NIH-QoL - Office of Patient Recruitment

The best way to provide an orientation is to reprint a letter remitted to ASH lobbyists that didn’t reveal
the fact that its author was an NIH/NCI-patient [copied from page 19]; no response has been received.

As we discussed last week @ the Rayburn House Office Building cafeteria, to follow is an endorsement
letter for dual efforts to fund both the NIH (generally) and Sickle Cell Anemia patients (specifically).

The former initiative has been experienced on a personal level, notably when I facilitated treatment of a
former Congressman for Multiple Myeloma; as a result, he received a double-transplant that was
coordinated with the University of Pennsylvania…and was cured. It is notable that the online version of the
NIH Patient Handbook contains a comprehensive orientation for patients who might otherwise become
intimidated by the experience of traversing security only to be assessed by myriad providers
[https://clinicalcenter.nih.gov/participate/_pdf/pthandbook.pdf]. I would hope that a generous portion of
the NIH-$ allocation be directed toward enhancing patient recruitment, not only loco-regionally, but also
within other identifiable organs within definable referral structures (such as the V.A., which is nearby).

The latter initiative has not been personally experienced, for my sicklers are generally stable and are being
monitored for complications, but the immediate promise of genetic engineering looms; if it is true that only
two states have a registry, it should not be much of a “leap” to tag everyone else, for the limitations of
established therapies (e.g., HU/transfusions) have been thoroughly established, to the chagrin of both
patients and caregivers. Once the impending breakthrough hits, one could easily envision the need for an
orderly assessment of potential beneficiaries, a process that should therefore receive advance planning.

Overall, the pivotal component of the NIH experience on a professional plane has been its ability to be a
model for “translational medicine”; ensuring research reaches the bedside of a maximal number of the
eligible Americans (either directly or via protocol approvals/funding for delivery elsewhere) should be a
priority that need not be perceived as particularly costly. Rather, such public health initiatives are better
appreciated by the public as cost-effective methods to disseminate the highest quality medical care.

Therefore, please invoke this letter when you are engaged in your “lobbying” pursuits; anyone else who is
provided a copy thereof should feel empowered to do likewise. Detailed elaboration is available upon
request, albeit it is felt that what would be conveyed is somewhat intuitive. Good luck in your efforts.

Personal NIH Orientation had been achieved a half-decade ago [vide supra] when a former Congressman
was cured of his Multiple Myeloma, although he died two years ago from a glioblastoma multiforme; this
was felt by the NIH consultants to be mutually exclusive thereof (following a double-visit with
Neuro/Heme). Otherwise, simply functioning as a medical oncologist over the decades (post-fellowship)
yielded exposure to how the NIH-approved extramural protocols were implemented; candidly, delving into
how intramural research was juggled [c/o www.clinicaltrials.com] had not been a priority pursuit over the
decades due, perhaps, to the availability of local therapies instead of trials. Following extensive analysis
thereof [again, vide supra], Ms. Nikki Williams scheduled a “Multidisciplinary Rounds” visit on Wednesday
7/17/2019 when the “round-robin” consultation was provided (by urology, XRT, Medical Oncology); this
led to the plan to acquire multiple scans via Molecular Imaging to validate the use of the PSMA scan,
viewed as a prelude to radical prostatectomy (assuming staging remained IVA, with or without an immuno-
Tx trial, noting that the latter ultimately was initiated without evidence—thus far—of the efficacy thereof).
Consistently encountered (both outpatient and inpatient) was an “embracing, prophylaxis, prevention,
precaution-laden” environment, as providers/clinicians/researchers reformulated on multiple planes.
Perhaps the atmospherics can best be appreciated by the “tone” set when driving around the campus,
rather than using the shuttle which, BTW, appears only to circulate on the NIH campus despite existence
of other related entities (such as the Tobacco-Control office that appears to be located in Bethesda-North);
between the stop signs and the pedestrian crossings, the average speed is routinely ~5 m.p.h.

Emphasized to Philly locals has been the ease of vehicular transit to the NIH (although my son still feels
using mass transit is plausible); although the first visit entailed auto-inspection, acquisition of a necklace
(with a bar code) following a security check (on the ground floor, next to the desk where parking cards are
stamped) allowed for entry as an “employee” (although garage entry still included a dusting of the car,
both the steering wheel and the trunk). Pivotal was 3:30 a.m. departure (with the Truckers on I-95)
because “rush hour” on the 10-mile beltway starts @ 5:30 a.m. (although it could be argued that this
phenomenon is continuous until after 6:30 p.m.); arriving early allowed for acquisition of a REM-cycle
within the automobile, prior to an early (8:15 a.m.) Oncology Clinic appointment (recharging “batteries”).

