Yesterday I received a letter from Emory Healthcare notifying me that there had been a security breach affecting patients’ electronuc medical records and that I was one of the people affected. Two years ago after defamatory statements had been written … Continue reading
For my second post for #Blogmas 2017 I came across a story that every mother and father should read! A mother, Mandy Drew in Alberta Canada was told her daughter, Cheyenne was hopelessly ill and that she should “take her home and create memories.” Doctors threw up their hands and gave up on the little girl after she continued to worsen in traditional chemotherapy. Tumors were wrapped around vital parts inside her body, making the situation that much more complicated.
Her mother, faced with no options from her daughters treating professionals considered medical cannabis given the fact that at this point there was really nothing to lose. If she’d done nothing death was a 100% certainty! Although a little skeptical at the outset, Cheyenne’s mother decided to give it a try, but she had no idea that her daughter would be medically blacklisted nor the level of hostility she would receive from the medical establishment. One doctor who during a phone call asked Mandy what she was doing in her alternative treatment literally hung up on her when the mother told her she was treating her with cannabis oil.
Despite the rejection and anger directed at her for this treatment choice, the Alberta mother reported that her daughter began responding with just 1 gram per day. She began to notice her apetite return, her mobility improve, and eventually it was discovered that her tumors were calcifying (a sign of apoptosis, the scheduled death of the cancer cells)! Now at age 4 and having already beaten the odds, Cheyenne functions like any other 4 year old, is symptom-free, and doesn’t even have any awareness of her diagnosis.
Her mother appeared on this radio show which was posted to Youtube on January 24, 2007 to speak about her experience. The host also gives some very interesting information from research suggesting that many illnesses may be caused by a deficiency in the body’s own cannabinoid system. Apparently there is a lab in the US offering a test to see whether your illness(es) are due to this deficiency or dysregulation. Watch the video for yourself to hear this woman and her daughter’s amazing story!
Yes, medical blacklisting happens to children too, even dying children, and it’s a shame that doctors and the corporations they work for are so arrogant that they would turn their back on someone like this when they have nothing better to offer. Corporate healthcare has in effect taken the patient out of the equation, when in fact the patient (or parent when the patient is a minor) should have the last word when it comes to treatment decisions, and more often than not, the patient is correct about what is likely to work.
Whatever a doctors opinion on cannabis or any other treatment for that matter, he or she should keep an open mind and support the patient’s treatment decision. Most patients who have decided on a particular treatment they want to pursue do so after alot of careful reading, research, and thought. Therefore they should not be treated as crackpots or loose cannons when approaching their doctors.
These patients are already suffering and it only increases their suffering for a doctor to work at cross-purposes with a patient that he has stopped or refused to start treatment on. It is not only heartless, but unethical for a patient’s treating professionals to ostracise a patient for doing what they have to do to save their life or the life of a relative who is in their charge. It may be OK with a doctor to throw in the towel, but it shouldn’t be, especially when there are other things to try which he/she either have not looked into or flatly refuses to consider.
A doctor or a healthcare system should never be a gate-keeper between a patient and the possibility of improvement, preservation of or quality-of-life. To do so is in clear violation of the Hippocratic Oath. Healthcare professionals must keep in mind at all times that they are in this field to help others. What they do in the course of any given day should not be about their own needs and biases, but should be undertaken for the sole benefit of the patient. Sometimes that means being willing to put your own opinions aside and giving the patient the means to reach further without impedence.
The practice of medicine should be a selfless act, not one whose primary motivation is to save face. In this day and age physicians are not expected to know everything, (and get a clue guys, the cat’s out of the bag! Patients are well aware that there is no way that a doctor seeing patients all day long back to back has the time to read up on all the latest research. Many patients now know how to read medical journal articles and have to become experts in their own conditions in order to ensure they get the best treatment available, so it’s high time that was acknowledged.
And medical professionals, The crackpot defense no longer holds water anymore. Instead of shutting patients out and shutting them down when they engage you in discussion about a certain treatment, or diagnostic possibility, instead of writing backhanded and snarky comments in a chart, why not treat them like the respected partner that they are and approach this undertaking as a challenge to be solved rather than a threat to your authority.
