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NIH
Hi NLJabbari,
I think what I'm telling you is correct and I hope it will make you feel better.
My husband has been a patient at NIH since the spring of 2009. He has participated in several clinical trials. In my opinion they saved his life.
NIH is where trials are performed for drugs not yet available to the public to see whether or not they do what they are supposed to do to ultimately get FDA approval for the general public.
Every clinical trial has a very firm protocol that NIH has to follow. The protocol is set by the pharmaceutical companies and I believe also a board at NIH. There are aspects of diseases that have to fit the requirements of the protocol as well as medical conditions that also can exclude a patient from qualifying. Sometimes things such as age can be a factor (probably not in your son's case). Co-morbidities and various other things such as previous treatments, etc. can exclude a patient from being accepted as well. NIH is not allowed to go outside the protocol without it being approved by a board. It is a drawn out process and I don't think it's an easy thing to get accomplished. Once a patient is accepted, all doctor visits, treatments and drugs are free to the patient because they are clinical trials.
My guess is that Dr. Young was able to look at your son's records and decide very quickly that your son didn't match any criteria for any clinical trials - or there wasn't a trial ongoing that your son qualified for. Olga Rios who I know personally, probably knew this before your records hit Dr. Young's desk. The protocols and the trials that are ongoing - what is accepted and what is not - are pretty easy to understand should you want to go to their web site and look them up.
To my knowledge Dr. Young does not take patients for consultation without the possibility of their qualifying for a clinical trial. Dr. Young's recommendation was for your son to stay on Cyclosporine. Dr. Young is considered the #1 hematologist in the world so his recommendation might be good advice for your son. I don't think Dr. Young would have just thrown out a recommendation without knowledge of your son's case.
Your post sounded like you took how it was handled personally and I'll admit they could have told you why he wasn't accepted at NIH. At the same time, I have very close up and personal knowledge of the people in the Hematology Dept. at NIH and they are some of the most caring and efficient people I have ever met in the medical field - and they are also very very busy.
I hope this helps. And if anyone reads this and I'm wrong about anything I said, please correct for the record. I don't want to give out any misinformation.
I wish you and your son well.
God Bless,
Sally
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