There is a typo in the “Patient Entry” section (of the Handout): “When the West Drive-Main Patient/Family
Entrance and the Gateway-Metro Entrance ARE [not “is”] closed, [add comma] please use the Commercial
Vehicle Inspection Facility….” Unstated are the hours when the employee entrance on Wisconsin Ave.
remains closed; “tested” the west-side entrance on Tuesday (particularly noting proximity to the entrance
to the parking region), and also used it for exiting during rush-hour (to avoid the crush, noting the brevity
of the green light). [It seems not using Cedar to return to Wisconsin/Rockville and using Old Georgetown
to access the Beltway is plausible and will be “tested” for ease-of-use upon return in a fortnight.]

The goal is to help the NIH maximize referrals from beyond the immediate D.C. neighborhood (when
research is desirable); it may be desirable for logistics handouts to be composed for each NIH-subset to
facilitate familiarity. Focusing on Section Four of the Patient Handout [“Patient Information”] yielded a set
of “leads” that were dutifully pursued, scrupulously maintaining the “patient” role concomitant to
drawing upon knowledge/training/experience when “processing” everything available @ the NIH.

Reported earlier (but not remedied yesterday) was the absence of cell-‘phone juice outside the 3rd Floor
Day Hospital; the charging-stations on the 1st Floor outside Admissions was OK; bringing a plug-charger
for the all-day experience in the Day Hospital remains a priority. Newspapers are not for-sale in the
bookstore because, per the clerk, “Everyone gets their news online, these days”; availability of the three
major outlets (WaPo, NYTimes, WSJ) in the library (after 11 a.m.) suffices, but this was a bit of a shocker.
Curiously, a sign was noted in the Day Hospital that stated pagers may not sound/vibrate if the patient is
in the library; this was not orally conveyed and hasn’t been checked but, obviously, both should occur
(because it’s not unlikely that people will want to partake of quality reading-matter while awaiting Tx).

Patients should be informed that that Building 10 has no “ER” because it refers to Suburban Hospital
(across the street, to the west) to primary care physicians; this delineation governs how the consultants
relate to the outside PCP, exemplified by provision of Amlodipine from the outpatient pharmacy because
it was prescribed in-house while this patient self-financed shingles shots (and got a flu-shot @ his hospital).
Travel reimbursement was systematized by reminding the paraprofessional who provide e-mail notice of
an upcoming scheduled visit (on Thursdays for Tuesday appointments) to inform the cashier thereof
(which constituted a change in the prior system, when the cashier was to contact the clinician-scheduler);
filing paperwork in the mid-a.m. allowed for the cash (for gas, etc.) to be accrued by 3 p.m. but, here, the
Patient Handbook” didn’t inform patients of this capacity (see the “Cashier” and the “Travel” sections).
Handouts c/o the providers/nursing were helpful; the calendar basically mandated Tuesday visits [perhaps
it could be included on the updated website (https://nihcc.followmyhealth.com/patientaccess#/Home),
if only to empower patient supporters] and the Admission Assessment Tool seemed to be supplanted by
the more extensive nursing initial interview. [The lady who checked-in the patient (for inpatient care)
recalled having met him in the travel-reimbursement office; this recalls the observation (cited tangentially
earlier) that ambient friendliness and individualization abound. Also, edits were provided to the Molecular
Imaging Department for its MRI handout and to the Urologist for the Kegel Exercise handout.

The 1st Floor has three facilities that are available to patients: [1]—The Business Center lacks a scanner
(that exists on the 7th floor); [2]—The Recreation Therapy room has 4 machines (including an elliptical);
and [3]—The Relaxation Room has reclining Somatrons [http://www.somatron.com/index.htm] that are
said to be fantabulous when linked with sound/vibrations (to optimize energy pathways), although the
database [http://www.somatron.com/research_studies.htm] seems sparse. [It was “cool” to learn that
the lady advocating use of the chairs had sold a home the prior week located a block from the patient’s.]
Also noted was the need to recalibrate the HiGi machines, noting that BP readings were rapidly compared
between the floor (124/69) and the two HiGi machines; that located outside the 2nd floor cafeteria was
123/76, but that outside the NIH library was 136/74. (This discrepancy was confirmed on two occasions.)

