Before it becomes DC’s grandest Apple Store, it Celebrates LGBTQ Heroes

2017.05.13 #HeroesGala2017 Capital Pride Washington DC, USA 4821
2017.05.13 #HeroesGala2017 Capital Pride Washington DC, USA 4821 (View on Flickr.com)
The historic Carnegie Library in Washington, DC, is about to get a very innovative tenant in Apple, Inc – one that celebrates people who change the world. It’s therefore fitting that it was the location for 2017’s Heroes Gala.

2017.05.13 #HeroesGala2017 Capital Pride Washington DC, USA 4734
2017.05.13 #HeroesGala2017 Capital Pride Washington DC, USA 4734 (View on Flickr.com)

I attended (and took these photographs) because Kaiser Permanente Mid-Atlantic States (@KPMidAtlantic) is a Platinum Sponsor of 2017 Capital Pride (@CapitalPrideDC) and Capital TransPride (@TransprideDC). And because I am a member of this community. This will be my 5th Capital TransPride, which I’ll post about separately.

Capital Pride’s Heroes Gala, hosted by Historical Society of Washington, D.C., and with Major Event Sponsors Hilton and UPS, honors the unapologetically proud individuals, leaders, and activists who have furthered the causes important to the LGBTQ community in the national capital region and beyond. See: www.capitalpride.org/events/heroes-gala-2017/

Being Treated as Lesser, Doing More

I am still working my way through Tim Ferris’ Tools of Titans, and this passage about Ryan Holiday (@RyanHoliday) and Ben Franklin caught my eye:

Greatness comes from humble beginnings; it comes from grunt work. It means you’re the least important person in the room— until you change that with results. There is an old saying, “Say little, do much.” What we really ought to do is update and apply a version of that to our early approach. Be lesser, do more.

Ferriss, Timothy (2016-12-06). Tools of Titans: The Tactics, Routines, and Habits of Billionaires, Icons, and World-Class Performers (pp. 337-338). Houghton Mifflin Harcourt. Kindle Edition.

There’s a key difference here. People in this community don’t have the option of being lesser, it is foisted on them every day.

And yet, the accomplishments are as grand as any that will fill a new store (or 100 of them).

A Flashback to the American Medical Association 1991 – “Let them Die”

Ruby Corado (@CasaRubyDC) reminded us that the street that the Carnegie Library sits on, K Street, NW, in downtown Washington, DC, was, not long ago the place where transgender people were harassed by police and moved to other parts of the city or arrested.

On this night, though, police officers, including officers who are transgender themselves, protected us, so that everyone could enjoy the beauty of the Library and our nation’s capital.

Ruby’s reminder caused me to have a flashback to my own history, when the world was a less loving place.

I was in Chicago last week for the Innovation Learning Network meeting, and our group dinner was held at Buddy Guy’s (@BuddyGuys), which happens to be across the street from the Chicago Hilton and Towers. This is the regular location of the American Medical Association’s annual meeting.

At my very first (and last) annual meeting in Chicago in 1991, the entrance to the hotel was blocked by protesters angry with the American Medical Association because of its stance on persons with HIV. I will never forget to this day what I, as a medical student, heard from the podium from a fellow medical student that day. He said, “A group known as ‘ACT-UP’ or ‘AIDS Coalition to Unleash Power’ is outside. When you walk out of the hotel, take off your badges and do not engage.” What he meant, in doctor speak was “let them die.”

I showed photographs of this time in front of the hotel from my TED talk with Regina Holliday. At the time, it felt like being imprisoned within the profession. However, that didn’t last long. Because that moment created a generation of physicians dedicated to changing everything, and they now are the leaders of those same organizations. As I mentioned in yesterday’s blog post, people should be careful when they work to design against hope…

More to Be Done

I bring this up because this is what’s being created right now in 2017. A society that directly or indirectly designs against hope, life, HIV prevention, employment, freedom from incarceration for the LGBTQ community is creating a generation of super-leaders, who will change everything.

