NIH: Don't be surprised if...

the NIH tells you they can't help you or have any studies or protocols for you because that's been my experience which seems so very different from everyone else's. And there's my question in a nutshell: why is my experience so different and the NIH so incredibly UNhelpful in my vhl journey??

I've got to say that my interraction with the NIH has been extremely negative and frustrating. I know many of you have had a lot of help from them and I'm happy you had a positive and helpful experience but it's been nothing but an empty box of hope for me.

When I was first diagnosed back in 2001 I can't remember who exactly but it was someone from the VHLFA (vhl family alliance, a great and tremendous resource with very nice and generous folks) suggested I call the NIH and see if there was any protocol or study that they could use me for. I've always had the attitude that if by poking me helps doctors and researchers find help/medications/better procedures for others then go for it. I can't tell you how many interns have interviewed me! Anyway...when I called NIH I was told there was nothing they could do for me; there were no open protocols or research projects and on top of that since I had insurance (and I still have the same health insurance, thank God!) there was nothing they could do anyway.

So flash forward to about a year ago. All along I've been having my "stuff" (aka Problem Areas like the cysts on my pancreas and hemangioblastoma/tumor on my spine) monitored every 6 months or year or whenever something doesn't seem right. A year ago my urologist strongly suggested I contact Dr.Linehan or his nurse/office person/research intern/aide/helper person b/c I have this wee little spot on the bottom of "Lefty" that's "of concern" b/c it's kinda small, but it's just not right. I love my urologist. I've been blessed with a great team of doc's (except for one really bad primary care doc who thought I was stung out on pain meds) and so when he came back and told me to contact Dr. Linehan and that he was like a major player/big deal kind of person at NIH that may be able to help me I set aside my previous experience (also b/c many of you all said that whole insurance thing is not only weird but it's wrong) and contacted them again. This time I sent them films and reports and my info was "reviewed" in a "meeting of the minds" kind of thing (sorry for the elementary language, but my lexicon is chuck full of words like "lexicon" but can't recall the term used for when doc's get together to review sick people's reports and stuff!). 2 months passed. No one from NIH ever called me back; I always had to initiate the communication and had to NAG them to get my films back (and they were on a cd..not even those big ol'sheets of x-ray films that weigh 9 tons!). After those 2 months and the nagging I was told pretty much the same thing as 2001: Nope. Nothing here for you. At least they didn't tell me having insurance procluded me from any studies or anything.

I know my tone here is very sarcastic and negative but I'm done with NIH. I've even got family in MD and so even though it's just a wee little minor thing, but honestly, I could stay with my in-laws for as long as they would need me to and it's be no problem at all. I just don't get it. I mean I'm not an idiot - I've got a master's degree, I know how research hospitals go and I'm fairly familiar with the NIH (my best friend of almost 30 yrs is a nurse, and was a nurse in the miliitary for 3 year) and how it's not like a typical hospital. I told my urologist what happened and his response was kind of like, "Hm. Oh. Well, I guess there's nothing there then. Well, okay here's what your options here are...." and so on we went.

So, my short question here is: What am I missing about this whole NIH thing that so many of you all out there either have done or have symptomatically that I don't? I feel like I'm missing something; like I got an incomplete application for a job or something. I'm not saying I'm any sicker or better or whatever than anyone else...I'm just a little befuddled at the responses I've had from the NIH b/c everyone else I've either talked to inperson, talked to via email here or on the vhlfa website or read responses from regarding their NIH experiences has been so very very different. What am I missing or doing wrong?

And I mean absolutely no disrespect for Dr.Linehan, the NIH, and any and all of the doc's and researchers that are at the NIH. I kinow Dr. Linehan is a great doc, I've read and heard about his work, and I respect him and thank him for it. I'm also not saying I'm any sicker, better, worse, smarter, in more need, or what have you than anyone else with vhl. I'm just saying I must be missing something b/c my NIH experience has just been a big giant blimp of empty hope.


Report post

13 replies. Join the discussion

My family has had the same experience with NIH. I never really thought the reason was becaues of health insurance but it probably was. My late husband tried to go through NIH. They did ultimately agree to see him and run all the tests. But when it came to treatment they would never return his phone calls. He had cancer in the one kidney he had left - the previous 1 1/2 kidneys were removed in 1987. They kept telling him to wait - that it wasn't time to have surgery. The doctors here in CA said it was time to remove the kidney and go on dialysis. He chose to believe NIH because of their reputation. Ultimately he waited too long and the VHL spread. He passed away18 mons. ago.

My daughter now has cancer in her kidneys. She had surgery last Aug on her spine at UCSF which was unsuccessful. She will now have to go for six weeks of radiation. NIH would not help her either. Probably because she has insurance. Insurance actually would not allow her to go to the doctor she wanted to because he was in Arizona. I don't know if it would have changed the outcome if she could have seen him or if she could have gone to NIH.

