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I was very arrogant about my health until recently.At 59, I had never been sick, I’m very fit, and look quite a bit younger than my age. My father is 90 and lives the same lifestyle now as 30 years ago, living in his own home in the Texas Hill Country.I’m a physician and have almost daily occasions to offer health advice, and I have a healthy, thriving practice.I am a fan of Nortin Hadler, MD, who writes extensively on intelligent, informed healthcare, offering facts and studies a healthcare consumer should be aware of before giving or refusing consent to commonly recommended medical screenings and treatments for conditions such as high cholesterol, blood pressure, or glucose; colonoscopy; mammography; PSA screening and more. Lest you think he’s fringy, he’s Professor Emeritus of Medicine at UNC School of Medicine at Chapel Hill, and Harvard and Yale educated. You can see his brilliance and relevance in this PBS interview.For 20 years or so, I’ve seen a wonderful internist yearly, but, would abdicate responsibility for this behavior, saying. “The only reason I have a doctor is I have a wife.”Thank goodness I have a wife.September, the year before last, 2018, I had previsit labs for my annual visit with Rick Earnest, who was Chief Resident during his internal medicine residency at Emory, he’s top notch.My white count was low. Rick’s nurse called and said he wanted another CBC and a folate. White count low; folate normal.Then, I saw Rick in his office and we chatted dispassionately about the neutropenia… WBC was around 2, with 4–12 being normal.He told me he had talked to a local heme/onc that morning and then, he shrugged his shoulders and said, “Looks like you need to see a hematologist…” I agreed.About a month later, I had extensive labs at the local oncology center; met the delightful hematologist, Kavita Nirmal, who recommended a bone marrow biopsy.I knew this was coming and, once again, being very healthy and having no signs or symptoms, I thought serial CBC’s would do.However, after my consult with Kavita, I had no urge to refuse the bone marrow biopsy, and it was done that day.Things moved quickly from there.The next day, Kavita called and said I needed to see a specialist at Baylor. Five minutes later, she called back and said, “You could also go to MD Anderson.”Baylor is two hours, MD Anderson is four.Initially, I balked at accepting an MD Anderson referral, as this meant, in my mind, saying, “This is serious.”Over the next 24–48 hours, I had the strong intuition I should go to MD Anderson.I responded to Kavita’s phone call about my treatment choice in a way I found funny/odd… I said, “I owe it to my family to go to MD Anderson.” I thought, “Wow, Dude, you can’t even take responsibility for your choice to go to MD Anderson.” (It wasn’t a big deal… but, interesting.)My records and actual marrow specimen were Fedexed to MDA; I went there for labs and another bone marrow biopsy; and met with a national leader in leukemia, Naveen Pemmaraju.All this occurred in a very compressed period of time and in a context of general surreality, punctuated by briefs periods of extreme surreality.I had accepted there was something wrong with my bone marrow. I had actually been aware I was neutropenic as far back as August 2016; but, again, arrogant invincibility had me ignore it.In Longview, I was told, based on microscopic evaluation of my marrow, and an estimated 13% blast count, I had myelodysplastic syndrome (MDS), something I was familiar with when a fellow staff psychiatrist told me he had it. It was a significant health scare for him, but that was in the 90’s and he and I were in touch for at least 10 years after that, and to my knowledge, he’s still fine today… (we both moved on from that mental health center years ago).Then, as I was going through the process leading up to seeing Dr. Pemmaraju, a nurse who was checking me in and reviewing my chart, was reading out loud to herself… as I listened, it was all quite routine to me as a health care provider, until the letters “AML” came out of her mouth.They weren’t intended for me; she was just one of those people who reads out loud when they read. Perhaps she thought I knew. Perhaps she didn’t know she was reading out loud. It is a cancer center…I can’t think of an adequate adjective to put in front of “stunned” and “frozen” to adequately express that instant as the biggest WTF! of my life rang out in my mind…“It’s leukemia?! I have leukemia?!!!” My mind was reeling with that shock…It was quite a mental shift, in an instant, unsuspecting, unprepared, from MDS to AML.I suppose it was helpful to have the time to be past that initial reaction later, as I sat in one of Dr. Pemmaraju’s exam rooms, waiting to see him. He burst into the room almost as enthusiastically as Kramer on Seinfeld. He was young, energetic, positive and extremely enthusiastic.There I was, sitting face to face with one of the finest allopathic physicians… a hematologist/oncologist who only treats two types of leukemia and MDS.It was a briefly challenging/confronting situation on a philosophical level.You see, I’ve been writing, Power Without Pills: A Curious Psychiatrist’s Guide to Healing and Growth in the Modern World since Googling John Sarno, MD in February 2006. And, I have talked some trash about modern medicine. Not irresponsibly or inappropriately… but, trash talking nonetheless.I was challenged with substantial, in-my-face cognitive dissonance.I resolved it for myself quickly.I had been throwing the baby out with the bath water.I had been all “mindbody medicine is where it’s at!” and, then and there, I realized I had been going to an extreme.I once heard a man say, “You’re just as half-assed no matter which cheek you got.”So, I decided, “Alright... I like this guy... I trust this guy... I’m going to roll with this, and I’ll handle the mindbody part... and he’ll handle the traditional medicine part…”Both cheeks were suddenly firmly in place.He told me they have a clinical trial, using the CLIA protocol, where they’re getting upwards of 90% complete remission rates in frontline AML.All three drugs are FDA-approved for AML, but no one is using all three together. “We are gonna rock this thing! We are going to crush it together!”, he said, beaming.He told me I’d need some preliminary tests, like an echocardiogram, to qualify for the study... a formality.Then, I would be admitted, given five days of chemo, be in isolation, and have a total of around 28 days inpatient before being discharged to outpatient treatment where I would receive five consolidation rounds of the same three chemotherapy drugs every 28 days.He said I’d be in complete remission by Day 28.That conversation was on the Friday before Thanksgiving. He told me to go home and spend time with family... my wife was there in that initial consult and throughout, but I hadn’t seen my father in Austin in a while... it was a wonderful, deeply meaningful break/visit with close family before I went inpatient… ostensibly 28 days, in isolation.On the eve of Thanksgiving Day, I was admitted to the Leukemia Specialty Care Unit at MDA, at around 7 pm, and began chemotherapy that night.How I’ll be bathing in isolation for the next 3–4 weeks…My wife and father-in-law visit me in the square bubble…This woke me up in the middle of the night, tickling my nose…Going…Gone. My hair didn’t survive.It went exactly as he said; except I had a Day 21 bone marrow biopsy in the hospital. The next day, the attending on the service strode briskly into my room, smiling, and said, “Go home. You don’t need to be here any more.”My blast count had gone from 30% to 4%, complete remission, in 21 days.I said, “Uh… I’m not ready.” (My wife was four hours away and expecting me to be discharged in about a week).I went home the next day, six days early, for good biological behavior.I was in complete remission.There was suspense though. I was told through some magic called flow cytometry, they could give a measure of prognostication, MRD, Measurable Residual Disease. With MRD, they could find traces of leukemia, the presence of abnormal blasts, “down to levels of 1:10,000 to 1:1,000,000 white blood cells (WBCs), compared with 1:20 in morphology-based assessments.”