It’s not personal. It’s not about you. It’s about their best health, and their life.
It’s been 2 years now since that fateful day I entered the ER of Emory Healthcare. Back then almost nobody else was speaking out publicly in blogs and/or video and although it was common knowledge within the chronic illness community that these kind of things happens, mostly it was only discussed in groups and on forums with little exposure to the open internet. Search yielded almost no trace of the undercurrent that was about to explode onto the scene as patients quietly compared notes. It seemed each patient this happened to was contained in their own little bubble of isolation and only 1 organization existed at that time to advocate on behalf of patients whom medical corporations targetted.
The mainstream media didn’t mention the thousands of cases that were routinely brushed under the rug and when approached tiptoed around the issue as though their bread was buttered on the wrong side of the law, so they dared not speak of it. That 1 organization that existed at that time was overrun with requests for help, not only from US citizens but from patients all over the world and its director was in the process of putting it on hold until she could complete a book on the subject.
Nobody else was really organizing around this insidious but deadly problem inextricably woven into the very fabric of our society, so it became my mission to get the ball rolling and start a concerted effort to change the law.
For those of you just now subscribing to my blog and/or coming across it for the first time, a short re-cap. I began having new symptoms outside of my already diagnosed chronic illnesses that progressed very quickly over the period of about 1 year in 2014-2015. They became so severe that I ended up hospitalized for 11 days because of severe near syncopal episodes, blood pressure wildly erratic, insatiable thirst and the taste of salt in my mouth, lower GI spasticity, severe myoclonus, other abberant movements, weakness, spasticity, and difficulty walking.
While in that particular hospital I was treated for Dysautonomia (a dysregulated autonomic nervous system) a condition which likely may have been causing some or even all of those symptoms. One of the doctors there sat down at my bedside one day during rounds and talked with me about my dysregulated blood pressure and the other symptoms I was having and about treating it with IV saline. I had no idea at the time that that was an accepted treatment for dysautonomia. I had not yet read about it, but he explained that he had tried this for a few days when I first came in to test out if it would get the symptoms under control and found that I started to stabilize.
He went on to say that there weren’t alot of options to treat this autonomic dysfunction but that he’d noticed when he took me off the saline that my symptoms got worse, so he would like to put me on it continuously to see if I would stabilize again. I did notice that I had started feeling better for a few days but had no idea why. When he explained this to me it made sense and so I agreed to it.
I was grateful to have something that worked. He put me back on it and wrote the order for it to be continuous, and sure enough, after about 4 more days I again began to stabilize. I was able to eat again, the thirst subsided, I was able to go to the bathroom more regularly, and the near syncope and dysregulated blood pressure became more stable again. I figured if that’s what it took to keep me stable, then so be it.
What I didn’t know is that this doctor failed to document what he’d said to me verbally and although he documented the order for continuous IV saline infusion, he did not state the reason nor the detailed rationale that he’d given me that he had tried this (what they call in medicine a “therapeutic probe”, something doctors sometimes do as a clinical diagnostic tool in which a positive response to a given treatment indicates that their diagnostic hypothesis was correct).
At the time my muscular symptoms were presenting like ALS so the admitting neurologist (another doctor) began the process of looking into that as a possible diagnosis. By the time I was discharged they were still unable to diagnose what was wrong but the admitting neurologisy suggested I go to some major medical center such as Mayo Clinic’s movement disorder clinic, since the system where I had been going for healthcare previously had not been aggressively routing me to appropriate referrals and I was rapidly becoming more and more disabled.
She told me that their facility (a smaller system than where I was getting all my outpatient care) was not advanced enough to do the more involved testing that would be needed to find out exactly what was wrong. I was discharged on a Saturday, the saline order was not written for home health as I was told it would be by one of the attendings, and just a few days later I ended up back in the same shape as when I went in. I awoke one morning feeling intensely faint even lying flat on my back, and no matter how long I waited for it to pass it would not.
I ended up back in the ER, this time at the hospital where all of my outpatient doctors worked, but instead of stepping up and expediting my care the facility (unbenownst to me) began building a malicious case to discredit me in my medical records to cover up the mismanagement of my condition(s) now that they were aware of my rapidly declining condition.
