ABC's Secrets and Lies calls hemophilia, "a nasty byproduct of incest."

Dear Media Member:

My name is Patrick James Lynch, an actor/writer/producer and advocate living with severe hemophilia A. On Sunday night during the airing of ABC's Secrets and Lies, there was a downright defaming and discriminatory remark made about hemophilia, calling it "a nasty byproduct of incest."

Were the same said of many other minority populations, or a "buzzy" health population such as those living with autism, there would've been immediate attention. Instead, our small community is fighting for any attention at all and asking those involved with the show to publicly apologize for misinforming 6-7,000,000 people and giving the 20,000 Americans living with hemophilia a new stigma to worry about (we've already gotten reports from parents about kids being bullied in schools because of this).

I've attached a video clip from the episode that includes the remark.

The Hemophilia Federation of America put out a Press Release, calling for a Public Apology, and, as a community leader, I penned an open letter through my organizations - Stop The Bleeding! - asking for public accountability from the show's producers (the letter - seen by 42,000 people in 24 hours - can be found below in it's entirety). These two pieces of material have rallied a very angry community into taking aggressive but appropriate steps to correcting this horrible incident.

Despite the terrible reason we're in this position, I see these next steps as an opportunity to set two examples: 1) how a small community - 20,000 people with hemophilia in the US - can unify and use aggressive but appropriate tactics to ensure their voice, though small, is heard when they are wrong, and 2) how a gigantic network - ABC - can own such a terrible mistake, make it right, and move forward with minimal fallout. I'm asking your help in getting this message out there.

I live in Los Angeles and would very much like the opportunity to speak with you about this story. I hope to hear from you.

Health & happiness,

Patrick James Lynch (email: patrick@believedigi.com, c: 516.448.9164)

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Originally posted on the Stop The Bleeding! Facebook Page, Monday March 16th, 2015 @ 9:15amPST.

"Hemophilia is a nasty byproduct of incest." - Secrets and Lies, S1E4 "The Sister" (Aired: March 15, 2015)

To Those Behind ABC Television Network's show Secrets and Lies,

As a producer and writer, I daydream about what it would be like to run a hit television show. I like thinking about how I'd collaborate with my writers, empower my directors, and encourage my actors. I like thinking about how to account for fan feedback and grow an audience season after season. But, perhaps more than anything, I think about the responsibility I would own as a creative leader were I to be behind a network show that had a audience of 7,000,000 people, approximately that of Secrets and Lies. I'd like to imagine that anyone in that position would not allow laziness, ignorance, or malice to guide the show's content, so you can imagine my shock when last night one of your character's uttered the sophomorically-conceived, slanderous line, "Hemophilia is a nasty byproduct of incest."

I'm suspending my disbelief that a Writers Guild of America union member making $100,000+ annually for their creative writing prowess could somehow arrive to the decision that "Hemophilia is a nasty byproduct of incest" was in any way a creative or even competent line of dialogue, but the utter discrimination and defamation that drips off of that disgusts me. I'd expect more out of a high school playwright, nevermind a TV show seen by 7,000,000 people a week!

Putting aside the specific writer responsible for this abhorrent misrepresentation of an entire population, I hold the following executive producers - the vision-keepers for the show - responsible for implicitly standing behind this inaccurate, discriminatory, and horrible comment:

Timothy Busfield
Tracey Robertson
Nathan Mayfield
Aaron Kaplan
Barbie Kligman

Shame on each and every one of you for what aired last night. At it's least offense, it's inexcusably ignorant - a 10-second Google search debunks this horrible suggestion - and at it's worst, it's openly discriminating against and defaming a minority community that’s already faced such incredible misrepresentation in the media. How dare you. Would you ever be so foolish as to make similarly horrible comments about other minority population in this country? Would you keep your jobs if you did? Should you now?

When Ryan White was diagnosed with HIV/AIDS in the 1980's as a result of tainted blood product he took for his hemophilia, the amount of misinformation that was rapidly spread about hemophilia made our small community members lives exceptionally difficult for many, many years. Today, there are roughly 20,000 of us in the USA, and last night you told 7,000,000 people that each of us with hemophilia have it because it's "a nasty byproduct of incest.” That’s sickening, and you let it happen.

Too often those in entertainment hide from the responsibility that comes with the power of being a leader in entertainment. Defaming & discriminating against a select group of human beings is unacceptable, and "It's a just TV show" is not a satisfactory response. 7,000,000 are listening. 7,000,000 are influenced. 7,000,000 people - 99% of whom knew NOTHING about hemophilia - are now the classmates, colleagues, and employers of members of our community, and this is the information they are equipped with. Now, we that must fight against this asinine stigma your show has single-handedly created.

The milk is spilt. You screwed up. Big time. There's no undoing that; however, I challenge you - executive producers listed above - to own your terrible decision and publicly apologize to this community. After all, every single one of us belong to an "other" category in some way, shape or form, and none of us deserve to be misrepresented in such an egregious way. You're now known for a mistake, but you can at least be known for owning it too.

I look forward to your apology. Happy Hemophilia Awareness Month.

SoCal Hemophilia - Town Hall Meeting re: HFSC.

Saturday, February 28th from 4pm-6pm. Omni Hotel - Bradbury Room (251 S. Olive St., Los Angeles).  

This meeting will directly follow CHLA's Family Day, however, CHLA is in no way affiliated with this meeting.

English-to-Spanish Interpretation Service will be provided.

Generic picture of people who can raise their arms. Extra credit to the man in the middle yodeling. Credit: The Internet.

Generic picture of people who can raise their arms. Extra credit to the man in the middle yodeling. Credit: The Internet.

Rather than create a very lengthy Facebook post and elicit numerous comments better saved for the meeting, I thought it best to describe here what exactly this meeting is all about.

Goal:  Unite community members who are actively boycotting our local foundation and those with serious complaints about it in a solutions-driven meeting designed to discuss and itemize precisely what the complains/concerns/grievances are.  The final list will be shared by Matti Vann & I with the Hemophilia Foundation of Southern California's Board & Executive Director, who have agreed to meet with all participating community members in a Town Hall Follow-Up meeting later this year to discuss these issues.

A few weeks ago, some miscommunication about this first meeting resulted in my emailing the HFSC Executive Director and a couple of Board members to help clarify the misunderstanding. In the interest of transparency and simplicity, I am sharing that email below, as it covers - in detail - the genesis of this meeting, the goals, and recaps the steps forward.

There is, however, one significant change. The email - as originally sent as copied below - at one point reads: "This meeting will not be open to community members who work for specialty pharmacies, homecare companies, manufacturers, or other "industry," nor will it be open to the board or staff of HFSC." After conversation and consideration, I have changed my mind on this - all people affected-by or related-to someone affected-by a bleeding disorder are welcome to attend this meeting and have their voice heard. MY ONE REQUEST for those who wear "multiple hats," is to come as a community member and a community member only. It's against the spirit of this gathering to represent any interest other than community members speaking in a trusted environment with the express goal of unifying.

I'd encourage anyone who'd care to share something with my regarding this to email me directly: patrick@believedigi.com

I hope to see many of you next Saturday. It will be a long meeting and perhaps a difficult one at times, but it's opportunities like this that are agents for change if approached with a positive, solutions-driven attitude. Let's give ourselves the best chance we can to become an even stronger and more unified community.

Health & happiness,

Patrick

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Dr. Metz, Linda, and Michelle,

I hope this finds you all well.  Thank you for inviting me to the board meeting held this past week.  I would have loved to attend, but unfortunately was committed by the time the invitation came my way.

Ryan - my producing & programming partner at Believe Digi - spoke to Barbara Chang this week about, Michelle - your experience at Powering Through.  You and I got to quickly share a few words during Patrick Droney's performance before my obligations pulled me away, but I understand that following our interaction you saw the flyer about the Town Hall Meeting and were quite upset about it.  I've also heard rumblings about a potential complaint being issued from HFSC to CHLA for donating a room to me so that I can moderate this meeting following their Family Day next month, and I'm afraid there's a communication breakdown or misunderstanding that's formed. I'd like to nip it before it spirals, so in the interest of getting us on the same page - and I would encourage you all to share this information with the entire board/staff - I'll recap how this meeting came into fruition.  Please forgive the length of this email, but given the importance of the subject matter and the misunderstanding that I'm afraid is emerging, I believe it's imperative to be exhaustively thorough.

 

Invitation to the ICC Lunch

A little over two months ago, Matti Vann (hemo mom, relatively new to the community) and I were invited to attend the ICC lunch w/ Dr. Metz & Linda.  I was told the meeting was designed to give feedback to the chapter on ways in which it may be able to better serve its members.  It was framed as a very positive meeting.  Then-President of the ICC Bernard Glynn asked if I would be willing to speak about my experience with the chapter, as the ICC wanted community members to have a chance to give feedback directly.  I informed Bernard that I was relatively new to LA and had had minimal interaction with that chapter, but that the interaction I did have was on the whole disappointing  I outlined a version of what I would say - a recap of my experiences with HFSC to date - and sent it to him.  I was told that my feedback was not to be ignored simply because I was relatively new to the SoCal community, and we agreed that I would share.

Linda & Dr. Metz both heard my critical remarks, as well as Matti's critical remarks.  I deeply appreciated how sincere you were, Dr. Metz, when you approached Matti and I to convey your sympathies for the unfortunate experiences we recounted.  You mentioned feeling "deeply troubled" by the remarks, and while I never wish anyone to feel this way, given what was expressed, your response was appropriate and appreciated.

Town Hall Proposal

At one point during the ICC lunch, Robert Friedman suggested a town hall meeting where families could speak openly about their experiences with the chapter. Dr. Metz, if my recollection and the meeting minutes are accurate, I believe you acknowledged a similar town hall meeting being held during your time at NHF that amounted to some real positive changes. Matti, however, expressed that she is connected with families who would not feel comfortable speaking openly or even attending such a meeting if individuals from the chapter were there.  According to Matti, there is fear amongst some of these families that if they speak out, they will become targets of some sort.

Given all this information, and with only an interest in uniting the Southern California community in mind, I proposed the following plan of action:

1)  Matti Vann & I will co-host a Town Hall Meeting for families who have complaints and grievances with the chapter to give them a safe environment in which to have their raw, honest voice heard.  This meeting will be scheduled in Q1 of 2015.  This meeting will not be open to community members who work for specialty pharmacies, homecare companies, manufacturers, or other "industry," nor will it be open to the board or staff of HFSC.

To be crystal clear, this is not how I like to run events.  Those who attended Powering Through last Saturday heard my opening remarks in which I made it absolutely clear that events that I produce are open to everyone in the community - regardless of professional affiliations - so long as everyone who attends behaves appropriately and attends in the interest of community. (These remarks, I should add, were met with rousing applause).  This particular meeting is a glaring exception based on the feedback from Matti that the voices who most need to be heard - those whose feelings about HFSC could be categorized as extreme - would not attend if it were open to all.  That being said, this is not the end point...

2)  Once everyone who attends this Town Hall meeting has had said their piece, I will then organize the feedback into a solutions-driven, actionable list to present to the HFSC Board & Executive Director. I will also make myself available for specific question about how the Town Hall Meeting went.

3)  Having had a chance to review the list from the Town Hall Meeting, Dr. Metz & members of the board and staff will then meet with the community members from the initial meeting at a Town Hall Follow-Up.  Matti and I will again be present to moderate a productive, solutions-driven conversation between the chapter and the unsatisfied community members.

Objective

The goal of this structure is to give the community members who feel most isolated, ignored, or disrespected - whether rightfully or not - an opportunity to air out their feelings in a safe, constructive environment, then, to collect all the actionable takeaways, present them to the chapter for review and consideration, before all of us join together to discuss how, as Clem stated at the lunch, we can make HFSC the best chapter in the country again.

