Health Care Access & Cost Hardship Stories Needed!

Are you experiencing hardship right now due to health care access issues and escalating health care costs?  If you are experiencing such hardship, please do not give up. 

The Arthritis Foundation is in search of hardship stories related to health care access and costs.  They will be taking the hardship stories to Capitol Hill on your behalf. 

I am sure that many of you have stories that should be told.  Remember that people without chronic conditions do not understand these hardships.  It is up to all of us to educate them, especially our nation’s leaders.

Take a few moments to document your situation, so the Arthritis Foundation can advocate for you and everyone else in similar circumstances.  Simply complete the short survey form, including your story, and that’s it.  You’re finished.

After you send your story, visit the Arthritis Foundation’s access to health care page.  It has a phenomenal list of resources to help in various situations.

Kudos to the Arthritis Foundation for advocating for us!

Time is Running Out to Support Juvenile Arthritis Registry

The deadline to support the juvenile arthritis registry is quickly approaching.  Comments or letters to the U.S. Food and Drug Administration (FDA) must be received by July 14, 2009.  Have you sent your letter to the FDA yet?

If you have not sent a letter yet or have no earthly idea what I am talking about, see this June 30, 2009 blog post: Contact FDA Now for Juvenile Arthritis Registry!

The Arthritis Foundation makes it easy to send your letter.  They already created a letter of support with all of the pertinent information and you can add your own story or message to it as well. 

I sent in my letter with a personal note that if a juvenile arthritis registry existed when I was diagnosed with JRA almost 3 decades ago, my treatment may have been much different.  Because juvenile arthritis should be treated as quickly as possible to prevent long-term complications, pediatric rheumatologists need as much relevant information as possible to effectively treat patients.

Help the children who have juvenile arthritis or those that may be diagnosed with it in the future.  They need your voice.  Send your letter today!

If you need help with it, let me know.  I am happy to help in any way I can.

Contact FDA Now for Juvenile Arthritis Registry!

The Arthritis Foundation testified recently at the U.S. Food and Drug Administration about the need for a Juvenile Arthritis (JA) Registry.  Now, the Arthritis Foundation and children with juvenile arthritis need your help.

Here is a message I received recently from the Arthritis Foundation:

Contact the FDA Today
JA Registry Needed Now! 
More Info

We need your help! 
 
The Arthritis Foundation has been advocating for many years for the creation of a juvenile arthritis registry. A JA registry would improve the care children with arthritis receive. It would help pediatric rheumatologists make better decisions about the type of medications our children need and it could serve as an early warning system if there are unintended side effects or outcomes of JA therapies. The Arthritis Foundation testified last month at the Food and Drug Administration (FDA) recommending that such a registry be established:  http://www.arthritis.org/murphy.php
 
Now it is your chance to let the FDA know we want them to continue their commendable work in this area and make our dream a reality – the creation of a fully funded JA registry that would help our kids! Click here to learn more, take action and become an advocate!
 
Please personalize your letter with your individual story and feel free to include some or the entire letter which can be downloaded here.  Please submit your comments either by regular mail or email by July 14th to:
Division of Dockets Management
(HFA-305), Food and Drug Administration
5630 Fishers Lane, rm. 1061
Rockville,  MD 20852
Or
Submit electronic comments to http://www.regulations.gov/fdmspublic/component/main?main=SubmitComment&o=09000064809306d1
All comments should be identified with:  Docket No. FDA-2009-N-0145

As someone that grew up with juvenile rheumatoid arthritis, I wish that a registry would have been in place.  It may have been a very helpful tool for my pediatric rheumatologists.  Please take a few minutes to contact the FDA now for the children that are affected by arthritis today and in the future.  Be their advocate.

Tell Congress Why You Want Health Care Reform for People with Arthritis!

On Wednesday, June 10, 2009, the U. S. Congress told the Arthritis Foundation that they need to hear from people like us about health care reform.  The Arthritis Foundation sent out a message the same day that read in part:

“It is very important that you tell your Members of Congress about the unique health care needs of people with arthritis.  If you are currently experiencing challenges accessing or paying for health care, please tell Congress your story.  If you don’t tell them about the problem, Congress can’t include a solution in the legislation.” 

