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)


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?


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.)
Annual Comprehensive - KP v. HTC model

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.

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