I think this structure gives an incredible opportunity to ensure that the southern California hemophilia community is united & thriving!  That's the only goal I have in all this.  Believe me when I say that I would really rather not have to put the time into managing this initiative.  I take no pride in it.  I take pride in our community remaining informed, connected, and empowered.  I take pride in belonging to the strongest and most united chapter in the country, and I take pride in setting the example for other orphan disease populations on how to best build and advocate on a local level.  I do not seek to admonish, provoke, or reduce anyone's character or accomplishments.  I know HFSC works hard to serve this community, but I also know that there are an unfortunate number of people in Southern California that have serious issues with HFSC.  To me, that's unacceptable, and I intend to guide this process in such a way that it gives us an opportunity to rectify, reunite, and thrive as one.

Agreement

Dr. Metz - I proposed the above structure to you at the end of the ICC meeting, seeking primarily your willingness to meet with the community members at the Town Hall Follow-Up - as it's the single most important part of this process - and you agreed.  

Linda - I mentioned this structure and Dr. Metz's willingness to you at the end of the ICC meeting, and we've since gone back and forth in emails about the progress.  I hope we can continue to keep an open line of communication about this.

Michelle - I apologize that you've been in the dark and took exception to the flyer at Powering Through.  I am sorry it offended you.  It was designed to get the word out to the most disgruntled and hard-to-reach members of our community that there's somewhere they can go to discuss their issues.  I know you arrived late, but in my opening remarks, I specifically addressed the Town Hall Meeting and flyer, framing it as an opportunity for solutions-driven conversation.  For the benefit of Linda and Dr. Metz, I've attached the flyer here.  

As I've mentioned to Linda, I reached out to CHLA to see if they'd be willing to donate some space during their Family Day next month for us to hold this Town Hall Meeting.  I did this because it makes it easier on families who were already planning to attend CHLA's Family Day, and I don't want to unnecessarily burden anyone's schedule.  CHLA had asked me if I would take on some responsibilities during Family Day, and I said yes, if they would be willing to donate a room for our Town Hall Meeting so that we could help strengthen our local chapter.  CHLA was willing so long as I made it clear that they are not a participant nor sponsor nor champion of this event, which is reflected in the attached flyer, and will continue to be made apparent as we get the word out.

Next Steps

Over the course of the next 5-6 weeks, Matti and I will be getting the word out about the Town Hall Meeting, and I sincerely hope we have a tremendous turnout.  I expect there will be a wide-range of feelings, comments, and accusations.  Matti and I are prepared to navigate what I imagine will be a lively conversation, and focus all the participants on the objective: community-building, which means focusing on how any one complaint/grievance/problem can be channeled toward creating a stronger path forward.  I appreciate the confidence Dr. Metz & Linda have implicitly shown in me by agreeing to receive the feedback from the first meeting and agreeing to meet with the community at the Follow-Up.  I hope there is a great attendance from the board at the Follow-Up, and in the weeks to come, we will discuss a date that works best.

Conclusion

I hope this email clarifies the intentions of what Matti and I are doing.  I can't state enough my sincere desire to help build up our community and my lack of interest in drumming up negative feelings for an unguided purpose.  This is a tremendous opportunity for us - as a community, as a chapter - and I believe if we handle this process with an open-mind and grace, unity will soon follow.

Please share this with the board members and staff for whom I do not have contact information.  Please do not hesitate to reach out to me with questions as I believe this is a priority.  I will be attending the event on February 7th - I hope to see some of you there - and I'm also happy to arrange a time to speak more specifically about any of this should any of you or the other board/staff members desire it.

Here's to continuing to build the strongest chapter imaginable!

Health & happiness,

Patrick

HANY names art scholarship after Adam Lynch.

On June 23rd, my theatre company Believe Theatrical hosted the 2nd annual fundraiser for the Hemophilia Association of New York (HANY)'s Patient Services fund.  As principal producer of this event, I decided to bite off a considerable amount this year by selecting acclaimed playwright John Cariani's Love/Sick to be the subject of our staged reading and doing the piece with a cast of 20! (Click here to read an article on how the evening came to be!)

Casting and coordinating with a group that size (not to mention the fantastic director Jim Fagan) is difficult enough, but when you have such busy, talented artists such as Tony-nominee Elizabeth A. Davis, RENT and If/Then The Musical's Anthony Rapp, "The Following's" Sam Underwood & Valorie Curry, and Rocky on Broadway's Jennifer Mudge, schedules are all the trickier to align. (Click here to see Playbill.com's Press Release about the event!)

But somehow, some way, we did it! Click the image below to see a few pics from the night (and if you like those, click here to see our photo gallery!)

As if hearing a staged performance of a fantastic play, with an other-worldly cast, orchestrated by an outstanding director, in front of a 120 vociferous audience members isn't reason enough to celebrate, HANY's Executive Director Linda Mugford capped the night off by making a beautiful announcement. 

HANY will be using a portion of the proceeds from Monday night to setup a scholarship fund benefitting teens affected by hemophilia who wish to pursue creative or media arts in higher education, and the scholarship will be named after my late brother Adam Lynch - himself, a writer.

It was an emotional announcement, and though Linda mentioned something about it to be a couple of days prior, I found myself immediately moved to tears. Fortunately for this new scholarship and its future recipients, is also moved many of our audience (and cast!) immediately to the donation box.

My family and I are honored that HANY is remembering Adam in this beautiful way. I look forward to working with Linda on the details of the scholarship, and the plan to grow the fund year-after-year.

To learn more about the Hemophilia Association of New York or to make a donation to HANY, you can click here to visit their website.  I'll be sharing more information about the scholarship as it become available.

A huge thank you to everyone who helped make Monday night special - from the staff at Playwrights' Horizons, my producing partners at Believe Theatrical, the staff of HANY, our generous volunteers, our wonderful audience, our fantastic cast, our superb director and playwright, and our active bleeding disorders community.  I already can't wait for next year!

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Living in spite...

occasionally I'm grounded by the incredible reality that Mother Nature wants me dead.

and no, not "wants me dead" in the way I referred to in my previous blog.

had I been born 20 years prior, w severe hemo and an inhibitor, I'd be dead by now.

had I been born 3-4 years prior to when I was, I'd probably have HIV and/or HEP C, or have been killed by it. 

had I been born in the vast majority of the world, without access to life-sustaining meds, I'd be dead by now.

a friend just posted something on Facebook about a 30-something year-old-friend who's medical condition finally got the best of her.  I guess that's what got my thinkng.

another, distant, friend has been battling with some very serious cancer this past year. and I watch everything he's doing to make whatever time he has left on this planet, be it 5 days or 50 years, valuable.

and I suppose that's the point. death is the one inevitability for  us all, regardless of race, gender, religion, political association, etc. even grave medical diagnoses simply give you a heads up that something you weren't gonna probably have to face for a minute but we're gonna have to face eventually may be coming sooner than hoped. but it doesn't "add" any new information about life.

sometimes, I take great pride feeling as though I'm living (and THRIVING!) in spite of what Mother Nature, Darwin, and perhaps what some insurance providers may prefer. :P

there's an energy to that! I spit in the face of that which would prefer me to slow down, to feel bad for myself, to dwell on the Major Arcana - or that which I cannot control. serenity now. there's plenty I can, and do, control. my spirited energy is better suited for that then any wallowing or feeling lesser-than.

strive to be great. Not good. Great. accept good as a momentarily-satisfying step along the path to something better. And any time something steps in the way - medical setbacks, financial hardships, whatever - recognize immediately that you just gained more information about how your inevitable path to greatness is going to look. These are not called obstacles. These are informative and, if you allow then to be, entertaining challenges. 

live, and thrive, in spite of all.

 

Hemophiliacs: Kaiser Permanente Will Let You Die.

Original Post: Friday, June 6th, 2014.

To my friends, family, bleeding disorders community, contacts, etc...

The following is my open letter to Kaiser Permanente.  I've written this because their treatment of me as a person with a severe bleeding disorder has left me sincerely questioning if they are quietly hoping I'll just die.  Yes, it's been that bad.

If you read my account below and find it as disgusting as I do, please share this post with anyone affected by a bleeding disorder - patient, parent, community leader, etc. - or any contact you have in news media.  I am incredibly available for interviews or follow-up questions with anyone who can shine light on this repulsive company's treatment of patients like me.

Feel free to take action yourself by tweeting Kaiser Permanente CEO Bernard Tyson, asking him why he allows his business to categorize hemophiliacs as expendable: https://twitter.com/bernardjtyson.

Dear Person at Kaiser Permanente,

My name is Patrick James Lynch (Medical Record Number 002113XXXX).  I'm a severe hemophiliac, and I'm writing this open letter to publicly inform you of my horrendous & unacceptable experience with your company.

A little backstory on my life with hemophilia.

I was born on November 30th, 1985. I have had severe hemophilia A since November 30th, 1985.  I've been professionally treated for severe hemophilia since I was diagnosed in 1986 and in 1998, the inhibitor that significantly compromised my health since birth was finally quelled to nearly immeasurable levels, permitting me to undergo a cutting-edge, experimental treatment called a nuclear isotopic synovectomy in both of my target bleeding joints. 

The procedures were a smashing success, and ever since, with mild adjustments, I've been on the same prophylactic regimen, administering recombinant antihemophilic factor three-to-four times per week, for the past 16 years.

My brother died from complications due to severe hemophilia in 2007 at the age of 18. Since then, I’ve dedicated the majority of my time to engaging and educating young people with hemophilia on the importance of self-care and compliance to a prophylactic regimen.  I’ve advocated on both state and national levels.  I’ve attended and produced live events for the community in California and around the country.  I am on a first-name basis with every community leader and influencer.

Suffice to say, I'm something of a veteran when it comes to treatment for severe hemophilia, with a particular expertise on my treatment for severe hemophilia.  

Hence, it is my expert opinion that Kaiser Permanente's consistent negligence, deception, deflection, irresponsibility and overall comprehensive mismanagement in treating me as a new patient with a chronic life-threatening disorder can only be as a result of one simple reality: Kaiser Permanente doesn't care if I die.

Or, sorry, I mean if Medical Record Number 002113XXXX dies.

That's a pretty heavy thought, so I’ll repeat myself - I’ve certainly done that plenty since I enlisted to be covered by Kaiser Permanente:  

Your company’s inexcusably incompetent employees won't listen to me.  Apparently they won't even listen to each other.  No one cares that 80% of people in the world that have what I have are dead by my age because they don’t have access to medicine.  You don’t care about my medical history prior to entering your magical system.  You've been forcing a predatory and unnecessarily laborious protocol on me despite never actually getting me the one thing I need, Advate.  In short, I repeat, you don’t care if this hemophiliac dies.

What a claim, right?  Keep reading.

Attached to the bottom of this letter is a FULL account of my interactions with Kaiser to date.  Here, however, is a summary of my experience as a severe hemophiliac with Kaiser Permanente's “award-winning” service:

- After five weeks and two payments I finally am allowed to enroll in care and schedule an appointment.  During this inexplicable no-contact window, I am not able to order Advate, and my supply is dwindling.  I am also not allowed to order life-saving Advate because a Kaiser doctor must be the one to prescribe it, despite having been prescribed Advate for over ten years, and despite a lapse in Advate being fatal.  My script from my previous hematologist - though still up to date - will not be accepted.

- Multiple calls to Member Services.  Disconnected repeatedly.  No call backs. No answers as to how and when I'll be able to see a doctor and get a new script.