Now, I am asking you to take a few minutes to let your Congressional representatives know how you feel.  Tell them your story.  Tell them if you struggle to get quality health care at an affordable price because of your arthritis.  Tell them if you have to decide whether to buy groceries or pay for your medications.  Tell them if your mounting debt is due to medical bills your insurance provider refuses to cover.  Tell them your story.

People who don’t have a chronic condition do not know how inadequate health insurance or lack of health insurance affects us.  Now is the time for you to tell them. 

Don’t delay on this one.  According to the Arthritis Foundation, Congressional committees will start discussing health care reform legislation this week (if they haven’t already).  This is your chance to tell them your point of view while it is still in committee and before it goes to the Senate or House of Representatives for a vote.

Get started now.

Arthritis Bill Re-Introduced in the Senate! Call to Action!

Great news!  On May 6, 2009, the Arthritis Prevention Control and Cure Act was re-introduced in the Senate by United States Senators Barbara Boxer (D-CA), Kit Bond (R-MO) and Ted Kennedy (D-MA)!

The bill was introduced in the U.S. House of Representatives earlier this year, on February 26, 2009, and is now also in the U.S. Senate.  The Senate did pass the bill last year before the 110th Congressional session ended.  However, because the House of Representatives did not pass the bill before the 110th session ended, the process must occur again.

Some main points of the Arthritis Prevention Control and Cure Act are that it will:

• Enhance prevention efforts related to arthritis;
• Expand and strengthen research programs relating to juvenile arthritis;
• Establish a juvenile arthritis population database to track our kids and monitor their treatments;
• Enhance support for physician training programs; and
• Establish a loan repayment program for pediatric rheumatologists to address the country’s severe shortage of these critical health professionals.

So, here is your call to action.  Write or call your Congressional representatives to express your support of this crucial bill (H.R. 1210, S. 984).  If you prefer to send a letter, there a few different methods to choose from.   You can send a standard letter showing your support, prepare your own letter or personalize the standard letter.  Anything you do will help this effort!

To obtain contact information to call your representative or to easily send a letter, go to the Arthritis Foundation Arthritis Action Center.  The Arthritis Foundation has made it very easy to show your support!

To read the full text of the Arthritis Prevention Control and Cure Act currently in the Senate and House of Representatives:

House of Representatives – H.R. 1210

Senate – S. 984

Did You Send Your Letter or Video to Congress Today?

I certainly did!  You can too!  Just go to the Arthritis Foundation’s Arthritis Action Center.  Enter your zip code and determine what you want to send.  It is that easy!

If you have not sent your letter or video yet, what are you waiting for?  The Advocacy & Kids Summit continues through tomorrow, March 4, 2009.  Help support the arthritis advocacy effort by sending in your letter or video while the summit is still going on.

If you enjoy giving your two-cents to Congress, then by all means, volunteer to be an Arthritis Ambassador.  It is an important job that anyone can participate in.

Get Involved With The Advocacy & Kids Summit 2009

The Advocacy & Kids Summit takes place on March 3rd and 4th, 2009 in Washington, DC. Approximately 350 individuals will be at the Summit, meeting with Congressional members about arthritis and how it affects their lives.

I am sure many of you would like to participate. The good news is that it is not too late. Get involved with the summit by sending an email to your Congressional members on one of those two days.

Don’t feel like writing an email? Don’t worry. Send a video instead as part of the Virtual Summit! Just make a video that lasts no more than a few minutes. Let them know who you are, what arthritis means to you and what you want them to do about it. It is that simple.

Go to the Arthritis Foundation’s Arthritis Action Center to get started. Good luck!

Get Those Walking Shoes Ready!

It’s that time of year again!  Yes, you heard right.  It’s time to start thinking about the Arthritis Foundation’s 2009 Arthritis Walk. 

Those of you that have participated in the Arthritis Walk know that it is a great time.   For those of you that have not participated in an Arthritis Walk before, take a look at the video below.  It shows what you will encounter at the walk and why the walk is so important.