For as much as they say, they do very much more, and as much as the world works to make them lesser, more of the world learns to love better as a result. It’s how the human spirit works.

Rest of the photos below, take a look to see what communities controlling their own destiny looks like 🙂 .

Why I’m going to Capital TransPride this weekend

2013 HealthFoo Day 3 22675
2013 HealthFoo Day 3 22675 (View on Flickr.com) – Open Doors by @ReginaHolliday

Short answer: because I and my fellow physicians went into medicine to support the ability of every human being to achieve their life goals.*

*see my note at the bottom of this post about the physician role

Capital Transpride is May 18, 2013, in Washington, DC.

Kaiser Permanente is a Gold Sponsor for the first time, this year. As of 2013, Kaiser Permanente covers and provides medically necessary care for its employees who are trans, earning it a 100% rating on the Human Rights Campaign Corporate Equality Index.  Every member is covered for hormone treatment and behavioral health services. Not every member is covered yet for surgery, however, because not every employer purchases a supplemental insurance rider for this coverage.

There are also clinical facts about this care, and an increasing trend of coverage across the United States, which I have written about in several posts on this blog, since November, 2012.

Since then, I have been having dialogues with others in this area, some friendly, some extremely hostile.

I’ll answer some of the questions I have actually been asked, here. I have reworded a few and not answered a few because they were asked too insensitively to post in their original format – it’s okay, we’re on a learning journey :).

Q: This is a small population of people, why should they be advocated for?

That’s what people asked in 1993 about persons with HIV/AIDS.

Today, we look back in horror at the way the medical profession carried itself during that era.

To learn more about that, check out Regina Holliday (@ReginaHolliday) and my TEDx Talk, Embracing Failure.

I’m relatively certain the medical profession will be horrified by its treatment of trans people when it looks back as well. I’m going to TransPride to help shorten and end the horror.

Q: Isn’t this care way too expensive? Why should I have to pay for it? 

That’s what people asked in 1993 about persons with HIV/AIDS.

A few additional points:

  • Trans persons who are insured and have so-called “exclusion clauses” for their care are paying for everyone else’s care, including care that has been deemed unnecessary and wasteful. Hormones, sex affirmation surgery, and behavioral health, when medically supervised are necessary and effective. Treating this rare condition (the way I refer to it with medical colleagues, understanding that every person doesn’t see it as a “condition”, it is an identity) using established guidelines promotes other positive health outcomes, and supports the achievement of life goals, which is what the health care system is for.
  • Most insurance plans that won’t cover surgery or hormones cover the complications of surgery or hormones. In other words, if a trans person obtains surgery and has an infection or other complications, or complications from non-prescribed hormones (heart attacks, clots, strokes) you will pay for their care. This doesn’t even touch on lost productivity, behavioral health issues, and suicide. Gender dysphoria is not a mental illness – much of the mental illness that is associated with gender dysphoria is caused by bias in society that the health care system promotes. Medically supervised care is likely to be less costly in the long run.

Q: Isn’t sex affirmation surgery cosmetic? 

No, it is not. I’ll state it again for the search engines out there: Sex affirmation surgery is not cosmetic.

The below is from American Medical Association Resolution 122 (A-08), 2008

Whereas, Health experts in GID, including WPATH, have rejected the myth that such treatments are “cosmetic” or “experimental” and have recognized that these treatments can provide safe and effective treatment for a serious health condition; and

Whereas, The denial of these otherwise covered benefits for patients suffering from GID represents discrimination based solely on a patient’s gender identity; and

Whereas, Delaying treatment for GID can cause and/or aggravate additional serious and expensive health problems, such as stress-related physical illnesses, depression, and substance abuse problems, which further endanger patients’ health and strain the health care system; therefore be it

RESOLVED, That the AMA support public and private health insurance coverage for treatment of gender identity disorder (Directive to Take Action); and be it further

RESOLVED, That the AMA oppose categorical exclusions of coverage for treatment of gender identity disorder when prescribed by a physician (Directive to Take Action). Fiscal Note: No significant fiscal impact.