[1][1][1][1]A few nervous days later, at my first outpatient follow up, I was given the news, “You are MRD negative.”A Senior Coordinator of Clinical Studies, Department of Leukemia, MD Anderson Cancer Center, Rabiul Islam, who’s worked there since 2003, gave me that wonderful news, and he added, “I have never seen an MRD negative patient at Day 21.”As I have said, I highly value and practice mindbody medicine; parts of that are a positive mental attitude and faith in the healing propensity of the body and the intelligence of life.And my positivity and faith had been rewarded at every turn (even developing leukemia, which I would not have consciously asked for); but it was never the kind of faith and positivity that produced a reaction to, “You are MRD negative,” of, “Well, of course, I’m MRD negative.”I cried when he told me and it brings tears to my eyes now as I write this. I am deeply grateful.And, along those lines, I have taught mindbody medicine concepts for over 20 years and was pleased to find nothing changed with being diagnosed with an illness that has a 25% five-year survival rate. I found, not surprisingly, I walked the talk. Yet, you don’t know how solidly your ship is moored until there’s a storm.As interesting foreshadowing, for years, as one approach to mindbody medicine, I would discuss the hypothetical situation in which someone was diagnosed with a type of cancer that had their physician say, “The 5-year survival rate is 5%.” I would then say, “I wouldn’t say, ‘Oh, no! Those are terrible odds!’ I would say, ‘What did the 5% do?’’’ (My apologies for the complex, and possibly incorrect sentence structure.)I have had many profound blessings in the powerful life lesson leukemia brought to me.To address the question:The leukemia was caught on a yearly routine blood test before I was symptomatic.I am young and healthy, with no comorbid illnesses, and I really stood out on the Leukemia Specialty Care Unit because of my youth, fitness, and lack of comorbid illness.I got the best cancer treatment in the world, I assert.I’ve had an excellent attitude throughout.I never fought the leukemia. I was never inclined to. At the local cancer center, the narrative was everywhere about fighting cancer; even the wifi password had that rhetoric… yet, I could not abide by that narrative.I’m not suggesting that people not adopt that narrative; it’s fine with me if they do; it’s just not for me. I’m not going to start a “Fight Fighting Cancer!” campaign.I do want people to know there’s more than one narrative to adopt in the face of cancer. Pick according to your gut.I’ve said thousands of times: “What you resist persists.” I would not fight. I would listen.I viewed the leukemia as a messenger, and my job was/is to get the message.I have enjoyed Louise Hay’s work, and was aware of the fact she gave meaning to particular illnesses.I thought, “Leukemia is a childhood disease…” Hmmmmmmm…I had started guided journaling at What is Self Authoring? many months earlier, and had started with the Past module (there are also two for the present and one for the future… starting with the past made the most sense to me…) but, I quickly fell into procrastination…One obvious message was, “I wouldn’t do that if I were you…”, meaning, I got one message as, “Don’t keep putting off deep work.”Now, acute myeloid leukemia is relatively rare with about 20,000 newly diagnosed cases a year. That’s an incidence of 0.006%. It’s rare.But, things would likely be much darker (which sounds weird to write, because I can’t say they’re dark (though I can admit if one looks at the five year survival rate for AML, one would be inclined to say they’re dark… but, that’s a statistic, and part of good mindbody medicine is not being negatively influenced by stats…)) if I hadn’t been getting yearly routine labs.TLDR:Get yearly routine labs like a CBC and complete metabolic panel.The risk/benefit ratio argues for it.Think of it as insurance… you definitely want to have it, even though you don’t want to use it.Extra credit edit:So as to exclude as few readers as possible, I am adding an important point…I have used the word, “blessing” more than once, and said that there is meaning in this life challenge/lesson, thereby asserting/strongly implying it’s not random; we don’t live in a strictly mechanical Universe, in which we humans are machines that break and consequently go to doctors that intervene on our behalf and restore us to health.I was ultimately convinced of that mechanistic worldview until the age of 23. I no longer believe in or inhabit that worldview… but no matter…I’m working on a reply to the gentleman’s comment in which it’s asked what I think caused the leukemia.My reply involves logic I learned from my mother, an adept at logic. She changed her worldview late in life with logic.She told me one day, she had done a thought experiment in which she made a matrix of cells… the particulars will be in the reply when I post it.It is the particular thought exercise that’s relevant here:Let’s say you can’t abide by the notion of an actual blessing, or the idea there’s meaning to be mined in a disease, especially a life-threatening one like leukemia, you can still potentially get the value of that system/belief through this exercise:Let’s construct a matrix of four cells: 2 rows, 2 columns…I’m blessed really/I’m not actually blessedI believe I’m blessed/I reject the possibilityThen stand in each cell and look out at the world as if those conditions are so… what do you see? Is that possibility empowering?You see, it isn’t the truth that I was blessed and it isn’t the truth there is meaning, not randomness, in the leukemia… it’s a powerful place to stand.For the strictly “If I can’t see it in a lab, it doesn’t exist,” Do you want to be empowered, or do you want to be right? Or, if your health isn’t good, do you want to be healthy, or do you want to be right?Consider everyone is a house with four rooms: physical, mental, emotional and spiritual.In the modern world, you risk falling prey to the paradigm, the physical level of reality is all there is… It’s all matter and energy… if you can’t see in the lab it doesn’t exist.That worldview may be true, and obviously, it may