It frustates me because NIH supposedly knows VHL the best. Why won't they help when you need them. Drs outside NIH really do not know that much about VHL and it is very frustrating.

I read about the good things about NIH on this board a lot and wish that my family could benefit from such good service and outcomes. VHL has been a struggle for my family since 1987 and will be for many years to come. Fortunately we have a great primary care doctor who goes the extra mile to fight the insurance company to get things done.

Sorry to grip but I always wondered if we were the only ones left behind by NIH.


Report post

I'm one of the people that posted good comments about NIH. I share some of your frustrations as well. As with any health care team, there are good and bad components to both. NIH has rules/guidelines that are constantly changing. The difficult aspect for patients is that they expect us to know these changes. I am fortunate to have a great coordinator for Dr Libutti that answers my questions, takes time to listen to me, and hears what I'm saying.

To answer your questions, some of their protocols have changed. To the best of my knowledge, they no longer accept "new" patients to the neuro protocol. Also, you have to have multiple problems to be accepted under the urology protocol. Even though I've been fortunate enough to have them follow me for kidney/pancreas/abdominal issues- they will not follow my routine stuff: brain/eyes/spine.

I think the positive/negative reaction is based on who you deal with and their reaction or willingness to help. I referred my cousins to NIH and they had the same experience you did. It was equally frustrating to me, as the person who referred them to NIH; telling them how great the team is, how they'll be lucky to go there, etc. and then the genetics counselor told them "the docs in your home state will just have to learn how to deal with VHL."

I would assume the most frustrating thing for all of us with VHL is that feeling that we get tired of chasing down our own health care and being discounted. That can happen locally, at NIH, of anywhere else for that matter.

I'm so sorry that you had that experience with them, and although I'm probably not giving you any great answers- maybe some insight can help ease the frustration. Good luck with your journey!

Report post

My son is seen at NIH in a neuro-surgical protocol.

I believe that insurance has nothing to do with being seen at the NIH. We have possibly the worlds best insurance with very little deductable and very little co-pay, and we have never been asked about insurance by anyone at the NIH. Ever.

I truly believe that being accepted into one of their protocols is simply a matter of luck and circumstances. There has to be, first of all, a protocol that you "fit." You need to have the correct sort of lesions, and the correct sizes of lesions, and not be excluded because of other medical situations.

And even if you fit all of the prerequisites for a study, the study might be full. Or possibly the researchers need more women, more people in a certain age group, etc.

It really seems to be nothing more than a matter of circumstances and luck.

Report post

I also think that some luck is involved. We live just 20 minutes away from the NIH but they won't see me. They did accept my 14 year old son with VHL into a protocol and he has had excellent care there. I see doctors at Hopkins and I have had one bad experience after another.
My son and I both have the same insurance and NIH doesn't even ask you about insurance. You must fit the criteria to be accepted into a protocol, and once the protocol is closed, they can't even accept you if someone else drops out.
It is very frustrating since they are the experts on VHL and have the most experience dealing with VHL patients. They will agree to give a second opinion by looking at your records and one doctor told me that they occasionally can do surgeries for patients outside of protocol. Unless the amount of government funding for research changes, I don't think there is much hope for them accepting new patients.


Report post

I am so sorry to hear about all of the stress that you are having to go through. I have been in the same boat and although I have been there 3 times, I haven't been able to go back even though I was invited. Out of frustration, I e-mailed Dr. Gladys Glenn and told her what was going on with my health and asked her to please see me. Today I got a phone call and it was that easy. I am going on Feb. 6. I have been so stressed and worried because everyone told me to call someone else. Grrr. Thank God that they finally got me in. I will be praying for you. God Bless you,

Report post

Like you, I found the NIH to be completely UNhelpful. I was diagnosed by my retina specialist as probably having VHL in 2003 and then positively in 2004. My insurance will not pay for DNA testing, but I have a clinical diagnosis of VHL because of 2 retinal angiomas, a venous angioma, and 6 spinal hemangiomas. I also have a syrinx and chiari malformations. The spinal hemangiomas, syrinx, and chiari malformations were all found during my one trip to NIH in 2006, but yet I didn't qualify for any protocols. What more could they want?