- I'm alerted by form letter that Kaiser pharmacists are striking. I call Member Services and learn that essentially, there is no backup plan. I have a prescription from my previous hematologist that Kaiser pharmacies refuse to fill, and because I'm on a Kaiser plan, I cannot take it outside the plan. Member Services cannot tell me where I will get Advate if the pharmacies strike.

- Finally allowed to set up an appointment, (7 weeks in) I teach my Kaiser doctor (Dr 1) about hemophilia.  He refuses to prescribe Advate because he's not familiar with it.  There are maybe ten factor VIII (Hemophilia A) drugs in existence.  Advate is manufactured by Baxter.  There are less than five drug companies the size of Baxter. Baxter/Advate have an exclusive agreement with Kaiser.  Advate is literally the only drug Kaiser is allowed to prescribe for hemophilia, yet Dr 1 refuses to prescribe it because he's not familiar with it.

- Multiple calls to Member Services. Disconnected repeatedly. No call backs. No answers.

- I attempt to pick up a "hold-over" prescription of Advate that Dr 1 begrudgingly prescribes, 1 week's worth.  I arrive at the pharmacy, and they say it will be there in five days. I arrive five days later, there is no Advate. There is no record of Advate being ordered.  There is no solution available to me but to get an appointment with Dr 2, and get a new official script.

- Multiple calls to member services. Disconnected repeatedly. No call backs. No answers.

- I teach a second Kaiser doctor about hemophilia, this one is allegedly the expert hematologist.  He refuses to allow me to have Advate delivered, but I can pick it up at the pharmacy in five days.  The pharmacy loses the Advate again.  Both visits to the pharmacy, now, include being forced to explain Advate to someone who does not speak English.  When dealing with incompetence regarding the handling of my life-saving medicine twice, and the black hole that is "Member Services," it would be nice to be able to communicate with the pharmacist directly.

- Dr 2's pharmacy calls to say that while they have Advate ready for me, my policy expired on March 31, 2014 and therefore I cannot pickup my Advate.  My policy officially started April 1, 2014, the day after Kaiser's system is telling the pharmacist my membership ended. 

- I discover that of course, my policy is fine and in good standing- Kaiser certainly has no problem collecting and depositing my checks- and I attempt again to get Advate ordered.  I am awarded the elusive "hold-over" batch presrcibed by Dr 1 weeks ago, however, it is 12 boxes, and each box contains different units, ranging from ~388 to ~1500.  It was clearly cobbled together at the last minute. It is not useless, but close. 

To summarize, to date: nine (9) weeks, over 50 phone calls, over 400 minutes on hold, two doctors appointments - one with a "hemophilia-expert hematologist" - during which I had to teach hemophilia, zero properly-prescribed Advate, false claims about my membership status, the Kaiser pharmacy "losing" my medicine order twice, outright lies about why Kaiser refuses to deliver, and still no end in sight. However, Kaiser has successfully collected and deposited my checks and collected my co-pays, three months in a row.

Please note, this is a significantly abbreviated recap. For a full accounting of this ongoing nightmare- including photos, quotes from phone calls, interactions with pharmacists and customer service reps, and interactions with my doctors, please see the bottom of this letter. 

I am fortunate: I am educated, articulate, outspoken, single and work from home.  I have had the time to fight through the life-threatening stupidity and negligence that Kaiser Permanente seemingly wears on its sleeve.  

This is not true of most people with my condition. Hemophiliacs often struggle to be able to afford both their treatment and the secondary challenges that come with this condition.  I shudder to think what your horrific service would mean for most hemophiliacs; the utterly unnecessary bleeding episodes that occur due to lack of access to medicine, the misdiagnoses that occur due to lack of understanding what hemophilia [heem-o-FILL-ee-ah) actually is, etc.

Your company is disgusting.  You don’t care if I die, and you won’t care if any of my blood brothers or sisters die either.  Next week, I will be ending my relationship with your company and transitioning to a health-care provider that shows even the mild interest in treating my life-threatening condition with the attention and accountability I deserve.

Further, I will be urging every person living with hemophilia currently being treated by Kaiser Permanente to leave your unprofessional and despicable company as quickly as possible, and I vow to provide assistance to anyone who would like to do so.

Be aware, this open letter will be sent to every bleeding disorders organization in California, my local Congressman’s office, representatives at Baxter, and every news outlet in Southern California.  It is my responsibility, on behalf of my fellow community members, to ensure that our community understands the woeful negligent and willing deceit I experienced under the care of Kaiser Permanente.  Hopefully, this will lead to discussion on reforming the systemized treatment of people with rare chronic disease such as hemophilia.

I welcome anyone from Kaiser Permanente to contact me if he or she can offer any insight as to why Kaiser Permanente would allow me to die on their watch.

Health & happiness,

Patrick James Lynch (patrick@believedigi.com)

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Addendum: The Full Account of My Interactions With Kaiser Permanente

Sometime in March.

A hemophilia-knowledgeable Navigator assists me in choosing an ACA insurance plan that best suits my medical needs.  I emphasize two points: 1) I need Advate on the formulary and 2) I can’t be on any plan that requires the patient to pay a percentage deductible for pharmaceuticals.  I’m directed to and enroll with Kaiser Permanente.

Tuesday, March 25th, 2014

My first payment of $364.56 is processed by Kaiser Permanente. I’m officially under their care. I call Member Services to confirm that they carry Advate as well as what my total patient responsibility is.  I make this call two or three more times over the next five weeks, emphasizing each time that I’ve been taking Advate three or four times per week for over ten years in order to stay alive. I explain that a lapse in my regimen is life-threatening.

Fruitlessly, I argue the needlessness for me to see a Kaiser Permanente approved Primary Care Physician to get a Kaiser Permanente referral to a hemophilia-expert hematologist to get a Kaiser Permanente prescription for the medicine I've been taking for over a decade, the same medicine my NYC hematologist just wrote me a new script for that month which I can easily get faxed to Kaiser Permanente.

PHONE REP:  I’m sorry sir, you’ll need to get the prescription from us and it can only be written by the referred hematologist.

I secure an appointment with a PCP for May 19th.  While that’s far from ideal, I have enough Advate to get me by until then.  Time to play the game.

Tuesday, May 13th 2014.

While on an intense work trip, I receive an e-mail from Kaiser Permanente:

Your care is our top priority

Dear member,

Our pharmacies in Southern California may be closed starting May 19th, 2014...We have plans set in place to help ensure you can get your prescriptions...If you have a prescription you need to fill or refill, we encourage you to do so before May 19th...Rest assured that we will contact you with updates as we get more information.

Excellent. Not yet six weeks into my plan and there’s a threat that the pharmacies, the one service I need in order to stay alive, may close.  I call and learn nothing. The rep has no information for me.  I inform the rep that I still have an active prescription with refills from New York.  

ME: In the event that your pharmacies close, can I use this?

REP:  No sir, we only process prescriptions written by our doctors.

ME:  But you understand the glaring problem that we may be facing, right?

REP:  Yes sir, there is a plan in place should the pharmacies close.

ME:  What is this plan?

REP:  The details of this plan haven’t been shared with me, sir.

I’m told to await updates, so I do.

Friday, May 16 2014.

No updates yet.  Monday, the pharmacies may close.  I call.  There is still no information.

ME:  You have no updates on the status of your pharmacies for Monday?

REP:  That’s correct, sir.

ME:  Okay, well the last e-mail said there were “plans set in place to help ensure you can get your prescriptions.”  What are these plans?

REP:  To be completely honest with you sir, I really don’t know.

ME:  You don’t know what you’re doing on Monday if your pharmacies close?

REP:  I don’t want to lie to you, I really don’t know.

He goes on to state that I should keep my PCP visit as planned, seeing as I need to see him first anyway before getting any prescription.

Monday, May 19th, 2014.

E-mail from Kaiser Permanente - All pharmacies are open.  Bullet averted, this time. Now to visit my new PCP.

I explain to my young doctor that we don't need to discuss my exercise routine or my pain on a scale from super-sad-crying-face to whoa-what-are-you-on?-happy-face, but that I simply need access to Advate, the specialty drug I’ve been on for a decade that keeps me alive, the speciality drug that’s the only reason I’m on Kaiser Permanente, the drug I am now down to a two-week supply of on the morning a work stoppage nearly shut down the pharmacies.

ME:  I’m a new resident, my health insurance just switched over, and I’m getting to the end of my supply from the previous order.

DR:   About how much do you have left?

ME:  Two weeks worth.

He says he’s not comfortable prescribing Advate because he isn’t familiar with it.  I quietly celebrate the utility of this wonderful visit, then ask when the next available appointment was to see the hemophilia-expert hematologist.  I’m told it’s in nine days and that the hematologist can write me the script for Advate, which will then be ready about two weeks later.

Despite not having attended medical school or getting a top-notch job with a big company like Kaiser Permanente, I’m pretty swift on rudimentary addition and two weeks plus nine days is more than two weeks.

DR:  Okay, yes, I see your point.

He expresses a willingness to write me a “hold-over” prescription to “get by” until I can see the hematologist.  He writes me a script for a one week supply, and instructs me to head down to another floor for blood work before heading to their pharmacy to get my “hold-over” Advate.

ME:  I just had comprehensive blood work done at a Hemophilia Treatment Center in New York two months ago. Why can't I just have those results sent to you guys?

DR:  It [The blood work] wasn't done by us.

I pay his $20 co-pay, then head down to the 4th floor. I pay their $20 co-pay. Thirty minutes later, my blood work is done.

Finally, as instructed, I go down to the pharmacy and check-in.  A pharmacist - or at least someone walking around in a lab coat - instructs me to wait 30-45 minutes then get onto the pick-up line.  I scope the size of the pick-up line, determine that I don’t have the requisite 75 minutes to add to today’s medical adventure, confirm the pharmacy will hold the Advate for five days, and exit.

Thursday, May 22nd, 2014

I receive an email.  My blood work results have processed.  I have hemophilia.  Guess that blood work really paid off.

Friday, May 23rd, 2014

I return to the pharmacy.  I check-in.  A different pharmacist searches for the Advate for about 6-7 minutes before informing me that they don’t have any.

ME:  I was here Monday.  I checked-in.  I was told I would have five days to pick-up my medicine.

PHARMACIST:  I’m sorry sir, we don’t have any. Would you like us to order some for you to pick-up when it arrives?

ME:  What happened to the stuff from Monday? What was I going to be handed Monday if I waited around.

PHARMACIST:  I don’t know sir, we don’t have any.

I’m told they’ll place the order and it should be there within five days.  We never solve the mystery of what happened to the product that was ready for me to pick-up Monday.

Monday, May 26th, 2014

No word from the pharmacy.

Tuesday, May 27th, 2014

No word from the pharmacy.

Wednesday, May 28th, 2014

The day of my appointment with the hemophilia-expert hematologist.

I take the hematologist through my entire hemophilia history, and educate him on topics such as microbleeding, isotopic synovectomies, and structuring prophylactic regimens.  I tell him the name of one of my former hematologists, which turns him into a doting school girl as he excitedly exclaims, “She’s famous!”  Apparently in Hollywood, even the doctors crave fame.

He examines me, which I’m used to, even if this is the fourth doctor to do a routine exam in three months.  Then he asks me to lower my shorts so he can inspect my testiciles.  The room suddenly got a little weird.  None of my three previous hematologist ever asked to do this in 28 years.  Nevertheless, I allow it, uncomfortable though it is.

Doctor Famous writes me a script for Advate.  I tell him I’ve had it delivered for 28 years and especially given my travel schedule, would really appreciate continuing to receive deliveries rather than having to come down to the pharmacy on a monthly basis.  I’m told this is impossible, that it must be picked up.  This time, however, I’m not to go to the pharmacy right away.  They need to order it.  It should be in within five days, and I’ll get a phone call to come pick it up. Fine.

