NF1 Next Step


NFormation is looking to do something about the well-known difficulties that adult NF1 persons have in finding and engaging a physician “sufficiently knowledgeable” about NF1 so as to optimize the NF1 person’s, the NF1 client’s health. As both a specialist pediatrician and a board certified specialist in internal medicine, I have long been aware of this deficiency: individuals I’d engaged as a “Recklinologist” in the 1970s, 1980s and the 1990s as children or teenagers frequently recontact me now, hoping that I can direct them to clinicians “sufficiently knowledgeable” about NF1 to address all of their health care needs. Regrettably, I’ve rarely been able to do so – because such doctors are so few, and/or they have no way for broadcasting their sought-after talents.


A Recklinologist is a doctoral-level clinician or researcher who devotes himself or herself to understanding NF1 and/or to directly helping NF1 persons have the most ordinary and successful life possible. There may be about 75 such persons – Recklinologists – in the USA presently. In general, they are readily identified and accessible, and many, if not most of them, are pediatricians in one sense or another. But the vast majority of NF1 persons are adults, with a significant portion in the age range of geriatrics. Obviously, such persons with NF1 need access to doctors both versed in adult medicine and enthusiastic about NF1. In this latter regard, I will make frequent reference to “NF1-enthusiastic” physicians, whether a Primary Care Physician (PCP) or Specialty Care Physician (SCP).


NFormation will seek out both PCPs and SCPs, with an emphasis on the latter initially. Exactly how we do this and how we enable the NF1 clients’ access to these NF1-enthusiastic practitioners still has to be worked out or formulated. In the meantime, the NF1 adult should know – even celebrate – that I am committed to this project, to these goals.


As a start, I am going to key off a very successful program that was central to an earlier enterprise for which I was responsible, namely, American Medical Consumers (AMC). That successful AMC program was dubbed “Next Step.” We literally helped clients determine and act upon realistic choices as they navigated the health care delivery system, i.e., took the Next Step. (This information should clarify why the URL for the NFormation website is designated as Ultimately, I and NFormation will help the NF1 client determine and take the best Next Step towards his or her NF1-considered health care goals.


A key consideration here is the distinction between “Medical Decision Making” (MDM) and “Executive Decision Making” (EDM). We have helped, and will essentially continue to help NF1 clients with their EDM. This consideration is also addressed in the NFormation Update entitled “NF1 persons vs. NF1 Patients,” an important element of NFormation’s inauguration.[LINK]


Executive Decision-Making

Consider a person, Leona, who is told by her doctor that one week hence, next Thursday, she needs to have an early-morning fasting blood sugar (FBS) determination. He then goes on to specify how she should prepare for it, specifically, nothing to eat or drink after midnight. The following Tuesday afternoon, as she plans how to use her time on Thursday, the blood-drawing day, she calls NFormation for assistance. First, it is established that she is engaging NFormation as a CLIENT. Second, it is clarified that she lives on Briggs Avenue in La Crescenta, CA. She is then advised that she can drive the 10 miles or so to Pasadena and use the laboratory facility in the building where she ordinarily engages her doctor or use the commercial laboratory facility in Montrose, just a little over two miles from her home. She is also advised that the commercial laboratory is part of her physician’s network and, further, that it is included in her healthplan resources. Given these facts, particularly the closeness of the commercial laboratory and her planning to meet her sister, Etiwanda, that Thursday for breakfast in Montrose after the blood draw, she opts to have her blood drawn at the nearby commercial laboratory. This executive decision makes good sense from virtually every vantage point – and in no way compromises the medical decision-making that determines the need to draw blood.


Does it make any difference as to who was the person from NFormation that assisted her; and what was that person’s background and training? Was it a janitor, a secretary, a phlebotomist, a nurse, a medical student or a physician? What if it was a physician? Respecting that any one of these persons could have appropriately provided the information to afford Leona’s EDM, it would seem that the physician providing the information could and should not be construed as thereby practicing medicine.