The office that helps plan your trip was also very UNhelpful. I live in MS and have never flown. In fact, I have a definite fear of flying, but was willing to fly anyway. The ticket guy, I forget his name but it was the one everyone said to ask for, looked up one flight with a ridiculously high price (for my husband). He offered nothing else and we didn't have the $1100+ for that ticket. I started looking around on my own and found AMTRAK. The trip was horrible, but affordable. I have other health issues not VHL related (fibromyalgia, lupus, and osteoarthritis -- to name a few). Needless to say, after 26 hours on a train, I was miserable. We got to Washington just in time to eat dinner and go to bed. We got up the next morning and rushed to get ready for the NIH van. After spending the day rushing from one test or appointment to the other, we rushed back to Union Station just in time to catch AMTRAK for the 26 hour trip back. Then came the word that I am not eligible for any protocol!

The whole experience left a very bad taste in my mouth.


Report post

I just want to thank everyone for their comments b/c like many others I thought I was the only one too! After I posted this comment I thought there might be some people who would think I was bitter and bashing the NIH and I see that that's not at all the case. My intent was to vent some and to share the frustration of hitting the brick wall. I also wanted to see if there were others like me who either have signed off on NIH all together or at least expect a minimal response. I thought maybe I'd done something wrong...called the wrong number, talked to the wrong department....but seeing there are others hitting the wall even though it's sad and unfortunate for us, at least I know I'm not alone. I also want to thank those who've had good experiences for sharing their stories b/c I'm not anti-NIH, I just am frustrated at their response. I understand the protocol process and that it's not a "regular" doctor office kind of thing, but man, there should be some way for the docs who know the most about vhl to be able to help those of us WITH vhl!

And, as many of you said, I hope we all have a good 2008 b/c '07 wasn't exact;y peace and roses. I hope the caregivers find some outlet and way to relax and take care of themselves and those of us who are going through the surgery/radition/chemo/dialasys and the list goes on, come out healthier, happier, and with an easy and short rehab if needed. Thank you again for all your comments. Just knowing I'm not the only one trying to scale the Great Wall of NIH!

Report post

Your comments are very fair, and I hear your frustration.

NIH is not a hospital. You cannot choose to go there. They are not obligated to take patients who apply. And that's a frustration. My son was also turned down once by NIH, so I know exactly what you are feeling. Here is this place that people sing praises about, that's supposed to be the best place in the world to go for VHL, and you can't get in. Been there.

NIH is a research institute. Their charter is to do research and learn how to cure cancer. In order to do that, they design "protocols", or research studies. They outline what patients they might bring in that would help them learn and solve the problem they have decided to tackle. They apply for funding for that project. If they receive funding, they are obligated to complete the project. They are "graded" on the success of the project. Those "grades" influence whether they will receive funding in the following year.

One good example is Dr. Libutti's study of pancreatic tumors -- hard tumors, not cysts. If you have a hard tumor of the pancreas, they would like to see you. If you have 43 cysts in the pancreas, but no hard tumors, no matter how severe your symptoms or whether or not you have insurance, you do not "qualify for the protocol" -- you do not fit the profile of the patients they need to see for their study.

Money is tight. There have been some years when money was much more available, and they would bend the rules a bit because they could afford to bring in a few more patients, and they thought it would be interesting to see you. But not this year.

Look at what they "invest" in one patient:
- a round-trip plane ticket
- 5 days of per-day expenses for hotel and meals (about $50 per day these days)
- appointments with 5-6 medical specialists (urologist, neurosurgeon, retinal specialist, etc.) which would probably cost $150-$200 each at home
- as many CT's, MRI's, and other lab tests as they want for their research (about $10,000)

So roughly $12,000 per person per visit. If you have surgery, obviously the cost is much greater. They have to budget for that -- let's say they want to see 20 patients that fit their requirements, so they budget $240,000 to do that. Then someone asks to be seen who does not fit the protocol (you). If they spend money to bring you in, then they will not have money to bring in the next person who does fit the protocol. They will only have 19 people in the study, not 20.

As interesting and delightful as you are, you will not add to their tally of patients needed to accomplish the study which has been funded.

I know that seems a bit cold-hearted. But please understand the goals here. The team has received money earmarked to accomplish a specific project. If they do not focus and spend it wisely, they will not accomplish the project, and their funding for the following year might not come through.

The NIH budget has been "flat" for several years, and will likely remain flat for the next several years. Most of the money in the US is being spent in Iraq and Afghanistan. NIH just got confirmation of this year's budget, and it is 2% lower than expected. That means they have to cut another 2% out of the budget. As they say, over the past several years they have cut out all the fat and muscle; they are now cutting bone and bone marrow.

What we have been doing to help here is to make sure that the learning compiled by NIH is flowing out into the "field" -- to your local medical center. You should be seeking help first at your local hospital, and second at the nearest large teaching hospital. We will be happy to work with you to get your doctors up to speed, or find a source for a "second opinion" somewhere else in the country or in the world. It's that exchange of information that will make it possible to find good care for VHL wherever you are.