not be.If you hold yourself as a house with only one room, physical, which gives rise to the illusion of the other three rooms and that’s not the case, there may be a dear price to pay.EDIT (April 16,2019):I can’t say I’m about to add materially to my answer of the question; however, I can see how the reader might be curious as to what’s up as of today… I don’t remember when I wrote this; I see my last update was February 16th.There have been three excitements and one very sad loss since I last updated. I’ll end with the loss.About six weeks ago, after receiving a unit of red blood cells, an infusion which took about two hours, I drove home and sat on the couch. I started to feel cold and hot at the same time. Cold won out and I got underneath an electric blanket and turned it on. Very shortly I was having hard chills.My instructions from MDA since my December discharge were, “Go to the ER if your temperature hits 101 or more.” I didn’t have to take my temperature. My wife drove me to the ER. It was a Friday afternoon and the ER was packed. Getting into the ER was fun; because I have staff privileges there, but the staff up front and the triage nurse don’t know me from Adam. So, I went in the back doors of the large ER, bald, with an overnight bag slung over my shoulder and said, “I’m Dr. Murphy. I’m in treatment for leukemia and I have a fever.” Most of the dozen or so doctors, nurses, technicians and unit clerks behind the counter stopped what they were doing to stare at me. I stared back at them. Eventually, a nurse broke the deadlock. “17 is open,” she said stepping out to escort me.I was deathly ill. All the routine things… blood cultures, chest xrays, etc. were done, looking for a possible source of infection.For the next three days I lay in the dark, sleeping as much as I could. They left me alone, which I thought was odd, but appreciated. At MDA I don’t think they would have let me lay in the bed 24/7, and didn’t even when I had RSV (another story).Monday rolled around; nothing had grown in the blood cultures; and, I had started to feel better. About 11 am, having enjoyed a great rapport and relationship with everyone there, I said politely to the nurse, “Um, I’m going to be discharged. I just need to know whether it will be AMA or not.” 10 minutes later I was signing routine discharge orders, and I went home. I felt like crap.In retrospect, the most likely explanation was a non-hemolytic transfusion reaction, something that occurs in about 1 out of every 1,000 RBC infusions. This can occur if WBC’s stow away in a batch of inadequately washed RBCs. They cause a cytokine reaction, the kind of thing that makes you feel awful when you have the flu.Gradually, over the next few days, my energy came back.The second excitement was going back to MDA on a Friday, my chemo rounds always start on Friday, and had labs in the morning to prep to see Dr. P, who would then order the 3-day round of chemo.My WBC was below 1,000, even though, due to circumstances, I was on Day 35 of a cycle. Being in a clinical trial at MDA, there are protocols and guidelines and chemo was off; it couldn’t proceed.Once again, Dr. P predicted the future. He said, “We’ll do a bone marrow biopsy; you’ll still be in remission. You’ll go home. Have a great weekend. Come back Monday morning. We’ll do labs and give you a shot of Neupogen Monday and Tuesday mornings, and we’ll restart your chemo on Wednesday.”That was an exciting weekend; because, while the blast count was likely ready Friday afternoon, no one was there to read it. And, while I mentioned a couple of potentially arrogant sounding behaviors around febrile neutropenia hospitalization; I’m not the type to be inclined to try and get the results before Monday.I was able to think positively throughout most of the weekend. I did allow my mind to think about a recurrence, but not to dwell on that possibility. I wasn’t in denial; I knew the results of the biopsy could be bad news staying alive-wise. But again, I mainly stayed in positivity and continued to visualize my 90th birthday party (my father, Stu’s 90th birthday party is next month) and to affirm, “I am so happy and grateful now that I’ve released the patterns that gave rise to the leukemia.”Monday morning, after having had my labs, I was sitting and waiting in the 8th floor leukemia waiting area, waiting to be called back for an injection of Neupogen, my cell phone rang. It was Dr. Islam. “Your blast count is 2%.”I cried with joy, once again, as I did when he told me, “Your MRD is negative. I have never seen an MRD negative patient at Day 21,” months before.To be continued… fatherhood calls at the moment…there’s more coming… and… 95% of what I write on Quora is via iPhone… somewhat constraining…My two older sisters and I with our father at his 90th birthday party last month, May 2019. He’s a huge inspiration, and not just because that’s his house we’re visiting and he’s had CLL for ten years and has only accepted monitoring of it.I’m coming up on 6 months complete remission. There’s much more to write; and, my commitment is that what I write make a difference for you.And, as promised above, there’s more to the story and I will flesh out what I believe made the difference in the face of a potentially terrifying disease…Today, my hair, like springtime blossoms, is sprouting again… a sign of the life force, irrepressible, pushing up through the cracks in the sidewalk…Here’s to New Life……and again, more to come…Edit: July 4th, 2019Today, the 4th of July, enjoying Life. I’m 60 now… my hair’s sprouting… the sprouting started this Spring after the chemo was finished… I gave that timing meaning… Springtime… new life…I intend to share more about this experience, and yet, I’m not sure this is the place to do that given the original question.So far, it has been a pleasure to have this forum to share my experiences with leukemia and everything related. If you have a suggestion as to a better forum/platform to share my knowledge, experience and hope with regard to leukemia, let me know.EDIT Saturday, July 27, 2019:I had surgery Thursday to have a myringotomy and tympanostomy tube placed in my left ear. It went perfectly.Fluid filled my left middle ear during my last hospitalization (for febrile neutropenia) in April. There were two complications from that hospitalization, I presume from high dose IV vancomycin and cefipime… a sudden and persistent left ear effusion and neuropathy of my distal feet bilaterally.The tube has all but resolved the effusion (it’s present in the morning, but drains within and hour or two). And the neuropathy, which consists mainly of the sensation my socks, no matter what their fabric, are filled with sand in the toes, and there is pain at times, increased initially with hard shoes and jogging. However, the jogging actually seems now to be a force for its resolution.I set a goal of running a 10K by September 29th, a goal RunKeeper helped me to decide on. Thanks to my varsity tennis playing son, Elliot, for that app tip.I had preop labs Tuesday, and coincidentally, two month followup labs for my heme/onc, Kavita Nirmal, on Wednesday. Not surprisingly, they were both very close…WBC 4.1Hgb 16Platelets 157,000It’s all good.EDIT Thursday, September 