Contacting NIH, and other Questions

[David M]

Hello All,

I've got a general question or two (or five)... several people on this forum have mentioned contacting Dr. Neal Young at NIH.

(1) What is the best way to contact Dr. Young and set up an appointment, or at least discuss setting up an appointment?

(2) Along the same lines... what are the advantages of going to NIH for evaluation / treatment as opposed to being tested and evaluated (and perhaps treated) by a competent hematologist closer to home who confers with AA specialists around the country? Is there really that much difference?

(3) Any disadvantages of going to NIH?

(4) Once you start evaluation and/or treatment at NIH, does that become your exclusive test / treatment center? I ask this mainly because I am located a pretty good distance from NIH.

(5) I have read that the expenses at NIH are covered -- you just have to pay for getting there (and for lodging, I assume). Is this true? Are there any other AA centers that offer similar deals?

Thanks for your help!

David M

[Marlene]

My two cents....You are better offer doing your treatment with a doc who has experience with SAA as well as a hospital that very familiar with it as well. I've seen too many mistakes happen when people are treated by someone with no experience with the disease. They don't know what to expect and therefore are slower to respond to things that come up during and after treatment.

Marlene

[David M]

Well, in my stumbling and bumbling around for answers, I sent an email directly to Dr. Young based on the email address for him listed on the NIH web site. Not surprisingly, he indicated that he does not make recommendations or medical evaluations based on email, but that I could schedule an appointment, etc. through the research nurses provided (he provided a couple of names & email addresses).

Hopefully they will be able to answer some of my questions. Perhaps some others out there would like to share their experiences with NIH? Has it been positive overall?

I am trying to make up my mind about making the journey up there... any inputs would be appreciated!

[lnhudlow]

I have only gotten information from these forums - I have never posted -- but thought I would help out with the NIH questions !
My daughter has been seen by Dr. Young and Dr. Sloand (mostly by Dr. Sloand) at NIH for almost 8 years. She was referred by her Atlanta hematologist when she was found to have myelodysplasia when she was 15 years old. We had been in a wait and watch state since then, with several trips to NIH for bone marrow biopsies.
Her situation remained stable for those years, with no symptoms other than mildly low counts. But....a year ago, she developed a serious bacterial infection. Her Atlanta doctors worked very hard and were able to pull her through the infection. Along the way, they consulted with Dr. Holland, an Infectious Disease dr. at NIH and we have made several trips to NIH to see him and Dr. Sloand. Since her counts have remained very low, it has been determined that it's time for her to have a stem cell transplant and to cure the myelodysplasia ! She will have the transplant (matched, unrelated, reduced intensity) on August 5th. Her transplant dr. is Dr. Hickstein.

Our experience with NIH has been extremely positive with very communicative and caring doctors, every step of the way. We feel very fortunate to have been referred there back at the beginning of all of this. Every time we go to NIH, we comment on how helpful everyone in the hospital is. We just can't say enough good about the people we have encountered there. My daughter's doctors keep track of her through email constantly. We have full confidence in the treatment she has received and will receive.
Of course, NIH is a research hospital and not everyone will "fit" into a clinical trial there - but I think it's definitely worth arranging for an initial consultation and seeing if they have anything to offer !
I hope this information helps !

[lnhudlow]

One issue I forgot to address -- my daughter has continued to be seen by hematologists/infectious disease drs. here in Atlanta, also. It has been a cooperative effort with the drs. at NIH and the drs. here - so no, NIH has not been her exclusive place for treatment. NIH had been mostly a place for consultation, up until the last few months and now, when it will become her place for treatment. When she comes home from the transplant, she will again begin to see her Atlanta drs. again.

[Hopeful]

Hi David,

I also wrote to Dr. Young when I was struggling to get a diagnosis. My understanding is that he evaluates your case beforehand to determine if you fit into a clinical trial. If you do, you can be treated at NIH free of cost (except for transportation and lodging). You may have to go back there after treatment at periodic intervals, depending on the trial.

I opted to find an AA expert (or two) closer to home. I consult with them a couple of times a year in person, and see my local hematologist (who is not an AA expert) other times. All my treatment has been with my local hematologist for insurance reasons. Fortunately, my local doctor welcomes the advice from the experts as to how to proceed with my treatment. This may not always be the case!

I think it is invaluable for your own sanity to have a *personal* relationship with an AA expert. It doesn't have to be NIH, but it should be someone who sees more than a handful of AA people in their lifetime.

I chose to have my treatment locally so that I could be with my family. The downside of this was that it was pretty stressful going through ATG at a hospital where no doctor on the floor knew anything about AA! Luckily, I didn't have too adverse a reaction to the drugs, as they didn't know how to respond! Another downside of having a non-AA expert as your primary hematologist is that you may be subjected to more tests or drugs than necessary, as they haven't "seen it all before" and don't know how to react.

In conclusion, get a second opinion with an AA expert (NIH or otherwise)!

[lnhudlow]

In my daughter's case, the study she is in pays for her transportation to and from NIH. All the care she receives there is also covered by the study (our health insurance is not involved). We have sometimes stayed in hotels in the Bethesda area, but lately have been able to stay at the Children's Inn, a part of the NIH campus. There is also a lodge for adult patients, but I'm not sure of the criteria for being able to stay there as opposed to providing your own lodging.
Again - NIH is a great option for some, depending on your exact medical situation. Other centers of excellence would be more appropriate for others.

[Gloria J]

I was referred to NIH by my hematologist, and had a very positive experience there with H-ATG treatment for SAA. I've been involved in treatment there for over two years now. I, also, cannot make enough strong comments about the positive, supportive professional staff. I wouldn't hesitate to recommend going there for a second opinion, treatment, or supportive advice. Please feel free to contact me with specific questions.

[Laura]

I see you already got in contact with someone at NIH. But the best thing to do is contact one of the nurses...Olga or Barbara. I think I still have Barbara's phone number if you need it. One of these two people can get you hooked up with pretty much everything you need.

I did a few clinical trials at the NIH. I was out there numerous times. They will not pay for the initial consult. But once you are entered into a clinical trial they will pay for airplane tickets or mileage. When I was there they paid $60 a night for hotel. They do not cover food expenses. Otherwise they cover all medical expenses including prescriptions that you might need. So besides hotel and food and any taxi rides, it pretty much is covered. They have tons of shuttles that you can use to get around. I can recommend a place to stay while you are there if you head that direction.

It is nice to be there because you are in the best place for AA. They cover the majority of things. However, it can be very overwhelming at first until you figure out their routine and how to get vouchers and redeemed for the hotels, planes, etc. The place is huge and that can be overwhelming too. If you decide to go, I can give you tips to make things easier for you.

I think you need to have a physician that is willing to work with the NIH. That way you can do part of the clinical trial at your local hematologist. It just totally depends on which trial you are in if you have to do it all at the NIH or can do part of it at home.

Not to brag but I do consider myself pretty versed about info at the NIH. I spent a lot of time there and learned a lot along the way.

Laura