What Makes a Digital Health Startup a Winner? | John Sharp, Personal Connected Health Alliance

What Makes a Digital Health Startup a Winner? | John Sharp, Personal Connected Health Alliance


What separates successful digital health startups from the pack? John Sharp, Director of Thought Advisory for the Personal Connected Health Alliance (a HIMSS organization) has watched digital health ‘grow up’ over the years as an industry analyst focused on health IT, consumer health, and health tech. Want to know what it takes to win? Who does John think is poised to dominate the digital health space? (Hint: It’s a chronic condition management startup and it’s probably not the one you expect!)

Filmed at the HIMSS Health 2.0 Conference in Santa Clara, CA in September 2019.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew Holt.

Get a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health. 

The post What Makes a Digital Health Startup a Winner? | John Sharp, Personal Connected Health Alliance appeared first on The Health Care Blog.

Angels are Taking our Data

Angels are Taking our Data

By ePatient Dave deBronkart

A response to Michael Millenson’s holiday song

Angels seeking Clouds to buy
But healthcare’s not like Spotify
My health data’s here and yon
Monetized by Amazon

Gloria, in excessive profits
Gloria, it’s excessive net cash flow

Investors, why this jubilee?
You’ve done naught to soothe our pain
No care’s improved nor costs controlled
My data just fuels cap’tal gains

Gloria, in excessive profits
Gloria, it’s excessive net cash flow

Silicon Valley come and see
Start-up births thy VCs sing
Come invest on bended knee
But health care’s not yet transforming

Gloria, such excessive profits
Gloria, just excessive net cash flow

The post Angels are Taking our Data appeared first on The Health Care Blog.

This Video Game App is Really Remote Monitoring for Eye Diseases | Stephanie Campbell, OKKO Health

This Video Game App is Really Remote Monitoring for Eye Diseases | Stephanie Campbell, OKKO Health


Keep your eyes peeled for OKKO Health, the startup that has created an AI-driven app game to make sure that your eyes are healthy. Founder-and-optometrist Stephanie Campbell explains how the game works to help clinicians to remotely monitor patients with eye diseases that would otherwise require frequent hospital visits to manage; think diabetic eye disease or age-related macular degeneration. Can we really look to gaming as a way for remote patient monitoring? OKKO certainly sees it that way!

Filmed at Bayer G4A Signing Day in Berlin, Germany, October 2019.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew HoltGet a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health.

The post This Video Game App is Really Remote Monitoring for Eye Diseases | Stephanie Campbell, OKKO Health appeared first on The Health Care Blog.

Switching to Outpatient Surgery for Everyone’s Benefit

Switching to Outpatient Surgery for Everyone’s Benefit


trend toward less invasive procedures, shifting from inpatient to outpatient, has
changed the face of surgery. Industry-changing leaps in technology and surgical
techniques have allowed us to achieve our treatment goals with smaller
incisions, laparoscopy and other “closed” procedures, less bleeding, less pain,
and lower complication rates. As a result, patients who used to require days of
recovery in the hospital for many common surgeries can now recuperate in their
own homes.

procedures grew from about 50% to 67% of hospitals’
total surgeries between 1994 and 2016,1,2 and outpatient
volume is expected to grow another 15% by 2028,3 with advantages for
patients, surgeons, insurers, and hospitals. In my hospital, where bed space is at a premium, my colleagues and
I were able to make a significant impact by switching minimally invasive
surgery for enlarged prostate, also called benign prostatic hyperplasia (BPH),
from inpatient to outpatient.