My concern here is to have consensus that physicians can supply information affording EDM – as opposed to MDM – without practicing medicine. From there, we can graduate to a whole series of decision-making scenarios to which a physician can contribute without ipso facto practicing medicine. And this would apply to all physicians, with or without a current, active medical license.


Very specifically, I, Vincent M. Riccardi, MD, can and will provide information and certain types of advice relevant to NF1 even without a current, active California medical license. I will do so both in face-to-face engagements and in writing, including text that is the substance of NFormation.


I have done this previously, for some three years or so, as an agent of the organization, American Medical Consumers (AMC), most often as part of AMC’s Next Step program. In that program, a participating business paid AMC a fixed fee per employee per month for each employee’s privilege of consulting with me about taking the next step in an anticipated or ongoing clinical situation. (This privilege was afforded each employee and his or her spouse and all first-degree relatives.) The most common client inquiries involved knee or hip joint replacements for a parent (or sometimes a mother-law or father-in-law).


The issue was never whether to have the surgery. Rather, the issue was providing information about various decisions to be made along the way, for example, about the various types of prostheses and the facility where the surgery would or could be performed. I strictly provided only information to be used for EDM after the surgical candidate made the final plans in concert with his or her physicians, including the surgeon. The issue was never whether the treatment, surgical or otherwise, was appropriate, but rather about details along the way. The issue never was whether or not to take the next step, but, rather, maximizing the client’s input in the EDM along the way.


In these AMC engagements I was very explicit about the fact that I was not practicing medicine in providing Next Step assistance. I would explicitly declare that “I am not practicing medicine, but rather helping you make a series of executive decisions in the next step you (or your relative) are considering.” Moreover, I always asked the client if he or she understood the distinction I was making. The clients uniformly responded that they understood. They knew, as well, that they were clients (a type of customer). More pointedly, they were not patients when part of the Next Step transactions.


This same approach is legitimate and necessary for so many of the Next Steps to be made in the health care of NF1 persons.


I am a storehouse of information relevant to NF1 EDM: my Curriculum Vitae is available elsewhere in NFormation.[LINK] It seems inappropriate that none of that information could be available to NF1 clients merely because I elected not to renew my licensure. (That is, the decision not to renew was mine alone. Specifically, it was not a sanction by the licensing agency.) NFormation, medical and scientific journal publications, participation in NF advocacy group meetings and visiting with an NF1 person or family privately are among the many ways I can and will share my NF1 information to facilitate NF1 Next Step EDM. The fact that I was one of the founders of the Texas NF Foundation (TNFF) in the early 1980s and that I am currently the Medical Director of NF California (NF CA) attest to my ability and enthusiasm for contributing to NF1 health care above and beyond MDM.


Can I opine in a clinical setting if I don’t have a medical license? Can I give advice in a clinical setting if I don’t have a medical license? Yes, I can, specifically as an EDM-Facilitator.


As an EDM-Facilitator, I will not propose or make a diagnosis. I will not propose or suggest a treatment. I will otherwise help the CLIENT navigate the health care delivery system by facilitating EDM, respecting a purported or established diagnosis. In the capacity of EDM-Facilitator, I will, for example, assist the client in itemizing facilities/institutions that provide the anticipated treatment. More generally, I will assist the client in itemizing various types of questions he or she might want to ask the physician(s) regarding various details about the proposed diagnosis and/or proposed treatment. For example, given a new/recent diagnosis of NF1, will “whole body MRI” be utilized? If the client is being managed by an NF1 specialist physician (“Recklinologist”), the EDM-Facilitator’s input may be superfluous. On the other hand, if the managing physician has little or no experience with NF1, the input may be useful to both the client and the physician. The management of NF1 is often complex and the client can and should be part of the associated EDM that is part of that complexity.


What I have just described is a major part of NFormation’s NF1 Next Step program, intended to help NF1 clients make truly informed executive decisions.


NF1 Next Step: Lighting the way to better health care choices.