A noon piano-concert transpired in the lobby while the patient was at the Day Hospital; apparently
available episodically is animal-assisted therapy. Shuttles seem only to cover the campus (rather than
linking with other NIH-related entities such as in Bethesda-North, the tobacco control HQ), although
linkage to regional entities (airport) was noted in a handout available @ the front desk. Open during
limited hours is the 7th Floor patient fitness center; it seemed fine (at only first glance). The game room
@ 3rd NE (locked) sported only one table-hockey game and a TV; it could be enhanced with board games
(checkers? chess?), particularly after noting the children’s 1st Floor facility (separate from pediatrics?).
Also, the patient’s son may hang-out @ the Family Lodge [just west of Building 10] on surgery-day,
departing “whenever” (via AMTRAK/Metro) and perhaps returning for the return-drive a week hence.

After internal-NIH communications have been created/validated via “Follow My Health,” these memos
may “go dark”; for now, they remain a method that maximizes/communicates appreciation of details of
the Tx c/w the goal to optimize “care and maintenance” of a comprehensive “cc”-list. HIPPA-compliance
necessitates use of a “vector” (no patient discussion emanating from NIH) and that lotsa back-and-forth
occurred via messages with Dr. Redman. Yet, when people are unlikely to become involved in the future
(e.g., Molecular Imaging, PSMA protocol completed), they receive a final note and then are dropped.

It wasn’t possible to “game the system” by having bloods drawn a day before an appointment, for it was
Veterans Day; the patient came to attend an anti-Turkey conference, but [1]—bloods had to be drawn in
the Day Hospital; [2]—the PSA hadn’t been shifted, so a phlebotomy remained necessary the next day;
[3]—the shuttle wasn’t dependable for a return from the Metro (vide supra) because they’re available
from 9-5 by calling individually from the front desk, on weekends/holidays; and [4]—the ability to check a
nasal-wash culture (a 2-minute procedure) to r/o persistent Rhinovirus was delayed because the
respiratory therapist was to be tied-up for hours. On the other hand, the next day (a busy post-holiday
clinic that had to accommodate a double-load), the patient “solved” a logistical roadblock by advising that,
because no available clinic room could be ID’ed for the nasal wash, this could be done in the Day Hospital.
In any case, after arriving “with the Truckers” overnight and napping in the garage for only one REM-cycle,
it was a breeze to drive into town (no traffic) to the 11 a.m. conference @ the National Press Club, which
was followed by f/u Capitol Hill rounds regarding Kurdistan ethnic-cleansing (focused, not haphazard).

The bedside TV constituted a phenomenal degree of mechanical flexibility; reception was a bit hazy but,
more important, an earphone jack could be used in the presence of a roommate. Channel selection elided
over anticipated availability (via an inpatient print-out that wasn’t retained) for—if memory serves—some
stations were supplanted by “-“ signs. [TV Land obviated MeTV (although missed Perry Mason).]

A “NIH-themed” survey was completed prior to any inpatient experience; although the possibility of
sending a f/u was entertained (address was preserved), nothing substantive would have been altered.
Indeed, a mini-experiment was conducted during “rounds” by wearing NIH-supplied socks; the only
particle detected on otherwise scoured/polished/glistening hallways (recall Princess and Pea) was
acquired when ambling toward Magnuson (to check-out the dysfunctional HiGi). Otherwise, as is c/w the
scrupulous cleaning of all hospital room surfaces, the NIH remains pristine; the patient felt “at home,”
as manifest by greeting passersby if they established eye-contact (c/w the “collaborative” research mien).

The inpatient experience was characterized by [1]—mobile nursing station and VS apparatus; [2]—
availability of a bathtub; [3]—an easily employed shower; [4]—self-sufficiency when acquiring a heated
blankets and employing the laundry bin; [5]—availability of fridge/μ-wave/snacks; [6]—a locked-drawer
for valuables (although its reliability wasn’t assessed); and [7]—spaciousness, even with a roommate.
Also, this ambulatory patient had to inform nursing personnel of his presence after a cancelled scan, but
almost wandered off the floor to make “rounds” (and potentially missed seeing a consultant) thereafter.

Upon admission, it was noted that muttering the presence of mustard seed allergy (only GI-upset) had
triggered an overnight mandate that only single-ingredient alternatives be available until a chat were to
occur the following-a.m. with the dietician; thereafter, multiple menu items were sampled, most of which
were OK. Noted was recognition that disposable items were being used temporarily until a machine had
been fixed; also noted were expiration dates on packages (that included condiments) and chocolate cake.