Opportunity with an Advanced Technology

BPH affects
about half of men in their 50s, with the prevalence increasing with age to include
about 90% of men 80 and older.4 As a result, BPH surgery makes up a significant
portion of urological procedures in any hospital.

have been performing BPH surgery for 11 years. There are several options,
including transurethral resection of the prostate (TURP) and suprapubic
prostatectomy, both of which require hospital stays and bladder irrigation with
a catheter due to bleeding. Another less frequently utilized surgical option for BPH is holmium
laser enucleation of the prostate (HoLEP). HoLEP causes fewer complications and
requires shorter hospitalization.5 Specifically, its postoperative
morbidity is the lowest among BPH surgeries.5,6,7 HoLEP has the
least bleeding, shortest catheter time, and low rates of urinary tract
infection, plus patients are less likely to require additional treatment for
BPH as they age compared to other available therapies.5,6,7 

year, my colleagues and I began using a Lumenis 120-watt holmium
laser with MOSES Technology that modulates
the laser pulse, building
on HoLEP’s advantages in a procedure called MOSES laser enucleation
of the prostate (MoLEP). Simultaneously
cutting and cauterizing in a very controlled fashion, MoLEP improves hemostasis
and significantly reduces surgical time and anesthesia use. With these
advantages and very little bleeding after surgery, we found that patients did
not need prolonged irrigation in the hospital. We began to feel comfortable with
the idea of discharging patients after MoLEP surgery – a change we knew would
make a major impact at our hospital
because BPH surgery is so common.

Making the Outpatient Change

my hospital had been through many surgical advances and transitions to the
outpatient model. The move must be made with caution each time. Although we
were highly confident in patients’ ability to safely leave the hospital after
MoLEP, we needed to track the success of this approach and identify any areas
for improvement. Thus, we spent several months collecting baseline data on MoLEP
patients who stayed at the hospital overnight.

everything that happened inside the hospital, we saw no reason to keep patients
after surgery unless they had acute comorbidities. Even patients with very
large prostates or those taking blood thinners could safely recuperate at home.

months ago, we began releasing patients the day of MoLEP surgery and tracking
the outcomes. To date, no MoLEP outpatients have come into the ER with
complications. We are beginning to see positive trends in the data, including
better bladder voiding the day after surgery, which we think may be traced to patients’
tendency to get up and move around at home and the absence of narcotics in
at-home recovery. We have
found that patients who discharge home are more likely to successfully urinate
on their own after the catheter is removed the next day than patients that stay
in the hospital overnight. 

we started performing MoLEP, I have discharged over 100 patients home the same day.
We are keeping some patients overnight – specifically those with significant
medical comorbidities, concurrent other procedures, or those who do not meet
discharge requirements. 

The Effect on Our Hospital

hospital has responded favorably to the same-day discharge. Our level I trauma
center runs near capacity, so it helps that by discharging healthy MoLEP
patients home, we are freeing up hospital beds for more acute patients. The
change has led us to review our outcomes with other surgical procedures and
take steps to shorten hospital stays. My colleagues and I will continue to explore
less invasive surgical techniques that may allow more patients to recover at
home while we focus on more acute cases in the hospital.

Amy E. Krambeck, MD, is the Michael O. Koch Professor of Urology at Indiana University School of Medicine in Indianapolis.

The post Switching to Outpatient Surgery for Everyone’s Benefit appeared first on The Health Care Blog.

Glen Tullman’s Advice for Health Startups | Glen Tullman, Livongo

Glen Tullman’s Advice for Health Startups | Glen Tullman, Livongo


A must-watch for any startup looking to make it big in the digital health world. Glen Tullman, Chairman of Livongo, shares his best advice for new and emerging startups seeking to disrupt healthcare. On the heels of his company’s IPO, and just after closing the company’s biggest contract to-date with the US Federal Government, Glen talks closing deals, building a great team, what it’s like to navigate the contracting process with a big org like the US government, and more. Entrepreneurial spirit abounds at the Bayer G4A Signing Day event in Europe. Does that mean that Livongo will be jumping into the European market any time soon? Tune in to find out!

Filmed at Bayer G4A Signing Day in Berlin, Germany, October 2019.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew Holt.

Get a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health. 

The post Glen Tullman’s Advice for Health Startups | Glen Tullman, Livongo appeared first on The Health Care Blog.

Patient-Directed Uses vs. The Platform

Patient-Directed Uses vs. The Platform


It’s 2023. Alice, a patient at Ascension Seton Medical Center Austin, decides to get a second opinion at Mayo Clinic. She’s heard great things about Mayo’s collaboration with Google that everyone calls “The Platform”. Alice is worried, and hoping Mayo’s version of Dr. Google says something more than Ascension’s version of Dr. Google. Is her Ascension doctor also using The Platform?