Wednesday, May 28th, 2014

The original pharmacy calls - my “hold-over” is ready to be picked up.  The fella on the phone gives me his name, and says to ask for him.  If he’s not there and the pharmacist can’t find it, he tells me to instruct the pharmacist that my Advate is in the fridge in the back.

Thursday, May 29th, 2014.

An urgent matter takes priority over the pharmacy visit and a 3:20pm flight takes me out of LA for a few days.

Friday, May 30th, 2014.

After going through the endless maze that is Kaiser Permanente’s no-direct-numbers phone system, I eventually reach the original pharmacy.  I ask for my for contact.  Contact’s not there. The lady speaking broken-English tells me to call back Monday.  I tell her about the Advate.  She looks for it.  She can’t find it.  I parrot my Contact’s instructions.  Without re-checking, she restates that it’s not there, and again tells me to call back Monday.  I start to ask about the ability to authorize a third party to pick-up my meds, but she insists on continually interrupting me in order to promote calling back Monday. So bring the hammer down on what’s at stake:

ME:  Miss, you need to stop interrupting me and listen to what I’m telling you.  I die without this medicine in my bloodstream. Your system is making this extremely difficult and you’re inability to listen to the patient is causing great aggravation.  Now, remain quiet and listen to my question: Can I authorize a third-party to show up with a photo ID and pick-up medicine on my behalf?

She says yes, but that it’s not preferred - whatever “preferred” means - but reiterates that the medicine is not there and my best bet is to call back Monday.  More ineptitude, more time lost…

Sunday, June 1, 2014.

I’m in New York for the 2014 New York City Hemophilia Chapter Annual Walk.  Friends throughout the community ask me questions about living in California.  When I share that I’m with Kaiser Permanente, I’m met with a chorus of, “Be careful’s.” and “Stay on top of them’s.”

Monday, June 2, 2014.

A packed work day doesn’t permit the 30-minute minimum needed to reach the pharmacy and go back to the Easter Egg Hunt.

Tuesday, June 3rd, 2014.

Once again, I call the one phone number available for the 14 Kaiser Permanente Locations in Southern California.  Once again, I listen to the endless menu options. Eventually, I reach Mr. Contact in the pharmacy and tell him about Friday’s conversation.

MR. CONTACT:  That’s wrong, the Advate is here.

ME:  I believe you but she denied it, didn’t bother re-checking, and insisted insisted insisted I call back.

I tell Mr. Contact I fly back to LA on Wednesday and will pick up the medicine Thursday.  He tells me to ask for him.  Again, I ask if the medicine can be shipped.  Mr. Contact tells me it can’t be because it needs to be refrigerated at all times in order to work properly.  I gently inform Mr. Contact that while not shipping it may be Kaiser Permanente's policy, his explanation is entirely made up as I - like most severe hemos - have been getting factor shipped to me my entire life to avoid the very situation we were now in.  Mr. Contact sheepishly changes the topic.

No less than 10 minutes later, I receive a call from another Kaiser Permanente, the one that’s filling the order Dr. Famous wrote for me.  Pharmacy # 2 Lady and I enjoy the following back-and-forth:

LADY:  We have your Advate, it’s ready to be picked up, but our system shows that your policy expired March 31st, so you’ll need to contact Member Services before we can allow you to pick it up.

ME:  Wait wait wait wait wait - That’s impossible.

LADY:  That’s what the system says sir - you need to call Member Services.

ME:  No I don’t because you’re wrong - my policy didn’t even take effect until April 1st so that’s wrong - all I’ve done is see doctors and take tests and make phone calls to you-

LADY:  Sir, I can’t assist you with this you need to call Member Services.

ME:  The ONLY thing I NEED from your company is this drug - this drug keeps me alive - now you tell me you have it for me but won’t give it to me because of information that is wrong which you can’t even help me with but need me to speak to someone else about - is that the reality we’re dealing with here?

LADY:  I’m trying to help you sir.

ME:  And how would you say that’s going?  Do you feel like you’re helping me?

LADY:  I can transfer you to Member Services.

ME:  Then what’s your direct number in the pharmacy so I can call you right back?

LADY:  There’s no direct number sir, the operator can transfer you.

ME:  Which is also a lie - but you like everyone else in your company tows the line of no responsibility, no efficiency in your systems, no accountability - you’re all just so happy to defer defer defer. None of you care that my life is at stake.  None of you care that I may die!

LADY:  Would you like me to transfer you to Member Service?

ME:  Go ahead.

The phone rings no less than 25 times, then a clicking sound, then immediately:

UNINTELLIGIBLE PERSON: [something rushed, followed by-]...medical record number.

ME:  What??

UNINTELLIGIBLE PERSON: [Something in broken English, then-] ...I have your medical record number?

ME:  No, I don’t know where I am - is this Member Services?

UNINTELLIGIBLE PERSON: This is operator.

ME:  I don’t want you I need the number to Member Services.

UNINTELLIGIBLE PERSON:  There is no number, I can transfer you.

ME:  Of course.

The phone rings for 1 minute...2 minutes...3 minutes...4 minutes...5 minutes and 16 seconds before “Click.”  I’m disconnected.

Let’s recap this days awesome series of events:

Awesome Event # 1: Contact at Pharma 1 informs me that person on Friday was wrong.

Awesome Event # 2: Contact at Pharma 1 lies to me about why KP won’t ship Advate.

Awesome Event # 3: Lady at Pharma 2 says my Advate is “ready to be picked up” but that my membership expired on a date prior to when I started with KP.

Awesome Event # 4: Lady at Pharma 2 refuses to give me direct numbers and transfers me somewhere.

Awesome Event # 5: The phone rings 25+ times.

Awesome Event # 6: Inaudible Lady repeats “Medical Record Number” in broken English without identifying herself or asking me my name.

Awesome Event # 7: Inaudible Lady transfers me to Member Service, but after over five minutes of ringing, the line disconnects.

Awesome Event # 8: Two weeks and one day after I first saw the PCP and emphasized my need for Advate and how that drug was the sole reason I even came on service with Kaiser Permanente, nothing has been done.  I’ve seen two doctors, gotten blood work, gotten referrals for physical therapy, paid $60 in co-pays, spent over a dozen hours on the phone - all for naught.

At this point, I opted to spend the remainder of my evening enjoying the limited time I had with my mother.  I was flying back to LA the next day and would take care of everything when I got back.

Wednesday, June 4th, 2014.

Two weeks and two days since PCP visit stressing the need for Advate within two weeks.

I travel back to Los Angeles. Return home.  Excitedly pet my dog, who has never lied to me about medicine.

Thursday, June 5th, 2014.

Two weeks and three days since PCP visit stressing the need for Advate within two weeks.

I enter the Kaiser Permanente phone system maze.  Eventually, I’m connected to a lady in Member Services who we’ll call Barbara.  I slowly, thoughtfully, with controlled-emotion explain the whole story to Barbara, emphasizing that I was told my account expired 2 months ago.

BARBARA:  That’s incorrect, your account is active. Who told you this?

ME:  I don’t know Barbara someone from the pharmacy, I’ve spoken to so many people with such a wide-array of English-language skills-

BARBARA:  I’m not sure how to help you, your account is active, do you need-

ME:  Then why was I told something different two days ago?  Why do no two people at your company tell the same story?  Why am I being barred from my medicine?

BARBARA:  Sir, I’m only doing my job and trying to help you.

ME:  Then help me get this medicine in my body that I need to sustain life or put my in touch with someone at your company that has decision-making power because at this point my most logical next step is to seek legal action since your company seems all too happy to throw their hands in the air and let me die.

Barbara then puts me on hold.  She's going to call the pharmacy.  Barbara checks in with me periodically to tell me she’s still on hold.  During one check-in, we have the following exchange.

BARBARA:  They’re telling me that they don’t have Advate. They can put in an order for it.

ME:  What order?  What do they mean they don’t have it?  This is the second time there’s these mysterious disappearances of it.  What happened to the Advate I was told was “ready to be picked up” on Tuesday?

BARBARA:  Your Advate has not been ordered sir.

ME:  So the person on Tuesday lied to me about my account status AND about my order status, that’s what your telling me?  This was just some lie-spitting employee running around the pharmacy making phone calls?

BARBARA:  Sir, I’m just doing my job.

ME:  I know, you’re like everyone else - not accountable, not able to help, just doing your job. Everyone’s so quick to soullessly affirm that they’re just doing their job, well MY LIFE IS ON THE LINE. DO YOU UNDERSTAND? I LOST MY BROTHER TO THIS DISORDER AND I’M NOT GOING TO DIE FROM IT NO MATTER HOW HARD YOUR COMPANY MAY BE TRYING TO KILL ME OFF, SO FIGURE OUT WHAT NEEDS TO HAPPEN BECAUSE I’M COMING DOWN THERE TO PICK UP MY MEDICINE BY THE END OF THE DAY.

BARBARA:  Coming down where sir?

ME:  To the pharmacy, I’m showing up and demanding my medicine so I don’t die.

BARBARA:  They don’t have any right now sir.

ME:  Well then they’re about to have a major problem on their hands.

Barbara returns to the now 45-minute long hold she and I are on.  Finally, she connects me to some superior at the Pharmacy.  This person will be my salvation.  We’ll name her Jane.

JANE:  Mr. Lynch, I’m so sorry to hear about-

ME:  Jane, I’m sure you are, and I know Barbara just explained everything to you. Allow me to reiterate: I die without this medicine.  I’ve probably spoken to nearly two dozen Kaiser Permanente employees since April 1st about my condition.  No one gives me a straight story.  No one has shown the slightest human interest in doing anything but sending me to another doctor or floor to pay another co-pay.  All I have vociferously asked for is my medicine, my life-saving medicine.  You’re barring me from it, so now answer me straight, where is my medicine?

JANE:  It wasn’t ordered sir.

ME:  Now how does that happen?  How is it that a drug this expensive, this important, isn’t IMMEDIATELY flagged for order when the prescription comes in?  How does your company screw this up for over two weeks, tell me.

JANE:  Sir, I know about Advate. We have many patients with [spelt as she pronounced it] “heem-file,” okay?  I understand.

ME:  For starters, you may want to learn the name of the disorder - “hemophilia.”  And frankly, the thought of you and your company servicing other people with hemophilia terrifies me.  I’m an educated, articulate, outspoken, single, freelance guy and this has been an absolute, life-threatening nightmare.  I can only imagine what an immigrant single-mother of 3 with a child who has hemophilia and an inhibitor - do you even know what that means? - I can only imagine her experience.  You know what happens to her?  She loses hours at work, putting her job and ability to provide for her family in jeopardy.  She begins stretching out whatever factor supply she has, trying to bridge the gap. This leaves her child vulnerable to become like 80% of people with hemophilia and inhibitors around the world who are dead before five-years-old.  This is what your company’s practices are allowing for, and this is terrifying, disgusting, and downright unacceptable.

JANE:  I’m so sorry-

Everyone's always so sorry during the crisis.  So sorry, and so inept.  Jane tells me that they’re going to get a one-week supply into the pharmacy before they close at 9pm, and that the rest of my month’s supply will be ordered and delivered to me by courier on Monday, a special exception for this one shipment.

Boy, this had me feeling all kinds of special.  Threaten to contact corporate executives, take legal action, and remind them twelve times that you’ll die and boom - you get a one time perk of home delivery!

Later that night, Friday, June 5th, 2014.

7:45pm - Phone call.  Advate is ready to be picked up.

