Advice please! How to handle traditional doctors not receptive to stem cell treatment

[Animalca]

My 18 year old daughter is about to undergo stem cell treatment in July with Dr Grekos. She is being treated at a major US university hospital (she is in the process of transitioning from pediatric to adult doctor in the system) and any time I mention stem cell treatment to them I get a "tut-tut" reaction. She has her last appointment in the pediatric department in June, the procedure in the DR with Dr Grekos in July, and her first appointment with the adult doctor in August. Because of their reaction, I haven't mentioned to any of her regular doctors anything about the stem cell procedure. This is mostly because I am afraid that they will drop her as a patient, which may be completely unfounded, but I am desperately worried about it nonetheless. I am sure that when we visit the adult doctor for the first time in August, and I tell him at that point, "by the way...she has had the stem cell procedure a month ago and this is now the check-up" he is going to be very annoyed, to say the least (I don't know this for a fact, I am just making an educated guess as to his reaction). There is nothing to do for it, obviously I am going to tell him (they are wanting to do another right-heart cath on her, which they do once a year and which I have put off for about a year and a half now), but does anyone have any advice on how to handle this very sticky situation? Another twist in the situation is that she is on Remodulin sub-cutaneous infusion since 2006, and in our area there are only two doctors who deal with this medicine on a regular basis. One of them is her doctor, and the other one is not particularly willing to take her on as a patient...

[JC the Fox]

The most important thing to remember is that you are not going to change the mind of any doctor already set against stem cell therapy. If there is a chance that your daughter's new "adult" doctor will drop her as a patient, then now is the time to start looking for a replacement. You would think that you could discuss stem cell therapy with any doctor rationally, but that has not been my experience. Years from now we can go back to them and tell them we were right and they were wrong, but that solves nothing at the present time, I'm afraid.

I have a wonderful local VA doctor who is quite interested in stem cells, but he can not perform any procedure outside VA guidelines; so I have spent the past few weeks looking for a doctor to give me autologous stem cell therapy (I have COPD) with the guidance of a doctor who has already performed such therapy. I've had all kinds of responses (except for being willing to do it), ranging from complete dis-interest to threatening to have their lawyers give me a call for even proposing to have them do "something illegal" - their words, not mine.

I'm hoping that in the near future, there will be a doctor to join ASCTA who is reasonably close to me, who might be willing to try stem cell therapy. Perhaps there is already one in ASCTA who would be willing to treat your daughter, since it appears you have the ability and means to travel.

[hlichten]

If any doctor treating your daughter is not receptive to her seeking stem cell treatment, it is indeed time to find her a new doctor.

My diagnostician was understanding of it, although he admitted to stem cell treatment being beyond his scope. My cardiologist was supportive and understanding, and offered to speak to the treating stem cell physicians, although he never did so. Even my dentist was supportive and asked questions.

Assuming you have exhausted all conventional treatment for her, any doctor treating her should be supportive of your seeking alternate treatment for her.

Now, if they want to give reasons why you shouldn't do it, they are, of course welcome to give their opinions. You can listen to their opinions, and respond as you see fit. Stem cell treatment goes against much of what they have been taught, as does much of alternative medicine. They are taught that it is not safe, and you have to humor those opinions.

The best doctors in the country are open-minded for the most part, have very good analytical minds, and will say that they want whatever is deemed best for the patient.

If a doctor ever "tut-tut'ed" (as you say) any decision that I have made for my treatment, I will be in the phone book finding a new doctor when I get home from the appointment.

JC the Fox said that "Years from now we can go back to them and tell them we were right and they were wrong". Well, that is not the point. Years from now we may find out that WE were wrong. The jury is still out on stem cell treatment, as we wait for more discoveries and refinement in treatment techniques and protocol. The point is that you have made a decision, and any doctor that cares about your daughter as a patient needs to respect that decision, even if he/she feels that it is wrong.

[JC the Fox]

"JC the Fox said that "Years from now we can go back to them and tell them we were right and they were wrong". Well, that is not the point. Years from now we may find out that WE were wrong."

That is so true - Wishful thinking on my part. I also added that saying that solves nothing at the present. Many of us are just wishing that we'll still be around years from now. Truth is, I'm only up at this ridiculous hour because my comment had been too vitriolic and it was keeping me awake.

In any event, it would be impossible for me to go to a doctor who did not respect my decisions. I would only go to one who shared or supported the same beliefs I have.

[bayofsoul]

At the end of the day, doctors are just the same as you and I - they have limited knowledge. Ironically those who specialise have even more limited knowledge, as their field of involvement in broader medical treatment inevitably narrows. They are also "service providers" and should be treated as such (not the gods that the medical industry promotes). If the service is not up to the standards that you expect, then you - as the payer - should find a better provider. My neuro (have ALS) has a great deal of knowledge about neurological matters, but has no treatment, let alone a cure. My family doctor on the other hand is open to reasonable research that I provide to him. I ask for his opinion and value his input - but at the end of the day its my choice. My neuro takes this choice away - so I'm moving on to find someone who is actually interested in assisting me with my wellness, rather than treating me as dead man walking. The day the majority stop treating doctors as demi-gods is the day the medical training will have to change.