Alice makes an appointment in the breast cancer practice using the Mayo patient portal. Mayo asks permission to access her health records. Alice is offered two choices, one uses HIPAA without her consent and the other is under her control. Her choice is:

  • Enter her demographics and insurance info and have The Platform use HIPAA surveillance to gather her records wherever Mayo can find them, or
  • Alice copies her Mayo Clinic ID and enters it into the patient portal of any hospital, lab, or payer to request her records be sent directly to Mayo.

Alice feels vulnerable. What other information will The Platform gather using their HIPAA surveillance power? She recalls a 2020 law that expanded HIPAA to allow access to her behavioral health records at Austin Rehab.

Alice prefers to avoid HIPAA surprises and picks the patient-directed choice. She enters her Mayo Clinic ID into Ascension’s patient portal. Unfortunately, Ascension is using the CARIN Alliance code of conduct and best practices. Ascension tells Alice that they will not honor her request to send records directly to Mayo. Ascension tells Alice that she must use the Apple Health platform or some other intermediary app to get her records if she wants control.  

Disappointed, Alice tells Ascension to email her records to her Gmail address. In a 2021 settlement with the Federal Trade Commission, Facebook and Google agreed that they will not use data in their messaging services for any other purposes, including “platforms”. Unfortunately, this constraint does not apply to smaller data brokers.

Alice gets her records from Ascension the old-fashion way, by plain Gmail under the government interpretation of her right of access. The rules even say that Alice can request direct transmission of her records in an insecure manner such as plain email if she chooses. But Alice can’t send them directly to Mayo because Mayo, also following CARIN Alliance guidelines, insists that Alice install an app on her phone or sign up for some other platform. 

Alice wonders how we got from clear Federal regulations for patient-directed access to anywhere to the situation where she’s forced to wait days for her records, receive them by email and then mail them to Mayo. Alice wonders.

It’s December 2019. 

This post is about the relationship between two related health records technologies: patient-directed uses of data and platforms for uses of patient data. As physicians and patients, we’re now familiar with the first generation of platforms for patient data called electronic health records or EHR. To understand why CARIN matters, the only thing about EHRs that you need to keep in mind is that neither physicians nor patients get to choose the EHR. The hospitals do. The hospitals now have bigger things in mind, but first they have to get past the frustration that drove the massively bipartisan 21st Century Cures Act in 2016. The hospitals and big tech vendors are preparing for artificial intelligence and machine learning “platforms”. Patient consent and transparency of business deals between hospitals and tech stand in their way.

A platform is something everything else is built on. The platform operator decides who can do what, and uses that power for profit. We’re familiar with Google and Apple as the platforms for mobile apps. Google and Apple decide. A platform for use of health data will have the inside track on machine learning and artificial intelligence for us as patients and doctors. The more data, the better. What will be the relationship between the hospital controlled platform of today’s EHRs and tomorrow’s AI-enabled platforms? Will patients choose a doctor, a hospital, or just send health records to the AI directly? Will US health AI compete with Chinese AI given that the Chinese AI has access to a lot more kinds of data from a lot more places? The practices that will control much of tomorrows digital health are being worked out, mostly behind closed doors, by lobbyists, today.

Three years on, the nation still awaits regulations on “information blocking” based on the Cures Act. Even so, American Health Information Management Association (AHIMA), American Medical Association (AMA, American Medical Informatics Association (AMIA), College of Healthcare Information Management Executives (CHIME), Federation of American Hospitals (FAH), Medical Group Management Association (MGMA), and Premier Inc. are sending letters to House and Senate committees hoping for a further delay of the regulations. 

Access to vast amounts of patient data for machine learning is also driving efforts to weaken HIPAA’s already weak privacy provisions. Here’s a very nice summary by Kirk Nahra. Are we headed for parity with Chinese surveillance practices? 