During that ER visit I suffered numerous human rights violations and nearing the end of my visit was physically assaulted and interrogated by an on-call neurologist who posited that there was nothing neurologically wrong (because I had not yet been given a diagnosis while I had been hospitalized at the other hospital, taking bits and pieces of the incomplete record from there out of context).
Soon it became clear that he’d been called in by administration to shake me down and to try to debunk me, not only the new illness(s) yet undiagnosed, but he pointedly questioned even my established diagnoses.
This was no legitimate neuro exam and as it progressed from undue roughness to an outright beating I was 100% sure that this was outside the standard of care and that he had not come to help me, but to maliciously sabotage me. In his mind I was wasting people’s time and resources and he was bound and determined to make me pay.
After he left the room he had his resident come in alone and slam her butt down on my foot (this is a very unethical practice that is done to find out whether a patient is faking). Not only was it reckless but misplaced given that although I was weak, I had never claimed to be paralyzed nor unable to feel, so it did hurt.
To make a long story as short as I can; the sadistic neurologist who’d abused me put libelous statements into my medical records and incited his resident and others to do the same, it got passed on from doctor to doctor, ruined the good working relationship I had with two other doctors I’d seen for years.
The corporation that employed these people refused to do anything to correct the records, discipline those who acted improperly, nor to protect me and my record as I had requested from any further damage.
My case became highly political and administration itself went after me using numerous people who worked for them to carry out their corrupt agenda. I was mercilessly harrassed by letter and even got a threatening phone call, my care suffered more and more because of the firestorm of loose gossip flying around the facility about me, administration admitted they’d been reading this blog and when I wouldn’t take all this lying down they got their Chief Medical Officer to send me a letter kicking me out. (Note that this is the largest and most powerful healthcare system in Georgia).
The libel in my medical records continues to hurt my ability to obtain unbiased medical care long after I’m gone from their clinics, and thus my health continues to decline.
I’d filed all pertinent grievance procedures and went through every proper channel, but to no avail. This corrupt facility got off at every turn.
Why? Well here’s the answer in a nutshell;
1) Regulators base their investigation solely on what’s written in the record regardless of whether it’s accurate, inaccurate, or blatant lies!
2) Apparently the law has a loophole in it which says basically that a doctor or facility can get away with libel in a patient’s medical record as long as the facility’s administration answers the complaint by stating that they “find the record as written to be true and correct.” They aren’t even required to have personal knowledge of the validity or invalidity of the defamatory statements in question. They can merely say it’s true with no proof whatsoever.
The above clause in currently law directly conflicts with federal anti-discrimination laws and I argue is therefore unconstitutional. Constitutional law was supposed to override administrative policy, but it was not enforced.
In addition; the facility receives federal funding and therefore cannot legally retaliate against by refusing service to a patient for making an official grievance, yet that is exactly what they did to me.
These two key points are what regulatory agencies ignored, so it became clear to me that the law must be made much clearer than it currently is worded, and that this particular type of abuse; gaslighting and blacklisting of patients must be given it’s own designation as an unequivocal hate crime.
I have set about deeply researching this topic to find out just how common this is and a petition was written with my story and my proposed legislation which would fill the current loopholes, and now over the past few years patients who have been abused in these ways are coming out in droves!
To read, sign, and add your story to our petition please click here. Your signature and story will be auto-forwared to Secretary Sylvia Burwell of Health and Human Services Committee (US Congress). Please be as specific as you can describing exactly what happened to you, state when it happened approximately (don’t just say something vague such as “This happened to me too” or “I have been abused by doctors” or “I have been blacklisted”, tell what was said, direct quotes if possible, and what was done if there was abuse and/or medical neglect. This way statistics can be compiled about specific types of human rights violations. We need to band together as a community and continue to hold those in positions of power accountable, to insist that state and federal regulators regulate, and that these inhumane and destructive practices are brought to an end.
This is my Christmas wish; not only for myself, but for all patients that similar atrocites have happened to, and those who may become victims of this type of abuse in the future. We must change and strengthen our civil rights laws!