12, 2019:Reporting in for the curious…My post above starts with the yearly routine labs I had done September of last year, 2018. That’s cool, and relevant to the question.I’ve had two haircuts since my nuked hair decided it was OK to start growing again. Gone is the childhood fear of the barber or stylist getting it too short.I’ve run 5 days a week since July 21st, and I am registered in Texas Oncology’s Celebrate Life Survivor’s 5K on the 28th.There are two big benefits of running 5 days a week.One is the health and fitness benefit which is enough on its own.The other is, who I am for myself today is larger than who I was when I was saying, “I need to start running again,” for SEVEN years. (I was shocked about 4 months ago, in a moment of self-clarity, I caught myself running that line of bullshit past myself, and I stopped and asked myself, “When was the last time I exercised regularly?” …2012. Damn, Dude. You’ve been saying that to yourself for SEVEN years.)About 3 months ago, I started making the bed if I were the last one out. I’d heard Dr. Jordan Peterson recommend this one before solving any of the world’s problems. “Make your bed.”About a month later, during breakfast with my varsity tennis playing son, I downloaded an app, RunKeeper, he’s using to log his many runs.It started pressuring me to run a 10K in a month. I reacted, “I’m 60 years old. I’m not running a 10K in a month… I’ll run one in two months,” and on July 21st, I started running 5 days a week.Another recent shift in who I’m being in the world is manifested by the fact that I’m writing again.UPDATE: September 30, 2019I beat my oncologist in a 5K this weekend! Sorry, Dr. Nirmal. Good run!Not that long ago, my hemoglobin was 7 and I got winded climbing a flight of stairs. Now it’s 17 and I can run a 5 kilometers!UPDATE: October 25, 2019:It just occurred to me it is getting close to the one year mark that I went to MD Anderson for the first time and I don’t think I’ve adequately acknowledged them.To me, and probably by objective measures, MD Anderson is the best cancer treatment center in the world. It must be one of the largest with over 20,000 employees and over 15,000,000 sq ft of space. Yet, it is one of the best run organizations I’ve ever seen of any size. That’s important. But, not as important as the care and concern I saw everywhere. The ethos there is healthy, upbeat, nourishing and inspiring.In particular, I want to acknowledge and thank to a depth appropriate to one given to someone who participates in literally saving a life. Naveen Pemmaraju, thank you for saving my life. I am the father of a now 3-year-old, precious boy. I am also the father of two other boys, 19 and 17, who shouldn’t lose their father, either; yet, the biggest save was saving the life of the father of this precious 2-year-old boy.December 13, 2018 - Just discharged from MD Anderson’s Leukemia Specialty Care UnitThis is what I’m talking about, Naveen. This is such a huge gift. Words aren’t adequate to express the depth of my gratitude. Thank you.Rabiul Islam, thank you for your relentless close support and encouragement. You repeatedly went above and beyond calling me on my cell and keeping me informed. And, the moment you told me I was MRD negative is one of the happiest moments of my life. You didn’t have to add, “I have never seen an MRD negative patient at Day 21.” But, you did and that made a deep, profound positive impact. It has been some of the best medicine mentally and emotionally, and probably physically and spiritually. All boats rise with the tide. What a profound gift. Thank you.Michael Andreeff, thank you for who you are personally and professionally. You were my first inpatient physician contact, and it was, interestingly, on Thanksgiving Day. You walked into my room with an entourage of residents and fellows and said, “Who are you, and vot are you efen doing here?” (Sorry, that’s my recollection of your delightful German accent.) I loved our banter. When I told you I was a psychiatrist, you told me, “I vanted to be a psychiatrist, but I vound up being this.” You were part of the development of flow cytometry in the early days in Heidelberg. Flow cytometry told me the leukemia was gone down to a resolution of 1:1,000,000 WBC’s compared to 1:20 resolution possible with a microscope alone. Thank you for the quintessential physician that you are; and, thank you for having me look forward to witty banter every morning at morning rounds. What a delight.Zeev Estrov, thank you for who you are. Two memories stand out. You came into my room the morning after my Day 21 bone marrow biopsy and said, “Go home. You don’t need to be here anymore.” And, after I started to recover from the seeming near death experience from RSV, I perked up for your morning rounds; and, you and your entourage of residents and fellows came in. I had finally had a good night’s sleep and told you so. You turned to your students and said, “That! will tell you more than any lab test.” To me, such a brilliant moment of teaching. In medical school, I remember the lesson of one of my professors, “You treat the patient, not the labs.” You are another star in the MD Anderson firmament.To the staff of the 12th floor Leukemia Specialty Care Unit and to the nurses who inserted my PICC line, I cannot say enough to thank you and express the gratitude I have for my treatment there. It is a difficult thing to be a young man, otherwise healthy, diagnosed with a life threatening disease and facing an uncertain future, knowing it included, at the least, chemotherapy and weeks of isolation. I don’t think I’ve told anyone this because it sounds weird. When Dr. Estrov told me to go home on Day 22, I was disappointed. That’s partly your fault. Good job. I’d say, “Keep it up,” but that would be silly. It’s who you are.To the 8th floor Leukemia Clinic and staff, thank you for always being friendly, upbeat, professional but not dry or stiff, and always being a well-oiled machine. Wow. You and your clinic and lab are part of the reason that the thought occurred to me, “This is the best run organization I’ve ever seen of any size.” Amazing. Thank you.To my individual nurses, inpatient, outpatient and chemo, because all of you were so extraordinary in skill, compassion and presence, I got to be right every time about how great MD Anderson is, every time. Every contact. Thank you.To the nurse who put in my PICC line, when I was the most alone and scared, Wednesday night, alone before Thanksgiving Day, thank you for your flawless insertion of a central line, your calming bedside manner, and thank you for telling me you had multiple myeloma years before and remain disease free. (The only thing that could have made the whole experience better, for the next patient, consider leaving out the part about your PICC line getting infected. :) ) Thank you.There are so many people to thank. Right now I am acknowledging you, MD Anderson. Thank each and every one of you. I am weeping now in gratitude as I get in touch with the magnitude of the gift and how you gave it. Jackson just turned 3. He will thank you one day. For now, I thank you on his behalf.Oh my! There are so many people to thank!To be continued…EDIT: January 7, 2020An interesting “problem” is