NF1 Persons vs NF1 Patients

Persons with NF1 have special needs, very likely needs NOT specifically addressed by the NF1 person’s healthplan (HP). There was a time when a person – both as a person and as a patient – arranged for his/her and/or offspring’s health care needs and subsequently sought reimbursement through a health insurance healthplan. NO MORE! Now the HP determines 1) what is available to you through the HP and/or 2) both the ease of access to the various health care resources and the amount and nature of reimbursements.

Remember that a HP is a form of insurance. And then remind yourself of the definition of insurance: the business arrangement whereby the seller makes a profit on the risks of the buyer. In short, INSURANCE IS PROFIT BASED ON RISK. And our present – American – health care delivery system is based on the primacy of insurance, specifically, health insurance. In this sense, the Affordable Care Act (ACA) is more aptly named the “Affordable Health Insurance Act” (AHIA).

Ultimately, from an operational standpoint, this translates to a health insurance buyer with high risks (e.g., an NF1 person) competing with the health insurance seller, who needs to minimize his cost of that risk. That is why the seller is in business: to maximize the profit based on your risk. For the person/family with NF1, a very early decision must be made about access to health care services central to the NF1. What follows are some potentially useful guidelines.

 Identify and partner with a Recklinologist. Sites identifying Recklinologists are readily available, for example, at NF California, the NF Network and the Children’s Tumor Foundation.
 Identify and partner with specialty physicians and organizations (clinics, hospital, imaging facilities, etc.) The HP buyer should take into account those
 NF1 problems already present,
  NF1 problems that are a potential ongoing concern and
−  NF1 problems that are remote
 Alternative, ancillary, complementary and/or supplementary service programs may be available at a number of academic institutions and government organizations, such the National Cancer Institute (NCI).

With regard to a number of NF1 research programs, NF1 persons and their family members should be aware that genomic testing results may not be available routinely. I encourage that you enquire about this matter and request that your data be made available to you.

First and foremost, assure that a Recklinologist is included among the physicians contracted with your HP. That person can then help you obtain access to the resources your may require additionally.

In any event, make sure that you consider the age of the person with NF1 AND in that context consider whether the Recklinologist is from a pediatric medicine background, an adult medicine background (internal medicine, geriatrics) or both (family practice). Be reminded that MOST PERSONS WITH NF1 ARE ADULTS, while many, if not most, Recklinologists and NF1 Clinics are pediatric-based. Over the long run, if the pediatric-based Recklinologists are successful, an NF1 person’s graduation into the medical world of Family Practice, Internal Medicine and Geriatrics is expected.

In these regards, it is especially important that MANY HEALTH PROBLEMS OF NF1 PERSONS ARE EITHER UNRELATED OR ONLY INDIRECTLY RELATED TO THE NF1. My main point in this Update Section of NFormation is that forethought and anticipation on your part are increasingly critical to your realizing maximal benefits of the HP selected for the person with NF1. Over the long run, I expect that NFormation will be especially rewarding in these regards.

A second major element of this NFormation Update is the ongoing reminder that A PERSON WITH NF1 IS NOT ALWAYS A PATIENT WITH NF1. Being a patient selectively and with forethought is a key to your overall well-being. Thus, I encourage everyone – with or without NF1 – to distinguish between “executive decision-making” (EDM) and “medical decision-making” (MDM). Deciding which HP to purchase and deciding on which hospital to use are examples of EDM. Deciding on a specific treatment or a diagnostic procedure – both necessarily in cooperation with a licensed practicing physician – are examples of MDM.

NFormation is about EDM, even though elements of the material provided may lead some persons with NF1 ultimately to engage physicians for MDM as patients with NF1.


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