8:15pm - I arrive at the pharmacy.  I tell the person behind the desk I'm there to pick-up Advate. A Frantic Pharmacist nods at me while repeating the word Advate far-too-many times, the way one may chew on a new word for a prolonged period so as to commit it to memory.  She scurries around for 10 minutes, preparing me a grab bag of Advate in three different denominations, including one unit size that’s nine times smaller than the smallest dose I take.

ME:  As you can see from my prescription, I either take 3000 or 6000 units per infusion, so denominations of 388 units aren’t really acceptable.

FRANTIC PHARMACIST:  Oh yes, too low. Too low.

ME:  Yeah, so, I’m assuming there’s no alternative for this evening, but I want to make it clear that when the shipment comes on Monday and when future refills are ordered, that I need higher unit products.

FRANTIC PHARMACIST: Ohhh, higher number. Higher number.

Depleted of any hope that my order will come on time and/or correctly on Monday and holding a colorful buffet of Advate products, I left.  It wasn’t until later that I realized another astonishing event took place: No one at the pharmacy asked me who I was.  

When I got there, I said “I’m here to pick up Advate.”  Then, 10 minutes later, I left with Advate.  I never gave my name, my Medical Record Number, my birthdate.  I never handed them a license, I never paid a co-pay, I never signed a form.  I was handed a bag and sent on my way.  While I appreciate convenience, for something that was kept from me like nuclear codes, this complete lack of screening or security is absurd.  IS THAT ALL I HAD TO DO THIS WHOLE TIME, JUST SHOW UP AND SAY ADVATE?  IS THAT THE PROTOCOL AFTER ALL?

So here I sit, Friday evening, June 6th, doubtful that I will ever feel safe and secure with this criminally negligent company, committed to assisting my blood brothers and sisters in leaving your service, and downright disgusted that your organization makes so much money off of the pain and suffering of so many whilst unable to muster a sliver of humanity in your treatment to the chronically-ill.

UPDATE: Saturday, June 7th, 2014

Thank you to everyone who's responded to my post. It's received over 1,500 unique reads since it went up last night. I will continue to push for attention on this, not just for my sake, but for our community's sake.

I appreciate all of the contacts to politicians, influencers, and media people. Keep'em coming. This will not get pushed under the rug.

I have a call with a Kaiser Permanente big wig this afternoon. I'll be posting updates as they become available. Keep sharing, keeping fighting.

UPDATE: Sunday, June 8th, 2014

I've been in direct contact with two directors and a pharmacy supervising manager. The directors have been very sympathetic and attentive, which I'm thankful for, though I continually repeat that it's taken my creating waves online to get adequate attention and that systematic reform of how frontline employees handle people with chronic rare disease, and examination of the pharmaceutical distribution of Advate is the only satisfying conclusion to this debacle.

I take a dose of 3000u 2x/week, and a dose of 6000u 1x/week. If you read my blog post, I mentioned one of Kaiser's pharmacies presenting me with a colorful, grab bag of unit sizes to satisfy a one-week supply. Yesterday, I received a 2nd grab bag delivered to my house including unit sizes in the 800-range and the 200-range. It says right on the Rx sticker - "250 (+/-) UNIT...Take 3000 units....6000 units..." Anyone have 22 syringes I could use for my 6000u stick? 

Thank you to those who've sent me their KP or insurance horror stories. These are good for me to know about so that I can reference other people's unacceptable experiences for the brief window that I have some decision-makers' attention.

UPDATE: Monday, June 9th, 2014

Yesterday I was told to expect a follow-up email from the Pharmacy Director of Kaiser Permanente Los Angeles. It didn't come. Had it, I would've explained the absurdity of receiving two separate one-week factor supplies with unit sizes as small at 261u. I did however receive an email from the Physician Director who setup an important meeting for me Tuesday.

Today, I'm expecting the remaining two weeks of my month one script. Having just had a 15-minute call with the head of the pharmacy, who I repeatedly asked to verify the size of the units that'll be coming today but to no avail, I believe the remaining half of this month's factor will indeed be delivered this evening. I have no idea what unit sizes and gave up trying to get clarity from her.

Earlier I spoke to someone at Baxter and have another call with a Baxter insurance specialist this afternoon. I've also had a number of friends from home-care and specialty pharmacies reach out to offer insight, assistance, and options. "Industry" can get a bad rap, but after this experience, I'm more thankful than ever that I have friends who works for these pharmacies that understand our condition and our lives.

Tomorrow, I have a phone call with the Medical Director of Kaiser Permanente Los Angeles. I look forward to discussing the protocol for treating new patients with chronic rare diseases and what I believe - based on my experience and the dozens of testimonials I've received over the past 72 hours - must must must change in order to adequately treat people with hemophilia and other rare diseases. I'm hopeful good will come of this.

Progress is slow, but it's forward.

UPDATE: Tuesday, June 10th, 2014

Update from call with Medical Director of Kaiser Permanente Los Angeles, Michael Tome.

Dr. Tome was very receptive. He owned Kaiser Permanente's miscommunication and overall incompetence (my word, not his) in the treating of me as a person with severe hemophilia. He was quite apologetic and saddened to hear my story.

I requested that he setup a meeting to include himself, the head of Hematology/Oncology at Kaiser Permanente Los Angeles, and a hemophilia advisory committee that I setup consisting of medical professionals, advocates, and community members to discuss the changes necessary to care for our community.  He agreed.  This week he's making internal contact with Kaiser people who should be at this meeting, and vowed to call me again on Friday afternoon.

The experience from April 1st (haha!) until June 8th was a nightmare, but if the result is a meeting like this, that then spurs on systematic reform to the frontline and specialty care of people with rare diseases - like hemophilia - then it's absolutely worth it. That would mean better care for generations of people with bleeding disorders, and could potentially set the precedent for reform within other companies throughout the US.  I don't plan to calm down until I'm satisfied that we're moving in that direction.

Again, I'm thankful to be a part of such a supportive, educated, and generous community.  We'll make good come of this!

UPDATE: Friday, June 13, 2014

Kaiser Update - 1 week later.

It's currently 90 minutes shy of one week since I posted my open letter about the - shall we say, "unfortunate" experience I've had with Kaiser Permanente here in Southern California.

Community wise, I've received tremendous support from people at the National Hemophilia Foundation and the Hemophilia Federation of America , not to mention insight, resources, and support from advocates such as Ben Martin, Tony Maynard, David Espinosa, Terri Cowger Hill, Diane Nugent, Judith Baker, Michelle Rice, Guy Young, Rich Pezzillo, Glenn Mones, Heather Mikels, Keely King, Nate Osbourne, Clem Adkins, and probably many more that aren't coming to mind as I type this.

I'm quickly learning all about hemophilia in California!

There have also been so many stories of botched care with KP that've come my way, further substantiating my concerns and strengthening my ability to advocate for us all during this window that I have the attention of decision-makers with Kaiser.

Speaking of...

I just hung up the phone with the Medical Director for KP Los Angeles, Dr. Michael Tome. It was our second call this week. Previously, I'd requested a meeting with him and higher-ups at KP Los Angeles to discuss the needs of people living with hemophilia, and where KP's existing system is severely inadequate for properly meeting those needs.

On today's call, Dr. Tome citied having numerous internal conversations with the individuals he'd like to be present at this meeting, specifically naming these individuals and outlining their role at Kaiser.  He confirmed that together, we will "take a deeper dive" and evaluate "why the system broke" and "how we prevent it from breaking in the future."  There is not yet a date set, as he needs more time to coordinate schedules with these high-level, busy individuals (my words, not his). I think that's fair and emphasized my support of having the right people in the room even if it meant having to wait a few weeks to get the meeting together.

To KP's credit, their pharmacy director Giselle Willick was also on the call to confirm my pharmaceutical needs were being met, and remind me of the Rx refill process. I appreciated their incorporating a personal patient check-in to this call.

I also appreciate Dr. Tome asking me about Stop The Bleeding!

In short, I'm hopeful. I'm hopeful that this leader genuinely cares about righting this wrong for the community. I'm hopeful that he and his peers understand this isn't simply a hemophilia problem affecting several hundred KP patients, but rather a rare disease problem affecting nearly one million KP patients. I'm hopeful, because change does happen, and often as a result of an unexpected triggering event. I'm hopeful because I've spent the better part of four years immersing myself in our community, a community with strong advocates and skilled leadership, and I've learned a lot from these individuals. I'm hopeful because great things have small beginnings, such as deciding to move to Los Angeles only to find myself in a position to create a tangible, lasting, care-related change that impacts a large percentage of our community as our country transitions into a new model of healthcare, and that's too exciting for me to quit before it's accomplished.

Going forward, the updates will hopefully be few and far between (AKA, this page will go back to being about STB! and other programs that I'm working on for the community). I will likely put out another call for KP patient stories and other information in preparation for this meeting.  And of course, I will post the takeaways and next steps once the meeting is complete.  

In the mean time, thank you to everyone who took a moment to engage this story.  My open letter received 7,700+ unique views in the past week, and that's because of how many people recognized the importance of the story and took the time to share it with their networks.  Well done!  We have an extremely powerful voice for a minority population, and it's not going unnoticed!  Kudos to all!

Special shout out to my teen friend Noah Workman, who took it upon himself to put together the petition that made the rounds, attempting to get the attention of KP's CEO!  Not only that, but Noah emailed the CEO and GOT A RESPONSE!  That's some pretty cool self-motivated advocacy work for a high school dude living 2,700 miles away from the incident.  Well done, Noah!  You're a great role model for all young people in the community!

Have a great weekend!  - PJL

UPDATE: Friday, July 4th, 2014

My meeting with Kaiser Permanente LA Medical Director Dr. Michael Tome and doctors Nirvah Shah and Joanne Schottinger has been moved up from the end of the month to this Thursday. Despite my request to bring a "hemophilia advisory committee," Dr. Tome's assistant confirmed that I am to attend the meeting alone.

Over the next couple of days, I'll be preparing a small presentation and refining my goals. If you would like to share with me your horror story about sub-standard care, an overwhelmingly positive story about going to an HTC, or thoughts about Kaiser Permanente in particular, please do so. You can post your story here, or if you prefer: patrick@believedigi.com.

Thanks everyone. Hope you had a great holiday weekend!

UPDATE: Saturday, July 12th, 2014

Update: Thursday evening, I had a meeting with the following people from Kaiser Permanente:

Dr. Michael Tome (Area Medical Director, LA Med Center)
Dr. Nirav Shah (VP, KP SoCal - COO, Clinical Ops)
Dr. Joanne Schottinger (Ass't Med Director, Quality & Clinical Analysis, SoCal)
Giselle Willick (Area Pharmacy Director, LA)

The 90-minute conversation was a productive start toward addressing the myriad of problems I've experienced since joining KP in this Spring.

I'm breaking down the topics we addressed into 3 categories:
Front-line (call center, member services, enrollment protocol, etc.)
Pharmacy
Annual Comprehensive - KP v. HTC model

Front-line
KP has made adjustments to, clarified, or standardized a number of "new member on-boarding" systems to ensure someone with a chronic and/or rare disease is efficiently streamlined into their system. This includes standardizing all call center staff scripts to reduce the possibility of communicating misinformation, as well as considering someone with a hemophilia-related prescription to be considered "high risk," ensuring they are appropriately accounted for entering KP's system. Likewise, patients with chronic illnesses, like hemophilia, are to be immediately setup with their specialist without needing to first see a PCP.

Pharmacy
New members can fill an existing prescription before seeing a doctor as part of KP's "New Member Exception Policy." KP's marketing materials and website are being revamped to communicate that information to patients. KP is now working with a home delivery service, though I am awaiting clarity on whether or not that is available to all hemophilia patients.