The folks at NIH are wonderful. If they invite you, you should be sure to go. But you do have to have an invitation. Sorry, there are only so many slots. And as I say, my son was once rejected too, so believe me, I know the frustration and anger that you are feeling.

Remember that what NIH is doing is a LEARNING PROJECT. It is not a long-term arrangement. Look to them for ADVICE and LEARNING, not for consistent everyday care. It's a great infusion of expertise, but it is NOT health care for the long haul. Whether or not you are invited to NIH, you MUST develop a team locally, that you can rely on for the your whole life.

What you can do...

(1) write your Senators and Congressmen and make sure they understand how important NIH is to you. Make sure they get better funding next year. They are still working on VHL, and are still seeing this as an important project to learn how to cure kidney cancer.

(2) Help us build care for you in your local area. Help us identify doctors who are doing a great job for you, and hopefully build a Clinical Care team so that you can be treated near your home, near your friends and family, near your support network. That's the real answer.

(3) Support the clinical trials that are going on. Make sure they get enough people participating in the trials, so that we can determine whether a drug is a good candidate for use with VHL. Until we have sufficient data, we cannot get a drug approved "for VHL". And until a drug has been approved "for VHL" the insurance companies are not going to pay for it, as they will see it as "experimental" and not the standard of care.

(4) Help us raise money to expand our research grants program. We began this program to encourage young researchers to go into VHL research, and gather enough data to go win a bigger grant from NIH, which is one of the biggest sources of money for cancer research in the world. With these flat budgets, the competiton for NIH grants is even more fierce than usual. Where it used to take a score of say 8 out of 10 to get a grant, now it takes a score of 9.5 out of 10 to get a grant. So we are seeing applications for our grant funding from established researchers who have missed by a very small margin getting their funding. If you think you are devastated not getting in to see the docs at NIH, think how devastated they feel if they suddenly don't have funding for their entire project, and may have to lay off 10 scientists and not complete their project. So our research grants are even more important in these days of short funding than ever before.

I hope that helps.

Best wishes,

Report post

Thanks for the great info. How do people go about locating the correct congress members to send the letters to?


Report post


Thank you for that wonderful explanation on how NIH does things and why. I had some idea but you filled in all the blanks for us.

The work that NIH does in research and treatment is vital and it is distressing to see the cutbacks. Sarah is right - letters to Congress are a great idea!

One of my son's doctors in Richmond told us that he is seeing more and more patients in his practice as a neurosurgeon because of these cutbacks. He is disheartened by that situation.

Another of his doctors was in the VHL program at NIH until not long ago. Not sure why he left but fortunately for us he is now practicing at UVA.

He advised us to stay on top of the research at NIH and through VHL's resources so that we are aware of what could be available for my son. What he told us made sense - cancer researchers of all kinds are looking at the VHL research for answers to some of their own questions. So cutting back VHL studies affects more than just VHL patients....everyone suffers.

Our government, in my opinion, has it's priorities all wrong. The health care system and research programs in this country need attention and action now.

Anyhow, Joyce, thank you again.

Report post

not to bash the NIH and so even though I don't think anyone who's replied to the link thinks that, I just wanted to say it again. I appreciate the research efforts and wish financially we could afford to donate to the NIH b/c their work is invaluable. I also want to thank Joyce for explaining the whole thing b/c like Sarah and Amy said, I knew NIH was research based, not an answer to long term care and definately did not operate like a "regular" hospital or doctor but Joyce definately filled in some holes, especially regarding funding.

I also want to thank all the comment people and readers alike b/c part of my intent was also to vent a little frustration and see if others had similar experiences. I know after I finished the first comment to start the discussion, I felt better almost instantly; just to get it off my chest was good and I think I see that in others too.

So thank you to everyone who's commented b/c I was a little concerned that this could've pushed someone's buttons and become a "NIH Bash-fest", if you will. I also need to thank Joyce for sort of doing a kind of wrap-up/explanation of how it all works without being preach-y or whatever. I knew we were all pretty good eggs and seeing how mature and honest and well-written the comments have been, well, I'm impressed with our group here.

Okay...enough thank you warm and fuzzies!

Report post

The reason doctors leave NIH is because many doctors in residence there called "fellows" are in training to get the best on the job experience in this field and then take it out into the public. This is what is meant to happen. I have had many of my NIH doctors who were "fellows" leave the NIH and practice all over the country, quite to the benefit of all of us since many of us know way too many doctors who have no experience at all with VHL and/or how to deal with it.

Report post

Here is a good site to help you write your members of Congress on this topic. There are samples of the letters the American Association for Cancer Research has written. irs.aspx

Best wishes,


Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the VHL Alliance

Help the VHL Alliance reach its goals and support people like yourself by making a donation today.

Donate to the VHL Alliance

Discussion topics

From the VHL Alliance

Community leaders