arising here… the longer I live, the less appropriate the word “recently” in the opening line of this answer is… in December, less than a month ago, I went back to MD Anderson for my first checkup since July. All is well and my MRD continues to be negative over a year after entering remission. Thank you, Dr. Pemmaraju and all of you at MD Anderson.And, as I mentioned above, there are many more to thank. I will address two of you now:To Nortin Hadler, MD, of UNCSOM. Nortin, your startlingly deep compassion and ability to read between the lines of what I was saying moved me to tears. You heard me asking things I didn’t know I was asking. Your clinical acumen and profound compassion were so intense at times it was hard to be with. You encouraged me at a deep level. Not long before I was diagnosed with AML, I wrote you to thank you and tell you how much your work has meant to me as a physician and reader. I didn’t expect a reply, let alone one of such thoughtfulness. Then, during my struggles with leukemia, you shined as a lighthouse of steadfast personal and clinical wisdom. Thank you for hearing what I didn’t even know I was expressing and addressing it.To Steve Derdak, DO. My sister, one of the finest physician’s I know, refers to you as the smartest physician she knows. That’s quite an endorsement. I still remember visiting you when you were in medical school and thumbing through your Harrison’s Principles of Internal Medicine to find it thoroughly highlighted. Years later as an intensivist at Brooke Army Medical Center you brought your vast clinical experience to me personally in a very frightening and challenging time. Thank you for being there. And thank you for your sweet, personal bedside care of Marty at our home during her final days.And thank you Quorans for your views and upvotes. I deeply appreciate it!More to come.Edit: June 21, 2020Went back to MD Anderson a couple weeks ago for a routine followup. Results were all good except MRD.CBC great. Bone marrow aspirate showed 1% blasts (normal is < 5%). All very exciting. 6 days out a notification popped up on my phone that Dr. Pemmaraju wanted a telephone appointment with me.That was not welcome news, and I couldn’t wait until the next day to find out why. I called his PA, Rodney, and learned the news. My Measurable Residual Disease is now positive. I am in morphological remission, but not at the level of resolution provided by amazing technology.Dr. Pemmaraju’s recommendation is 3 rounds of venetoclax and azacitidine (VEN/AZA). Mild chemo… he used the analogy that the previous chemo is like a bomb and the VEN/AZA is like a Predator drone strike.He said my MRD will turn negative again. And he referred me back to the Stem Cell team.No problem seeing the Stem Cell team again for a consult but I was dead set against it.My thinking was why would I sacrifice feeling great for the devastation SCT is?And I’ve already created this narrative of how powerful mind/body medicine can be…It wasn’t an easy choice at all. And at one point in the last 16 days of wrestling with my circumstances I decided to do SCT but from a place of fear. (There’s a powerful distinction between choosing and deciding worth taking a look at.) Then I decided against it.At some point I looked at the scientific research and statistics on it; then I watched some inspirational videos by successful recipients and using the rhetoric from one of those people, switched to viewing SCT as an investment in my future. And I went back to my matrix of 4 cells and considered each possibility it boiled down to which mistake I would rather make…Have a stem cell transplant when I could’ve done well using mind over matter after allorNot have a stem cell transplant when in fact I needed one to prevent death by AML progression?Decision is derived from the root word “cide” or to kill off. In a decision the circumstances and considerations determine the selection… you have a pro list and a con list and the selection is based on which list is longer. The alternative is killed off by the considerations.Choice: To select freely and after consideration.Initially I decided no. Then I decided yes. All of that occurred in a field of fear and suffering.At some point I chose SCT and a feeling of peace came over me.I am at peace with the choice and the outcome.Once again, I think I will fare exceptionally well and I know that isn’t a given.I realize one outcome is death by overwhelming infection, organ failure or graft vs host disease.That is out of my hands. I accept my fate. I choose it.And I am happy to share the journey ahead.Edit: August 3, 2020Day 1 Cycle 2 of venetoclax and azacitidine. Mild chemo. The first cycle of this had few side effects and no hair loss. It was surprisingly hard on my kidneys… the cycle is Monday through Friday every 28 days (if possible) and my creatinine spiked to 1.5 on that Friday. It returned to normal and a nephrology consult concluded it was a reaction to the venetoclax. Dr. P concluded it was an idiosyncratic reaction and doesn’t think it’ll happen again.Edit: November 3, 2020Getting Busulfan at MD Anderson this morning in preparation for a stem cell transplant.I am quite well and continue in morphological remission. My MRD turned positive in June for the first time since December 2018. I’ve accepted MD Anderson’s recommendation for a SCT. It’s been their recommendation all along, but until June insurance wouldn’t pay for it and I didn’t want it. However, confronting a dead canary down here in the mine, two thoughts persuaded me.I have three boys, the youngest is four. In that context I look at this as an investment in the future; and, I’d rather have it and not need it than need it and not have it… I met a wonderful man in his early 70’s, John, in an infusion room last year. Delightful. I got to talk to him at length twice. Delightful man. He looked well to me. However, his chemo had never gotten him into remission and he died very quickly. His death hurt deeply. I grieved his death and I could feel the pain of it much more acutely than my mother’s 8 years ago, something I think odd. Perhaps it was the reminder of my vulnerability.I remain optimistic and grounded in my choice and commitments.Today is the first day the thought, “I am a writer” occurred so consonantly. Perhaps the dawning of the reality of death, not necessarily of its immanence, but of its ultimate reality, shifted my audience from what others think to what I think. I’ve a story to tell. It’s for me and that others may benefit.“The ill person who turns illness into story transforms fate into experience…” —Arthur Frank, from The Wounded StorytellerFootnotes[1] Minimal/measurable residual disease in AML: a consensus document from the European LeukemiaNet MRD Working Party[1] Minimal/measurable residual disease in AML: a consensus document from the European LeukemiaNet MRD Working Party[1] Minimal/measurable residual disease in AML: a consensus document from the European LeukemiaNet MRD Working Party[1] Minimal/measurable residual disease in AML: a consensus document from the European LeukemiaNet MRD Working Party