For their part, our leading health IT academics propose “… strengthening the federal role in protecting health data under patient-mediated data exchange…” Where is this data we’re protecting? In hospital EHRs, of course. We’re led to believe that hospitals are the safe place for our data and patient-directed uses need to be “balanced” by the risk of bypassing the hospitals and their EHRs. Which brings us back to CARIN Alliance as the self-appointed spokes-lobby for patient-directed health information exchange.

According to CARIN, Consumer-directed exchange occurs when a consumer or an authorized caregiver invokes their HIPAA Individual Right of Access (45 CFR § 164.524) and requests their digital health information from a HIPAA covered entity (CE) via an application or other third-party data steward.” (emphasis added) A third-party data steward is a fancy name for platform. But do you or your doctor need a platform to manage uses of your data?

HIPAA does not say that the individual right of access has to involve a third party data steward. We are familiar with our right to ask one hospital to send health records directly to another hospital, or to a lawyer, or anywhere else using mail or fax. But CARIN limits the patient’s HIPAA right of access dramatically: “All of the data exchange is based on the foundation of a consumer who invokes their individual right of access or consent to request their own health information. This type of data exchange does not involve any covered entity to covered entity data exchange.” (emphasis added)

By restricting the meaning of patient-directed access beyond what the law allows, everybody in CARIN gets something they want. The hospitals get to keep more control over doctors and patients while also using the patient data without consent for machine learning and artificial intelligence in secret business deals. The technology vendors get to expand their role as data brokers. And government gets to outsource some of their responsibility for equity, access, and patient safety to private industry. To promote these interests, the CARIN version of patient-directed access reduces the control over data uses for physicians as well as patients much beyond what the law would allow.

The CARIN model for digital health and machine learning is simple. Support as much use and sale by hospitals and EHR vendors without consent while also limiting consented use to platform providers like Amazon, Google, IBM, Microsoft, Oracle and Salesforce, along with CARIN board member Apple. 

CARIN seems to be a miracle of consensus. They have mobilized the White House and HHS to their cause. Respected public interest organizations like The Commonwealth Fund are lending their name to these policies. Is it time for this patient advocate to join the party?

Some of what CARIN is advocating by championing the expansion of the FHIR interface standards is worthwhile. But before I sign on, what I want CARIN to do is:

  • Remove the scope limitation on hospital-to-hospital patient-directed sharing.
  • Suspend work on the Code of Conduct – here’s why.
  • Separate work on FHIR data itself from work on access authorization to FHIR data.
  • Do all work in an open forum with open remote access, open minutes, and an email list for discussion between meetings. Participation in the HEART Workgroup (co-chaired by ONC) and also designed to promote patient-directed uses would be part of this.

Digital health is our future. Will it look like The Mayo Platform with Google and Google’s proprietary artificial intelligence behind the curtain? Will digital health be controlled by proprietary and often opaque Google or Apple or Facebook app store policies?

The CARIN / CMS Connectathon and CARIN Community meeting are taking place this week.  Wouldn’t it be a dream if they would engage in a public conversation of these policies from Alice’s perspective. And for my friends Chris and John at Mayo, what can they do to earn Alice’s trust in their Platform by giving her and her doctors unprecedented transparency and control.

Adrian Gropper, MD, is the CTO of Patient Privacy Rights, a national organization representing 10.3 million patients and among the foremost open data advocates in the country.

The post Patient-Directed Uses vs. The Platform appeared first on The Health Care Blog.

Scaling Health Insurance Disruption | Ali Diab, Collective Health

Scaling Health Insurance Disruption | Ali Diab, Collective Health


Ali Diab, CEO & Co-Founder of Collective Health, wants to talk about healthcare affordability and the fact that consumerism doesn’t really exist when it comes to healthcare because we don’t really have a functioning market. The “Real” buyers — from the federal government to large employers — have no idea what things cost in traditional health plans and are making healthcare purchases for their constituents without full price transparency. So, what has he and Collective Health learned now that they’re 6 years into trying to offer these buyers an alternative to that traditional health plan experience? Nothing is more complex than health insurance innovation, but Collective Health is making significant headway and, according to Ali, has made it past the “homicide phase” of being a digital health startup.

