Friday, October 30, 2015

Update on Medicare coverage decision for Stem Cell Transplant in Myelofibrosis

The Centers for Medicare & Medicaid Services’ Coverage and Analysis Group released a proposed decision memo Thursday on modifications to the National Coverage Determination for allogeneic Stem Cell Transplant. CMS has proposed to expand coverage through Coverage with Evidence Development (CED) for allogeneic HCT to include myelofibrosis, multiple myeloma and sickle cell disease.

Unfortunately, this does NOT mean that coverage for SCT for those with myelofibrosis is immediately available. There are three more stages to this process: 1) completion of the 30-day comment period, 2) completion of the 60-day final analysis period that CMS has after the close of the public comment period, 3) development, submission and approval of a study that meets guidelines set forth in the final decision. Coverage through Medicare will likely not be available until sometime in the first half 2016.

The National Marrow Donor Program is working on coordinating the study to the specifications needed by the CMS. 

Public comments by people affected by the lack of Medicare coverage for Stem Cell Transplants for Myelofibrosis. We will let you know how to go about submitting a public comment ASAP. 

Tuesday, October 13, 2015

Sivana-ET "I am a fighter and don’t give up easily"

Silvana ET

I am Silvana, and I live in Rotterdam, The Netherlands. I'm 52 years old and was diagnosed with E.T December 19th, 2011, about 3 weeks after I had a bone marrow biopsy. I have 2 children, a daughter and son. My other experience with a chronic condition was with asthma, which I was diagnosed with 1993/1994.

In 2003 I was hospitalized at the ICU for 3 weeks with Acute respiratory distress syndrome (ARDS) which included 2 weeks in a drug injured coma. After this I asked my complete medical file where I read that my doctors thought at that time i had MDS. However, I didn't receive my diagnosis of ET until 2011. That’s why I believe I have been living with this long before I was diagnosed. 
In december 2013 I was also diagnosed with papillairy thyroid cancer, stage 3. I had 2 surgery's to remove the whole thyroid and I had also twice the highest dose radio active iodine treatment. In May I heard the good news that I am thyroid cancer free! My next check up is November. About 2 months ago I had a minor stroke which caused my doctors to modify my regimen from aspirin to clopidogrel. In the past 6 weeks I have also been on Hydrea.

I am a fighter and don’t give up easily! On November 13th I am going to London ((UK) to attend the ‘Living with MPN’ day!

It’s been a long time since being on a plan, and I am excited and a bit insecure to go all alone. I look forward to meeting others out there with MPN. I am also going for the 4th year in a row to the Dutch MPN day which is October 31st!

Tuesday, October 6, 2015

How to Help a Sick Friend

How to Be There for a Sick Friend

A guide for being there when it matters most

What can I do to help?" is probably the most common thing we say to a friend who is ill or in need. But despite our best intentions, this may not be the best way to lend a helping hand. When a person is diagnosed with an MPN blood cancer, patients often feel too overwhelmed or too proud to know how to respond. Now, here's some ways for you to support a sick friend.

1. Don't ask, just do. Offer something specific (big or small) that you can do to help out and suggest a time when you can follow through, such as "How about I come over on Friday at six and make you dinner?" This may help ease any embarrassment or guilt your friend may feel about asking for help.

2. Be honest. It can be difficult to find the right words—or any words at all—when a friend is in crisis. Sometimes, simply saying "I don't know what to say" is the best way to start a conversation.

3. Add a personal touch. While an iTunes gift card or a good book is a great gift, personalized presents can be the most meaningful. A baked batch of favorite cookies could be a great comfort. For someone living abroad, make me a short video to tell them that you are thinking of them. You can send dozens of hand-folded origami cranes for good luck.

4. Listen. When news of a cancer diagnosis spreads, patients can be inundated by opinions, advice, and information on everything from nutrition to spiritual outlook. Help out a friend by being a sounding board rather than an information dispenser.