Annual Comprehensive - KP v. HTC model
If the CDC-recommends that HTCs are the standard of care for patients with hemophilia, how come KP doesn't permit adults with hemophilia the option of visiting a local HTC for their annual, comprehensive appointment?  How is KP providing equitable or better care to these patients than the HTCs?  Why is it available for pediatric patients here in Los Angeles but not for adults?  These questions, on Thursday, could not be answered satisfactorily, but I was assured that the four people I met with would do their due diligence and provide me with a response "within a few weeks."  I'm encouraged by their commitment to that and will stay on top of it.

In summary, Thursday's meeting was a great step in the journey of improving care for patients with hemophilia (as well as other chronic and rare diseases) under the charge of Kaiser Permanente. There is work to be done.  They stated a commitment to doing that work, and I stated my commitment to assisting them in any way, shape, or form.

As soon as there is more information, I will let you know. Now, back to our regularly-scheduled weekend! - PJL

Elsewhere LA, Short Film, NYC!, NBA Playoffs, etc

NOTE: as always, this is written on the go, off-the-cuff, without spellcheck, and absent of review. forgive typos and sentences that don't make sense.

in the air, heading back East for a bustling 5 days. Time to look back a little, and forward a little more.

Thursday night, Elsewhere hit LA, with 7/8 NYC members flying out for the one night performance @ play (1018 S Santa Fe).

the night was a bit hit. Lots of great feedback from our new west coast fans! I really appreciated getting to do theatre for one night. By nature of my professional choices, outside of staged readings, I've only performed live 4 times since 2011, 3 of which have been in Elsewhere. considering the volume of opportunities I had btw 2003-2010, it feels like a homecoming each time I get to stand across from a scene partner and act in front of a live audience. There's magic there, and I never feel as "at home" as I do in those fleeting moments.

the Cazaux crew (my house) hosted 6 peeps for the trip. It was a full house!  And I loved it. IMHO everyone desires identity in the context of a community, and I certainly derive my sense of creative, professional, and, in large part personal identity out of the invented family I have in the greater Believe LTD crew. have to thank Ryan Gielen for casting me in commercials back in 08 and for saying yes to STB! in 11. Without those, I don't have this incredible family.

one small sour note from Thursday is just how many no shows there were - in the end, we had a full house and put on a great show, and that's more important, but considering how many people took off work, flew themselves out from NYC, and worked vigorously to get this show up, it's just disrespectful. In the arts, there are invitations to things all the time, I know that. And I'm thankful to have a very loyal base of support for all of my hemophilia & entertainment-related events. But almost every cast member had an above average number of people either drop out day of or just not show. Not cool. Some wanna say LA entertainment peeps are flakier and less supportive than their NYC counterparts. I don't wanna jump on that bandwagon. Not yet, anyway.

Thursday also marked the launch of Elsewhere: The Movie's fundraiser. The campaign is to raise $10,000 to begin the pre-production process of putting this film together. Learn more about Elsewhere & consider donating here: http://whereiselsewhere.com.

friday, Andrew Gaul, Shua Bragg, Jenn Bragg, Rob Bradford, & I shot a short film that we developed together over the past 6 weeks. It was a quintessential "oh man, it's Good Friday and the park is packed! / why is it so windy? / there's too many planes for good sound!" type shoot day, but that crew is incredible and the whole thing was a blast. I can wait to see what Shua does in the edit. Regardless of the product, I'm proud of how we pushed to maximize the creative opportunities this past week afforded us.

Saturday, this morning, had to say a far-too-quick goodbye to Jess and Finn before heading to the airport for a long travel day. I'll be honest, i don't like leaving LA, but every time I'm with mah peeps in NYC (which I will be Mon & Tues), I'm happy to be back. Plus, I get to see some family, schedule a few biz meetings, and see some dear friends. 

NBA BASKETBALL! 

sunday. Easter. Family. NBA BASKETBALL!

monday. Jeanne White is in NYC for two events with me. She and I will visit the National Hemophilia Foundation HQ, where Jeanne will meet the staff & share her story.

monday night, Powering Through 2 (thanks NCHS!) takes place, with Jeanne and I engaged in a one-on-one conversation in front of a live audience.  Having recently spent a great deal of time intimately acquainting myself with Ryan, Andrea, & Jeanne's story, including spending a weekend with the family at their home, I know our conversation will touch on topics and details of their story that most interviews don't. That's what I'm particularly excited for! (Tickets are free - RSVPs are required - http://believedigi.com/poweringthrough)

***If you're not familiar with Ryan White, hop on YouTube, search his name, and click around. ***

tuesday, Believe Theatrical showcases Ryan Gielen's new comedy Under The Boardwalk featuring BT company members Katy Wright-Mead & Rob Bradford, as well as company friends Sam Underwood & Dru Johnston. I love what we're doing with Believe Theatrical and am excited to welcome Sam & Dru into the fold! (Tickets are free - RSVPS are required: http://bit.ly/UTB2014)

wed & thurs are full of meetings, catch-ups, & some much-need and protected writing time.  fri it's back to LA.

This year has been a fast, furious, and productive one thus far. Wild that it's almost 1/3 over. After this week, I'll be spending a few minutes reviewing the past 4 months and game-planing for the next 4.

A few quick hits... 

the response to STB! Season 3 has been incredible. Thanks to everyone that's taken time not only to watch the show, but to engage with me via our Facebook Page, YouTube channel, IG, or Twitter. I love hearing your feedback. huge SO to everyone that's shared the show too! That organic spread is vital to audience development. We have an amazing fan base. Let's keep growing it!! (Http://stbhemo.com)

Subscriber studios had been fun to watch launch. Had some great talks with the team this past week about next steps. (Http://YouTube.com/SubscriberStudios) 

NBA PLAYOFFS!! Let's go Nets!! 

Finally, I have a very exciting announcement coming later this week of something that's perhaps more personal to me than anything  else I've shared. Stay tuned!

NBA Playoff Prediction. 

 East 1st Round

BKLYN def TOR in 6

MIA def CHA in 5

IND def HAWKS in 6

BULLS def WASH in 6

west 1st round

LAC def GSW in 6

HOU def POR in 7

SPURS def DAL in 5

OKC def MEM in 5

east 2nd round 

MIA def BKLYN in 7

IND def CHI in 6

west 2nd round 

LAC def OKC in 7

SAS def HOU in 5

east finals  

MIA def IND in 6

 west finals

SAS Def LAC in 6

NBA finals

SAS def MIA in 7

MVP: T Duncan, Duncan retires. MIA makes strong push for Melo/Love, at the risk of letting Wade go.

 

 

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HFA, STB! premiere, bowling, teens, family, etc

NOTE: as always, this is written on the go, off-the-cuff, without spellcheck, and absent of review. forgive typos and sentences that don't make sense. that's the cost of this business. :)

the hemophilia federation of America holds an annual symposium each year, bringing the bleeding disorders family together for education, updates, and community.

for the past few years, I've spent the majority of my time with the teen program. This year had to be the best teen program that I experienced thus far.

believe Digi was responsible for 3 teen specific events, including auditions for Season 3 of STB! and a red carpet event to build some hype in the middle of the convention area. 

we could not have asked for a better turnout.

During our audition program, all of the 30ish teens were incredibly brave and TALENTED when it came time to show off their performance chops. We used some of the footage in the Season 3 premiere episode (coming out April 1) and will use more in episodes 2 & 3 as well as in some of our supplemental videos. 

"turning passion into action" was a workshop that I co-ran with Seth Kirschner, Jonathan James (Hope for Hemophilia) and Robert Champagne (CJWCC). we spoke with the teens about their various passions and how they could develop those into substantial parts of their future.

there were a lot of great takeaways from that session, but none better than when one of our teens, who lives with some mental & social considerations, made a confession that we was very nervous about, but when he shared with the group, literally half of our teens spoke us to tell him about similar truths in their lives. Forgive the vaguery, I have to respect the request for privacy, but trust me when I tell you that the love the group showed to this young individual moved me (and others) to tears.

our red carpet event was silly and superb! There will be footage of that in the coming weeks, so keep an eye on YouTube.com/believedigi. 

then came time for the STB! Premiere. We had a great, packed house including about half the teens (and their families) and around 15 people from Baxter (our sponsor). The response to the episode was fantastic, the talkback was engaging, our "trophy" ceremony was a big hit, and our sendoff song - Bleed On Me - brought the whole house to their feet! 

on Saturday, Ryan and I had a couple of meetings, I got to spend some time with Elise, my favorite 5-year-old, then Seth and I caught up with the teen crew in time for their closing bowling event. Needless to say, we had a ton of laughs.

debrief feedback from the teens was honest and articulate. they had a blast and gave some great ideas on how to continue making the program bigger and better! I'm already excited for next year.

saturday night ended with an extended dance party at the Final Night Event in which a group of 2-5 year olds and one 6'2" 28 year old danced around like goofballs. my joints are feeling it today, but it was worth every minute of it.

on the flight back to LA now, a few big takeaways.

1) in it's 3rd season, STB! enjoyed it's first premiere screening. It was super well attended and received a tremendous response. maybe this HFA premiere is an emerging model for our every-other-season launch.

2) Janel and Ziggy are rockstars at co-running the teen program, and the supporting committe volunteers (John, Shelly, & Alex) were perfect compliments to J and Z's energy. 

3) the teens so appreciate having an organized structure to hangout in, to get to know each other and develop as advocates, community members, and individuals. the contributions from the committee and guests go a long way toward giving them a fantastic experience. 

4) it's a unique joy getting to watch not just Ryan now, and not just Shua, but also Seth get to know more of the community members and watch the community get to know them. Diversifying the influencers of the community and raising awareness through entertainment are two pretty cool things I get to do.

5). this community is a family. HFA's symposium is 1 of 2 opportunities for the family to get together. We're very fortunate to have HFA working hard to keep providing us these opportunities. 

Leaving tampa feeling fulfilled, grateful, and excited to share all of our STB! and #HFA2014 content throughout April!

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Marijuana, Santa Barbara, Happiness, Phil Jackson, Paleo, etc.

NOTE: as alaways, this is written on the go, off-the-cuff, without spellcheck, and absent of review. forgive typos and sentences that dont make sence. that's the cost of this business. :)

i've been messing around with medicinal MJ in california since i first started spending time here last January. the more i learn - or better yet, experience - the more i believe in it's utility for pain management. I find that my pain is alleviated without the sleepy effects of the pain pills ive taken over the years, I am not concerned about the long-term effects on my liver, and I'm sleeping better.

Obv medicinal MJ still has it's consideration and long-term pot use is not necessarily a "healthy" choice, but I take sincere comfort in putting a medicially screened natural plant into my body and acheiving these results.  I'm excited to continue learning about marijuana and it's use for pain management.

been in Santa Barabara since Tuesday with the gf and her fam.  The city is stunning.  This resort is stunning, and our time here together has been incredible.

solid reminder - water is a hemophiliac's friend! i've made use of the pools, steam room, and hot tub everyday. it's been fantasic and my body feels great.  finding a pool that isn't overcrowded or gross can be very difficult at the well known sports clubs - but man it's been amazing to use the spa here. makes me reconsider my fitness facility back in LA.

i made a comment yesterday to jessica that's stuck with me - happiness is a choice. when we agreed to this trip with her parents, I made up my mind - I'm being treated to an amazing trip, so matter what happens, this trip is amazing.  I will not allow anything to intefere with my ability to fully enjoy this gift.  but really, that mindset should not be reserved for paid vacations. as Larry King said Marc Maron's podcast (highly recommended interview btw), when you wake up in the morning and open your eyes to greet another day, you didn't do anything to earn that. it's a gift. enjoy it!  I have to continue reminding myself of this as I return to my typical life. It's all a gift, and being happy with it is my choice - not a byproduct of things out-of-my-control.

