:

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:


Craig Sumter said...

I work for a healthcare market research firm and we want to interview individuals with hemophilia A in the Atlanta and New York City areas. We will pay you $225-$250 for the interview. We want to understand how individuals live with and manage hemophilia in their everyday lives. Please contact me if interested.

Craig Sumter

karen dish said...

I have been a patient of hemophilia . I had tried a lot of anti viral med prescribed to me by doctors over the years but I could not see any improvements in my symptoms. One day while going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from hemophilia,quickly i contacted him and he prepared a herbal medication for me which i received and used as instructed. After few weeks the improvement were very visible. the pain and tightness in the joints stopped and the sores started to heal. I would recommend this to all my friends,families,around the globe suffering from can contact him through his email on advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS

moore oreta said...

Having haemophilia A this means that his body, his immune system, fights off the medicine – the infused factor VIII. The alternative clotting factors that we used to control bleeding were much less effective. His medical condition was heart broken. Despite our visit to several doctors his health wasn't getting better. He was subjected to different medications, by many doctors for treatment without the assurance of having a permanent cure. Having a son with hemophilia and then, the added challenge of an inhibitor, is not always easy. Suspicion that something wasn’t right began when he was 6 months old due to the heavy amount of bruising which started showing up all over his legs. As a parent, I would love to fix things and make everything better. Fortunately, there have been other positive alternative (Herbal Medicine) though few people doesn't know the challenges of living with hemophilia. If your child is having same problem, do not expose him/her to more danger, use a herbal remedy that is safe and effective. Contact him directly for more info with his email address: