Pre-Existing Condition - Affordable Care Act & Sickle Cell Disease

According the the US Health & Human Services (HHS) the Obama administration moved forward today (November 20, 2012) to implement provisions in the health care law that would make it illegal for insurance companies to discriminate against people with pre-existing conditions.

The Affordable Care Act (aka Obama Care) beginning in 2014, prohibits health insurance companies from discriminating against individuals because of a pre-existing or chronic condition.

This is wonderful news for people in the US living with sickle cell disease. We will NOT be penalized by denying medical coverage or being charged more for health coverage because we have a disease. This sounds very fair to me!!!!!

Read for yourself:

HHS News
Healthcare.gov Affordable Care Act - general info
Features of the new healthcare law

Treating Sickle Cell Disease With Transfusion Therapy

 

From time to time I get request from people to write guest blogs on the subject of Sickle Cell Disease and associated treatments. I encourage my readers to read, research and write about sickle cell.

 

I do not endorse any one treatment or the guest blogger's comments, but I do want my readers to be involved in the process of treatment analysis.

 

I have my personal opinions about the subject of "Transfusion Therapy" and its associated risks, i.e. causing Iron Overload (damage to liver, heart & other organs), Alloimmunity (immunity against transfused red blood cells & antibodies that target and destroy the transfused blood cells), Hyperviscosity (sticky blood which can cause stroke, higher blood pressure), and Transmission of virus' (more transfusions could = more chance of transferred blood infection). But, I'll keep my opinions to myself.

 

What I will say is; "Know the benefits AND risks with any treatment or 'cure'. Talk to your doctor and weight them for yourself, then decide what treatment is best for you."   

 

This guest blogger is Alex Kerwin, a Michigan-based freelance writer from Central Michigan University. Outside of writing, he helps organizes support groups for those struggling with addiction.

"One of the leading treatments for sickle cell anemia is transfusion therapy.

 

The Seriousness of Transfusion Therapy
Transfusion therapy can save the life of a patient with sickle cell anemia. In other cases, transfusion therapy can protect organs from becoming damaged by the disease. The treatment is very serious and requires much attention to detail. Any doctor without extensive knowledge of sickle cell anemia may wind up causing new complications that would otherwise never occur.

Red blood cells are very complicated to handle in a medical fashion. However, if the procedures are performed correctly, the transfusion therapy will have very beneficial results. Transfusion therapy will cause a suppression of circulating cells that have been deformed by the disease. This helps to reduce episodes of pain and other symptoms by introducing healthy and well shaped red blood cells into the body.

The Many Types of Transfusion Therapy

Transfusion therapy can be performed in a variety of ways. Simple transfusion, erythrocytapheresis and partial exchange are all methods of transfusion used for specific cases. The most extreme cases would usually benefit from a treatment of erythrocytapheresis. Whichever specific method is used, transfusion works by introducing new cells into the body. This blood can be of any age, because age usually has no impact on the blood.

The major debate about transfusion therapy is related to the lack of knowledge of how the body may react to cell transfusion. There are many potential dangers when receiving cell therapy. The main goal of transfusion therapy is to add more healthy red blood cells in order to remove the threat of the sickle shaped cells. The problem is red blood cells contain iron. When a patient receives numerous blood transfusions, they may accumulate too much iron in the body. Transfusion therapy is a serious operation that should be discussed at length with the doctor before any decisions are made."

Sources:

 

http://scinfo.org/guidelines/transfusion-therapy

http://www.ihtc.org/medical-professionals/blood-disorders/sickle-cell-disease/transfusion-therapy/

http://health.nytimes.com/health/guides/disease/sickle-cell-anemia/treatment.html

 

Thank you Adam, I really appreciate your time and effort to educate people about this therapy.

 

 

 

 

 



Ryan Clark - From Sickle Cell Disease Tragedy To Triumph

 

While intellectuals are "writing" abstracts on how to care for people with Sickle Cell Disease, Ryan Clark is "doing" something about it.

Ryan knows first-hand the effects of loss that surround living with sickle cell. As he states, "The loss of my sister-in-law & my own life-treatening experience with sickle cell gave me insight into the intense agony people with the disease go through daily."

What Ryan is "doing" is through his foundation Cure League which is tackling sickle cell.

Their goals are:

"Work together to fund research studies and develop sickle cell disease educational outreach with end goals of:

• Finding effective new sickle cell disease treatments
• Identifying a cure for sickle cell disease
• Expanding patient access to comprehensive sickle cell disease care (in PA)
• Increasing public awareness and reducing the stigma associated with sickle cell disease.

This is putting money, time & talent where your mouth is.

You go get'um Ryan Clark & Cure League. I'm cheering you on over here and people with sickle cell disease thank you in advance.

Now, go win that Super Bowl for PA!!!!!!

 

September - Sickle Cell Disease Awareness Month (2012)

It all begins this week.

The New York Mets is sponsoring a wonderful event at Citi Field Stadium on September 8, 2012. New Yorkers will see, hear and support Sickle Cell Disease awareness through their favorite sport, baseball.

On September 15, 2012, The Hina Patel Foundation is sponsoring a Walk/Run to support Sickle Cell Awareness in California.

See pictures of this event at Flickr.com

The month is full of activities and events to bring awareness to sickle cell disease, as well as, much needed funds to many sickle cell disease related non-profit organizations for the services they provide.

Whatever you do this month to support Sickle Cell Disease Awareness, know that there are people suffering all over the world with no voice, no influence or power. They rely on people like you and me to SPEAK OUT, STAND UP, GIVE our TIME, TALENT & MONEY to support awareness and services for people with Sickle Cell Disease.

I don't have a lot of money, but as long as I have breath I will lend my voice, and anything else that doesn't hurt, to people living with Sickle Cell Disease.





Happy September!!!!!!

For more info about Sickle Cell Disease check out www.scinfo.org

NHLBI Seeks Public Comment on "Draft" 2012 Sickle Cell Management Treatment Guideline

The National Heart, Lung, Blood Institute (NHLBI) is requesting public comment on the "New" treatment guideline for adults with sickle cell disease. (due August 31, 2012)

The original document (dated 2002) tells the medical community "how to treat people with sickle cell" AND it needs to be updated.

"WE" PEOPLE WITH SICKLE CELL" NEED TO HAVE OUR VOICE, IDEAS, COMMENTS added to this important document.

Check out NHLBI website for more info on how to add your comments (or see links below)

Public Review and Comments Due: August 31, 2012

•Disposition of Public Comments
•How to Review and Comment
•Review and Comment Form, Excel (xls) file, 44 K (Form must be returned by email attachment to scd_guidelines@nhlbi.nih.gov)


Being Pro-active about "OUR" health, this OPPORTUNITY is "OUR" chance to tell doctors what "WE" think should be done to treat Adults with Sickle Cell Disease!!!!!!!!!!!!!!!!!!.


See the current Management of Sickle Cell Disease (2002) version