An epidural steroid injection (ESI) is a minimally invasive procedure that can help relieve neck, arm, back, and leg pain caused by inflamed spinal nerves due to spinal stenosis or disc herniation. Medicines are delivered to the epidural space, which is a fat-filled area between the bone and the protective sac of the spinal nerves. Pain relief may last for several days or even years. The goal is to reduce pain so that you may resume normal activities and a physical therapy program.Who is a candidate?Patients with pain in the neck, arm, low back, or leg (sciatica) may benefit from ESI. Specifically, those with the following conditions:Spinal stenosis: A narrowing of the spinal canal and nerve root canal can cause back and leg pain, especially when walking.Spondylolisthesis: A weakness or fracture between the upper and lower facets of a vertebra. If the vertebra slips forward, it can compress the nerve roots causing pain.Herniated disc: The gel-like material within the disc can bulge or rupture through a weak area in the surrounding wall (annulus). Irritation, pain, and swelling occur when this material squeezes out and comes in contact with a spinal nerve.Degenerative disc: A breakdown or aging of the intervertebral disc causing collapse of the disc space, tears in the annulus, and growth of bone spurs.Sciatica: Pain that courses along the sciatic nerve in the buttocks and down the legs. It is usually caused by compression of the 5th lumbar or 1st sacral spinal nerve.ESI has proven helpful for some patients in the treatment of painful inflammatory conditions. ESI can also help determine whether surgery might be beneficial for pain associated with a herniated disc. When symptoms interfere with rehabilitative exercises, epidurals can ease the pain enough so that patients can continue their physical therapy.ESI should NOT be performed on people who have an infection or have bleeding problems. The injection may slightly elevate the blood sugar levels in patients with diabetes. It may also temporarily elevate blood pressure and eye pressure for patients with glaucoma. You should discuss this with your physician.If you think you may be pregnant, tell the doctor. Fluoroscopy x- rays may be harmful to the baby.Who performs the procedure?Physicians who perform epidural steroid injections include physiatrists (PM&R), radiologists, anesthesiologists, neurologists, and surgeons.What happens before treatment?The doctor who will perform the procedure reviews your medical history and previous imaging studies to plan the best approach for the injections. Be prepared to ask any questions at this appointment.Patients who take take blood thinning medication (Coumadin, Plavix, etc.) may need to stop taking it several days before the ESI. Discuss any medications with your doctors, including the one who prescribed the medication and the doctor who will perform the injection.The procedure is usually performed in an outpatient center using x-ray fluoroscopy. Make arrangements to have someone drive you to and from the center the day of the injection.What happens during treatment?At the time of the procedure, you will be asked to sign consent forms, list medications you are presently taking, and if you have any allergies to medication. The procedure may last 15-45 minutes, followed by a recovery period.The goal is to inject the medication as close to the painful nerve as possible. The type of injection depends on your condition and if you have metal rods or screws from previous surgery. The doctor will decide which type is likely to produce the best results.Step 1: prepare the patientThe patient lies on an x-ray table. Local anesthetic is used to numb the treatment area so discomfort is minimal throughout the procedure. The patient remains awake and aware during the injection to provide feedback to the physician. A low dose oral sedative, such as Valium or Versed, may be offered depending on the center.Step 2: insert the needleWith the aid of an x-ray fluoroscope, the doctor directs a hollow needle through the skin and between the bony vertebrae into the epidural space. Fluoroscopy allows the doctor to watch the needle in real-time on the x-ray monitor, ensuring that the needle goes to the desired location. Some discomfort occurs, but patients more commonly feel pressure than pain.

Today's gene therapy and its cost can only be understood in the context of its tangled history. Starting with promise in the 1980s, gene therapy got over-hyped in the 1990s until 1999 when two unanticipated tragedies in quick succession caused researcher and funding flight, and research stagnation during the 2000s. The first death attributed to gene therapy, Jesse Gelsinger, and the first cancers directly attributed to gene therapy, when French SCID (Severe Combined Immunodeficiency Disorder) children treated with gene therapy developed leukemia, these two events increased regulatory burden, reduced the players in the field, investors fled, and timelines and costs increased. Resurgence began with modest successes in 2008, accelerating with the 1st EU gene therapy approval in 2012.I. Jesse Gelsinger: Insufficiently road-tested gene therapy could cause deathJesse Gelsinger was diagnosed with a rare genetic disorder called ornithine transcarbamylase deficiency (OTC). ~ 1 in 40000 babies are born with OTC (1), which prevents breakdown of ammonia, a normal metabolic byproduct. Untreated ammonia build up can eventually damage the brain, leading to coma and death. Jesse's OTC was milder, controllable by strict diet and medication.Having been rejected when he'd tried to sign up a year earlier, as soon as Jesse turned 18, he signed up for a UPenn (University of Pennsylvania) gene therapy Phase I clinical trial, conducted by its General Clinical Research Center, with PI (Principal Investigator) Dr. Mark L. Batshaw, co-investigators Drs. James M. Wilson and Steven Raper.On September 13, 1999, Jesse was injected with 3.8 trillion adenovirus particles (2), considered the highest adenovirus dose ever given. Adeno, then a common gene therapy vector (carrier), is typically associated with the common cold and conjunctivitis. In Jesse's case the vector was a partially inactivated adenovirus in which the OTC gene had been inserted. It was directly injected into his hepatic artery to ensure direct delivery into the liver, liver cells being the target for OTC gene insertion.Soon after vector injection, Jesse developed a high fever of 40oC, and tachycardia, nausea, vomiting, muscular pain (3). Tests showed liver injury on the first day itself (4), and Jesse went into a coma after 2 days (5), developing acute respiratory distress syndrome (ARDS) requiring artificial ventilation (3). His organs started failing on the 3rd day and he was taken off life support on the 4th day. He died on September 17, 1999.Ib. Jesse's autopsy results: confounding factors suggesting another viral infectionAutopsy showed very large numbers of virus in spleen, lymph nodes and bone marrow (6), suggesting systemic virus spread triggered systemic inflammation leading to organ failure.Jesse's autopsy also showed that his bone marrow was depleted of erythroid precursor blood cells (6), something that couldn't have happened overnight.There was also abnormal maturation of precursor leukocyte lines (4) suggesting that Jesse likely had another ongoing infection, likely