Filmed at HLTH 2019 in Las Vegas, October 2019.

Jessica DaMassa is the host of the WTF Health show & stars in Health in 2 Point 00 with Matthew Holt.

Get a glimpse of the future of healthcare by meeting the people who are going to change it. Find more WTF Health interviews here or check out www.wtf.health. 

The post Scaling Health Insurance Disruption | Ali Diab, Collective Health appeared first on The Health Care Blog.

The Public Health To-Do List is Choking Doctors and Jeopardizing Patients’ Lives

The Public Health To-Do List is Choking Doctors and Jeopardizing Patients’ Lives


“By the way, Doc, why am I tired, what’s this lump and how do I get rid of my headaches?”

Every patient encounter is a potential deadly disease, disastrous outcome, or even a malpractice suit. As clinicians, we need to have our wits about us as we continually are asked to sort the wheat from the chaff when patients unload their concerns, big and small, on us during our fifteen minute visits.

But something is keeping us from listening to our patients with our full attention, and that something, in my opinion, is not doctor work but nurse work or even tasks for unlicensed staff: Our Public Health to-do list is choking us.

You don’t need a medical degree to encourage people to get flu and tetanus shots, Pap smears, breast, colon and lung cancer screening, to quit smoking, see their eye doctor or get some more blood pressure readings before your next appointment. But those are the pillars of individual medical providers’ performance ratings these days. We must admit that the only way you can get all that health maintenance done is through a team effort. Medical providers neither hire nor supervise their support staff, so where did the idea ever come from that this was an appropriate individual clinician performance measure?

Public health in its broadest sense is what drove down morbidity and mortality in the last 100 years. But most of those things are, at least in many places, easily and successfully done by people without medical degrees.

I don’t mean to be uppety, it is not beneath me to promote those things – I’m doing it gladly, but since I am not a solo practitioner, I believe those things can be done just as well by other staff, if necessary with standard protocols where a physician’s order is required. Ideally I would then just support or explain these things when patients have questions.

People are sick, people are worried about symptoms, treatments need adjustments, information from outside providers could affect our patients’ health or our own assessments and treatment plans for them. This is what we need doctors for, and experienced Nurse Practitioners and PAs.

Medical professionals are trained to diagnose and treat disease. Are there so many of us and are we so underutilized that our healthcare “system” can afford to fill our time with tasks that could easily be done according to protocol by non-providers?

It’s your choice, America. If you think there just might be a doctor shortage, an aging, sicker population and a looming decline in the health of our population – who should do what in healthcare?

Hans Duvefelt is a Swedish-born rural Family Physician in Maine. This post originally appeared on his blog, A Country Doctor Writes, here.

The post The Public Health To-Do List is Choking Doctors and Jeopardizing Patients’ Lives appeared first on The Health Care Blog.

Will ‘Digital-First’ Health Plans Usher in Telehealth At-Scale? | Danielle Russella, American Well

Will ‘Digital-First’ Health Plans Usher in Telehealth At-Scale? | Danielle Russella, American Well


Is healthcare on the way to ‘telehealth at-scale?’ We checked in with American Well’s Danielle Russella, President & GM of Health Plan Solutions, to rumor-check the buzz we’ve been hearing about “digital-first health plans” and what that means for the future of health plan coverage for telehealth services. From provider uptake and payment parity to patient awareness and utilization, Danielle weighs in on the state-of-play of telehealth/health plan relations and how digital health seems to finally becoming part of payer strategy talks within the C-suite. At American Well, that’s meant more growth in last 2 years than in the previous 8 years, says Danielle. Is that why we’re hearing those IPO rumors? Tune in to find out if there’s any merit to that chatter.

Filmed at HLTH 2019 in Las Vegas, October 2019.

The post Will ‘Digital-First’ Health Plans Usher in Telehealth At-Scale? | Danielle Russella, American Well appeared first on The Health Care Blog.

“Chasing My Cure”: A Book Review

“Chasing My Cure”: A Book Review


Have you
thought about your own mortality?

