NIH AND Dr Neal Young
 

I would like to encourage you to write your Federal Congressmen requesting funding and support of Dr Neal Young and the Hemtology Dept at NIH. I can tell you that Dr Young and his staff are fighting everyday to find the cause and cure for MDS, Aplastic Anemia, and PNH. If you are someone who was treated for Bone Marrow Failure and your counts are good, you may not feel that NIH benefits you. If you are someone that NIH could not see, you may feel that NIH does not benefit you. Dr Young and his staff do care about you.

At our visit Dr Young made several things clear
#1) The patients well being is his highest priority. The benefit of being seen at NIH and being placed on a clinical trial must out weigh the risk. Someone skeptical of NIH said "since there are so few patients with these rare diseases, NIH might place people on clinical trails just to increase their data". This is not true. You come first!
#2) Promacta should not be used outside of a clinical trail at this time for Aplastic Anemia. The long term effects of this med are not known. Yes, it is appropriate for some patients but only after very long consideration by an extremely experienced team who is watching the patient closely and following a clinical trail protocol.

Now I am going to ask you to Please Please write your Federal Congressman to support the Hematology Dept of NIH and continue their funding . Everyday Dr Young and his staff are fighting for people with Aplastic Anemia, MDS and PNH. We need to stand together and fight for them.

I couldn't agree more. Without Dr. Young and his team at NIH, and their pioneering development of the ATG treatment, I don't think I'd be alive today.

I wished to see Dr. Young for a second opinion on further treatment, but he reviewed my records and decided I was doing well enough not to warrant an appointment. Since that point about a year ago, I have continued to do well, so I certainly understand and respect his decision - he made the right call. It is very comforting just to know he and his team are there working to cure bone marrow failure disorders, and that they can see those patients most in need of help.

I was wondering, since you are posting this message and it sounds like you are in contact with the hematology team at NIH, is there a recent threat to their funding and/or an arising need for additional funding that prompted you to write this message? I ask because any threat to NIH hematology funding would be very concerning! If I write my elected officials, is there either a) an imminent threat to their funding or b) a need for increased funding for further research, that I should mention in particular?

I messaged The White House
 

There's an option to send a communication to the president and so I asked him why so much money is going to AIDS and why its so important to him relative to many other diseases. If you haven't heard Mr. Obama wants a cure for AIDS and so he funded the NIH for that and declared a war on AIDS. However, he didn't declare a war for anything else and so I wrote something but can't remember exactly what it was but it was pretty strong. A month later I got this from someone at HHS/CMS.. I have no clue what the ACA has to do with what I was asking but if your going to write to someone might as well include Mr. Obama. I haven't called yet because I don't want to talk about the ACA but I will send another message to our illustrious president.

I am writing in response to your e-mail to President Obama dated January 28, 2014 regarding your concerns about your health insurance plan. I work for the U.S. Department of Health and Human Services, and your e-mail was forwarded to my attention. I appreciate your taking the time to share your concerns.

If you would like to discuss your situation in detail or have questions about the Affordable Care Act, please call me directly at 206-615-3801.

Sincerely,


Vashti Whissiel-Wren
Health Insurance Specialist
Dept. of Health and Human Services

KMac,
I am not sure if the funding for the Hematology Dept at NIH is secure or not. What I can tell you is at the end of our visit as I was thanking Dr Young, he asked that I write my Congressmen. I wrote them immediately and will continue to do so. Even if there is not an imminent threat, I would like Congress to know that the people of the USA want and need this research to be continued. Since it effects so few of people I could see that this would be the funding to be decreased first. I feel strongly that the pharmaceutical companies will not invest in Rare Disease Research. I realize they answer to stock holders who want a significant return on their investment. I do feel strongly about our need to stand together and fight to secure the future of people with rare diseases. Everywhere I look I see media attention given to breast cancer, lung cancer, colon cancer, etc. The list goes on and on. I know first hand the effects of these horrible diseases. Yet at the same time, it scares me because I hardly ever hear anything about Aplastic Anemia, PNH, or MDS. If we don't speak out to Congress, no one else will. Please, everyone who reads Marrow Forums, Please write your Congressmen in support of Rare Disease Research.

Dear Relentless Against SAA,

Thank you for the response, I will certainly write my congressman on the need to continue funding NIH to research bone marrow failure diseases.

I also agree it seems unlikely the pharmaceutical companies will spend much money researching treatments for 'orphan' diseases such as the ones we are fighting, unless there is some government incentive/assistance.

I'm very glad the pharmaceutical companies develop new medicines, but it seems without NIH, we wouldn't even know that some of these medicines previously developed (ATG, cyclosporine, and now perhaps eltrombopag) can be very effective in treating bone marrow failure.

I too believe NIH is our best hope of finding new and better treatments. If Dr. Young is asking us to write in support of their research, I will write!

NIH and DR NEAL YOUNG
 

I have just read the posts regarding the above AMAZING!!!!!! And thank you each for sharing and your tenacity in encouraging others to become ACTIVELY involved.

I am fighting on behalf of Vietnam Veterans and their claims of MDS and AGENT ORANGE. This battle is now in its 3 year; my husband succumbed to MDS in 2003 at age 52 he had fought his battle for 8 years. When first diagnosed, MDS was just becoming a diagnosis with classifications not declared a cancer at that time. treatments were nothing with a few 'let's try' and then he was just too weak with no immune system.

The Federal Govt-VA-has four classifications for illnesses to be considered for their 'presumptive illness' listing; MDS is at classification 3 (I'm including MDS under Leukemia) category 1 makes the hit list. In order to move MDS up we need to provide the VA with the following:

A report from a quality health group, organization or professional stating a suggested connection between AO (can be individual chemical compounds Benzene and/or Dioxins) AND scientific data supporting a possible/suggested/"as likely as not" connection between AO and MDS.

I have not been able to find any links to studies' specifically there are only inferences to "studies". I will gladly contact Dr. Young for assistance as everyone relates his commitment to research- please send me his contact information. Also, if anyone on this particular conversation has any references, referrals or suggestions to forward my research please leave me a message on MDS and AGENT ORANGE on this site.

I too encourage people to write their political representatives at every level re research of AA/MDS plus the AO connection.
Thank you for sharing, your courage hang in there you are not ever alone.
barb

Barb,
I am not sure of the exact Clinical Research Nurse you should contact at NIH but here are a couple names with their numbers:
Barbara Weinstein = 301-594-4180
Olga Riof = 301-496-4462

Hope these numbers are helpful.
May the Lord Bless You and Your Family
May the Lord Bless All with Bone Marrow Failure

Found this regarding research on bone marrow failure being done by Dept. of Defense.

http://www.taxpayer.net/library/arti...nd-development

Another opinion. The writer may not know that all those illnesses may have a connection to being in the military.