a parvovirus type B19 (5), when injected with the adeno (6).Ic. What happened? Apparently several protocol violations.What's a safe virus dose for gene therapy? Did Jesse get too much virus, levels that would have inevitably provoked its well-known toxic side-effects (1)? Dose emerged as a major factor needing optimizing in gene therapy.Another source of confusion regarding cause became the virus vector used which upon examination turned out to have duplicate sequences not engineered in the original virus vector (7). No one seems to know why or how this happened. Costlier long-term follow ups of viral vectors thus became necessary in future studies.Jesse had high levels of blood ammonia when admitted to hospital, higher than the study cutoff level (6). Researchers injected drugs to lower his blood ammonia and proceeded with the study anyway. FDA determined this broke the rules of conduct.Subsequent investigations uncovered that adverse side effects hadn't been reported. Another patient in the study of 18 patients had suffered severe liver damage (8) before Gelsinger got his injection, and some monkeys who'd received similar, not the same, Rx, had died but no one at the NIH RAC (Recombinant DNA Advisory Committee) was ever informed about these serious adverse events.The original protocol proposed injection into a distant blood vessel to minimize liver trauma. Direct injection into the hepatic artery, a major protocol change, was never approved by the the NIH RAC, which is supposed to approve all human recombinant DNA experiments before they begin, another protocol violation. Route emerged as a major factor needing optimizing in gene therapy.Id. Who to recruit in gene therapy clinical trials?Until Jesse, human gene therapy studies had mostly chosen terminally ill patients with no other chance of survival.The OTC study was designed to help new-born OTC patients, i.e., originally the protocol was intended for dying babies with no other options (1). However, the IRB (Institutional Review Board) that examined it rejected it on the grounds that it was unreasonable to expect parents to give informed consent with their babies' lives in such danger (1). Thus, this Penn study became the first to try such a high-risk procedure on a relatively healthy person such as Jesse.Ie. Why so much confusion?Confusion regarding regulatory oversight. Not just FDA but also NIH, specifically its RAC. Obviously, crucial information, and checks and balances fell through the cracks due to this strange dual regulatory system. Jesse's death revealed crucial regulatory oversight gaps, gaps that then needed filling to restore confidence in gene therapy.II. French SCID gene therapy: Inappropriate viral vector could cause cancerJust one year after the Jesse Gelsinger tragedy, French scientists reported successful treatment of two SCID-XI children (9). The severity of their immunodeficiency means that SCIDs need to live in an extremely isolated environment.Scientists injected a different virus vector, MoMLV (Moloney murine leukemia virus), carrying the curative gene (Gamma chain cytokine receptor subunit), into the patients' lymphocytes. Unlike adeno, MoMLV, a retrovirus, directly integrates its genetic material into the host cell DNA.They expanded these cells in vitro through cell culture, then injected them back into the patients. Both patients survived and could lead normal lives. Several other patients were subsequently treated and also cured.Unfortunately, of the ~11 early patients treated with the MoMLV vector, 3 developed leukemia directly as a result of the gene transfer procedure (10). In all these patients the MoMLV vector had apparently integrated specifically near the LM02 (LIM domain only) gene, activating it and setting the leukemia in motion.This leukemia result meant that gene therapy was just not ready for prime time yet since scientists needed to go back to the drawing board and develop safer virus vectors.Gene therapy's nuclear winter during the 2000sAs a result of these tragedies and in stark contrast to the 1990s when some early successes inculcated unrealistic expectations, the 2000s became a 'lost decade' for gene therapy (11). The ramifications included a chilling effect. Many researchers left the gene therapy field and funding dried up, both in academia and in industry. This tragic history now means greater regulatory burden, fewer researchers who stuck it out, and longer timelines towards Rx, all factors that drive up cost.Gene therapy's slow but steady comeback2008 till date show a steady drumroll of modest successes for congenital eye diseases (12, 13), hereditary immune system disorders (14, 15, 16), cancer (17, 18, 19), and hemophilia B (20, 21).Gene Therapy product approvalsIn China: In 2003, SiBono Gene Tech Co.'s Gendicine™, a non-replicative adenoviral vector with the E1 gene replaced by a human p53 cDNA, approved for head-and-neck squamous cell carcinoma (22, 23). Approved by China's State Food and Drug Administration (SFDA) (24), efficacy of this Rx has been questioned (24, 25), not a good portent for gene therapy for cancer. Two years later, SFDA approved Oncorine™, a conditionally replicative adenovirus developed by Sunway Biotech Co., for late-stage refractory nasopahyngeal cancer (26).In the EU: In 2012, the EU approved UniQure's Glybera for lipoprotein lipase deficiency (LPLD) (27). LPLD prevents the body from processing dietary fat.At this point it's appropriate to look at a brief history of gene therapy's 1999-2000 lows (in orange) and more recent highs (in blue, see figure below from 28).Commercial prospects for gene therapy circa 2015 look quite promising (see figures below from 29).UniQureDutch company whose main product, Glybera, its LPLD gene therapy Rx, was approved in 2012 in the EU.Phase II trials ongoing in the US.Also working on hemophilia and congestive heart failure, but only in Phase I at present.Building a large production facility in Massachusetts for viral gene therapy Rx manufacture.Funding: €44.5 million from Collier Capital, Glide Healthcare, Forbion, Chisesi Farmaceutici, the last involved in drug commercialization and marketing.:February 2014: IPO raises $91.5 million.Listed on the US NASDAQ.Bluebird BioWorks on adrenoleukodystrophy (ALD, a degenerative nervous system disease), blood diseases such as beta-thalassemia, where defective hemoglobin necessitates regular blood transfusions, and sickle cell, and cancer.The ALD Rx is furthest along, in Phase II/III.June 2013: IPO raises $116 million.Also raised $134 million from research institutions, grants and venture capital.Third Rock Ventures currently owns 28.9% of the company.Xenon PharmaceuticalsTwo-tier strategy.Work solo on orphan diseases.Partner with big pharma on more common diseases.Has licensing agreements with Genentech, Teva, Merck.The Teva partnership for osteoarthritis is most advanced (Phase II clinical trials).Also has a stake in UniQure.Has raised $265 in funding.November 2014: IPO raises $36 million.Voyager TherapeuticsStarted by Third Rock Ventures in February 2014, and managed by Mark Levin, one of Third Rocks' co-founders.