Shawntell Taylor is a survivor. She was diagnosed with Aplastic Anemia in 2004 has since underwent three unsuccessful interventions, including two rounds of ATG. Taylor explains in the above clip she also had two unrelated donors “cancel on me.”
Like I said, Shawntell Taylor is a survivor.
Kevin Walsh, the author of The Marrow in Me as well as a past bone marrow donor and television anchor discusses five myths associated with marrow donation.
BBC reports on a woman in the United Kingdom wants to donate her soon-to-be-born baby’s cord blood to help others. The trouble is she can’t. The stems cells found in cord blood can be used in to treat a variety of disorders, including those effecting the bone marrow like leukemia.
Take a look at the Top 10 reasons people don’t donate blood according to the American Red Cross.
Philadelphia Inquirer opinion piece on what healthcare reform has forgotten: the patient.
Above Regina Holliday explains 73 cents, a mural inspired by her late husband’s healthcare experience. Listen to the NPR feature here. In Novemember, Regina submitted her family’s story to myPICCline.
Platelets look weird. A bag ranges from yellow(like the unit I received shown above) to orange and has a glow—think Gatorade or radioactive comic goo. And I’m not the only one who doesn’t trust the sight of them, I often catch other patients looking at the bag, then back at the attending nurse, then back at the bag with a what the hell is that expression on their face. Below is a short list that offers some answers.
Ever see one of those old tapes where the Beatles walk onto the stage and people(well women, but the analogy to come is less embarrassing if I say “people”) just start passing out at the sight of them? I would be one of those “people” at the sight of Corey Booker. The guy is what every politician should model himself after, and maybe even every person too.
In the clip above where he pleas for people to become marrow donors, I felt light headed.
Learn how to join the registry at the DKMS website.
DKMS is an accredited marrow center with the National Marrow Donor Program(also know as Be the Match!).
In October I posted my letter of appeal after Blue Cross Blue Shield’s told me it would not cover my bone marrow donor search. After hearing no response for several weeks I resent the letter certified and finally heard back. The verdict was…there was no verdict.
My appeal was not reviewed because I did not provide the necessary diagnosis/procedure codes. Below is my second response which includes the codes for Aplastic Anemia and Bone Marrow Transplant, both were provided by my doctor.
Empire Blue Cross Blue Shield January 12, 2010
PO Box 1407
Church Street Station
New York, N.Y. 10008-1407To Whom It May Concern:
This is the second letter I’ve sent regarding the denial of coverage of my Bone Marrow donor search. I’ve included a copy of my previous correspondence, which I have sent twice—the first letter was sent on the 23rd of October, 2009. A second copy was sent certified on November 24, 2009, after I did not receive a response.
Per your request I am providing diagnosis codes, despite my previous letter which stated a diagnosis. To be clear, my disorder is Aplastic Anemia of the most severe form. The ICD-9-CM for this disorder is 284.90, per the office of my hematologist, Dr. [name removed], M.D. The cure for this disease is bone marrow transplant, ICD-9-CM 382.40, once again per the office of Dr.[name removed], M.D. Bone Marrow transplant cannot be performed until a suitable donor is found via a donor search.
Again, the diagnosis/ICD-9-CM for Aplastic Anemia and Bone Marrow Transplant are:
Aplastic Anemia: 284.90
Bone Marrow Transplant: 382.40Please expedite the approval of my Bone Marrow donor search, due to the nature of my disease time is of the essence.
Thank you, in advance, for your prompt attention to this most crucial matter.
Sincerely,
Matthew C. Sheehan
The above video gives an informative look at blood. Although short, it captures the importance of blood in maintaining vitality. Many (myself included) depend on blood products from other people and that dependence increases at a rate of 6% each year, according to the American Red Cross.
Thank you to those who are able to donate.
To find out where you can donate blood enter your zip code here.
NOTE:You may have heard in the first seconds of the clip that blood is the body’s largest organ and thought “that’s not right, according to my 6th grade science class that distinction belongs to the skin.” I agree. Blood is generally referred to as a connective tissue consisting of several types of cells suspended in plasma, rather than an organ. Regardless, blood is a BIG deal.
The Bone Marrow Failure Disease Research and Treatment Act of 2009 is proposed legislation that would cost $8 million dollars annually and increase the federal government’s commitment to researching and treating acquired bone marrow failure diseases. The legislation directs the Health and Human Services Department to develop a comprehensive strategy to combat these diseases which include:
•A national bone marrow failure disease registry so that researchers can combine their
data in one place, yielding more effective research designs and better results.
• Pilot studies through the Agency for Toxic Substances and Disease Registry to
determine which environmental factors cause people to acquire bone marrow failure
diseases.
• Minority-focused programs to make information on treatment options and clinical trials
available to minority communities, particularly Hispanic and Asian American
communities.
• Agency for Healthcare Research and Quality grants to help improve diagnostic
practices and quality of care for patients with bone marrow failure diseases.
The above summary was provided by AAMDS.org, the bill was sponsored by Congresswoman Doris Matsui of California. Read the bill in it’s complete text here.
Healthcare is notorious for it’s lack of communication and unnecessary repetition that wastes both time and money—anything to streamline information and promote greater organization is a good idea. There are so many barriers between patients and care currently, [Read the rest of this entry...]
Researchers have for the first time performed a successful bone marrow transplant to cure sickle cell disease in adults, according to the Los Angeles Times. The team reported it has developed a much-less-toxic transplant procedure and used it to cure nine of the first 10 patients studied.
The hereditary disorder primarily effects those of African descent and with the findings of this study there could be a notable increase in the demand for African American donors. See the statistical breakdown of donor ethnicity here.
Those suffering from Sickle Cell Anemia produce C-shaped or “sickle” red blood cells—rather than the normal doughnut shape—that clump when moving through blood vessels. The disorder is defined by a lower-than-normal number of red blood cells(RBCs) because the mishapen cells don’t last very long, dying after 10 to 20 days. Normal RBCs live approximately 120 days. The bone marrow cannot produce new red blood cells fast enough to replace dying ones.
The video above highlights 6 year old Hispanic boy Antonio Rieder’s pursuit of a suitable match for the bone marrow transplant he needs. Taylor Matt, a teenager from New York who has also struggled to find a match through the registry because he is a quarter Native American. These stories are not uncommon among ethnic minorities here in the United States. Below is a chart provided by Be The Match, the National Marrow Donor Program illustrating the ethnic breakdown of potential donors. [Read the rest of this entry...]
A. Anemia News