Phil Jackson is Pres of the Knicks. James Dolan did PR. He said in it that he would stay out of Phil's way. This is music to die-hard Knicks fans ears. Melo said he'd be willing to change his game to accomodate Phil's valueadd.  Steve Kerr will be coaching next season. I'm not buying back on the Knicks - the divorce has been finalized and I've remarried the Nets - it's not perfect, no relationship is, but it's going well.  That being said, if Dolan is sincerely going to stay the F out of things, I'll put them on my "Watch List."

Jess and I have been on the Paleo diet for about 3 weeks. I'm not a big fan of "diets," but this one includes a ton of meat so I was willing to accept it. We're also rolling it into a whole "lifestyle change." I gotta say, I feel awesome. I'm still craving grains and sugar, but I'm able to recognize that as a craving associated with an "addiction" and not hunger. But my energy is up, my head feels clearer, and my body feels thankful. As someone who is always messing around with food and diets and restrcitions and blah blah blah, I must say I recommend this Paleo nonsense!

Time to get back to the water.

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Jess, Rich, Meg, Partial Head Of Stranger Lady, & Water.

Michael Greif & If/Then, the Musical with Adele Dezim

Life is about the little moments in which we make big decisions. I wrote that about a year ago. Last night I was thinking about that a great deal.

If/Then is a Broadway show that follows a woman's life over the span of several years along two different tracks: if she had chosen to spend her first night back in NYC with an old friend at a protest, or if she instead went with a new neighbor to a music show.

the show highlights the chaos theory, the butterfly effect, the randomness that is our life. if "Beth" (Idina/Adele) does X, her life follows a completely different trajectory than if she had followed Y.

I found the show moving and appreciated a great deal of it, but on 90 minutes of sleep and burnt from this NYC wildfire, I dare not attempt something that even dons the shell of "a review." 

ironically, the show - one of the only broadway show's I've seen since I gave up being a "full-time actor," is directed by michael Greif - who directed (amongst many great pieces) the 2010 NYC production of Angels in America - the last Audtion I went on as said "full-time actor."

that was the most involved audition process i'd been thru - it spanned only about 10 days, but involved 3 audtions - 1 w/ telsey and co's Will cantor, and 2 with will and michael. It included roughly 40 pages including many, many monologues (I was audtionjng to cover 3 males leads in both parts of the mega-show).

the processes ended like most of my young experiences with "bigger" audtions - came down to me and the other guy - usually an older guy in better shape with more credits - and it went to him. 

my agents reminded me it was "only a matter of time" for me, but all I heard was a ticking clock with no definite result. I knew it was time to make a change. 

that cchange was giving up "full-time acting" to play poker in the hopes of making the big bucks to fund more meaningful projects that I could control.  

and of course, IF it hadn't been for that choice, THEN I wouldn't have met my friend Anthony, which is why I was at the show last night in the first place.

funny that. 

as I said a brief post-show hello to Michael - the 3rd or 4th we've had since that Audtion - I was struck by how my IF/THEN w Michael was a major turning point for me, but probably a non-memory for him. He doesn't know me. He has no idea who I am. How is that possible? How can a stranger who didn't do something for me have had such an impact on the trajectory my life would take? Kinda makes me wonder if I've played that role in anyone else's life.

the show also discusses age, aging, and reframing one's sense of self in ways that I'm not used to seeing in a musical - not that I'm a strong barometer for the typical musical. 

Tho the "What If" theme shines through the piece, I was personally hit as strong - if not stronger - by my feeling "at home." I was spoiled by the Huntington Theatre while at bu. At 18 I was In a Nikki Martin show at one of the country's biggest and best regional houses. In the next four years, I'd rack up 9 more credits at the Huntington and analogous Theatres. I know myself in the theatre. I know where the actor goes, I know what the actor does, I know how the actor behaves, I know how the actor prepares. I know the actor's etiquette. I know the actor's process. I know, but I don't do it. Anymore. I understand why, but I can't help but wonder, if I put "play Broadway" on my bucket list, then what happens?

 

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shot of upstage mirror wall on the set of if/then following Mar 6th performance.

Root Canals & Aneurysms, filmmaking and NYC, Expectations and etc.

 "Im giving you news you don't want to hear at a place you don't want to be from a guy you just met."

that's how I met my new dentist. 

apparently an old filling I had cracked along the way and the tooth has been subject to fresh decay (oxymoron?), decay that's gaining on the root. on my next appointment, I learn if he can replace the filling and stop the decay or if I need a root canal. A root canal...how old am I...

psa: go to a dentist regularly.

yesterday I went to my Hemophilia Treatment Center for my annual checkup. no real news, other than I have to start logging my infusions - something, tbh, I've never done. That and the conversation I had with my geneticist about my potential predisposition to

aneurysms.

i don't know what killed my grandmother, it may have been an aneurysm and depite the paperwork, i don't know what killed my brother - but I've always suspected an

aneurysm.

geneticist: "is anyone in your family particularly tall or flexible?"

me: "well I'm just about 6'3"." 

geneticist: "oh...yeah you may want to find out more about your family history." 

(for the record, the geneticist was awesome - don't let me casual Starbucks blogging give the wrong impression.) 

the potential that I'm predisposed to 

aneurysm is something that's quietly concerned me for years. next step - learn more about my family history and report back to my kind and concerned genetist.

 tomorrow I go to a podiatrist who's office runs with the seamlessness of a dress sown by a seizing monkey stitching during an earthquake. the good news is a dole out another $600 for new orthotics.

at least switching up my health insurance is proving to be overly complicated   

this is why i loathe medical afternoon. this is why it's absolutely necessary.  this is adulthood mr lynch.

dentist (surveying my form): "you already have arthritis?"

me: since 13 actually. 

dentist: "hmmm...I'm sorry..." 

stop the bleeding was once again an intense blur of fun and frenzy. In 3 days, we shot 95% of the 29 pages for Season 3 (the rest to be shot in LA and then with teens attending HFA's 2014 Symposim Teen Program! I can't wait to share these episodes and hear the community's response to them.

nyc is such a double edged sword. I'm from this city, I root for this city, I get this city, I respect the artists in this city, I love the excitement in this city, i love my hemophilia family in this city, I have great friends in this city, my mom and dad live just outside this city. 

so it kills me that I can't wait to leave again.

los Angeles is home right now. I'll be back plenty this year for work, but - along the lines of a previous post - I need to protect myself from burnout and NYC is a burnout for me. lucky me, many of my close friends are coming out to LA in April for an Elsewhere performance. (http://whereiselsewhere.com)  that will be a blast!

in the same - say no to burnout - mind frame, I'm reminded of something a directing instructor said to be at college, "If you don't see it in the audtuon, don't expect to see it in rehearsal or performance. Don't cast based on potential." 

she was right, and made a much bigger point: people are who they are. expect them to behave in a way that contradicts their pattern of behavior and expect a massive headache. But if I dont expect someone to be anything they're not, 1) I know how to work with then 2) I avoid disappointment. Generally, I think I'm good with this. Very good. And every time I place trust in someone to act outside that pattern of behavior, I end up - at the very least - disappointed.  

dont cast on potential, and go to the dentist. 

Washington Days, Jason Collins, Lifestyle, STB!, Traveling, etc.

so proud of all the bleeding disorders advocates from across the country who took to Washington, D.C. this week to lobby for continued support for of the hemophilia treatment centers around the country. these centers are VITAL for the care of bleeders around the country and the roughly $5million dollars of annual federal funding is split amongst the 130-something (I think - someone correct me if my # is off) centers which offer comprehensive care for our rare disease. our community really rallied for our legislative rights during the blood contamination crisis - as crisis often bonds people - but it's to the great credit of our community's leaders that we've maintained a strong voice, as times of peace can too frequently lead to complacency,which of course only leads to the next crisis. 

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speaking of pre-empting crisis - Stop The Bleeding!, my comedy web series about hemophilia designed to engage young bleeders through comedy - is back in production this weekend! the episodes were a blast to write and I can't wait to be back with our wonderful team. these episodes will touch upon:

- importance of wearing medic alert jewelry

- importance of health eating

- importance of "person first" language

- importance of bringing factor on trips

- importance of community

- empowerment of women with bleeding disorders

- empowerment of people with hemophilia b

- empowerment of people with vWD

- hemophilia fun fact!

im sure we'll be posting pics to the facebook page and on instagram (#stbhemo).

super proud that my team - the brooklyn nets - hired the first ever openly gay athlete in the 4 major american sports. im with the base that looks forward to the day this isn't a story, but just as it mattered when jackie robinson played in brooklyn, this matters. given the ability to communicate and learn through the internet, it feels like the journey toward acceptance of gay athletes in sports will be a much smoother one than black americans and hispanic americans face. i hope.

trying to make some lifestyle changes - eating right, getting enough sleep and exercise is a continual battle for me. it seems to be for everyone, frankly. when you think about that super healthy friend, arent they always either going to the gym, preparing their meals from home, declining invites to parties? that's because everything comes at a price!right now, i'm trying to move very fast on a number of professional fronts while working on a very new living situation. there are only so many hours. the importance of prioritizing and managing time effectively becomes more apparent to me all the time. that's why ive gotten better at being okay with myself even when i come up short. no one's perfect, and no one can do everything they want all at once!

one thing i do hope to reduce is the amount of travel in my life. since january i've been in something like 15 cities, on 6 flights, and driven roughly 4500 miles. it's tiring, and it hurts the aforementioned attempts to alter lifestyle. variables encourage habits. stability gives space for change.

but if i didn't think all the variables would pay off, i wouldn't be doing it.  

Casino scams, SoulPancake, George Lopez, Ryan White, other things, etc.

blogging on the go means minimal proof reading. Sorry if that makes things confusing...just felt like going over the various projects occupying my time these days...

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traveling back from an overnight trip to visit with Edmond Bismarck, casino securities expert and author of Ticket In Ticket Out: A Low Tech, Undetectable Casino Scam (http://www.amazon.com/gp/aw/d/130041362X). Ed's book was published last year following his casino employer's dismissal of his findings. To help prevent attentive casinos from losing 6-to-7 figures a year on this scam, Ed decided to take his discovery public through the prism of a "how to" manual. It's garnered him a lot of attention in the gaming industry, and even landed him a speaking opportunity next week at a prestigious international conference on casino and gaming security being held in Las Vegas. Ed is the one speaker who's picture isn't being shown on the conference registration website. His findings and publicity demand a certain level of discretion (as you may have already guessed, Ed Bismarck is a pseudonym).

As if his discovery wasn't eye popping enough, Ed personal story of growing up dirt poor then ascending in the gaming world only to have his world turned upside down as a result of this discovery is absolutely jaw-dropping.

thats why I own the option rights to it.

When Ryan and I met Ed last year, not only did his book and personal story floor us, but we genuinely enjoyed befriending Ed. Seeing him again last night, continuing to dig into his story and sharing our last TV show treatment with him was a total blast. Can't wait to see Ed again soon.

In two weeks Ryan and I pitch "TITO" to someone w a first look deal at a major network. Fingers crossed. 

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 Stop The Bleeding! Season 3 is written. Production begins Mar 1. After landing CJ Wilson for Season 2, I genuinely didn't know how we could top ourselves in Season 3. I think we're about to do exactly that. No spoilers here, but in Season 3 we continue to expand size and scope of our show's set pieces & hemophilia messages. We debut this season's first episode in Tampa at the end of March during the 2nd largest annual conference for the bleeding disorders community - a huge opportunity. I can't wait to educate and entertain so many community members all at once.