I’ll be participating in #Blogmas this year. Over the next few weeks I will feature 1 patient’s horrendous story on this blog every week to raise awareness of these abusive practices in medicine.
Please share and leave a comment here on each corresponding blog entry so that we can continue to raise awareness and push our public officials/legislators to enact concrete solutions now! I hope to live to see the day when not one more patient is gaslighted, blacklisted, bullied, discriminated against nor abused by the medical establishment.
What better gift is there than to make it possible for patients to obtain the respectful and compassionate care they need for their medical conditions without fear, and to give them back their dignity.
This is my Christmas wish!
Medicaid’s website disaster put many things behind schedule and just as I had feared one of them was my trip to Vanderbilt. Although my current GP did fill out the necessary paperwork this time it was Medicaid that dropped the … Continue reading
The phone rang this evening waking me from a sound sleep. It was a friend from one of my chronic illness groups on the other end. “You’ve got to hear this!”, a sense of urgency in her voice on the other end. “I thought you would want to know that Emory has done it again. This time they’re denying a 2 year old boy a kidney transplant!” She related to me the story of a family who was being blatantly discriminated against simply because the boy’s father, Anthony Dickerson, the potential donar and a match, had been jailed for a parole violation.
Initially it appeared that they were willing to work with the family and that the only stipulation holding up the life-saving surgery was that the child’s father needed to come in to have some preliminary pre-op bloodwork done on September 29th, but as the man was still in jail and could not be released by the date Emory had requested he come in, by the time he was released it seemed suddenly all bets were off.
What had started out as a relatively simple hurdle to overcome now became a growing list of demands and scrutiny made by the Emory Living Donor Transplant team; now requiring Mr. Dickerson to supply evidence of compliance with his parole officer for 3 months before his son would be considered again. The the only option now given the family was the regular transplant list. We all know that many have died without expedited transplant offered by such hospital teams, and for a young child who was born premature with malfunctioning kidneys such a wait could very likely result in his early death.
Although none of us witnessed what went on in that meeting behind closed doors, it is more likely that Emory’s top officials such as its Chief Medical Officer, whose letter to me denying me care at a crucial time; copy uploaded in a previous post, were the real ones behind these new obstacles placed in the family’s path. Emory keeps its doctors on a short leash, especially where it concerns delicate matters that might garner bad publicity for the biggest healthcare system in Georgia. There is little doubt that risk management and their legal department were consulted regarding the ramifications this situation might have for Emory, possible liability and/or possible negative impact on its public image. For all the cases that go public there are probably many more that are routinely brushed under the rug, patients too exhausted and demoralized to fight for their rights.
One might ask “Can’t they just go to another hospital for the transplant”? but in this state it’s not as simple as one would assume. Patients that are outcast from Emory’s system find themselves in an ongoing awkward situation in approaching other local doctors and hospitals for the care they need, as although there are facilities not directly owned or affiliated with Emory, there is almost always a soft connection somewhere; either that doctor or hospital utilizes Emory’s medical equipment, labs, certain clinics, or they have a “one-hand-washes-the-other” working relationship in which they give mutual referrals. This is even true with their direct competitors to some extent. Therefore this child’s father would likely face the same scrutiny at these other local facilities as at Emory, and there is no telling what has been written in the records regarding the boy’s father’s criminal record and the requirements placed on him for his son to receive the transplant any time in the future. De’Aja Asbury has created an online petition similar to the one that was created for me. The petition can be accessed at https://www.change.org/p/emory-hospital-approve-life-saving-kidney-transplant-for-2-year-old-boy-before-it-s-too-late
A local news team has covered the story. See this footage below;
At this point the family’s best chance for this child’s survival is to try to get a compassionate release for the child’s father so that they can go to an impartial hospital for the transplant, as soon as possible. They will most likely have to approach officials on the federal level in order to have a fair chance of having their request accepted. Godspeed to this child in getting the surgery he needs.