If hormones and behavioral health are covered and performed, but not surgery, is this discrimination?

Yes. Medically necessary care includes all three components, appropriately prescribed in consultation between a patient and physician. Not every patient needs all three components. Disallowing any of the components represents discrimination based on a person’s gender identity.

See above.

Weren’t you attacked recently on the Yale Daily News website when you commented about their decision to cover sex affirmation surgery?

I was. By 3 or 4 people.

By the way, Yale University is in the group of 37 universities who now cover this care for their students.

Once the attacks became ad hominem in nature, I went away. I just checked back in, an lo and behold, and comments like this  popped up:

 I admire Dr. Eytan’s remarkable patience and forbearance in responding to the comments on this thread. Even when respondents have turned to devaluation and ad hominem attacks, he has maintained a respectful stance toward all.

And then an email like this arrived in my box, from 15-year Yale Alumnus, Rachel See, JD:

Just wanted to drop you a note to thank you for your accurate and even-handed comments to the Yale Daily News story on Yale’s extension of health benefits (including surgery) to transgender students. This trans Yale alumna who graduated some 15+ years ago from Yale College was deeply gratified to see an accurate, and compassionate voice of reason in the comments.

In many trans*-related discussions in the popular media, I often see a tagline of, “…and as always, don’t read the comments.” I routinely ignore that advice, but its presence reflects an unwelcome reality that there can be a lot of rancor (and plain old fashioned ugliness) in online comments.

In a totally different context (blogging about ichthyosis), my wife and I have asserted that a calm, rational and respectful voice can act as a humanizing buffer against the propagation of some of the uglier trolls. But we’ve also noticed that those (lone) voices often go unrecognized.

So — thanks. 🙂

These messages cancel out 10,000 attempts at devaluing other human beings, because they show that the world is learning to love better.

If more attacks come in any venue I’ll just get one or two more of these messages that will cancel out 10,000 more.

The lesson is the same here – un-love can’t win – so great to see that affirmed, again.

Ted, are you transgender?

Feel free to select the answer that will allow you to have the greatest empathy.

The truth is:

  • I am not transgender

I am also not

But I have met or seen the stories of people who are/were.

We didn’t go into medicine to un-care for people, and in 2013, we don’t have to. More and more clinicians are practicing the medicine of inclusion every day, and we’re going to change everything.

If I missed any questions above, feel free to ask more in the comments.

See you there. Oh yes, and love always wins :).

  • Civil Rights Protesters, Washington DC
  • Let Freedom and Love Ring
  • Please!
  • Chris and Hampton
  • Prop 8 ruling outside Federal court in San Francisco 4
  • Washington DC Demonstration for Equality November 15 2008 15664
  • reason to celebrate
  • The Death of DADT - 352/365
  • Standing on the Side of Love with LGBT People Everywhere!
  • Marriage Equality Celebration by The Stonewall
  • CA Day of Decision
  • Civil Marriage Protection Act 2012 Signing Ceremony
  • SCOTUS - DOMA  20991
  • Boy Scout Memorial 19242
  • 2013 Rally for Transgender Equality 21169
  • SCOTUS  26251
  • March on Washington 2013 29383

*A note about the physician role. There are a lot more people than physicians working in this area, and they have been doing it for a very long time. Our role is to bring the patient story into every conversation, and help the people and communities we serve take control of their destiny. With that in mind, I acknowledge many dedicated people and organizations, including Casa Ruby , @casarubyDC , the DC Center @TheDCCenter and those who I have not met or worked with, yet. See you tomorrow as well.

AMA Policy – Professionalism in the Use of Social Media

AMA – AMA Policy – Professionalism in the Use of Social Media – This was posted recently and it is a good piece of work that will promote physician (and patient) discussion about the professional role and use of social media. Tip to Jane Sarasohn-Kahn ( @healthythinker ) for writing it up in her I-try-to-read-every-post blog, HealthPopuli.

