This is an article I was asked to write after a bit of a debate regarding the treatment at Little Rock. It originally posted at Pat Killingsworth MM blog in 3 parts. I'm going to repost here for you. I will be getting back to posting more frequently now that we are on the "Other Side" of our major medical intervention. I didn't want to wait to get this up.
Why I chose a research facility vs. a "treating" physician...
I worked for the University of Maryland 's Center for Environmental Energy Engineering. I was their sole administrator, it was a small group of highly respected, hard working research professors with about 40 graduate students, mostly PhD seeking students. My director is world renown in his field and was an Editor of a archival quality research journal published by the "society" representing his area of expertise. Part of my job was to be his assistant on managing the many papers submitted for peer review in the hopes of being published in this journal. The society used an online publication management program, commonly used now by all the big journals. This allows authors from around the world to submit their papers electronically, and then for the Associate Editors (we had 12) to organize and invite "reviewers" to review these paper submissions. This process from paper submission to publication (should they be that fortunate) took 18 months to 2 years, i.e., in print and mailed to subscribers. I won't bore you with all the details as to why that is, but everyone is busy, they don't get paid to do this, it is an honor, but it is work to pour through someone else's research paper, examine the evidence presented, check the calculations, check references, etc., and then make a recommendation. Very few papers get to publication in the first 3 months. Edits are often suggested, challenges to claims made, etc., and then it has to go back through again and so on. Once approved, then they go into the next available journal publication, as the actual publication process is another couple of months, so they get in line.
Each journal has requirements for publications that include limits on words, tables, graphs, photos. Whatever the research entails it must fit into parameters listed by the journal. Some don't allow your paper to have been submitted, let alone published, elsewhere. Some (I would argue most) don't let a non subscriber see the published paper. Some won't even let you present it at a conference if you've been published. My point being, there are all sorts of rules in publishing scientific research that is backed up by the peer review process, which is the system we value at the moment. Our journal was a "Blind" review. That meant that efforts were made to have a paper go thru review without knowing who the authors were and the authors not knowing who the reviewers were. This was to attempt to minimize biases and attitudes based on the personalities involved. I will tell you that that process is not always successful. In a small group, its not always easy to mask who the authors are on a particular subject.
I knew, perhaps uniquely, that if we went anywhere other than an actively researching facility, they would be arguably 2 years behind what was occurring right now. When I presented this to our original diagnosing physician, who would not be treating Dave long term and had radiated him and started him on a Thalidomide/Dex regimen immediately, he admitted that I was exactly correct in my analysis of the situation. While MM is seeming less and less rare, the fact is, it is still classed as a rare disease. The local treating physicians that were available to us had a few patients. Quite frankly, they had fewer patients in their 30 year careers than a place like LIttle Rock has in 3 months. But I digress... I said to him, "Let's be honest Dr. L, when you get an MM patient you guys pick up one of your medical journals and find the latest, 3,000 word paper, read it over, and prescribe treatment based on that, and when you do that, you have little understanding of all of the research and you are already 2 years behind what is current." He said, I was absolutely correct. I said, "unless of course, you go to a Myeloma Conference, but then why would you, if you have so few such patients?" He admitted, he didn't and he wouldn't. Now admittedly, he was a general onc and would not be "treating" Dave. We would be heading to those "more knowledgeable" in the blood cancers. While they might know a bit more than he did, my personal assessment was that it was a bit more, but not enough to treat my husband.
Paper publications and presentations. In order to publish papers they MUST produce statistical data that they have collected. It must be verifiable. As a result, they will produce their data, life expectancy, assumptions, theories, conclusions, etc. If you go to a local oncologist/hematologist, they will not collect this data and they will not share this data with you, period. And quite often they will be offended that you asked such a question, as I experienced. A simple question for a researcher, not so for someone else. You ask it at a research facility and they will gladly share their published data, but also their current unpublished data, as illustrated above, the published stuff is old. Most of us know that statistical data can be manipulated and slanted. Its a fair argument and one that we must rely on the peer review process to meat out. Eat red meat, don't eat red meat, eat red meat once a week... drink a glass of wine, don't drink a glass of wine, drink a glass of wine once a week. It can indeed make you neurotic.
As I went through this process I also learned, as many of you may know, but I did not, that the stem cell transplant was NOT the treatment at all! It is used to help you recover your immune system to safer levels as soon as possible. It is the DRUGS used prior to the stem cell infusion that is the treatment. Then, it is the treatment AFTER that is in many ways just as crucial - this after care would be years (hopefully). So, for me, as a wife and a caregiver, the last thing I needed was to have my husband seeing a physician that made him feel like everyday he was still breathing was one more day than the doctor thought he would have. One who was just going to give him some drugs to extend his otherwise doomed life, with a "well we tried" shrug. I'm not suggesting that anyone else's doctor has done this, but we had two who absolutely do not believe you can survive MM for very long, end of story. That was simply unacceptable to me, and I had the good fortune of having two other doctors, who don't treat MM, who felt the same way I did, based on their understanding of the research activity in the disease of MM. They unequivocally advised me NOT to take Dave to those doctors for treatment. They are friends and they know my husband, and agreed he needed to go to a physician who was up to date, experienced, optimistic and hopeful, because in their view, there was every reason to be hopeful at this time in the treatment options for MM.