Each year Medicaid recipients in Georgia are reviewed for continuing eligibility. Several years ago Medicaid, Food Stamps, and TANF (Temporary Assistance to Needy Families) was streamlined from a very laborious system requiring a regular visit to your local branch office of DFACS; often a day-long wait in the overcrowded waitingroom, then to be called into a cubicle and asked a series of questions 3 repetitive times. This was a long and arduous and dehumanizing experience that resembled more of an interrogation than a recertification, and for those of us with disabilities, particularly chronic illnesses it was exhausting and left us feeling even more ill and in pain than when we’d left the house that morning.
The new computerized format, known as Compass that replaced this terribly inefficient dinosaur of a process was amazingly user-friendly and easy to navigate. New changes in a computer database as large as this one usually don’t go quite as smoothly and often cause more problems than they solve, but Compass was an exception. It ran relatively seamlessly for several years, and recertifications were easy to complete in a matter of minutes, no fuss, no muss, but then they had to go and fix something that wasn’t broken.
And this was when the gears came to a grinding halt. I had received a letter by mail two weeks earlier saying that it was time to recertify. It told me to go to the website to complete the online form by September 31st to keep my case open but there was no indication that the website nor its location had changed.
Then on September 18th a got a rather urgent-sounding two duplicate letters stating that the caseworker needed my bank statements and for me to go to the website to complete the online recertification form by the end of the 18th (on the day I received the letter). Surely this was a mistake, but in any case I went to the Compass site. Once there, I found a message on it stating that this particular website was no longer being used and directing recipients to another website called “Georgia Gateway”. Georgia Gate-keep would have been more apropo. As I went to log in I was told that my password was incorrect. I tried again, and then again, this time with all lowercase letters, but then I got an error message saying that I was “locked out” and to call the support phone number above.
I was pretty sure of my password but figured maybe this was just a simple case of a letter typed in wrongly and that I just needed a password re-set. This turned out to be much more complicated than I thought, and it asked 2 security questions (but only the first one actually listed a question. The second had the number 2 by it and no question but it was still a required field. It was soon clear that this was an unsolvable conundrum, as the message swore that my pet’s name was incorrect. I only have 2 pets, and neither one worked, and then there was the second non-question that they insisted I answer. Was I supposed to guess the question?
I called the number listed as their technical support line and after about 4 or 5 rounds of “options” got a message “Due to unusually high call volume our representatives cannot answer this call. Please try your call again later…Goodbye” and the phone then hung up.
I wondered if this was someone’s twisted idea of a joke, or maybe it was another of a long list of hurdles placed here by local politicians who think Medicaid should be done away with. At the time I wasn’t seriously thinking this but after more details revealed themselves I’m not so sure that was very far from the reality.
I called the tech support line back several more times in the days that followed; once or twice reaching someone who said they were just the “answering service”, knew nothing, and could only pass on my message, have someone send me a password re-set in a few minutes (never happened), and have someone return my call within 48 hours.
Next I called the caseworker who also was not answering her phone, and eventually after 48 hours had come and gone, her supervisor who was not answering her phone either.
Finally I reached someone on the technical support line who told me that creating a new account should correct the problem and that I should then be able to log in and access the necessary form, but this didn’t work either and I ran into the same problems as before. She had no idea what to tell me, only guessing that somebody must have changed my information without my knowledge and that only “Medicaid” could fix it. I told her that I thought this phone line was part of Medicaid, to which she replied that her company was really just a subcontractor. Oye vay!!! If one more person sings the praises of privatization I think I will throw them out a window! This wild goose chase I was sent on was completely unecessary and this middle-man, clearly no help at all, merely a buffer to shield the agency (Medicaid) from full accountability.
I faxed the bank statements to my Medicaid caseworker along with a coverletter asking that she confirm that she got them, and to tell her that I had no way as of yet to acess the website and complete the form, and asking that she honor the first letter I’d received listing the deadline of September 31st, (not the 18th, which was a virtual impossibility).
I told her I didn’t know how long it would take for this to be straightened out but that I did not want to be penalized and lose my benefits because of a technical error that I had no control over. Again I called the technical support line and got a female representative who told me that she’d have someone call me back within 48 hours. I’d heard that line before and wasn’t sure whether to believe it this time. I asked if she was sure somebody would call me back and reiterated how vital it was that I not lose my benefits, as I have doctors appointments coming up.