I applaud the American Medical Association (of which I am not currently a member, but I am a member of Medical Society of District of Columbia) for recognizing that physicians are engaging in this communication and that it has benefits. The history of AMA with regard to electronic communication with patients is definitely changing for the better (several posts about the past are here).

Opening paragraph:  It seems to refer to a “one way” dialogue with patients – “provide opportunity to widely disseminate public health messages and other health communication.” Question is, can physicians actually use the medium to reduce the separation between the profession and patients to promote quality, safety, affordability, to learn to be better doctors? My answer is yes.

(a) Don’t Post patient-identifiable information online – We have to protect patients’ personal information. I think it’s important to differentiate “without their consent.”

Sometimes, they want us to share it, and we will do that with their consent. “This is important because it allows the patient story to come into our work. For example, on this blog, the stories of Regina Holliday ( @ReginaHolliday ) and ePatientDave (@epatientdave ) and Donna Cryer ( @donnacryer ), are told with their consent. Because Regina is actually a member/patient in the health care system I work in, Kaiser Permanente, she has signed a HIPAA release document allowing us to tell her story.

In actuality, I have met patients who have gone through the HIPAA release process, and it is less “allow” and more a request to “promote,” so that other patients after them will have great health care. Perhaps an organization could post its HIPAA release process for others to use. Some useful guidance on what constitutes posting patient-identifiable information can be found here, at the Ohio State Medical Association Social Media Toolkit.

(b) Using privacy settings to safeguard personal information – Sensible, and supports the idea that some physicians may include personal information about themselves online.

(c) Interacting with patients on the Internet, maintain appropriate boundaries of the physician-patient relationship – This confuses me in the way it’s written, because I am coming from a place of interacting with patients, but not necessarily “my” patients. So perhaps for this audience, it’s understood that “patient” means “your patient?” Otherwise, a physician interacting with patients who are not theirs are not in a patient-physician relationship, correct? What do our patients think about this one?

(d) Separate personal and professional content online – I do this, and I also don’t do this, so my advice is to decide which blend makes sense, because it is a blend, we are people.

(e) Physicians have a responsibility to monitor other physicians and report them to the authorities if needed – I’ve never seen this before in a social media policy (feel free to point out other policies that have this clause, if you’ve seen it, in the comments).

This seems more of an “enforcement/policing” model than a “coaching/educational” model of learning to be better. Is this how physicians are instructed to engage in quality improvement with their colleagues in real life? And what’s the role of the patient, are we accountable to them and do they have the opportunity to help us be professional online? And what’s their (the patients’) definition of us being professional?

(f) Social Media can undermine public trust in the medical profession – This is really the only one that I am not on board with. It is a reminiscent of a less than optimistic approach that I’ve posted about here before. Take a look at this piece of data from the Digital Influence Index (pointed out to me by Social Media guru @vincegolla) :

75 percent of consumers view companies with microblog accounts as more deserving of their trust than those without.

Is it possible that social media can improve trust in the medical profession, to enhance its reputation among the people it serves, to have consequences for medical careers that are transformational and supportive of lifelong learning?

See what you think, feel free to post your thoughts in the comments, and please welcome your physician in their professional use of social media to improve your health and health care.

 

 

Now Reading: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded”

I’m not that smart and my ideas are not that unique.

This is why I enjoy writing the posts that are tagged “where we came from” on this blog.

The title of this one comes from a 1991 article published in the British Medical Journal about the idea of providing patients access to their complete medical record. To really dig deep, though, I wanted to grab the seminal 1973 article from The New England Journal of Medicine on this topic, and thanks to the Internet, I found it.

In Sounding board. Giving the patient his medical record: a proposal to improve the system (There appears to be a PDF of this article on the Internet here), authors Shenkin and Warner lay out some facts about the health system that don’t seem to different than those of today, sadly:

Dissatisfaction with the functioning of the medical care-system has become widespread. Four serious problems are maintaining high quality of care, establishing mutually satisfactory physician-patient relations, ensuring continuity and avoiding excessive bureaucracy.