Who hasn’t,
given the frequency of seeing death and grief depicted in the media or through
real life encounters with friends, relatives, neighbors, or patients? These
incidents trigger uncomfortable and sometimes uneasy thoughts of how we might
personally deal with potential illness and disease. The same thoughts are soon
displaced by the busyness of living. 

dealing with the death of his mother from a brain tumor, we learn David
Fajgenbaum was healthy, living life to its fullest, and a future doctor in the
making. He may have thought about his own mortality as he grieved the death of
his mother, but likely never imagined anything dire would happen to him.
Fajgenbaum was pushing forward on several fronts, including leading a
non-for-profit organization for grieving college students, symbolically named
“Actively Moving Forward” or “AMF” after his mother’s initials, all while first
playing college football and then attending medical school. By all accounts,
this was a vigorous young man, meticulous about his diet and physicality.  When he became ill, it was a blunt reminder
that life is unpredictable.

In his book “Chasing my Cure”, Dr. Fajgenbaum takes us back to the time when he first got ill.  He vividly describes his physical symptoms and various scans which detected his enlarged nodes. Interestingly, we learn how long he was in denial of these symptoms, thereby delaying medical attention in favor of studying. This neglect of self-care highlights part of his personality, but also represents the pressure and expectations placed upon a majority of medical students. 

was hospitalized and his symptoms puzzled even the best of doctors. He
describes how doctors thought he might have had lymphoma, infections, an
autoimmune disease, or some esoteric illness; for unknown reasons, a lymph node
biopsy was not done. He did have many other tests such as a liver biopsy, bone
marrow biopsies, PET-scans, and renal arteriograms; however, none of these
tests revealed his underlying disease. He spent 4 weeks at the University of
Pennsylvania hospital, receiving visits from friends who came to say their
goodbyes as death appeared imminent. The reader gets a firsthand account of
David’s prolonged and agonizing hospital stays, including being airlifted to a
hospital in Raleigh in a desperate move by his father who worked in the area as
an orthopedic surgeon. David was started on high-dose steroids in an attempt to
alleviate his mystery illness. He eventually stabilized and was discharged home
after 7-weeks of inpatient stay between two hospitals, but without a true
diagnosis.  In the absence of knowing
what caused his illness, he relied on prayers and hopes that whatever he had
would not return. 

worked for a brief period, but within a few weeks David started getting ill
again and was rehospitalized. This time however, a lymph node biopsy was done.
If I were to get sick, I would want my doctor to share the news with me in a
manner that is much better than the way it was communicated to David. 
When the results were available, his oncologist was not present. Instead, the
nurse practitioner walked into David’s room, and in a giddy mood declared the
good news that the biopsy did not show lymphoma, but rather “HHV-8 negative
idiopathic multicentric Castleman Disease iMCD”. No further explanation was

This news
represented a turning point in David’s quest for answers. David, who was not
familiar with this disease, took on the books, the internet, and the
literature, finding himself astonished at how little information were
available, and that some of the published information were inaccurate. He discovered
that Frits Van Rhee in Arkansas is the world authority in Castleman Disease.
David traveled to see him and found himself hospitalized in Little Rock when
the blood tests performed showed so many abnormalities that it was clear
treatment was needed immediately.  Van Rhee called David, who was at the
airport, and asked him to return to be hospitalized and to be started on

The ability
to secure compassionate use of siltuximab, an antibody against IL-6, appeared
seamless and David was granted the drug. However, siltuximab was not effective
initially, and David was switched to chemotherapy. Eventually, he stabilized,
only to relapse again. After a couple of more relapses, he experimented by
treating himself with sirolimus, based on research he personally performed.
Sirolimus worked, and he remains in remission as of this writing.