$45 million investment.Unlike other startups, Voyager has a group of highly experienced researchers who'veWorked on CNS disorders for years.Have specialized knowledge of AAVs (Adeno-associated viruses), a safer alternative to adeno.Crucial gene therapy questionsA. Why use viral vectors? Necessary evil for efficient gene delivery into cells until something better and safer comes along.Genes can be delivered into cells by non-viral means. For e.g., liposomes (30, see figure below). Problem is cell uptake efficiency is very low, and gene expression is also transient (30, see figure below). By improving cell entry and expression, viral vectors as gene delivery vehicles could overcome such seemingly insurmountable problems. Of course, in hindsight their risks are also considerable, ranging from death to cancer.B. Is a gene therapy cure permanent or rendered temporary by viral vector-induced immune responses?Other issues that remained woefully under-studied until Jesse's death were the viral vector-induced immune responses. As we saw with Jesse, these could be excessive and unsurprisingly, adenovirus has fallen out of favor as a gene delivery vehicle. However, even the newer vectors cannot guarantee no immune response, and another problem with immune responses is they could kick out the vectors hence eliminating gene expression, rendering the cure temporary, not permanent. Thus the promise of cure from viral vector gene therapy is not so clear-cut.Potential for immune responses throws doubt on gene therapy promises of cure. This means that one-time Rx may not really withstand scrutiny in every single instance. Viral vector, dose, tissue target, injection route, these are but some of the key factors determining possibility, strength and duration of potential immune responses, responses that could eliminate the viral vector and its curative genetic cargo.OTOH, cure from one time Rx is far more realistic with CRISPR/Cas9. However this technology is years away from commercialization. Currently there are 3 companies working on CRISPR/Cas9 for gene therapy, Editas Medicine, Intelia, and CRISPR Therapeutics. None of these companies have a disease focus as of yet but are at the earliest stage of technology development.C. Gene therapy costs cannot be one size fits all.Current estimated costs for genetic disease Rx are quite astronomical. These are lifelong Rx, not cures.Hemophilia requires weekly prophylactic clotting factor Rx, estimated to cost $300,000 per year (31). Osteoarthritis costs ~$6000 (including insurer cost) per person annually in the US (32). Lifetime cost for sickle cell is ~$460,151 (33) while average annual cost for ALS is ~$63,692 (34, 35).OTOH, gene therapy is the only way to treat genetic diseases permanently, at least in theory. However, even here, IPOs indicate that companies with products closer to commercialization, i.e., in Phase III or later, did better. In other words, the market for gene therapy has low risk tolerance, perhaps a lingering effect of its tragic and tangled history (see figure below from 29).Among current gene therapy companies, UniQure is one of the few with an approved product, Glybera for LPLD. With a potential total of a mere 150 to 200 patients in Europe, UniQure is offering full course Glybera Rx in Germany for ~$1.35 million (36).For diseases that affect such a tiny proportion of the population, any Rx that promises cure is already the best that they could hope for since small population numbers deter multiple commercial entities from investing in R&D for multiple Rx or cures. A captive market, in short.Situation is different with diseases with a much larger population base, such as hemophilia and sickle cell. Multiple public and private entities are actively researching multiple Rx and/or cures so a large ticket price is less likely to be tolerated.This is where governments, insurers and patient lobbies are likely to step in and develop newer approaches such as payment plans rather than one-time payment (29, 37, 38).BibliographyMcGee, Glen. "Hasty decisions in the race to a cure: Gene therapy study proceeded despite safety, ethics concerns.' Washington Post 21/11/99: AO1. Hasty Decisions in the Race to a Cure?Lehrman, Sally. "Virus treatment questioned after gene therapy death." Nature 401.6753 (1999): 517-518.Experts probe U.S. teen’s death after gene therapy Maggie Fox, Health and Science Correspondent. December 8, 1999. Experts Probe UPenn researchers report: preliminary findings reported on the death of Jesse Gelsinger. December 2, 1999. Penn Researchers Report: Preliminary Findings Reported on the Death Of Jesse GelsingerPage on www.biosafety.beMarshall, Eliot. "Gene therapy death prompts review of adenovirus vector." Science 286.5448 (1999): 2244-2245.Smaglik, Paul. "Tighter watch urged on adenoviral vectors." Nature. 12/10/1999. Vol. 402:707.Adams, Chris and Robert Langreth. "Gene therapy researchers disagree with government over possible lapses." The Wall Street JoumaI12/9/l999. Gene-Therapy Researchers Disagree With Government Over Possible LapsesCavazzana-Calvo, Marina, et al. "Gene therapy of human severe combined immunodeficiency (SCID)-X1 disease." Science 288.5466 (2000): 669-672. Page on ncsu.eduFischer, Alain, et al. "LMO2 and gene therapy for severe combined immunodeficiency." N Engl J Med 350.24 (2004): 2526-7. Page on nejm.orgGene Therapy's Second ActHauswirth, William W., et al. "Treatment of leber congenital amaurosis due to RPE65 mutations by ocular subretinal injection of adeno-associated virus gene vector: short-term results of a phase I trial." Human gene therapy 19.10 (2008): 979-990. 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Science 314.5803 (2006): 1233-1233.Guo, Jerry, and Hao Xin. "Splicing out the West?." Science 314.5803 (2006): 1232-1235.Wirth, Thomas, Nigel Parker, and Seppo Ylä-Herttuala. "History of gene therapy." Gene 525.2 (2013): 162-169.Stroes, Erik S., et al. "Intramuscular Administration of AAV1-Lipoprotein LipaseS447X Lowers Triglycerides in Lipoprotein Lipase–Deficient Patients." Arteriosclerosis, thrombosis, and vascular biology 28.12 (2008): 2303-2304. Page on ahajournals.orgPage on referencepointpress.comPage on hrpub.orgLimberis, Maria P. "Phoenix rising: gene therapy makes a comeback." Acta biochimica et biophysica Sinica (2012): gms036. gene therapy makes a comebackSkinner, Mark W. "Gene therapy for hemophilia: addressing the coming challenges of affordability and accessibility." Molecular Therapy 21.1 (2013): 1. Page on nih.govKotlarz, Harry, et al. "Insurer and out‐of‐pocket costs of osteoarthritis in the US: Evidence from national survey data." Arthritis & Rheumatism 60.12 (2009): 3546-3553. Page on wiley.comKauf, Teresa L., et al. "The cost of health care for children and adults with sickle cell disease." American journal of hematology 84.6 (2009): 323. Page on cellods.comWahl, M. MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD. MDA Quest, 2014. MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMDLarkindale, Jane, et al. "Cost of illness for neuromuscular diseases in the United States." Muscle & nerve 49.3 (2014): 431-438.Burger, L and Ben Hirschler. First gene therapy drug sets million-euro price record. Reuters, 2014. Exclusive: First gene therapy drug sets million-euro price record.Page on aei.orgPage on aei.orgThanks for the A2A, Jonathan Brill.