When one doctor told me that "the new treatments" were not proven, my doctor friend reminded me, "Well they have not been disproven either." That is indeed an important point here. We are in the thick of it folks. No one, knows the way out of the forest, but some have more experience, hunches, instincts about the path out, and some are getting more people out of the forest than others. I can tell you that when I speak to a physician, I have a list of questions, some medical, some not. When I ask my questions, I'm looking for answers to be sure, but I'm also listening for biases, personal attitudes, character. Some people think I'm crazy. Who cares? You just want them to fix you. Well, I'll tell you why I care. These things tell me a lot about a person's ethics both professionally and personally. What kind of team is a person likely to have supporting them that I will be in contact with more often than not. For instance, when I went to Little Rock and had our first visit to the infusion center, what immediately struck me was how long the nurses had been working there. I couldn't find anyone under 10 years (and several were over 16 years). That tells me a lot about a facility, the researchers and administrators behind it. They like working there. They like their job.
So what else can a research institute offer you? Well they are focused on one disease. Typically they have diagnosticians who are affiliated with their research as well. So when your scans are being viewed by a radiologist, chances are those radiologists are a part of the research team and have been looking at pictures of that disease day in and day out for a number of years. They don't miss much. Research facilities often have the latest equipment, foundations, endowments, fund raising, federal grants, private donations, and community support, etc. Some tests get covered by insurance because they are considered "research", where it might not otherwise. When insurance can't or won't cover it, sometimes the facility can absorb some of those costs because of the endowment/grant monies they have depending on how deep the pockets and the criteria laid out for those funds use.
Researching facilities are also hospitals of course. They can chose to go through additional accreditations from NIH and beyond. A good facility will always be working toward improving their ratings on the accreditations. They will have accountability to the organizations who have given them these accreditations and have annual visits typically. Its worth taking a brief moment to mention a little bit about UAMS of which the Myeloma Institute is a part of. Most of our diagnostic testing is outside of the Institute and within the framework of UAMS. UAMS has a mission for quality healthcare and SERVICE that is commendable. No matter what clinic you are in, they are kind, efficient, responsive. The goal at UAMS is that you do not wait more that 15 minutes for anything, anywhere. Of course this doesn't always happen, but for the most part, for us, it did. The care is very personal. Maybe its just good 'ol southern hospitality? I don't know.
Researching facilities tend to do much more diagnostics. Those who are not engaged in active research call it diagnostic overkill. Well, that is both the upside and the downside of going to such a place. Remember they are collecting quantifiable, provable, data. I would argue that they must do this to further their research as well as substantiate it. Not too mention that if you are a more difficult case, it might mean the difference between life and death. In our case, our consultation visit was 5 days of tests. They redid EVERY test Dave had already had and then did all of their tests as well. At the end of that 5 days we met our doctor and the consultation was completed and incredibly thorough.
Other tangibles, that some might feel are not important, but I found extremely valuable to both Dave and I. Because its a rare disease, if we treated locally, we probably would have never met a single MM patient in our travels back and forth. In a larger environment specializing in the treatment of your disease the valuable support from other patients and caregivers cannot be underestimated, in my humble opinion.
In many areas of medicine there are debates waging, not just our particular disease. I jokingly remind people "Well they are 'practicing' medicine after all!" When you are dealing with a disease like MM, make no mistake, we are all guinea pigs, period, end of argument. Having said that, I simply wanted to go where most of the guinea pigs were going and where they seemed to be living the longest. I found my Mecca, and you can find yours.
For those who have "heard" things about Little Rock. I will tell you that they never told us they would "cure" my husband. They never badmouthed the doctors who had treated him, nor made other claims about the disease treatments available. They simply told us how HE was doing NOW and what they did, what our time commitment would be and to let them know if we wanted them to treat him and that they could start tomorrow or at a later time. I can't tell you that there wouldn't be pressure on someone who was in dire straights, we were not, Dave had had a VGPR from the Thalid/dex regimen. His only real issue right at that moment was an untreated compression fracture that he was taking opiates for.
Finally, regarding Little Rock specifically. More than 1/2 of the patients there are patients who were treated elsewhere and the treatment failed, was not working, or was back. Their "treating" physicians didn't know what else to do for them so they sent them to Little Rock or sent them home "to die" as several told me personally. I will also tell you that I met many patients from other research facilities. The biggest names in the US, all of them had patients at Little Rock at some point. So for those who criticize Little Rock from afar, please remember that there are many who are satisfied and alive thanks to them. Are they perfect - Nope. Do patients die there - sadly, Yes. Is that unique to Little Rock - Nope.
Good luck to all of you. If you have the urge or chance to go to a place like LIttle Rock, at least go and have a chat. If you have specific question on Little Rock for me, feel free to email me directly and I will be more than happy to have that dialog with you.