[Animalca]

Thank you all for your very prompt replies...you have certainly given me quite a lot to think about before this crucial meeting with my daughter's physicians.
Because of her meds (Remodulin sub-cutaneous infusion), we are limited to two doctors in our area who are highly familiar with how to treat and, please G-d all goes as envisioned with the stem cell procedure, wean her off her meds as her pressures normalize. One of them is her doctor. The other, at another teaching hospital in the area, will not take her on as a patient out of professional courtesy (my opinion, nobody has stated this). In order to get the stem cell treatment for her, I have had to beg and borrow (no stealing yet!) from pretty much everyone I know, so unfortunately, long-distance journeys on a regular basis are not really an alternative. In addition to that...well, I only need to say one word: insurance. We're pretty much locked into our system, which limits our options.
Nearly every traditional medical doctor I have talked to during the research process (except for one in particular, who has been highly supportive) has warned me against doing this stem cell procedure, but I have to do what I feel is best for my kid. I also agree wholeheartedly that most doctors maintain a limited scope of knowledge...limited to their field or specialization. Sometimes they have a hard time thinking "outside the box" in order to put together a broader "whole picture" concept for the long term. It's not that they don't want their patients to get well (they do), but rather that they are not trained, and therefore not willing or able, to expand their search outside their field of expertise. The doctors (not all, but most) in my experience have been far more focused on treating the disease rather than curing it, and they tend to get disgruntled when a mere mom tries to suggest something, well, unorthodox.
My job as mom is to do all possible, whatever it takes in this universe, to make my kid well. If, once I have exhausted all avenues that I can possibly pursue, the child, G-d forbid, continues to sicken, then I will have no choice but to put it in G-d's hands. In the meantime (and with His help), and during this part of the process, I just don't want to alienate the doctor (and/or the alternative doctor, should this doctor drop her) who is treating my kid. Again, I know I am putting mountains before molehills as I have not even met the new adult doctor yet, and I may be pleasantly surprised by his attitude when I do. But just in case his reaction happens to be less than fully supportive, I am trying to prepare, and to figure out, how to talk to him in a way that keeps him on our side.
I learned long ago that most doctors, like the gods and demi-gods of old, have feet of clay, so I am under no illusions...I just need to figure out the best way to keep the whole situation as positive as it could possibly be. Your advice, all of yours, is very helpful, and your guidance very much appreciated....thank you so much! I look forward to hearing any other thoughts anyone might have one the subject!

[barbara]

I want JC to know that I have asked Dr. Centeno to keep me informed if any doctors join ASCTA that are in his vicinity. So far, there aren't any, but everything in this crazy bio-world seems to change constantly.


Animalca - You seem to have your head on straight. I think you have been given some excellent advice and as a MOM you will do the right thing for your daughter. Please continue to update us on the situation.

[Animalca]

High praise indeed, Barbara! I will continue to do the best as I can and hope and pray that I am doing the right thing (and don't mess up too badly) as regards her path to wellness...I will absolutely keep you posted, and again, thank you for so much support and good, sound advice!

[barbara]

I still have feelers out to see if anyone is treating Addison's disease. I will post when I get any responses.

[michaelsdad00]

I was reading the fine print the other day on the Health Insurance Contract. Group Insurance BCBS, and saw in there that that can deny payment for the treatment of side effects of any experimental treatment. Certainly bringing knowledge of stem cell therapy to a mainstream doctor who is probably participating/cooperating with the insurance company, because they pay him/her. may run the risk of having some aspect of health insurance coverage reduced due to a clause like this in the contract. My son has had 5 SCT's and I have not found it of any value mentioning it to his conventional MD's. Just my opinion. Weigh the potential costs and potential benefits.
Dave Snow

[barbara]

Well said David. Why create problems?

[hlichten]

Nothing wrong with taking this approach, or in keeping this information from other doctors, but...

Keep in mind that a medical provider just wants to get paid for their services. You pay your copay (if applicable), they file the claim, and get (usually) a small percentage of what they file for.

Then they are DONE, and they don't have to bill the patient, send it out to collection, etc.

A couple of years ago, I walked out of an emergency room, when the emergency room physician wanted to admit me to the hospital, and I didn't think it was necessary. The hospital staff said "your insurance company is not going to pay if you discharge against doctor's orders", and I replied that I did not care. Well, guess what? The hospital wanted to get paid, so they just filed a claim, said nothing, and got paid.

From what I have learned, hospitals try to scare patients into staying all the time by telling them that the insurance company won't pay. Not true.

I even checked with BCBS later, and they told me that a provider submits treatment codes and they pay the amount due for those codes. PERIOD. They don't read anything about you walking out, being a pain in the rear, or anything else!

The bottom line, to me, is do not allow yourself to become intimidated.

Your regular doctors need to know that you are being treated with stem cells so that they can have a full understanding of your desires. Also, if they call for an X-Ray a month after your treatment, they need to understand why you are going to decline it, etc.

Again, I reiterate...if your regular doctors can't deal with your having stem cell treatment, it is time to find new doctors. It is almost 2010, time for them to wake up!

[Animalca]

I like your advice, thank you! And thank you also for the enlightenment on the way insurance pays the hospitals...