Here is the third and final installment of David and Lori Puenti’s “Personal Testimonial For Care Recieved At The University of Arkansas Myeloma Research Center:”
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.
Once again, I would like to thank Lori for taking the time to share her thoughts about David’s journey through the University of Arkansas Myeloma Research Center! If you would like to ask Lori questions, her e-mail is: firstname.lastname@example.org.
Feel good and keep smiling! Pat