Then finally the morning of Sept. 21st at around 8:00 AM I got a call from a woman in the department that handled the back end of the site who informed me that the reason the website wouldn’t accept any of my identifying information is that they were supposed to have transferred data over from one site to the other and they had failed to do that on 4,000 Medicaid recipients.
Apparently nobody was answering their phones because this had caused a major crisis and they were being flooded with calls from clients who were under the gun to recertify and no way to do it. She seemed genuinely not to know how or why this happened (I had the impression she was probably in some supervisory position; not on the team doing the data transfer). She offered to send me a paper form by email and told me I could either take it in to DFACS or fax it to the caseworker.
Since I really had no way to get there and am not well enough to sit up for hours in a crowded waitingroom I opted for the latter. I got the attachment, filled it out, and faxed it in that day along with a second coverletter asking for confirmation that everything was complete. I don’t know yet what the outcome will be, but I just hope the problems with the website do not extend to the entire database and that the records on each recipient’s case are still in the system. If the entire system was updated then the problem might be alot harder to fix, potentially cutting thousands of people off Medicaid erroneously at the most crucial time.
A search online made me a little dubious, as it reveals that Medicaid in Georgia has been under threat for some time. Its Chief, Linda Wiant and Deputy Chief , Lynnette Rhodes both suddenly resigned in August without explanation.
As an aside it is interesting to note that in 2017 nationwide 57 major hospital officials have tendered their resignations. Could there possibly be a correlation between fiscal trends in Medicaid (and possibly Medicare as well) and the high turnover among hospital/health corporation CEOs? Possibly. We’ll have to see how this shakes out and whether their replacements are pro-patient or pro-corporation.
Due to all the confusion cause by the new Gateway system it’s anybody’s guess as to whether recerts were processed or not. My son had to go into his local DFACS office to get his straightened out as he doesn’t have a fax machine and even after meeting with a caseworker in-person still needs to go back a second time. Nobody is answering their phone nor returning phone calls. I did finally reach the supervisor of my caseworker’s supervisor by email and he merely forwarded my email to the caseworker who wasn’t responding in the first place. That was about 1 week ago and she still has not confirmed she has everything I faxed her.
The worst by-product of all of this is that after my current GP finally got the paperwork done and I was scheduled to go to Vanderbilt on October 4th, I had to reschedule because Medicaid (predictably) failed to notify my as to whether the doctor’s requests were approved for me to be seen out of state on my Georgia Medicaid (Secondary to Medicare), and for the agency affilliated with Medicaid to cover my travel expenses. Seeing as there are only 5 Autonomic specialists at Vanderbilt’s specialty clinic, they are often booked up for several months in advance, so this has set me back once again. Now I will have to wait until January. I just hope that Medicaid will honor my doctors’ paperwork with the small added change of the date and not require her to do it all over again. It’s hard enough to get most doctors to do it once, let alone twice!
Nobody seems to know how or why this snafoo happened nor who exactly is responsible for fumbling the ball, (or Medicaid’s not telling). Mainstream news sources have been surprisingly silent about this rather large mistake, but I hope that some of them will take an interest and do follow-up news stories as more information becomes available.
On a happier note, there is some hope on the horizon with a few new developments but I’ll cover that in a seperate post.
Just like my refrigerator which has finally gone caput after intermittantly working and not, my body has persisted in giving signals which cannot be overlooked forever. Finally, finally there has been a break in the case! I received a call … Continue reading
The holidays have come and gone with a whimper, it’s now 2017, and my medical care’s still stalled a year after the abuse incident in Emory’s ER, and a year and a half since I first reported the new neurological … Continue reading
All too often the mistreatment of patients with disabilities/medical conditions/chronic illness is regarded by society as a lesser offense (or not an offense at all) and its survivors’ resulting trauma not acknowledged by the general public, including those agencies whose … Continue reading
I’ve been so busy working on the out-of-state referrals to upper level clinics and just living my life to notice why I’d been crying more lately and thinking more about the incident at the ER on December 3, 2015 and … Continue reading