Friday, August 17, 2012

H.R. 6218: This Bill ROCKS

Does anyone out there remember the TV series Schoolhouse Rock? My kids loved those educational music videos that ran on Saturday mornings on ABC, although they must have watched the re-runs since the originals ran from 1973 to 1985.

This particular episode keeps coming to my mind lately:



Why?

Because I volunteered to be part of the AARDA -- the American Autoimmune Related Disease Association's -- awareness campaign for house resolution 6218 currently before congress. I have agreed to meet with a member of my congresswoman's staff to advocate for this bill which includes these provisions:

  • ".....to establish and maintain a committee to be known as the Autoimmune Diseases Interdepartmental Coordinating Committee for the purpose of formulating recommendations for the coordination of governmental and private programs and activities relating to autoimmune diseases......Responsibilities -- 
  • develop criteria to be used in defining and identifying autoimmune diseases;
  • monitor Federal, State, and private activities with respect to autoimmune diseases;
  • make recommendations regarding any appropriate changes to such activities, including recommendation to the Director of NIH with respect to the strategic plan developed under paragraph 5, 
  • make recommendations regarding public participation in decisions relating to autoimmune diseases;
  • develop and annually update a strategic plan for the coordination of governmental and private programs and activities relating to autoimmune diseases, including --
  • proposed budgetary requirments;
  • a summary of advances in autoimmune disease research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to servics and supports for individuals with an autoimmune disease;
  • an assessment of research that is being conducted on autoimmune diseases;
  • an assessment of the ability of health care providers to identify and diagnose autoimmune diseases properly;
  • an assessment of the quality of postgraduate continuing education programs on autoimmune diseases; and 
  • recommendations on education and continuing education on autoimmune diseases for health care providers; and
  • on a biennial basis, submit to the Congress such strategic plan and any updates to such plan."

(Bolding mine.)

I meet with my U.S. Representative's district director on August 23rd. The AARDA is providing me with some suggested talking points, but I am encouraged to convey my particular reasons for support of this bill. I'll be happy to provide my personal experiences but I also think that I have the capacity to represent many, many people with Sjogren's syndrome thanks to Reasonably Well, so add your voice to mine!

What would YOU say to this House representative in support of this bill?

8 comments:

Unknown said...

I contacted my 2 Ohio reps to get on the ball & support this bill!
here's y:
September is National Alopecia Areata Awareness Month.
Alopecia Areata, pronounced (al-oh-Pee-shah air-ee-Ah-tah) is an Emotional, Devastating and Highly Unpredictable, non-contagious skin disease that effects more then 4.7+ million Americans.
This autoimmune disease attacks the hair follicles and makes the hair on the scalp fall out and in some cases of this disease causes some people to lose all of their body hair.
Autoimmune disease means the body’s immune system attacks itself, and in this case, the hair follicles.
Primarily a Children’s and young Adult disease, Alopecia Areata is not discriminatory and can attack the hair follicles of any Gender; Male or Female, any Race and any Age of people.
I myself developed Alopecia Areata for the first time, in my 50’s!
Alopecia Areata usually starts with the loss of hair on the scalp and OR elsewhere on the body with one or more small round smooth bald patches that are coin sized.
This auto immune disease can develop in the eyebrows, resulting in the loss of one or both eyebrows or in the loss of eyelashes and in some men it can begin in their beards.
Total scalp hair loss can happen with Alopecia Areata and this is called Alopecia Totalis, or the loss of all body hair is called Alopecia Universalis.
Currently Published June 30,2010 an Acclaimed Geneticist, Doctor Angela Christiano ( who herself has Alopecia) and a team of investigators from Columbia University Medical Center have found 8 genes that contribute to Alopecia Areata and one of the genes has a possibility of playing a role in the onset of this disease.
This study may take some time and as of yet, there is no cure for Alopecia Areata at this time!
There are some treatments that may promote hair growth, but since this is a highly unpredictable disease only a person’s own body can turn off this condition.
Victims struggling with Alopecia Areata may have their patches of hair loss regrow only to find that the hair falls back out again and sometimes new hair loss appears in different areas of the scalp or body.
That is why this is such an Emotional, Frustrating and Devastating Disease for those of us who have Alopecia Areata,Totalis or Universalis.
Emotionally one of the hardest hit by the effects of this auto immune disease are young Children and Teens who have to deal with the added pressures of other kids at School and the peer pressures surrounding them in regards to their appearances.
Due to no fault of their own, young children and teens who have any form of Alopecia Areata can be called names and are sometimes bullied for their appearance !
It is also very difficult for any Females to have Alopecia Areata, due to the fact that women value their hair and how it reflects to the public in acknowledgement of their appearances.
There still seems to be a double standard in today’s society, that Men can be Bald but women need their hair to look acceptable to the general public.
Oh yes, the looks, the stares, the questions if a woman appears without hair.
Many victims of Alopecia Areata, Totalis, or Universalis resort to Prosthetics (hairpieces) or to hats or scarves when dealing with our appearances.
There are also makeup or tattoo techniques that will help with the loss of eyebrows.
You will want to consult a Dermatologist if you discover that your hair loss is appearing in small round shiny patches on the scalp or anywhere else on the body and discuss with them your treatment options.
For more information about Alopecia Areata, Totalis, Or Universalis and links to other informational sites about this subject you can visit www.omgmyhair.com.
This site also contains my personnel journey in living and dealing with Alopecia Areata for 12 months now.
Omgmyhair is a LLC Non-Profit for Victims of Alopecia Areata.