When his
disease was not active, David was relentless in finding ways to organize forces
to better understand Castleman disease; he was instrumental in designing a
checklist to facilitate  assigning the proper diagnosis. Along with a few
others, he successfully established the Castleman Disease Collaborative Network
(CDCN), which started to gather during the annual American Society of
Hematology meeting. The CDCN was tasked with establishing a framework on how to
diagnose, treat, and research the disease. These efforts led to several
high-profile publications that helped physicians diagnose Castleman much faster
and more easily than David’s doctors did. These efforts continue to this day.
The reader can sense the impact of the work of CDCN when the author cites
several examples of other patients diagnosed with the same illness, and how he
bonded with them sharing his human journey along with his scientific

There is so
much to learn here of how these scientific advances require harmonized
collaborative efforts between all stakeholders involved. David petitioned
pharma to fund the largest patient-driven registry known for this disease.
Collaboration between pharma and academia is critical to advance the field if
the goal is to help patients in need. While some academicians seem to always
attack the pharmaceutical industry, this book shows that collaboration did
benefit patients and their families. We learn about the importance of mentors
when David meets Arthur Rubenstein and becomes involved in establishing the
Orphan Disease Center at the University of Pennsylvania. Every reader, young or
old, would want to have an Arthur Rubenstein in his/her life. I know I would.

shares a very surreal human element in which he refused to see his
ex-girlfriend (now his wife Caitlin) on two occasions while hospitalized. He
simply did not want her to see him in such a condition, and preferred that she
thought of him as the healthy vibrant ex-football player and weight lifter. As
I read through these paragraphs, I asked myself who did I want visiting me if I
were to be lying helpless in a hospital bed? I can’t make up my mind, but I
think I’d want to see more people to say my goodbyes, not fewer.

We learn about the deep love that David has for Caitlin and we cheer for both as their wedding is scheduled and takes place in a late spring. As I was getting emotional reading about the wedding, David managed to make me smile when he took a few shots at his dad’s ability to play guitar at the wedding. In the weeks preceding the wedding, we learn about the ups and downs of David’s mental state, and his concern whether the wedding is fair to Caitlin given the unpredictability of his illness. It reminded me of a patient of mine who invited me to her wedding and how that invitation affected me deeply.

Throughout the book, there are uses of old metaphors of “battle” against cancer and “winning the war”. Some have criticized the use of these metaphors, suggesting that they adversely affect patients. I have argued against that criticism from the position that every patient should use whatever metaphor they wish to use if it helps them move forward. Who are we to judge what metaphors patients use? I embrace David’s use of these words, which made me feel as though I was standing alongside him in his courageous battle.

But there were some elements that I struggled with a bit. The author did not discuss some of the limitations of how orphan diseases are defined. Current definition would essentially lend every cancer as an orphan, and in fact, as most cancers are being subcategorized into various subtypes, the definition might need to be revisited. I did not see a critical discussion of the topic.

There was
almost not much talk on the cost of care except when David describes the travel
cost between Pennsylvania and Raleigh to receive siltuximab. Given that the
author was addressing challenges of orphan diseases, research needs, funding,
and other items, elaboration on the cost of care was in order.

I sensed from reading the book that the author was very much in favor of the off-label use of drugs. This might have been biased by his own experience and the fact that he has benefited from the off-label use of sirolimus. In fact, in one paragraph he writes that we need to mitigate the systemic barriers to off-label use. But most patients don’t benefit, and I would have wanted to read more words of caution as opposed to a strong endorsement for such a strategy.

These were
minor drawbacks to a book that is well-written by the patient who suffered from
the disease, and who happens to be the researcher that made a significant
impact on this disease. We live David’s journey and he artfully brings us into
his home and into his hospital room.

One of my
favorite statements in the book was when David was severely ill, and he thinks
to himself: “Greatest regrets were things that I had thought of doing but never
”. He goes on, “It’s the absence of memories that you wish you had
made and the realization that you’ll never get the chance to make that coalesce
into a horribly vivid pit of regret in your stomach.
” These made me pause
and think. David is so right.

I highly recommend this book; there are numerous lessons to learn and not easy to summarize in one column. One of the best books I have read in 2019.

Tune into this week’s Outspoken Oncology podcast for more on Chasing My Cure as Chadi interviews author David Fajgenbaum.

Chadi Nabhan is an oncologist in Chicago whose interests include strategy and business of healthcare. He’s a prolific speaker and occasional tweeter. He can be reached @chadinabhan.

The post “Chasing My Cure”: A Book Review appeared first on The Health Care Blog.