I really enjoy going to the Arthritis Walk.  You meet other people, children and pets that have arthritis.  You meet their friends and families that are their to support them.  You also meet various vendors that can answer your questions.  In years past, I have seen rheumatologists, chiropractors, representatives from joint replacement companies, health-related companies, animal hospitals, etc.

On top of all that, the Arthritis Foundation has tents for Arthritis Advocacy, general information, a children’s area with fun things to do and educational materials.

The walk is usually held in May in numerous cities nationwide.  Find the location closest to you. 

It only takes a few minutes to register.  If you register now, you have time to start a team, raise some funds and start preparing your body for the walk.

Stay tuned for upcoming posts on preparing for the walk.

How Many Pediatric Rheumatologists are in Your Local Area?

originally published 5/28/08

Did you know that Juvenile Arthritis affects approximately 300,000 children in the United States?  Unfortunately, there are not enough pediatric rheumatologists to cover the demand.  It may not affect you as an adult, however, if your child, niece, nephew, friend’s child, neighbor’s child, etc., is one of the 300,000, it will affect them tremendously.  The problem is this: If a child has a form of juvenile arthritis and it goes undiagnosed for a significant period of time, the child may suffer the consequences.  It is very important that children are diagnosed as early as possible so the necessary treatment can begin.  Otherwise, the affected joint(s) may continue to sustain pain, swelling, joint damage, etc.  Later in life, this could lead to deterioration of the affected joint, which affects quality of life and may well lead to joint replacement, joint fusion or some other type of significant treatment.

How do I know this?  I was one of those children back in the 70’s.  For as long as I can remember, I have had joint pain, swelling, tenderness, etc.  In those days, if you went to the family doctor or emergency room, you were told that it was probably just a sprain.  For years, this occurred until I finally saw a pediatric rheumatologist who diagnosed me with Juvenile Rheumatoid Arthritis (JRA).  The problem is that it was undiagnosed for eleven years.  By then, significant damage had already occurred in the ankle joint.  I could keep telling my long story, but to get to the point, I had to have a total ankle replacement at the age of 30.  It was a long time coming, but that is an early age to have a joint replacement.

My point is that children need to be diagnosed early to help prevent significant problems down the road.  Will it prevent significant problems by 100%?  Surely not, but we owe it to our children and the children of this nation to help provide them the best care they can get. 

How can you help?  It’s easy!  Support the Arthritis Prevention Control and Cure Act.  It calls for more pediatric rheumatologists among other necessities.  The Arthritis Foundation makes it simple to show your support.  Just go to the Arthritis Foundation’s Arthritis Action Center and enter your zip code in the “Find Your Officials” box.  The resulting page will show your officials and will have an “Action Alert” box.  Just follow the links from that point on.

Just for kicks, try searching for a pediatric rheumatologist in your area.  You’ll probably be surprised to see that they are few and far between.  About a month ago, I checked for pediatric rheumatologists in Kentucky.  Unfortunately, I only found two full-time pediatric rheumatologists and they are both in Louisville.  The really sad thing about this is that Kentucky is the second-highest state for the prevalence of arthritis.  In other words, the Kentucky population has a higher percentage of arthritis than most of the other states.  However, we only have two full-time pediatric rheumatologists to serve the children with arthritis and many of those children will have to travel hours just to see the doctor.  Pretty sad if you ask me.

Write your Congressman! The APCCA Needs Your Support!

originally published 5/15/08

The Arthritis Prevention Control and Cure Act (APCCA) desperately needs your attention.  It has been introduced in the House of Representatives (H.R. 1283) and the Senate (S. 626) in 2007.  However, it is still in Committee.  We need to get it out of Committee. 

What can you do?  It’s simple.  Write your Congressman.  The Arthritis Foundation’s Action Center makes it easy for you to do this.  They have standard letters you can use and they make it easy to determine where your letter should go.  Start with a standard template and add your personal story.  However you decide to do it is fine, just please write your Congressman and support the Arthritis Prevention Control and Cure Act.

If you have any problems, let me know.  I’ll be happy to help.

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