Some differences were apparent in 1973, such as the fact that in 41 states, patients could only obtain their medical records through litigation (!). Also, it appears with the emergence of “centralized organization” though things like health maintenance organizations, that physician autonomy was under siege. The health system was considered at the time to be “decentralized to the penultimate step – the physician” and the fear was that their autonomy was “unchecked.”

All of that aside, the authors, quite visionary in my opinion, laid out an almost Web 2.0 version of the medical world.

They talked about the idea of “decentralized medical review.” A few quotes:

The freely available record would provide a more “longitudinal” view of a patient, and physicians would appreciate better (and treat better) the course of a disease. Since innovation proceeds mainly by the contagion effect, new knowledge would probably be put into practice more swiftly.

And this one

Decentralized peer review would provide recognition of excellence in the practice of medicine, and hence enhance the prestige of being a practicing physician. Patient records and the care that they reflected would become a source of pride open to the perusal of fellow professionals. The expected improvement in continuity would decrease frustrations, and improved physician-patient relations would add importantly to physician satisfaction.

Whoa. They are talking wisdom of crowds, viral innovation, and building trust through transparency. In 1973.

Flash forward to 1991. In The Right to Know, author McLaren discusses data from Denmark, which provided patients “statutory rights” to their entire hospital record, with no ill effects. He concludes:

The argument against giving patients greater access to their records has been lost; the challenge now is to get doctors skilled in writing records that their patients will find useful.

Whoa. He’s talking Meaningful Use.

1973 was before my medical time, but 1991 wasn’t. In 1991 I was in medical school, and I’m pretty sure if you asked me, “Ted, should your patients see what you wrote about them in that manila folder thing with paper?” I would have said, “Why shouldn’t they?”

Ironically, it’s probably the very group that opposed these viewpoints that are responsible for creating mine. Summer of 1991 was my first (and I think just one of 2) trips to the national meeting of the American Medical Association, in Chicago. That meeting was marked by protests from the HIV/AIDS community on the outside. And on the inside, after a week, I remember leaving with the thoughts, “I met a lot of great peers here, but who are these leaders who are resistant to technology and only allow heterosexual men to participate?* They aren’t me. And I’m not them.” This is the heritage of Generation X – we were groomed to be on the side of the patients.

So that’s my story, and the story of where we came from with regard to sharing medical records with patients. Has nothing happened in 18 years? Absolutely not.

  • The largest medical groups in the United States regularly share medical records with patients, online
  • Most patients have a “statutory right” to their hospital record, albeit, not in the most friendly or useful way (see this example from Tufts University)
  • Crowdsourcing, trustbuilding, and transparency are sweeping the business world. Health care is on the verge.
  • Generation X are the attending physicians and medical directors, Generation Y are graduating from their residencies.

In the Shenkin article, it was proposed that a law be passed to require that a “complete and unexpurgated copy of all medical records, both inpatient and outpatient, be issued routinely and automatically to patients as soon as the services provided are received.” They do a great job of covering every known objection, “firstly” through “ninthly.”

My favorite is of the fear of “poor quality review” by peers and patients. They said that in 1973, it is “safer for them (physicians) to measure adequacy by academic degrees achieved than by competence demonstrated.”

The great thing I have learned pretty solidly from so many people by 2009 is that the medical community has so much support from patients and families – they want them to be great, they will only help. One patient said this at a recent continuing education course to room of us: “Can I just say thank you for paying attention in medical school, you are in my thoughts, you have my full gratitude.”

Let’s please remember these words to keep the conversation about ending secrecy an easy one, not a hard one. And, carry these two articles in our back pockets at all times.

*The American Medical Association has since reversed its stance on discriminating against gay, lesbian, bisexual, and transgender physicians and patients.