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Last week I had the pleasure of meeting excellent members of the team at Soul Pancake, Correy, Georgia, and Bayan. My friend and Napkin Notes founder Jacob Soloman (Bubala Please, Thug Notes) introduced us and I thank him for that. We had a highly productive get-to-know-you followed by my pitching them a show for their YT channel. Super positive pitch and spitball session - next step, I incorporate their notes and resubmit a proposal. If they like it, we shoot a pilot. If not, I come up with something else that's awesome and eventually we'll shoot that.

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Exceptional Kids is a docu-soap reality show about kids living w exceptional medical circumstances who are simultaneously achieving exceptional things in their lives. My friend Courtney - a producer best known for Extreme Makeover: Home Edition - has been developing this with me for about 7-8 months now.  A friend of the George Lopez Foundation pinged their Exec Dir Linda small on my behalf, believing GLF may be a great partner in this project. Linda was very receptive to my pitch and has taken the idea up the ladder. Time will tell. I love this show, and it needs a champion like George to take it to the next level. I hope we can work something out. If not, I'll happily hustle forward.

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24 years ago Ryan White died at 18 of AIDS. He contracted HIV through contaminated blood products he received from pharma manufacturers to treat his hemophilia (if you don't know about this crisis, it's stunning - google: hemophilia contaminated blood). 

Ryan's story of fighting for his right to education and fair treatment is a landmark event in the civil rights history of this country.  this weekend I meet with his Mom to discuss a project designed to commemorate the 25th anniversary of Ryan's death and introduce a new generation to his incredible legacy. I hope to have much more to share about that in the near future.

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Five years after a life-altering trip to New Orleans, I'm closing in on completing a first draft of a screenplay about the event through Writers Bootcamp. Late May should find my producer friend Jess Richmond & I starting pre-pro work down in New Orleans. I love that city.  

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Http://YouTube.com/SubscriberStudios is a brand new YT channel in which our subscribers play the role of studio - choosing which projects get green light and which hit the floor. Our first show is up. Watch it. It's quick and original. 

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Shot two commercials here in the house last week, and I got to act in both. I really appreciated the opportunity. I wish I was taking the steps that I'd planned to in order to reignite my acting career by this point - but what in a vacuum made sense, in actuality, there just isn't time for right now. So opportunities like last week are quite special. One day, one day...

other random thoughts: 

Lots of hemophilia events coming up

Thinking about rebooting my interview podcast 

i may be working as a producer on a handful of indie Films by the time summer hits, which is an extremely exciting potentiality.

happy trails

 

Biking Blog

Distance: 3.15 miles

Overdue to post and bored/tired during workout. So why not?

Distance: 3.28 miles

2013 was a wild race to the finish. Between bi-costal work obligations, holidays on the East coast paired with signing a new lease on the West coast and embarking on a 2-year graduate level screenwriting program (Writers Bootcamp), there was a noticeable lack of that relaxing holiday spirit filled with 1-month-a-year sweaters and ottomans by the fire. Does anyone actually have these? Seems like everyone I talk to has a holiday recap story more analogous to navigating the layover airport then anything I see on postcards.

Distance: 4.20 miles

No surprise, 2014 is off to a blazing hot start, developing 2 TV projects & 2 film projects, launching Subscriber Studios (http://YouTube.com/SubscriberStudios), prepping 3 more STB! Episodes (http://stbhemo.com), and working on many other bleeding disorder-focused initiatives.  The work load is heavy and rewarding.

The new place is fantastic. It's large, filled with great housemates and guests, and it love having an office 20 steps from by bedroom, and, equally important, 20 steps from the coffee maker.

Distance: 5.11 miles

I was devastated on Sunday by the death Phillip Seymour Hoffman. Jessica and I were at a retail store looking for her interview outfits when I read Ryan's Facebook post. Hopped on Google, hoping a verification attempt would prove fruitless. Alas it did not. Another incredible artist taken away well before anyone was prepared. I immediately started to cry. I realized 2014 now had a major national benchmark.

Fortunately for Jess & I (and the woof woof Finn), 2014 has another, wonderful benchmark. We spent 10 days on a cross-country road trip from NYC to LA via DC, Nashville, New Orleans, Baton Rouge, Austin, someplace in New Mexico, and Surprise, Arizona. I indulged in all the local food and drink I could get my hands off and soaked up as much local color as possible. Jess and I even got tattoos in Austin! I haven't reflected enough on the experience to put some cogent thoughts together yet. Or maybe I have and it's just the heart rate talking. Speaking of:

Distance: 7.0 miles

 

Breaking Barriers: Session 1 Recap.

Yesterday, NYC Marathon Day, we launched Breaking Barriers, a new initiative in the hemophilia community that I referenced in my last blog.  

The goal-setting & healthy-living focused program kicked off with a session on getting started on the right foot .  Reps from Pfizer spoke about the importance of medical adherence in healthy living, Ryan Gielen & I spoke about short-term goal setting, and trainers from SuperMe Fitness spoke about & led us through warming up for exercise.  The program wrapped with a trip to root on marathon runners as they geared up for their final mile.

We simultaneously live-streamed the program across the US where over 60 families tuned in to watch and interact with the session via our social media manager. 

If you missed the session but wanna check out it, the stream is still available here.

You can also download the information and notes packet that was made available to live participants here.

Comments on the YouTube page are still live, and the Twitter Chat can be viewed via #BBHemophilia.

Pictures from the session are posted on Instagram and can be viewed here

I was so proud of my team yesterday.  Pulling off an event like this isn't easy; Believe Digi alone was a 7-person unit, and everyone did their job to the highest caliber.  I'm excited to continue growing this program and effort toward increasing the scope of digital outreach, especially alongside a partner like NYCHC and Glenn Mones.

The personal highpoint for me was cheering on those marathon runners.  At the end of mile 25, and about 6 hours into the race, we were standing alongside a number of fellow cheerers whose loved ones passed by, many stopping to hug, kiss, and cry.  We witness a blind runner alongside her guide, and a proud 82 year old man laboring his way to a finish.  It was so inspiring.  Selfishly, I was bumming that I wasn't one of those runners, but more importantly, I was thrilled to share in the experience with the awesome group of teens from NYCHC.  I think we were all blown away by the inspiring nature of sending out that positive energy and rooting on complete strangers in that incredible feat. 

We've received wonderful feedback and I look forward to our next live session on November 24th @ the NYCHC Annual Meeting.

For participants, both live and online, who would like to have a 15-minute accountability check-in next Sunday, November 10th between 1-4:30EST, please email me @ patrick@believedigi.com to setup.  Participants must be registered by Friday.

Set goals, establish a plan, and take steps. 

 

 

A Difficult Decision, A Wonderful Opportunity.

At the start of this year, I set a simple goal: Run the 2013 NYC Marathon. A severe hemophiliac living with severe osteoarthritis in the ankles supporting a 6'3" 235lbs frame, the goal was, shall we say, ambitious. Did I mention I was also out of shape?

I'd witnessed so many fellow community members become despondent when discussing their physical health.  In 2013, with all that's available to us, I viewed that attitude as unacceptable. I believe that our community members are far more capable ‐ physically ‐ than they sometimes give themselves credit for.  It was my quest to prove that with a positive attitude, proper preparation, and emotional support, impossibilities could be shattered into possibilities.

I titled the initiative, What's Your imPOSSIBLE?.

Despite my best efforts, in September, at the urging of my medical team, I ended my quest to run the 2013 NYC Marathon. I was experiencing all‐too‐frequent breakthrough bleeds in the ankles & beginning to develop pain in my knee as a result of the compounded stress on my compromised alignment.

This was a difficult and disappointing decision, and on shallow examination, an outsider may then want to label What's Your imPOSSIBLE? a failure. I could not disagree more. In fact, I think my decision to end the initiative is one of the most intelligent and empowering decisions I've ever made.

Running the marathon was my impossible. I pushed myself to the brink to achieve it, but when the time came to recognize the line between possible and impossible, daring and foolish, uncomfortable and painful, I was mature enough to do so, without my ego pushing me into dangerous territory.

What's Your imPOSSIBLE was not a failure. It was a tremendous success. Here's some reasons why:

  • I lost 40 pounds.
  • I learned important information about proper nutrition & made significant changes to my diet.
  • I established a habit of incorporating physical fitness into my life 4x/week.
  • I recognized a significant boost in my self‐esteem.
  • I discovered that I'm capable of hiking, something I'd always thought inaccessible.
  • I ran the 2013 Long Island Half Marathon, beating my goal time of 10‐minute miles.

Most importantly, I can now serve as an example to the young people in our community of how to chase their own impossibles in safe, supported, incremental steps, and how to be truly honest with oneself along the way.

And I'm thrilled to announce that I've partnered with the New York City Hemophilia Chapter (NYCHC) and Pfizer Hemophilia to do exactly that.

 Breaking Barriers

On November 3rd, Believe Digi, NYCHC, and Pfizer Hemophilia will launch Breaking Barriers, a dual live‐and‐digital program designed to encourage, equip, and support teens striving to better themselves in a dynamic, entertaining way.  

Over the course of six sessions, participants will be asked to: 

  • Identify barriers or impossibilities in their lives.
  • Develop a long and short-term goal plan.
  • Take tangible strides toward achieving those goals.  

Other topics of discussion may include: 

  • Challenges & tactics to overcome them.
  • Accountability & documenting progress and setbacks.
  • Positive mental attitude & self‐forgiveness.
  • Information, ambition, & honesty.
  • Self‐evaluation & reframing.
  • Utilizing & offering support.

Sessions will include workshops with accomplished athletes, health experts, and fitness instructors, as well as a trip to the 2013 NYC Marathon.

In-person sessions are limited to ten, NYC-area teens.  Teens from chapters around the country are also encouraged to sign up and participate via our live stream, chatroom, and Twitter Chat.  There will be moderators present to specifically engage with these participants.

Online only sessions will be broken into groups of two plus one moderator. These will serve as accountability sessions and are designed to give participants an in-depth, personal check-in.

Upon completion of the program, participants that showed commitment to improvement and missed no more than one session will be awarded a Certificate of Completion.  

The program is open to all US teens affected my bleeding disorders.  

For more information and registration for this FREE program, click here!

Questions can be directed to me @ patrick@patrickjameslynch.com or Glenn Mones (NYCHC, Exec Dir) @ glenn.mones@nyhemophilia.org.

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Last week, I went for a run through Runyon Canyon, one of my favorite LA pastimes.  Around mile 4, overlooking the LA skyline, I started tearing up.  I love running.  I never knew it was something available to me.  I'm excited that whatever role it plays in my life going forward, I know the option is there.  Consequently, I was also bumming that I couldn't follow through on the "impossible" I'd set for myself.  I even began flirting with it again.  Well, maybe just keep it an option in your mind.  Don't say anything to anyone, just keep working toward it.  i About 15 minutes later, as my ankle began to throb and my knee began to ache, reality struck again.  I have to remind myself the personal benefits of What's Your ImPOSSIBLE? to keep my competitive self from getting overly upset by having to quit.  More importantly, I remind myself that the initiative was never meant to be about me, it was meant to do exactly what Building Bridges is giving me a chance to do: help others realize their potential.

 

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Let's begin (from here).

I've kept blogs on and off for the last five years.  I was even flattered enough to be exclusively featured as a poker blogger on an exploding poker site just before Black Friday.  The operator of that site turned out to be something of a *bleep,* so in typical Patrick compulsive-hyper-aggressiveness, I stripped all of my posts and in doing so, had no record of them.

I was tempted to dig around, see if I could find drafts anywhere.  Likewise, I thought about reviving some old posts from previous at large blogs to give this one some foundation. 

But now everything needs to last forever. 

I am where I am now, and from here, I will start. 

Welcome aboard.