Amazingly, when contacting the kitchen, the patient was asked to specify what time delivery was optimal;
again, in lieu of keeping a fluid-intake diary, the nurses were simply told that the meals constituted totals
(except when a juice container was reported to have been consumed). Regarding the cuisine, it was noted
that steak could only be served overdone, tilapia/salmon/turkey were somewhat dry (despite toppings),
sides seemed to be available with abandon, and food was usually warm. After arriving @ 7:30, no meals
were available (understandable), so grabbed 2 snack bags (juice, crackers, cheese, oat/honey bar, Shasta)
from the Day Hospital (and told a patient that the 2nd Floor Cafeteria would still be open until 8 p.m.)
Canceled meals due to Yom Kippur, having noted return to china/silverware; nothing was “lost” in the
interim days while using Styrofoam/plastic, and the culinary recommendation above all are the pizzas.
Never chased-down beyond crossing to another building from the Molecular Imaging wing (formerly XRT)
to a “greasy spoon” across Memorial Drive was availability of other dining facilities (presumably, for NIH).
Finally, the menu is both an exhaustive set of alternatives and an educational tool; it’s truly a “keeper”!

On a medical level, the patient received an additional pair of rectal swabs upon arrival from a weekend
pass because a patient had been revealed to have positive cultures over the weekend; although this bug
couldn’t have infected the patient chronologically (because the patient hadn’t been concomitantly
present), this better-safe-than-sorry procedure was viewed as one-in-a-series @ the NIH. Indeed, recalling
the nasal-wash (and need to wear a mask until the Rhinovirus had resolved), the adage was recalled that
“no patient escapes a visit to the NIH without having had numerous cultures.” [Otherwise, the only minor
glitch encountered was delay in the availability of prn-Tylenol after Tx-related fever had emerged; it is
suspected that steroids were eschewed for control of such symptomatology perhaps because a “longer
duration of steroid usage may adversely affect outcomes during anti-PD-1 treatment.”]
Met social worker (who was told that “reactive depression” has been provoked by withdrawal from Syria
and by potential banning of vaping flavorings) and chaplain (who “rounds” on Tuesdays/Fridays). Later,
visited 7th Floor “Spiritual” (around the corner from the library) and told receptionist of donation of
Judaica books to the library (after confirmation they had no yellowed pages). Rabbi Berman had confirmed
concern that there is no current media link for Sabbath (Friday/Saturday) on Channel 80 (301-451-7423)
for piped-in Jewish Sabbath service, despite the availability thereof (at least in Philly, at least on the radio).
She’d offered electric lights and a Siddur (which seems Orthodoxy @ first glance) during her inpatient visit.

For example, watched Yom Kippur service and found the ½ hour experience to be highlighting what
Reconstructionists emphasize [“upper” stuff such as “Our Father, Our King” (Avenu Malchanu) …
surprisingly preserved in this sexist format] in lieu of what the Orthodox/Conservatives would mandate
[“downer” stuff such as “All Vows” (Kol Nidre)]; having grown up “Reform” and having visited a “Humanist
Synagogue” in Detroit, movement overlap (except for the latter, c/o Sherwin Wine) is notable globally.
The video was created @ the Philly hospital @ which the patient was born (Einstein) and had been a
member of its now defunct “Jewish Character Committee”; one would think that a heterogeneity of
rabbis/synagogues would be thrilled to provide videotapes that could be rotated on the Sabbaths,
inasmuch as Rabbi Berman wasn’t “hosting” an event from the 7th floor. Discovered was the “Jewish
Mincha Minyan” @ 2 (M-Th), along with “Sabbath”-style events for other religions. [These ideas were
discussed with the Spirituality Office receptionist but, again, no follow-up was requested/received.]

Thus, having “tested” all available systems and having found them to be intact, it still seems desirable to
help patients/families to get to know the ropes, for this may require a bit of a learning-curve. The patient
has invoked inter alia the ID security system, the parking system, the pharmacy, the cashier, phlebotomy
and EKG, the library, spirituality, the cafeterias (Building 10 plus “greasy spoon”), the HiGi machines,
optimal drive-times to minimize the impact of rush-hours (4:30 a.m. departure from Philly, non-stop),
inpatient supports (cuisine, TV), IV-placement via ultrasound (leaving hematomas that are resorbing), and
cleanliness (all surfaces, floor-to-ceiling). Actually, this has been a dual-purpose exercise, because some
of these observations (plus medical cites) are to be integrated into the Grand Rounds presentation.

The only remaining loose-ends are to check whether the recorded height can be changed to 6”6’ and
whether Pneumovax is desired; the patient isn’t sure whether it has ever been administered (not urgent).