Margie Jelar
Northeast Ohio Support Group Leader
Alopecia Areata
mjelar@omgmyhair.com
www.omgmyhair.com

Scott S said...

I agree that this legislation is important, although as someone with autoimmune (type 1) diabetes, I have been very disappointed by the lack of commitment that the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has put into the entire autoimmune disease coordinating committee. In fact, the NIDDK has changed representation regularly (demonstrating alack of dedicated resources from this institute) and the NIDDK has not committed itself to the cause of sharing information gained with other institutes on its learnings in the autoimmunity front. Considering there are 3+ million of us with type 1 diabetes, this is disappointing, but the mandates on the institute are seriously lacking. I'd like to see a requirement of resources and participation mandated into law, rather than the current voluntary participation and resource allocations. Other institutes within the NIH have taken the role more seriously (for example, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) seems to take the role much more seriously. My concern is that the coordination among the institutes of the National Institutes of Health (NIH) is now strictly voluntary, hence it lacks any legislated mandates so participation varies widely from one institute to another.

Shara said...

I think I'll let you just carry the ball and speak for me. You'll do a fine job of it I'm sure. Thank you for your service.

Vivian said...

Julia, You will make a perfect representative for us. Let them be aware how these diseases totally alter our life. I am aware of my SJS every waking minute. I do wish there could be some remission time. Proud of you, Vivian

Michelle Huddleston said...

All I know is that I hurt. I hurt every day . All day.

Anonymous said...

Julia - these look like we are targeting the right things...we need to work on figuring out what is causing this...saving people lives in every aspect and quit throwing away dollars jumping from doctor to doctor with repeat testing and treatments that are no more than bandaids - Let's create too some ownership within the medical field...some central resource or specialist that can quarterback a patients care and be responsive to emergent needs - not on a quarterly basis. These are the things we desparately need to focus on...Heck I have only been in this situation for 3 months- but already am painfully aware of the gaps and the frustration that goes along with it. Please let us know what each of us can do to help...thanks, Heidi

annie said...

You're intelligent, articulate and not shy. You'll do very well, Julia.

Anonymous said...

I agree completely with Vivian. There is not a minute's respite from this awful life-ruining disease, regardless of how "benign" the doctors like to tell me it is, or how many palliative measures I try. I'm not looking forward to potentially living another 40 years with this disease. Thanks for representing us and making our suffering known!

ShareThis